Jess22
03-10-2006, 10:15 PM
Hi Everyone and God's Blessings to all of you. It has been awhile since I wrote, it has been a very terrible time for the last week but every chance I have had I have read all of your threads and gained so much strength... I had to have an ambulance take my mom to the hospital on wed. she was completely out of control in the fact that I could not contain her and she kept trying to leave. It was a terrible expeirance for her as well as me. After arriving at the hospital ( I had changed her doctor to a differant doctor ) he had her placed in a geriatric
behavior unit in a better hospital. He wanted to see if they could regulate her med's and get her on the proper med's before going any farther with any decisions. I'am thinking of placing her in a nh because of her behavior and that she cant seem to adjust to caregivers in her home or here or anywhere. Today the psychiatrist says she is in stage 4 alzs, and that this is the absolute worst stage for the family and her because she has still many lucid moments. He says she is very very independant (DUH) and that is where the struggle is.... They feel they can line out her meds already changed some and she is beginning to calm down some. They had to give her injections several times at first because she was hitting staff and beating on the doors... I have not been able to visit her as of yet because they felt it would be very hard for her but they have assured me she has recieved many hugs and it seems to be a good place and well respected. On the other hand I feel absolutely sick all I have done is cry and feel like dying. Im beginning to feel that IM physchotic myself and need to be placed somewhere . My dh is I know so tired of this journey bound to be because he has not had a wife of any caliber for more than 1year now. I have the one sister who has not helped and so we have done most of all her care only had caregivers for a month and that has been awful, constant crying, constant calling me at work, kicking people out and eratic behavior. Today I went to the best nh in our area supposedly and they say they will be glad to have mom but they cant keep her if she becomes to wandering or combative they do not have a locked unit strictly for alz. so it could mean sending her back to another facility... HELP!!!!!!!!!!!! IM considering bringing her home with me agian and hiring around the clock care here until she reaches the fifth stage where she may no longer know where she is..... IM so confused and feel so desperate it's my little 4ft. 10in. bundle of pure joy that I love and have lost and I cant bear it....... My mommie is my best friend and Im sooooo missing her today. Tonight I was able to talk to her on the phone I can tell she is drugged and yet she said I love you jesse and I want to come home where is my baby??? (her Dog) it just breaks my heart Im poa and have to make the decision someone please help dh says we can bring her here and do whatever make me feel best but IM not sure anymore what is best................. any replies helpful.....................
behavior unit in a better hospital. He wanted to see if they could regulate her med's and get her on the proper med's before going any farther with any decisions. I'am thinking of placing her in a nh because of her behavior and that she cant seem to adjust to caregivers in her home or here or anywhere. Today the psychiatrist says she is in stage 4 alzs, and that this is the absolute worst stage for the family and her because she has still many lucid moments. He says she is very very independant (DUH) and that is where the struggle is.... They feel they can line out her meds already changed some and she is beginning to calm down some. They had to give her injections several times at first because she was hitting staff and beating on the doors... I have not been able to visit her as of yet because they felt it would be very hard for her but they have assured me she has recieved many hugs and it seems to be a good place and well respected. On the other hand I feel absolutely sick all I have done is cry and feel like dying. Im beginning to feel that IM physchotic myself and need to be placed somewhere . My dh is I know so tired of this journey bound to be because he has not had a wife of any caliber for more than 1year now. I have the one sister who has not helped and so we have done most of all her care only had caregivers for a month and that has been awful, constant crying, constant calling me at work, kicking people out and eratic behavior. Today I went to the best nh in our area supposedly and they say they will be glad to have mom but they cant keep her if she becomes to wandering or combative they do not have a locked unit strictly for alz. so it could mean sending her back to another facility... HELP!!!!!!!!!!!! IM considering bringing her home with me agian and hiring around the clock care here until she reaches the fifth stage where she may no longer know where she is..... IM so confused and feel so desperate it's my little 4ft. 10in. bundle of pure joy that I love and have lost and I cant bear it....... My mommie is my best friend and Im sooooo missing her today. Tonight I was able to talk to her on the phone I can tell she is drugged and yet she said I love you jesse and I want to come home where is my baby??? (her Dog) it just breaks my heart Im poa and have to make the decision someone please help dh says we can bring her here and do whatever make me feel best but IM not sure anymore what is best................. any replies helpful.....................
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janeslk
03-10-2006, 10:44 PM
Wow, what a horrible ordeal for you. Your mother's problems remind me of a woman who is in the AD lockdown unit with my FIL. She was screaming and fighting when she was taken to a regular nursing home by her daughter. She fought and she was strong. She was then taken to the lockdown unit and has become totally different. She smiles and seems happy with everyone and everything there. I suppose the drugs have something or maybe a lot to do with it, but she does seem remarkable content and is very active physically.
I don't think there is a point in AD care when you can go back and it sounds as if you have tried the caregivers route. Another friend has a mother who has dementia and she threatened her as well as threatened to take her own life. They found the proper mix of drugs and she was able to be in an assisted care facility.
I do hope you find the answer that is right for you.
Jane
I don't think there is a point in AD care when you can go back and it sounds as if you have tried the caregivers route. Another friend has a mother who has dementia and she threatened her as well as threatened to take her own life. They found the proper mix of drugs and she was able to be in an assisted care facility.
I do hope you find the answer that is right for you.
Jane
BarbaraH
03-10-2006, 10:59 PM
(((((((((((((((Jess)))))))))))))))),
Bless your heart! I know just what you're enduring and I'll say again, you've done the right thing in placing your mother where she can get meds to help her rest and relax, to be calm and to enjoy her life to some extent. You've done the right thing.
When I was enduring what you are, I was in VA and my DH and sons were in TX. I'd arranged a month away from my job to be with Mom in January - thinking she was 85 and I could help her during the winter weather. I had no clue that when she was at my home for Christmas that things would be so bizarre and that 3 days into my visit to her home, I'd be fighting her at 11pm so she couldn't get the car keys and go out the door with 8" of snow on the ground. She didn't know me. She didn't understand that a black sky meant night (how do you forget THAT???) and she didn't believe me when I told her it was 11pm and showed her a clock. I finally got the keys and got her into bed, but she was so angry that she slept in her clothes. It was awful. I have never cried so much. The next morning, I called cousins and Mom's sister and said I was moving her to an assisted living facility before I went back to TX. All were upset, but they could tell how upset I was and didn't argue. 2 weeks later, my cousins and I moved Mom into the chosen ALF. She cried. I cried. I worked off my guilt stenciling around her LR, DR, bedroom and kitchen backsplash. I hadn't heard of NO guilt then. I also slept on her couch for her 1st two nights there. My DH was so concerned about me that he flew his mother to TX to care for the kids and he flew to VA to be with me.
7 months later, I, too, was asked to stay away for a week as Mom adjusted to a locked unit after she wandered away from the ALF where she'd lived for just 7 months. In that time, she'd benefitted greatly from an anti-depressant pill daily and a sleeping pill each bedtime. Staying away wasn't easy and I did call daily to check on Mom. When I visited again, Mom was glad to see me although she'd forgotten me as her daughter months before. She was calm, happy, and in no way aggitated. She enjoyed the simple activities that took place each afternoon.
Jess, you simply cannot care for your mother as she needs care 24/7 now. You cannot have the needed medicines at hand in your home. Your mother will not cooperate with you as she will with medical staff because that's just the way it is - whether she still remembers you or not. Sad, but true.
My sweet little mother would have been horrified and heartbroken if she'd known how she was behaving. My beloved mother was already gone and nothing I could do, say, pray, wish, or hope could bring her back. Someone who was worried her own mother wouldn't know where she was had taken her place.
Jess, there's only one thing worse than losing a parent to Alzheimers and that is to lose yourself, too. Your mother would not want you to ruin your health, to endanger your marriage, to frighten and worry your children, and to disrupt every aspect of your life and home in order to care for her. You know that, even if she didn't have a chance to tell you.
Forgive yourself that you aren't Superwoman and cannot cure Alzheimers. Welcome to the club. I couldn't do it. Martha couldn't, Sally couldn't and the list goes on. All you can do is what you already did. You did well. It's the turn of the experts now.
When your mother has settled down, go visit her. Take lotion to rub on her hands and talk to her about the events in the family and about town. She'll enjoy that. Keep your visit brief and upbeat. Have kleenex in your pocket and in the car for the tears that may go home with you.
Your mother is where she can get the best care from a staff that goes home after 8 hours and a rested staff comes to work. Please let her stay there. As one only child and responsible daughter to another, I give you permission. It's okay. It's not what you'd choose, but it's the best of all of the choices. Live your life, too.
Sorry that this is a book, but I hope you've heard me. I care about you.
Blessings - Barbara :)
Bless your heart! I know just what you're enduring and I'll say again, you've done the right thing in placing your mother where she can get meds to help her rest and relax, to be calm and to enjoy her life to some extent. You've done the right thing.
When I was enduring what you are, I was in VA and my DH and sons were in TX. I'd arranged a month away from my job to be with Mom in January - thinking she was 85 and I could help her during the winter weather. I had no clue that when she was at my home for Christmas that things would be so bizarre and that 3 days into my visit to her home, I'd be fighting her at 11pm so she couldn't get the car keys and go out the door with 8" of snow on the ground. She didn't know me. She didn't understand that a black sky meant night (how do you forget THAT???) and she didn't believe me when I told her it was 11pm and showed her a clock. I finally got the keys and got her into bed, but she was so angry that she slept in her clothes. It was awful. I have never cried so much. The next morning, I called cousins and Mom's sister and said I was moving her to an assisted living facility before I went back to TX. All were upset, but they could tell how upset I was and didn't argue. 2 weeks later, my cousins and I moved Mom into the chosen ALF. She cried. I cried. I worked off my guilt stenciling around her LR, DR, bedroom and kitchen backsplash. I hadn't heard of NO guilt then. I also slept on her couch for her 1st two nights there. My DH was so concerned about me that he flew his mother to TX to care for the kids and he flew to VA to be with me.
7 months later, I, too, was asked to stay away for a week as Mom adjusted to a locked unit after she wandered away from the ALF where she'd lived for just 7 months. In that time, she'd benefitted greatly from an anti-depressant pill daily and a sleeping pill each bedtime. Staying away wasn't easy and I did call daily to check on Mom. When I visited again, Mom was glad to see me although she'd forgotten me as her daughter months before. She was calm, happy, and in no way aggitated. She enjoyed the simple activities that took place each afternoon.
Jess, you simply cannot care for your mother as she needs care 24/7 now. You cannot have the needed medicines at hand in your home. Your mother will not cooperate with you as she will with medical staff because that's just the way it is - whether she still remembers you or not. Sad, but true.
My sweet little mother would have been horrified and heartbroken if she'd known how she was behaving. My beloved mother was already gone and nothing I could do, say, pray, wish, or hope could bring her back. Someone who was worried her own mother wouldn't know where she was had taken her place.
Jess, there's only one thing worse than losing a parent to Alzheimers and that is to lose yourself, too. Your mother would not want you to ruin your health, to endanger your marriage, to frighten and worry your children, and to disrupt every aspect of your life and home in order to care for her. You know that, even if she didn't have a chance to tell you.
Forgive yourself that you aren't Superwoman and cannot cure Alzheimers. Welcome to the club. I couldn't do it. Martha couldn't, Sally couldn't and the list goes on. All you can do is what you already did. You did well. It's the turn of the experts now.
When your mother has settled down, go visit her. Take lotion to rub on her hands and talk to her about the events in the family and about town. She'll enjoy that. Keep your visit brief and upbeat. Have kleenex in your pocket and in the car for the tears that may go home with you.
Your mother is where she can get the best care from a staff that goes home after 8 hours and a rested staff comes to work. Please let her stay there. As one only child and responsible daughter to another, I give you permission. It's okay. It's not what you'd choose, but it's the best of all of the choices. Live your life, too.
Sorry that this is a book, but I hope you've heard me. I care about you.
Blessings - Barbara :)
Sandyspen
03-10-2006, 11:56 PM
Jess,
I'm so sorry for what you've been through the last few days. It is so traumatic and devastating. I know exactly how you feel. I'm only starting the 3rd week since placing my mom in a family care home. Just 3 weeks ago, I was here, feeling just like you, thinking my heart would never heal and I would never stop hurting or crying.
Everything Barbara says is true. Without her and the other ladies here, I don't know what I'd have done. No one understood how I felt like they did.
It does get better, though. The medication will help and your mom will calm down. Yesterday, for the first time, I had a pleasant visit with my mom. She did not ask to go home and smiled happily when I left as she went off to be with her friends. It was such a relief. Like a weight lifted from me.
You don't realize how much stress you've been under until you allow the doctors to take responsibility for her care. They know how to take care of her, they're trained for that. You've done the very best you can for as long as you can. Now, you need to take care of yourself.
I cried for 2 days when I left my mom. I know it's heartbreaking. But after that, I started to feel better, little at a time. I started to think of things I could do for her there. When I could visit. How I could fix her room. What gifts to take. There will be lots of things you can do for your mom, and lots of times to see her. The situation will be different, but much healthier for both of you.
It's a much better way for both of you. I worried myself sick when mom was here, all the chaos......I was so afraid she'd have a stroke from all the raging. You'll see, Jess. When her meds are adjusted and you get some rest, you'll know that you've done what is best for both your mom and your family and YOU.
Take care of youself. Rest as much as you can. Come here as often as you need to. We care about you!
I'm so sorry for what you've been through the last few days. It is so traumatic and devastating. I know exactly how you feel. I'm only starting the 3rd week since placing my mom in a family care home. Just 3 weeks ago, I was here, feeling just like you, thinking my heart would never heal and I would never stop hurting or crying.
Everything Barbara says is true. Without her and the other ladies here, I don't know what I'd have done. No one understood how I felt like they did.
It does get better, though. The medication will help and your mom will calm down. Yesterday, for the first time, I had a pleasant visit with my mom. She did not ask to go home and smiled happily when I left as she went off to be with her friends. It was such a relief. Like a weight lifted from me.
You don't realize how much stress you've been under until you allow the doctors to take responsibility for her care. They know how to take care of her, they're trained for that. You've done the very best you can for as long as you can. Now, you need to take care of yourself.
I cried for 2 days when I left my mom. I know it's heartbreaking. But after that, I started to feel better, little at a time. I started to think of things I could do for her there. When I could visit. How I could fix her room. What gifts to take. There will be lots of things you can do for your mom, and lots of times to see her. The situation will be different, but much healthier for both of you.
It's a much better way for both of you. I worried myself sick when mom was here, all the chaos......I was so afraid she'd have a stroke from all the raging. You'll see, Jess. When her meds are adjusted and you get some rest, you'll know that you've done what is best for both your mom and your family and YOU.
Take care of youself. Rest as much as you can. Come here as often as you need to. We care about you!
Martha H
03-11-2006, 09:16 AM
Dear Jess,
Now that you have taken the first stop, stick to this path. Taking her back to your house, even with around the clock care, will so disrupt and confuse your family life that it will do nobody any good in the end.
Take my Mom as an example. At home with me she was unhappy and felt restricted by the aides who came in during part of my work day. She hated them and hated me for insiting we had them. The agency changed her aide once, with no explanation, and then she was absent several days and we got complete strangers who didn't even know the neighborhood - and one of their tasks was to take my mom by public bus to her senior center. Mom being in Alzheimer stage 4, did not remeber the way. One of the substiute aides walked with her in the wrong direction for ???? how long, and then returned to the house to call the agency when neither of them could find the bus stop.
On that day I was able to leave work extra early and came home at 11:30 AM (usually it was 2:30) and found a totally distraught mother and an angry aide YELLING at Mom.
Home Health Aides are often an additional problem not a solution.
Now Mom is in a NH and has a pretty good life.
She is now stage 5 to 6 and less able to worry, protest or think.
If you can find a NH with an Alzheimer unit, then your Mom will not have to be moved again, but even a temporary placement is better than none at all. I strongly advise NOT to take her home again.
Love and prayers,
Martha
Now that you have taken the first stop, stick to this path. Taking her back to your house, even with around the clock care, will so disrupt and confuse your family life that it will do nobody any good in the end.
Take my Mom as an example. At home with me she was unhappy and felt restricted by the aides who came in during part of my work day. She hated them and hated me for insiting we had them. The agency changed her aide once, with no explanation, and then she was absent several days and we got complete strangers who didn't even know the neighborhood - and one of their tasks was to take my mom by public bus to her senior center. Mom being in Alzheimer stage 4, did not remeber the way. One of the substiute aides walked with her in the wrong direction for ???? how long, and then returned to the house to call the agency when neither of them could find the bus stop.
On that day I was able to leave work extra early and came home at 11:30 AM (usually it was 2:30) and found a totally distraught mother and an angry aide YELLING at Mom.
Home Health Aides are often an additional problem not a solution.
Now Mom is in a NH and has a pretty good life.
She is now stage 5 to 6 and less able to worry, protest or think.
If you can find a NH with an Alzheimer unit, then your Mom will not have to be moved again, but even a temporary placement is better than none at all. I strongly advise NOT to take her home again.
Love and prayers,
Martha
angel_bear
03-11-2006, 10:46 PM
As someone who has been the caregiver and put up with some pretty odd behaviour and some pretty disgusting habits and some foul moods, and who has actually seen nursing homes first hand, I would like to put in my 2 cents worth.
In the nursing home, the charges dementia varies. In my ex-charges nursing home the 2 Dementia specific wings, there are 20 residents. Some of them .. wow .. you think "Why are they here? They're so NORMAL" and they lull you into a false sense of security because it's so EASY to believe good, normal, typical behaviour. Others .. are restrained either in a chair or bed, and others are chemically restrained at night. Not to keep the peace, but to keep them and the other residents SAFE. (not to mention visitors!)
They've got some male residents who would like nothing better than to knock each others blocks off .. and they've got some female residents who would like nothing better than to sleep with every male resident. They've got other's who are obsessive compulsive (exacerbated by the dementia), some are fully incontinent, other's are fine.
It's a real across the board range of dementia and it's variations and it's levels.
They've got family members who do nothing but yell at the staff for their loved ones deterioration, but are unwilling to make any kind of committment, and of course, with the 'system' everything is stretched to capacity. Yes, sometimes our charges have to wait for their cup of tea because the staff are trying to toilet another. You would be amazed at the behaviours that come out when they don't have their cuppa!! LOL
In the NH the 20 charges however, are:
* Dry
* Safe
* Fed well (cup of tea at any given time of the day, Breakfast, morning tea, lunch, afternoon tea, dinner, supper)
* 24/7 doctor support
* Trained staff 24/7 (although sometimes you might have to wait)
* Dementia Specific - Bed Sensors, Swipe card entry/exit doors, circular gardens, diversional therapy, concerts, Movie days, reminiscing therapy
* They can go out with family at ANY time, there are no restraints
And .. after a settling in time, they are happy. They don't have to keep up the pretense of 'normal'. Dementia victims KNOW there is something wrong and they will fight it tooth and nail, and they will fight anybody who comes near them who reminds them of their 'failures' (bad word, can't think of another at the moment). They loose all inhibitions of a personal nature, are happy to be toileted, are happy to be kissed when it's bedtime, who are happy to have a waltz around the activity area, who are OK with the whole deal .. it's the FAMILY that have the problems .. not the dementia person ~ !!!
The transition period of being at 'home' to being in a 'home' is horrible for everybody. There is so much change going on with the dementia victim, and they do NOT cope well with any kind of change. It's a grieving time for the family for 'what was' and the unknown 'what to come' thoughts. But after the intial horrible period, things settle down and ultimately, the dementia victim is happy.
It's the BEST thing to happen as long as you choose the RIGHT nursing home. And you will notice a HUGE difference in yourself as your charge settles into new routines. You will be able to remember good times more easily, yes, bad things happened, but they tend to fade into the background. You will have time to recharge your batteries, so visits won't take it out of you as much and you will have time to ENJOY their company, and they yours !!
Make your decision, stick to it, and all will work itself out .. I promise!
Hugs
Sally
In the nursing home, the charges dementia varies. In my ex-charges nursing home the 2 Dementia specific wings, there are 20 residents. Some of them .. wow .. you think "Why are they here? They're so NORMAL" and they lull you into a false sense of security because it's so EASY to believe good, normal, typical behaviour. Others .. are restrained either in a chair or bed, and others are chemically restrained at night. Not to keep the peace, but to keep them and the other residents SAFE. (not to mention visitors!)
They've got some male residents who would like nothing better than to knock each others blocks off .. and they've got some female residents who would like nothing better than to sleep with every male resident. They've got other's who are obsessive compulsive (exacerbated by the dementia), some are fully incontinent, other's are fine.
It's a real across the board range of dementia and it's variations and it's levels.
They've got family members who do nothing but yell at the staff for their loved ones deterioration, but are unwilling to make any kind of committment, and of course, with the 'system' everything is stretched to capacity. Yes, sometimes our charges have to wait for their cup of tea because the staff are trying to toilet another. You would be amazed at the behaviours that come out when they don't have their cuppa!! LOL
In the NH the 20 charges however, are:
* Dry
* Safe
* Fed well (cup of tea at any given time of the day, Breakfast, morning tea, lunch, afternoon tea, dinner, supper)
* 24/7 doctor support
* Trained staff 24/7 (although sometimes you might have to wait)
* Dementia Specific - Bed Sensors, Swipe card entry/exit doors, circular gardens, diversional therapy, concerts, Movie days, reminiscing therapy
* They can go out with family at ANY time, there are no restraints
And .. after a settling in time, they are happy. They don't have to keep up the pretense of 'normal'. Dementia victims KNOW there is something wrong and they will fight it tooth and nail, and they will fight anybody who comes near them who reminds them of their 'failures' (bad word, can't think of another at the moment). They loose all inhibitions of a personal nature, are happy to be toileted, are happy to be kissed when it's bedtime, who are happy to have a waltz around the activity area, who are OK with the whole deal .. it's the FAMILY that have the problems .. not the dementia person ~ !!!
The transition period of being at 'home' to being in a 'home' is horrible for everybody. There is so much change going on with the dementia victim, and they do NOT cope well with any kind of change. It's a grieving time for the family for 'what was' and the unknown 'what to come' thoughts. But after the intial horrible period, things settle down and ultimately, the dementia victim is happy.
It's the BEST thing to happen as long as you choose the RIGHT nursing home. And you will notice a HUGE difference in yourself as your charge settles into new routines. You will be able to remember good times more easily, yes, bad things happened, but they tend to fade into the background. You will have time to recharge your batteries, so visits won't take it out of you as much and you will have time to ENJOY their company, and they yours !!
Make your decision, stick to it, and all will work itself out .. I promise!
Hugs
Sally
LuvMyLilDoggie
03-11-2006, 11:43 PM
Hi Jesse! All of these ladies have given you excellent advice. So I really have nothing else to add except this suggestion. Look back on the threads that Sandyspen posted on from about a month ago. Then look again at the post she made here. It's AMAZING the progress she's made in these past few weeks. She was feeling just like you. And now that her mom is safe and sound in a place where professionals care for her, Sandy is now able to relax and has let go of the guilt. Martha was much the same way with her mom as was Barbara. And Sally also went through similar feelings with her ex-charge. I've not had to face that yet with my dad so I can't offer my experiences. But I can say that I've seen AMAZING (all positive) changes in those here who have gone through what you're going through now. These ladies (who by their own admission said they at one time or another felt they were going insane) are some of the wisest people I've come across. Take their word for it. It's the right thing to do. You have to take care of yourself FIRST if you want to be able to help your mom.
Think back 20 years. What would your mom have said to you then if she knew that you were neglecting yourself to care for her? If she had a crystal ball, what would she have said?
Love, Barb
Think back 20 years. What would your mom have said to you then if she knew that you were neglecting yourself to care for her? If she had a crystal ball, what would she have said?
Love, Barb
ToBeFreeToRoam
03-12-2006, 01:32 AM
Hi Jesse,
I do not have much to add. Barb said, what I could have said, if I had just thought of it!!! :> I am in sort of the same position as she is. My mom has dementia and uncontrolled diabetes. My dad has alzheimers and parkinsons. They both live by theirselves in their home and take care of each other, with my care, my sisters help and my husband and my niece. I know it will come soon enuf, that I will be in your position. I am not looking forward to it, but I am working behind the scenes to eventually make it happen. I need, they need, my sister, my husband and anyone who cares about them, need for them to move within the next year. Either to an ASL, or Alzheimers or NH. Or some combination of those, between them. I hope they can both be on the same property.
I think that you and the others who have taken care of their loved ones, by living with them, or seeing them every single day, as the bravest and strongest caregivers of us all! I could never live with my parents. If one has to go into a home, a hospital or somewhere for a few days, I would take the other one into my home. But, for no longer than 1 month! They would be - one or both - signed up for one of the places that I have visited and liked. I know, from talking to the ladies on this board, that is the best place for them. So, please do not take your mom back into your home. For your sake and your moms sake!!!!! I personally think that it would be best for all of you! Mentally and physically!
Take care and try not to stress to much.
Love, Wannabe
I do not have much to add. Barb said, what I could have said, if I had just thought of it!!! :> I am in sort of the same position as she is. My mom has dementia and uncontrolled diabetes. My dad has alzheimers and parkinsons. They both live by theirselves in their home and take care of each other, with my care, my sisters help and my husband and my niece. I know it will come soon enuf, that I will be in your position. I am not looking forward to it, but I am working behind the scenes to eventually make it happen. I need, they need, my sister, my husband and anyone who cares about them, need for them to move within the next year. Either to an ASL, or Alzheimers or NH. Or some combination of those, between them. I hope they can both be on the same property.
I think that you and the others who have taken care of their loved ones, by living with them, or seeing them every single day, as the bravest and strongest caregivers of us all! I could never live with my parents. If one has to go into a home, a hospital or somewhere for a few days, I would take the other one into my home. But, for no longer than 1 month! They would be - one or both - signed up for one of the places that I have visited and liked. I know, from talking to the ladies on this board, that is the best place for them. So, please do not take your mom back into your home. For your sake and your moms sake!!!!! I personally think that it would be best for all of you! Mentally and physically!
Take care and try not to stress to much.
Love, Wannabe
Jess22
03-12-2006, 04:33 PM
Hello Everyone,
Thanks so much for all of your responses, Barb, I cried the whole time I was reading your thread.. very helpful. Martha, you always seem to be the strength here and so thanks. To each and everyone of the rest of you it brought tears to my eyes and peace in my heart to hear your encouraging words. Last night DH and I went to the behavior facility to visit mother and she was standing at the nurses desk with her armful of clothes saying she had to go home when we walked in the door. She saw DH and warmed up pretty quickly. Took a little longer with me, but eventually did and so we had a pleasant two hours together. I was able to bathe her and change her clothing and one of the nurse aids had already washed and fixed her hair and so she felt much better when she was all cleaned up. She kept telling me she needed to go home and talked pretty crazily but other than that there was no crying and begging and she seemed very calm on this new meds. While I was there she wanted to go to her room and lay down and kissed me goodbye and told me to go on home she would see me tommorow.
After waiting a little while DH and I left and today the nurse told me mom slept 10 straight hours!!! :) We were going back this afternoon before we made the hour drive home but the nurse said this morning she was doing so well 2 days now without any aggression, and that mom has bonded with one of the other little elderly ladies with dementia. They have been walking all day holding arms and sitting and talking eating together etc. She even said mom had cleaned all the tables and swept her room and Tildies room for her. They felt it would be better if I waited a few more days before another visit since this is the first time since being there she has showed any socialization. That was along drive home............... The nurses seem to think that if mom goes to the NH I have chosen that with the first few days adjusting being hard that she will begin to adjust and bond with other ladies etc. like herself and possibly mom will do okay, she does need 24/7 clock care now. Tommorow I will be speaking to her social worker at the behavioral center and getting more info on their opinions. At this point I agree with you all that it is better for me to continue forward and not bring her home agian. It is very sad for me to think she will not be at her home anymore a place where she cherished and that her little dog will no longer be with her which she cared for so much but if I continue to dwell on those things I will forever stay in the bed and not recover. I agree also that she would not ever want me to give up my life, dh or the relationships of my own children whom I spend very little time with anymore, and so somehow I must begin to get her settled and then try to regain some of my normalcy back in my own life and try to salvage my marriage with DH. He has been on the back burner for sooooo long now most men would have jumped ship along time ago. This has been going on two years now with mom non stop and prior I spent two years for dad who had lung cancer so a total of almost four years of constant caregiving has taken it's toll on all of us. He reminded me this morning that "WE" are "ALL" hurting in this situation. He and I have been married 28 yrs. and he loves mom also....... wow that hurt to realize I have been so focused on mom and my own feelings I forgot anyone's feelings but mine. So I will try to move forward and take one day at a time.I still feel so much pain and so much loss but hopefully as you all have said it will begin eventually to allow myself some time for a life agian. Thanks agian to all of you this board has saved my life literally the last few weeks even though I dont always write I read always and pray for all............. jess
Thanks so much for all of your responses, Barb, I cried the whole time I was reading your thread.. very helpful. Martha, you always seem to be the strength here and so thanks. To each and everyone of the rest of you it brought tears to my eyes and peace in my heart to hear your encouraging words. Last night DH and I went to the behavior facility to visit mother and she was standing at the nurses desk with her armful of clothes saying she had to go home when we walked in the door. She saw DH and warmed up pretty quickly. Took a little longer with me, but eventually did and so we had a pleasant two hours together. I was able to bathe her and change her clothing and one of the nurse aids had already washed and fixed her hair and so she felt much better when she was all cleaned up. She kept telling me she needed to go home and talked pretty crazily but other than that there was no crying and begging and she seemed very calm on this new meds. While I was there she wanted to go to her room and lay down and kissed me goodbye and told me to go on home she would see me tommorow.
After waiting a little while DH and I left and today the nurse told me mom slept 10 straight hours!!! :) We were going back this afternoon before we made the hour drive home but the nurse said this morning she was doing so well 2 days now without any aggression, and that mom has bonded with one of the other little elderly ladies with dementia. They have been walking all day holding arms and sitting and talking eating together etc. She even said mom had cleaned all the tables and swept her room and Tildies room for her. They felt it would be better if I waited a few more days before another visit since this is the first time since being there she has showed any socialization. That was along drive home............... The nurses seem to think that if mom goes to the NH I have chosen that with the first few days adjusting being hard that she will begin to adjust and bond with other ladies etc. like herself and possibly mom will do okay, she does need 24/7 clock care now. Tommorow I will be speaking to her social worker at the behavioral center and getting more info on their opinions. At this point I agree with you all that it is better for me to continue forward and not bring her home agian. It is very sad for me to think she will not be at her home anymore a place where she cherished and that her little dog will no longer be with her which she cared for so much but if I continue to dwell on those things I will forever stay in the bed and not recover. I agree also that she would not ever want me to give up my life, dh or the relationships of my own children whom I spend very little time with anymore, and so somehow I must begin to get her settled and then try to regain some of my normalcy back in my own life and try to salvage my marriage with DH. He has been on the back burner for sooooo long now most men would have jumped ship along time ago. This has been going on two years now with mom non stop and prior I spent two years for dad who had lung cancer so a total of almost four years of constant caregiving has taken it's toll on all of us. He reminded me this morning that "WE" are "ALL" hurting in this situation. He and I have been married 28 yrs. and he loves mom also....... wow that hurt to realize I have been so focused on mom and my own feelings I forgot anyone's feelings but mine. So I will try to move forward and take one day at a time.I still feel so much pain and so much loss but hopefully as you all have said it will begin eventually to allow myself some time for a life agian. Thanks agian to all of you this board has saved my life literally the last few weeks even though I dont always write I read always and pray for all............. jess
BarbaraH
03-12-2006, 04:59 PM
Dear Jess,
Hurray! I'm so glad that your mother has already begun to benefit from the meds and to settle down, making friends, and relaxing. Isn't it a gift to see that your mother is better than you'd have guessed could be possible? Still ditsy, of course, but she's at peace.
What a difficult and heartbreaking 4 years you've had. I cannot imagine how utterly draining the physical effort has been, not to mention the emotional toll. (((((hugs)))) Let the healing begin.
I hope the way back to a normal life is an easy transition. Your family and friends will certainly be glad to have you back! You'll flourish again with proper sleep, good nutrition, and few worries. Your mother is well cared for.
One other word from my experience, whether your mother continues to live an hour away or can move to a near-by facility, do not plan to visit her daily. Your mother won't know if you've been there or not and you have a life of your own. I do hope she can be closer to your home just for convenience.
Whew! What a rollercoaster you've been on for far too long. You deserve a vacation!!!!!!!!!!!!!! :D
Wishing you well - Barbara :)
Hurray! I'm so glad that your mother has already begun to benefit from the meds and to settle down, making friends, and relaxing. Isn't it a gift to see that your mother is better than you'd have guessed could be possible? Still ditsy, of course, but she's at peace.
What a difficult and heartbreaking 4 years you've had. I cannot imagine how utterly draining the physical effort has been, not to mention the emotional toll. (((((hugs)))) Let the healing begin.
I hope the way back to a normal life is an easy transition. Your family and friends will certainly be glad to have you back! You'll flourish again with proper sleep, good nutrition, and few worries. Your mother is well cared for.
One other word from my experience, whether your mother continues to live an hour away or can move to a near-by facility, do not plan to visit her daily. Your mother won't know if you've been there or not and you have a life of your own. I do hope she can be closer to your home just for convenience.
Whew! What a rollercoaster you've been on for far too long. You deserve a vacation!!!!!!!!!!!!!! :D
Wishing you well - Barbara :)
Martha H
03-12-2006, 06:12 PM
I second the motion! Go on vacation with your DH and relax!
My brother also finally reduced his visits to Mom to 3 or 4 a week (still too much in my opinion.) He stays away all weekend and does things with his family then. He usually goes Mon, Tues, Wed and Friday. Thursdays he sets aside for other things - so he is also gradually getting his life back.
From the time I left and Mom moved to his house, until her fall, she shadowed him all day long. If he went out to the lawn to do some work, she was right behind him. If he was cooking, she was watching. If he was fixing model trains (his hobby) she was right behind him. Always making 'conversation' - which consisted of asking endless nonsensical questions. He allowed her to go for a walk aroud the block: "do NOT cross any street, just keep going forwards!" That worked - only once a neighbor saw her crossing a street and gently got her back on the right track. It was a good half hour or longer each day when he finally had a 'breather.'
If he had to shop, he took her along. If he went to deliver his repaired trains, Mom was with him. She went with them to the closing of the house they had bought, just before she moved in, and she sat there and kept asking 'when will the barbecue be done?'
He had the patience of a saint. I'm glad now that he has 3 or 4 days all to himself, his wife, son, daughter in law and granddaughter. He deserves it.
love,
Martha
(Ready to fly off tomorrow!)
My brother also finally reduced his visits to Mom to 3 or 4 a week (still too much in my opinion.) He stays away all weekend and does things with his family then. He usually goes Mon, Tues, Wed and Friday. Thursdays he sets aside for other things - so he is also gradually getting his life back.
From the time I left and Mom moved to his house, until her fall, she shadowed him all day long. If he went out to the lawn to do some work, she was right behind him. If he was cooking, she was watching. If he was fixing model trains (his hobby) she was right behind him. Always making 'conversation' - which consisted of asking endless nonsensical questions. He allowed her to go for a walk aroud the block: "do NOT cross any street, just keep going forwards!" That worked - only once a neighbor saw her crossing a street and gently got her back on the right track. It was a good half hour or longer each day when he finally had a 'breather.'
If he had to shop, he took her along. If he went to deliver his repaired trains, Mom was with him. She went with them to the closing of the house they had bought, just before she moved in, and she sat there and kept asking 'when will the barbecue be done?'
He had the patience of a saint. I'm glad now that he has 3 or 4 days all to himself, his wife, son, daughter in law and granddaughter. He deserves it.
love,
Martha
(Ready to fly off tomorrow!)
LuvMyLilDoggie
03-12-2006, 07:39 PM
Ok Jess. I made you cry and now you've gone and done it to me. :D That's ok though. I needed a good cry. It's very cleansing and I always feel better afterwards. So thank you! :)
I was just remembering my mother's passing and how wrapped up in my feelings I was that I didn't know how my husband was feeling. My mom used to babysit our son who was 4 years old when she died. I worked a weekly rotating shifts so I saw my mom maybe once or twice every two weeks. My husband saw her every day. He dropped my son off at my parent's house every morning and picked him up and visited every evening. But I never gave thought to how much he missed her. She was my mom, not his. That was what I thought. Little did I realize she had become just as much a mom to him as she was to me.
Your dh told you he was hurting too. This is good. The lines of communication are open. Now that he's told you this, both of you can lean on each other for support through this. You no longer have to do it or feel it alone.
BTW, you raised an awesome son! He really loves his mom!
Love, Barb
I was just remembering my mother's passing and how wrapped up in my feelings I was that I didn't know how my husband was feeling. My mom used to babysit our son who was 4 years old when she died. I worked a weekly rotating shifts so I saw my mom maybe once or twice every two weeks. My husband saw her every day. He dropped my son off at my parent's house every morning and picked him up and visited every evening. But I never gave thought to how much he missed her. She was my mom, not his. That was what I thought. Little did I realize she had become just as much a mom to him as she was to me.
Your dh told you he was hurting too. This is good. The lines of communication are open. Now that he's told you this, both of you can lean on each other for support through this. You no longer have to do it or feel it alone.
BTW, you raised an awesome son! He really loves his mom!
Love, Barb
CherylAnne39
03-12-2006, 10:17 PM
My mother was diagnosed with AD in late 1995. At that time she was living alone in an apartment. Her doctor said she was unable to live by herself any longer so we hired my oldest daughter to come live with and take care of her.
That didn't work out so we bought a home in the same town where my husband and myself live. We moved both my mom and daughter up here and my daughter promised to take good care of her but she didn't. She would sneak out at night and leave my mother by herself all night. She did this many, many times so we decided this wasn't going to work out either so I quit my job.......which I loved.........my husband and I were on site manager's for a huge storage facility in the same city. We moved in with my mom and my daughter. The first 3 days went fine as I was busy packing up some of my mother's stuff and unpacking mine. During those 3 days I re-decorated part of our home but on the 4th day we were all at the table eating dinner and all of a sudden I started bawling my eyes out......went into our bedroom and my husband asked me what was wrong. I told him that I didn't think I was going to be able to handle this but after awhile I got used to taking care of her. In the beginning she was pretty much able to take care of herself i.e. could dress, feed herself and use the bathroom by herself but then she started to decline and was no longer able to do anything for herself. It hurt me so bad to see my mother this way and to realize that she was no longer my mother but was my child. I remember the first time I had to give her a bath and how embarassed I was since I had never seen her naked but I was bound and determined to take care of her by myself which I did. Her health started to decline and even though her doctor told me that I should place her in a nursing home I couldn't do it so I took care of her up until the day she died. Both my brother, myself, my husband were at her bedside when she passed away. Of course I was hysterical and bawled almost constantly for several weeks after she passed away and even though it has been over 5 years since she passed away when I think about her and look at pictures of her I still bawl. I thank God that I was with her when she passed away and not in a nursing home. I feel like since a parent raises her children and then can no longer take care of themselves that one of the children should take care of the parent and not stick them in a stinking nursing home. I find it hard to believe that anyone can do that to their parent. I don't think there is any excuse to justify doing that.
That didn't work out so we bought a home in the same town where my husband and myself live. We moved both my mom and daughter up here and my daughter promised to take good care of her but she didn't. She would sneak out at night and leave my mother by herself all night. She did this many, many times so we decided this wasn't going to work out either so I quit my job.......which I loved.........my husband and I were on site manager's for a huge storage facility in the same city. We moved in with my mom and my daughter. The first 3 days went fine as I was busy packing up some of my mother's stuff and unpacking mine. During those 3 days I re-decorated part of our home but on the 4th day we were all at the table eating dinner and all of a sudden I started bawling my eyes out......went into our bedroom and my husband asked me what was wrong. I told him that I didn't think I was going to be able to handle this but after awhile I got used to taking care of her. In the beginning she was pretty much able to take care of herself i.e. could dress, feed herself and use the bathroom by herself but then she started to decline and was no longer able to do anything for herself. It hurt me so bad to see my mother this way and to realize that she was no longer my mother but was my child. I remember the first time I had to give her a bath and how embarassed I was since I had never seen her naked but I was bound and determined to take care of her by myself which I did. Her health started to decline and even though her doctor told me that I should place her in a nursing home I couldn't do it so I took care of her up until the day she died. Both my brother, myself, my husband were at her bedside when she passed away. Of course I was hysterical and bawled almost constantly for several weeks after she passed away and even though it has been over 5 years since she passed away when I think about her and look at pictures of her I still bawl. I thank God that I was with her when she passed away and not in a nursing home. I feel like since a parent raises her children and then can no longer take care of themselves that one of the children should take care of the parent and not stick them in a stinking nursing home. I find it hard to believe that anyone can do that to their parent. I don't think there is any excuse to justify doing that.
BarbaraH
03-13-2006, 01:29 AM
Hi Cheryl Anne,
More power to you for managing to keep your dear mother with you all the way. I understand how difficult and heartbreaking that was.
I was not able to do that.
We are here to offer each other support without judgement, so please extend that courtesy to all here.
Wishing you well - Barbara :)
More power to you for managing to keep your dear mother with you all the way. I understand how difficult and heartbreaking that was.
I was not able to do that.
We are here to offer each other support without judgement, so please extend that courtesy to all here.
Wishing you well - Barbara :)
ToBeFreeToRoam
03-13-2006, 01:59 AM
Hi Cheryl Anne,
I agree with you Barbara! Each person (caregiver) and family has to make their own decisions. If you are able to take care of your loved one 24/7 then that is good, if that is what you want to do. And if it does not hurt your family much.
I personally think that when a person with alzheimers gets to a certain level, they do not really care where they are. Even people that are dying of other things, may say they want to die at home, but sometimes the home caregivers just cannot control the pain and give all the attention needed. A NH, ASL, and/or Hospice and an alzheimers place can!!! They are trained to do just that!
So, there are many people and families like me, for instance, that will place their families when they can no longer live at home. And when the home care people can no longer handle them. We will be rested and not going off the mental end!!! And we can go and visit our loved ones whenever we want.
By the way, a lot of NHs and alzheimers places, do not stink!!!!! And some homes do stink!!!!! :>
Take care. I guess we all have our own opinions.
Love, Wannabe
I agree with you Barbara! Each person (caregiver) and family has to make their own decisions. If you are able to take care of your loved one 24/7 then that is good, if that is what you want to do. And if it does not hurt your family much.
I personally think that when a person with alzheimers gets to a certain level, they do not really care where they are. Even people that are dying of other things, may say they want to die at home, but sometimes the home caregivers just cannot control the pain and give all the attention needed. A NH, ASL, and/or Hospice and an alzheimers place can!!! They are trained to do just that!
So, there are many people and families like me, for instance, that will place their families when they can no longer live at home. And when the home care people can no longer handle them. We will be rested and not going off the mental end!!! And we can go and visit our loved ones whenever we want.
By the way, a lot of NHs and alzheimers places, do not stink!!!!! And some homes do stink!!!!! :>
Take care. I guess we all have our own opinions.
Love, Wannabe
Martha H
03-13-2006, 07:01 AM
We placed out dearly beloved Mom in a good, fine smelling Nursing Home because she was much happier and better off there, among others in her condition, with entertainment, activites I could never have provided at home, and professional care. I do not feel at all guilty. This NH cost us $11,000 a MONTH (Long Island, NY) so it was no way an easy solution or a cop out. It was necessary! All Mom's children are between 60 and 70 and unable to lift and turn a full sized adult. We do not feel guilty or feel that we failed her in any way.
Many people have the nursing homes of the 1950s in mind. Go and visit a nice modern friendly NH near you. You will ask your children to send you there when you get old! It will be much more fun than sitting in their empty house all day feeling lonely! Could we provide live bands for our Mom's entertainment? or Bingo every day? or a professional nurse to take care of her every need? It is unrealistic to think the care of a daughter or son can be better (OR, is ALWAYS bertter) than a good nursing home. It is a sad fallacy which has caused a lot of guilt and pain to well meaning, loving children of AD parents. Think it over.
Mom told my brother recently, "this is the nicest place I've ever lived!"
Love,
Martha
Many people have the nursing homes of the 1950s in mind. Go and visit a nice modern friendly NH near you. You will ask your children to send you there when you get old! It will be much more fun than sitting in their empty house all day feeling lonely! Could we provide live bands for our Mom's entertainment? or Bingo every day? or a professional nurse to take care of her every need? It is unrealistic to think the care of a daughter or son can be better (OR, is ALWAYS bertter) than a good nursing home. It is a sad fallacy which has caused a lot of guilt and pain to well meaning, loving children of AD parents. Think it over.
Mom told my brother recently, "this is the nicest place I've ever lived!"
Love,
Martha
janeslk
03-13-2006, 11:33 AM
CherylAnne said:
"I feel like since a parent raises her children and then can no longer take care of themselves that one of the children should take care of the parent and not stick them in a stinking nursing home. I find it hard to believe that anyone can do that to their parent. I don't think there is any excuse to justify doing that."
I do hope your daughter shares your view. She doesn't seem to have a very good track record. How long did you actually take care of your mother in your home--two years, three years? What AD stage was she in when she died? Did she ever get mean or violent with you or wander away?
Your post really rubbed me the wrong way. I am sure you didn't mean to come across as a smug martyr-type and I am glad you were able to keep your family together while caring for your mother, but please don't judge others based on your experience. We all have different experiences and lives.
Jane
"I feel like since a parent raises her children and then can no longer take care of themselves that one of the children should take care of the parent and not stick them in a stinking nursing home. I find it hard to believe that anyone can do that to their parent. I don't think there is any excuse to justify doing that."
I do hope your daughter shares your view. She doesn't seem to have a very good track record. How long did you actually take care of your mother in your home--two years, three years? What AD stage was she in when she died? Did she ever get mean or violent with you or wander away?
Your post really rubbed me the wrong way. I am sure you didn't mean to come across as a smug martyr-type and I am glad you were able to keep your family together while caring for your mother, but please don't judge others based on your experience. We all have different experiences and lives.
Jane
LuvMyLilDoggie
03-13-2006, 12:10 PM
I have it pretty good here. My sister (who lives 700 miles from me) and I share responsibility of my dad. I had him for 15 months. So far, she's had him for 9 months. When she gets tired and needs a break, I'll go get my dad and we'll repeat the cycle.
He's in a stage now where we can still take care of him at home. But that is slowly changing. He's wandered a few times and his legs are getting weak. I'm afraid the time will come when he forgets how to walk. He's already losing his ability to carry a conversation for more than a few sentences. Soon, he'll forget how to talk, then how to eat. This is what happened to his father.
I have a bad back and my dh has two prosthetic hips. There is NO WAY we'll be able to care for my dad when he gets that bad. My sister has her own health issues so it's unrealistic to assume that she'll be able to continue caring for my dad for long periods of time when he becomes totally incapacitated. And would it be fair to him anyway to continue switching him back and forth between families? This will only exasserbate his decline.
There are people who are single with very small children who are caring for their AD parent while working a full time job to support them all. Imagine the stress THEY'RE under! And is it fair to the AD parent to leave them alone when they forget how to cook and possibly start a fire? Or when they wander away and get lost for hours or days at a time?
CherylAnne, I used to feel the same way you did. I always quoted that saying "One parent can raise 10 children so why can't one child take care of a parent." I understand why now. I've seen the end stage of AD in other relatives. There is no way a lay person can do all that needs to be done for these people. You would have to have a medical background and help.
Please don't judge others too harshly. You know what it's like to care for a person with AD. But your circumstances were not the same as everyone else's.
We won't judge you.
Take care!
Love, Barb
He's in a stage now where we can still take care of him at home. But that is slowly changing. He's wandered a few times and his legs are getting weak. I'm afraid the time will come when he forgets how to walk. He's already losing his ability to carry a conversation for more than a few sentences. Soon, he'll forget how to talk, then how to eat. This is what happened to his father.
I have a bad back and my dh has two prosthetic hips. There is NO WAY we'll be able to care for my dad when he gets that bad. My sister has her own health issues so it's unrealistic to assume that she'll be able to continue caring for my dad for long periods of time when he becomes totally incapacitated. And would it be fair to him anyway to continue switching him back and forth between families? This will only exasserbate his decline.
There are people who are single with very small children who are caring for their AD parent while working a full time job to support them all. Imagine the stress THEY'RE under! And is it fair to the AD parent to leave them alone when they forget how to cook and possibly start a fire? Or when they wander away and get lost for hours or days at a time?
CherylAnne, I used to feel the same way you did. I always quoted that saying "One parent can raise 10 children so why can't one child take care of a parent." I understand why now. I've seen the end stage of AD in other relatives. There is no way a lay person can do all that needs to be done for these people. You would have to have a medical background and help.
Please don't judge others too harshly. You know what it's like to care for a person with AD. But your circumstances were not the same as everyone else's.
We won't judge you.
Take care!
Love, Barb
Jess_Son
03-13-2006, 12:28 PM
My mother was diagnosed with AD in late 1995. At that time she was living alone in an apartment. Her doctor said she was unable to live by herself any longer so we hired my oldest daughter to come live with and take care of her.
That didn't work out so we bought a home in the same town where my husband and myself live. We moved both my mom and daughter up here and my daughter promised to take good care of her but she didn't. She would sneak out at night and leave my mother by herself all night. She did this many, many times so we decided this wasn't going to work out either so I quit my job.......which I loved.........my husband and I were on site manager's for a huge storage facility in the same city. We moved in with my mom and my daughter. The first 3 days went fine as I was busy packing up some of my mother's stuff and unpacking mine. During those 3 days I re-decorated part of our home but on the 4th day we were all at the table eating dinner and all of a sudden I started bawling my eyes out......went into our bedroom and my husband asked me what was wrong. I told him that I didn't think I was going to be able to handle this but after awhile I got used to taking care of her. In the beginning she was pretty much able to take care of herself i.e. could dress, feed herself and use the bathroom by herself but then she started to decline and was no longer able to do anything for herself. It hurt me so bad to see my mother this way and to realize that she was no longer my mother but was my child. I remember the first time I had to give her a bath and how embarassed I was since I had never seen her naked but I was bound and determined to take care of her by myself which I did. Her health started to decline and even though her doctor told me that I should place her in a nursing home I couldn't do it so I took care of her up until the day she died. Both my brother, myself, my husband were at her bedside when she passed away. Of course I was hysterical and bawled almost constantly for several weeks after she passed away and even though it has been over 5 years since she passed away when I think about her and look at pictures of her I still bawl. I thank God that I was with her when she passed away and not in a nursing home. I feel like since a parent raises her children and then can no longer take care of themselves that one of the children should take care of the parent and not stick them in a stinking nursing home. I find it hard to believe that anyone can do that to their parent. I don't think there is any excuse to justify doing that.
Not to seem on the defensive side - but my parents (Jess22 is my mother) have exercised every option of keeping her home. They've contemplated reconstructing their house to build on an addition, moving in with my grandmother at her home, they've provided round the clock care-givers, my mother has stayed with her numerous times, at the risk of losing her job which - for us, she financially cannot do - and more.
But she's combative and violent. She fights the care and still tries to wander away. If you won't leave her house - she'll refuse food and cleaning.
I was taking a shower one morning and she was still groggy/sleepy (thought it was safe) and she tried running away. When I got out, she was already halfway down the street. She was so combative and fighting us so bad one day that we had to have an ambulance and police officers come to settle her down. She's locked us and caregivers out of her house. Etc. etc. etc.
I find it hard to believe that anyone can do that to their parent. I don't think there is any excuse to justify doing that.
We've found a facility that doesn't use restraints or over-sedate the patients.
This would be something we would eventually have to enforce if we kept her at her own home. So, I do think there's justification. It comes down to the quality of life that a parent could obtain and where's the best place for that?
At home, where she tortures herself morning, day, and night with fighting off the care and trying to demand her independence? Where she recognizes the home but thinks everyone in it is a stranger who is trying to steal her things? Where she sits on the sofa or recliner or kitchen table chair or side of her bed for hours bawling because we won't leave "her home"? Where my mother has so much stress that she cannot sleep, has insomnia for days, cries all the time, and develops abcesses and other things due to stress? She's also lost over 40 lbs.
When the well parent raised the child - she didn't have to endure these things. Sure, all kids have problems and rebellion but to compare this sort of care to the care of a child in development is remarkably naive.
I'm sorry about your mother and we're jealous that she was able to be taken care of by you, in a familiar zone (tho this is debatable , if she had AD). However, this is the last option for us. And it's an extremely sensitive and painful decision to make - but ultimately, the best one, due to our situation and the type of AD patient my granny has become.
I'm not suggesting we want everyone on the board to agree with us and pat us on the back and caress us and say, "Honey, you're doing the best thing."
But - it's best and wisest to consider someone else's situation from all angles before you make the assumption that it's a weak, cruel, or lazy decision.
And since this is a very fresh wound (placed her in a facility on just this past Wednesday)this sort of irresponsible comment is especially hurts and stings.
That didn't work out so we bought a home in the same town where my husband and myself live. We moved both my mom and daughter up here and my daughter promised to take good care of her but she didn't. She would sneak out at night and leave my mother by herself all night. She did this many, many times so we decided this wasn't going to work out either so I quit my job.......which I loved.........my husband and I were on site manager's for a huge storage facility in the same city. We moved in with my mom and my daughter. The first 3 days went fine as I was busy packing up some of my mother's stuff and unpacking mine. During those 3 days I re-decorated part of our home but on the 4th day we were all at the table eating dinner and all of a sudden I started bawling my eyes out......went into our bedroom and my husband asked me what was wrong. I told him that I didn't think I was going to be able to handle this but after awhile I got used to taking care of her. In the beginning she was pretty much able to take care of herself i.e. could dress, feed herself and use the bathroom by herself but then she started to decline and was no longer able to do anything for herself. It hurt me so bad to see my mother this way and to realize that she was no longer my mother but was my child. I remember the first time I had to give her a bath and how embarassed I was since I had never seen her naked but I was bound and determined to take care of her by myself which I did. Her health started to decline and even though her doctor told me that I should place her in a nursing home I couldn't do it so I took care of her up until the day she died. Both my brother, myself, my husband were at her bedside when she passed away. Of course I was hysterical and bawled almost constantly for several weeks after she passed away and even though it has been over 5 years since she passed away when I think about her and look at pictures of her I still bawl. I thank God that I was with her when she passed away and not in a nursing home. I feel like since a parent raises her children and then can no longer take care of themselves that one of the children should take care of the parent and not stick them in a stinking nursing home. I find it hard to believe that anyone can do that to their parent. I don't think there is any excuse to justify doing that.
Not to seem on the defensive side - but my parents (Jess22 is my mother) have exercised every option of keeping her home. They've contemplated reconstructing their house to build on an addition, moving in with my grandmother at her home, they've provided round the clock care-givers, my mother has stayed with her numerous times, at the risk of losing her job which - for us, she financially cannot do - and more.
But she's combative and violent. She fights the care and still tries to wander away. If you won't leave her house - she'll refuse food and cleaning.
I was taking a shower one morning and she was still groggy/sleepy (thought it was safe) and she tried running away. When I got out, she was already halfway down the street. She was so combative and fighting us so bad one day that we had to have an ambulance and police officers come to settle her down. She's locked us and caregivers out of her house. Etc. etc. etc.
I find it hard to believe that anyone can do that to their parent. I don't think there is any excuse to justify doing that.
We've found a facility that doesn't use restraints or over-sedate the patients.
This would be something we would eventually have to enforce if we kept her at her own home. So, I do think there's justification. It comes down to the quality of life that a parent could obtain and where's the best place for that?
At home, where she tortures herself morning, day, and night with fighting off the care and trying to demand her independence? Where she recognizes the home but thinks everyone in it is a stranger who is trying to steal her things? Where she sits on the sofa or recliner or kitchen table chair or side of her bed for hours bawling because we won't leave "her home"? Where my mother has so much stress that she cannot sleep, has insomnia for days, cries all the time, and develops abcesses and other things due to stress? She's also lost over 40 lbs.
When the well parent raised the child - she didn't have to endure these things. Sure, all kids have problems and rebellion but to compare this sort of care to the care of a child in development is remarkably naive.
I'm sorry about your mother and we're jealous that she was able to be taken care of by you, in a familiar zone (tho this is debatable , if she had AD). However, this is the last option for us. And it's an extremely sensitive and painful decision to make - but ultimately, the best one, due to our situation and the type of AD patient my granny has become.
I'm not suggesting we want everyone on the board to agree with us and pat us on the back and caress us and say, "Honey, you're doing the best thing."
But - it's best and wisest to consider someone else's situation from all angles before you make the assumption that it's a weak, cruel, or lazy decision.
And since this is a very fresh wound (placed her in a facility on just this past Wednesday)this sort of irresponsible comment is especially hurts and stings.
BarbaraH
03-13-2006, 01:23 PM
Well said, Jess's son! You're a credit to your family!!
((((((hugs)))))) Barbara (my sons are 26 and 22, so fret not about the hugs! ;) )
((((((hugs)))))) Barbara (my sons are 26 and 22, so fret not about the hugs! ;) )
CherylAnne39
03-14-2006, 10:18 PM
Hi Cheryl Anne,
I agree with you Barbara! Each person (caregiver) and family has to make their own decisions. If you are able to take care of your loved one 24/7 then that is good, if that is what you want to do. And if it does not hurt your family much.
I personally think that when a person with alzheimers gets to a certain level, they do not really care where they are. Even people that are dying of other things, may say they want to die at home, but sometimes the home caregivers just cannot control the pain and give all the attention needed. A NH, ASL, and/or Hospice and an alzheimers place can!!! They are trained to do just that!
So, there are many people and families like me, for instance, that will place their families when they can no longer live at home. And when the home care people can no longer handle them. We will be rested and not going off the mental end!!! And we can go and visit our loved ones whenever we want.
By the way, a lot of NHs and alzheimers places, do not stink!!!!! And some homes do stink!!!!! :>
Take care. I guess we all have our own opinions.
Love, Wannabe
My mother was on home Hospice care a few weeks before she passed away. Even though I was completely drained both mentally and physically I still wanted to take care of her in my home. Everyone could see how exhausted I was and advised me to put her in a nursing home but I just couldn't do it.
She was placed in a nursing home twice but not by my choice. One morning when she was still able to get around she started complaining about chest pain so since she had already had several heart attacks I was afraid she might be having another one. She had an appt. to go to the doctor that day but we had over a foot of snow on the ground and I was afraid that she might slip and fall when I was walking her to my car so I called the Paramedics which was a huge mistake. They came into my home and checked her vitals and they thought she was having a heart attack too so when they started to help her get up out of her chair one of the Paramedics dropped a big oxygen container on her foot which crushed her big toe. She spent a couple nights in the hospital then was released so I brought her back home. Her big toe started turning black so I took her back to the hospital and the doctor admitted her into a nursing home which was in the same building. After a few days she had to have her big toe amputated so they kept her there for a week or so for rehab, then released her and I once again I brought her home. We had a physical therapist come to our home every day but she never learned to walk without her toe. She was re-admitted to the same nursing home and while she was there she fell out of her bed and injured her knee, then she got cellutitis and had to have her leg amputated above her knee. They kept her there for a while longer, then I brought her back home with me. That's when I started having to do everything for her and it was so very hard to me to take care of her. It was really hard to get her out of her hospital bed as when I would sit her up she was afraid that she would fall so she always grabbed the bed frame and it was next to impossible for me to get her up. It was the same way when I tried to get her out of her wheelchair and put her back in bed. She would hold on to it and there I was lifting the wheel chair with her in it. One day I was trying to put her to bed but I couldn't lift her so I had to let her slide down my leg on to the floor. She only weighed 100 lbs and I weighed 115 lbs so I had to call a neighbor so she could help me get her off the floor. I still kept her at home and wasn't about to admit her to the nursing home again.
I used to be a CNA and even though some of these nursing homes look very nice their are a lot of CNA's who neglect the patient's but I was always very caring and kind to my patient's.
Thanks for listening.
I agree with you Barbara! Each person (caregiver) and family has to make their own decisions. If you are able to take care of your loved one 24/7 then that is good, if that is what you want to do. And if it does not hurt your family much.
I personally think that when a person with alzheimers gets to a certain level, they do not really care where they are. Even people that are dying of other things, may say they want to die at home, but sometimes the home caregivers just cannot control the pain and give all the attention needed. A NH, ASL, and/or Hospice and an alzheimers place can!!! They are trained to do just that!
So, there are many people and families like me, for instance, that will place their families when they can no longer live at home. And when the home care people can no longer handle them. We will be rested and not going off the mental end!!! And we can go and visit our loved ones whenever we want.
By the way, a lot of NHs and alzheimers places, do not stink!!!!! And some homes do stink!!!!! :>
Take care. I guess we all have our own opinions.
Love, Wannabe
My mother was on home Hospice care a few weeks before she passed away. Even though I was completely drained both mentally and physically I still wanted to take care of her in my home. Everyone could see how exhausted I was and advised me to put her in a nursing home but I just couldn't do it.
She was placed in a nursing home twice but not by my choice. One morning when she was still able to get around she started complaining about chest pain so since she had already had several heart attacks I was afraid she might be having another one. She had an appt. to go to the doctor that day but we had over a foot of snow on the ground and I was afraid that she might slip and fall when I was walking her to my car so I called the Paramedics which was a huge mistake. They came into my home and checked her vitals and they thought she was having a heart attack too so when they started to help her get up out of her chair one of the Paramedics dropped a big oxygen container on her foot which crushed her big toe. She spent a couple nights in the hospital then was released so I brought her back home. Her big toe started turning black so I took her back to the hospital and the doctor admitted her into a nursing home which was in the same building. After a few days she had to have her big toe amputated so they kept her there for a week or so for rehab, then released her and I once again I brought her home. We had a physical therapist come to our home every day but she never learned to walk without her toe. She was re-admitted to the same nursing home and while she was there she fell out of her bed and injured her knee, then she got cellutitis and had to have her leg amputated above her knee. They kept her there for a while longer, then I brought her back home with me. That's when I started having to do everything for her and it was so very hard to me to take care of her. It was really hard to get her out of her hospital bed as when I would sit her up she was afraid that she would fall so she always grabbed the bed frame and it was next to impossible for me to get her up. It was the same way when I tried to get her out of her wheelchair and put her back in bed. She would hold on to it and there I was lifting the wheel chair with her in it. One day I was trying to put her to bed but I couldn't lift her so I had to let her slide down my leg on to the floor. She only weighed 100 lbs and I weighed 115 lbs so I had to call a neighbor so she could help me get her off the floor. I still kept her at home and wasn't about to admit her to the nursing home again.
I used to be a CNA and even though some of these nursing homes look very nice their are a lot of CNA's who neglect the patient's but I was always very caring and kind to my patient's.
Thanks for listening.
Glenna
03-15-2006, 12:25 AM
Hi, CherylAnne. I appreciated your post and am so glad that you were able to hang in there to the end with your mom. Sometimes I feel a bit pressured towards placement because the patient will get "professional" help that way.
Yet my dad was tortured in a facility--I don't believe they missed a single part of his body to inflict agony. This was a well rated facility and the CNAs were all crisply dressed in nice white uniforms. I could not help my father or see him again because his wife had POA, and it was years of seeking justice that I finally accepted that the omsbudsman's office and inspections were a joke, and that it was all about coverup not correcting. After I had reported what had happened to the US Senate Commission on Aging what had been done to my father, my state department of treasury came after me for 5 years in retaliation...long story with a bad ending for me, but I learned to shut up and cower before the powers that be.
Yet I do believe there must be good places depending on where one lives and understand the need for many to place their loved ones. May God Bless those professionals that do care about their patients.
It's odd but I came across two different programs a few weeks ago in the wee hours about nursing homes. One was A View From Here and the other was called Almost Home about St. John's On The Lake. What struck me about both of them was that the patients shown were verbal and able to socialize. My mom can not do either of these things.
It was interesting to hear the view of the CNAs. One said she became a CNA because it paid better than McDonald's. Another stated that the patients should be nice to them because they had to be nice to the patients. Don't the CNAs receive any dementia training because that comment would indicate a complete lack of understanding of the disease. The administrators discussed complaints of lack of professionalism from the CNAs, but basically asked how can one expect low-paid workers from often dismal circumstances to be otherwise.
But it was heartening to see how hard Saint John's was clearly working with social modeling and treating each patient according to their individual needs and desires.
One patient kept repeating in a little girl's voice, "Please stop hurting me" over and over and over. They immediately determined she was having mini-strokes, took her to the hospital and she came back all better and happy. I would love to know what they did because I've yet to see anything coming close to that level of care from the neuros and hospitals I've seen.
Both documentaries were very sad and had the tears flowing. I know we all have hard decisions to make and respect whatever they may be. Never had I expected to see my mom decline so rapidly, so I can't begin to question anyone else's hard choices. Lord, this is so hard.
Thanks for sharing your story, CherylAnne.
Yet my dad was tortured in a facility--I don't believe they missed a single part of his body to inflict agony. This was a well rated facility and the CNAs were all crisply dressed in nice white uniforms. I could not help my father or see him again because his wife had POA, and it was years of seeking justice that I finally accepted that the omsbudsman's office and inspections were a joke, and that it was all about coverup not correcting. After I had reported what had happened to the US Senate Commission on Aging what had been done to my father, my state department of treasury came after me for 5 years in retaliation...long story with a bad ending for me, but I learned to shut up and cower before the powers that be.
Yet I do believe there must be good places depending on where one lives and understand the need for many to place their loved ones. May God Bless those professionals that do care about their patients.
It's odd but I came across two different programs a few weeks ago in the wee hours about nursing homes. One was A View From Here and the other was called Almost Home about St. John's On The Lake. What struck me about both of them was that the patients shown were verbal and able to socialize. My mom can not do either of these things.
It was interesting to hear the view of the CNAs. One said she became a CNA because it paid better than McDonald's. Another stated that the patients should be nice to them because they had to be nice to the patients. Don't the CNAs receive any dementia training because that comment would indicate a complete lack of understanding of the disease. The administrators discussed complaints of lack of professionalism from the CNAs, but basically asked how can one expect low-paid workers from often dismal circumstances to be otherwise.
But it was heartening to see how hard Saint John's was clearly working with social modeling and treating each patient according to their individual needs and desires.
One patient kept repeating in a little girl's voice, "Please stop hurting me" over and over and over. They immediately determined she was having mini-strokes, took her to the hospital and she came back all better and happy. I would love to know what they did because I've yet to see anything coming close to that level of care from the neuros and hospitals I've seen.
Both documentaries were very sad and had the tears flowing. I know we all have hard decisions to make and respect whatever they may be. Never had I expected to see my mom decline so rapidly, so I can't begin to question anyone else's hard choices. Lord, this is so hard.
Thanks for sharing your story, CherylAnne.
Jess22
03-15-2006, 01:17 AM
Cheryl,
God Bless you for being able to endure all that you have been through and it
is very obvious to me you are still some five years later suffering alot of pain over losing your mother who probably was as close to your heart as mine is to my own heart. Tonight is the second night I have spent more than seven hours at the NH facility where they will be moving mom on thursday from the hospital. I have completely killed myself and my "fabulous " son this past week trying to dot every I and cross every T making sure Im leaving no stones unturned so that all will be well in mother's transition to her new home.
I think it is more than touching to know that you endured so much and still could not let go in spite of everything to relinquish your mother's care into someone else's hands. I do think it is admirable to be able to care for your parents and I should know first hand because you see I have been there also. My dad had lung cancer and for two years I cared for him along at the time with mother, and I watched him go from 225 to 116 pds before he died. I cannot tell you the grief I felt the labor day we watched him take his last breath at home with hospice care. I also could not explain the joy I felt afterwards to know that we kept our "promise" and took care of him until the end. I understand you see the satisfaction that can bring to a child's heart, it did to mine and I have never regretted it. I quit my job at the time making very good money, I sacrificed unsurmountable hours of grieving and pain, watching him beg me into wee hours of the morning to kill him or get him a gun. I would not change or take back one day I spent even thirty six straight hours of sleep loss because he could not rest. So I agree with you it was a joyful thing and something I could not make myself do otherwise.
However, in this case of my mother, my best friend in life, the person who I have been closest to "all" my fourty four years I have chosen a differant path and I refuse because of the great people I have gained strength from here to feel guilty to the point of making the wrong decision for myself and for my mother. Placing my mom in a NH has broken my spirit's as well as my heart and I will overlook your judgements agianst me because I still can feel your pain over your loss. Only GOD himself knows how much I have struggled and hurt over what I feel I have no other choice to do. You may feel it is selfish or weak but I can tell you I'am neither... Selfish would be bringing my mother home agian to face unsurmountable complications and pain once agian only to fail at all cost's. Believe me I even felt today as I was fixing her flower valance above her window which looks out in the courtyard that I wished I could just die at that thought of her not coming home agian. When the sweet aides came in to see her pictures and all her decore my heart pounded out of my chest as I begged for them to treat her with utmost care my little mommie who I love more than I can ever share. The truth is the time has come for me to begin to trust my instincts, dr.s advice, social worker's and therapists, and her own psychiatrist along with all my children and especially" dear son" who has helped take care of his little granny for so long. So we will go forward without judgements and proceed to do what we feel is best. I want now to visit my mom without feeling completely exhausted, stressed to the max, chewing my nails, vomiting because of uncontrollable nerves. I want to not feel one ounce of resentment toward her for something she cant help but Im too exhausted to realize IM not doing the best job just because she is where I can see what happens to her every moment.
I will trust other's and I will visit her regularly always praying for that glimmer of hope that this horrible thing has vanished and she will know me and what is happening around her. I know more than likely that will not happen, and so I will wash her hair, and laugh with her or cry, I will kiss her lot's as always , I will lie beside her and rub her back and I will be there when she is sick and I will stay beside her until the "end" of her life because she is my mom and making sure she is "well" cared for physically, socially, and spiritually is my duty as her baby. She would be proud of me today for the steps that I took to do what this heart felt was all I had left to do.
Thanks to all of my "good" buddies who understand and give me my strength. I saw my mommie in the behavioral hospital walk hand in hand with another little lady who was dementia trapped and saw their little concern and care for one another as in their own way they visited and felt connected and my mom may not have been shouting with glee but she wasnt crying and begging to die either like she has in the past, so I can live with that. NO maybe IM not that "Most" important person in her life anymore that she cant seem to live without, at this moment it's tildie her little friend, but Im there, Im still her jesse and IM still her daughter who gave her MY best.
God Bless you for being able to endure all that you have been through and it
is very obvious to me you are still some five years later suffering alot of pain over losing your mother who probably was as close to your heart as mine is to my own heart. Tonight is the second night I have spent more than seven hours at the NH facility where they will be moving mom on thursday from the hospital. I have completely killed myself and my "fabulous " son this past week trying to dot every I and cross every T making sure Im leaving no stones unturned so that all will be well in mother's transition to her new home.
I think it is more than touching to know that you endured so much and still could not let go in spite of everything to relinquish your mother's care into someone else's hands. I do think it is admirable to be able to care for your parents and I should know first hand because you see I have been there also. My dad had lung cancer and for two years I cared for him along at the time with mother, and I watched him go from 225 to 116 pds before he died. I cannot tell you the grief I felt the labor day we watched him take his last breath at home with hospice care. I also could not explain the joy I felt afterwards to know that we kept our "promise" and took care of him until the end. I understand you see the satisfaction that can bring to a child's heart, it did to mine and I have never regretted it. I quit my job at the time making very good money, I sacrificed unsurmountable hours of grieving and pain, watching him beg me into wee hours of the morning to kill him or get him a gun. I would not change or take back one day I spent even thirty six straight hours of sleep loss because he could not rest. So I agree with you it was a joyful thing and something I could not make myself do otherwise.
However, in this case of my mother, my best friend in life, the person who I have been closest to "all" my fourty four years I have chosen a differant path and I refuse because of the great people I have gained strength from here to feel guilty to the point of making the wrong decision for myself and for my mother. Placing my mom in a NH has broken my spirit's as well as my heart and I will overlook your judgements agianst me because I still can feel your pain over your loss. Only GOD himself knows how much I have struggled and hurt over what I feel I have no other choice to do. You may feel it is selfish or weak but I can tell you I'am neither... Selfish would be bringing my mother home agian to face unsurmountable complications and pain once agian only to fail at all cost's. Believe me I even felt today as I was fixing her flower valance above her window which looks out in the courtyard that I wished I could just die at that thought of her not coming home agian. When the sweet aides came in to see her pictures and all her decore my heart pounded out of my chest as I begged for them to treat her with utmost care my little mommie who I love more than I can ever share. The truth is the time has come for me to begin to trust my instincts, dr.s advice, social worker's and therapists, and her own psychiatrist along with all my children and especially" dear son" who has helped take care of his little granny for so long. So we will go forward without judgements and proceed to do what we feel is best. I want now to visit my mom without feeling completely exhausted, stressed to the max, chewing my nails, vomiting because of uncontrollable nerves. I want to not feel one ounce of resentment toward her for something she cant help but Im too exhausted to realize IM not doing the best job just because she is where I can see what happens to her every moment.
I will trust other's and I will visit her regularly always praying for that glimmer of hope that this horrible thing has vanished and she will know me and what is happening around her. I know more than likely that will not happen, and so I will wash her hair, and laugh with her or cry, I will kiss her lot's as always , I will lie beside her and rub her back and I will be there when she is sick and I will stay beside her until the "end" of her life because she is my mom and making sure she is "well" cared for physically, socially, and spiritually is my duty as her baby. She would be proud of me today for the steps that I took to do what this heart felt was all I had left to do.
Thanks to all of my "good" buddies who understand and give me my strength. I saw my mommie in the behavioral hospital walk hand in hand with another little lady who was dementia trapped and saw their little concern and care for one another as in their own way they visited and felt connected and my mom may not have been shouting with glee but she wasnt crying and begging to die either like she has in the past, so I can live with that. NO maybe IM not that "Most" important person in her life anymore that she cant seem to live without, at this moment it's tildie her little friend, but Im there, Im still her jesse and IM still her daughter who gave her MY best.
ToBeFreeToRoam
03-15-2006, 02:58 AM
Hi Jess,
I think you have done a terrific job of caring for your mom! It is very wearing and can drag you down - mentally and physically. It is already doing it to me and my parents are still living at home, together, by themselves! I am taking several drugs, because of helping to care for them!! You know that you have made the correct decision for you, your mom and your family.
CherylAnne and Jesse, I helped to care for my MIL about 4 or 5 years ago, for about 2 years. There was my husband, my FIL, me and when it got really bad, my SIL. We were the caregivers. She had cancer and hurt all over. It took 3 of us to turn her in the end - and to change her linen and diapers. She had home hospice care. And people to come and give her a bath in bed. But, in the last 1 - 2 weeks, she was in so much pain, and we could not control it. She would cry every time we moved her! So, she got moved to a Hospice Care Unit. It was very nice and they treated her well. She might have known and might not, because she was out til the end, from as soon as we go her there. They adjusted her pain meds and did what we could not. Ended most of her bad, hurting suffering!!!
My parents will go into a care place, when they need to. My sister and I will decide with the help of the other family members. For now, probably sometime this year, we will get them a home care person, for a few days a week... For now!
Yall take care and please do not think that your solution is the only one. Each alzheimers/dementia patient is different. Each family is different. So, each decision must be made by the caregivers for their relative. Please be nice and no finger wagging. Just nice talking and info and help. And I think that one of the rules of the board, is to just give advice and help and info. Not to try and change other peoples minds and decisions with what you thint is right and the only thing that is correct to do. Sorry if I sound like a teacher or something, but just trying to smooth things over for everyone, concerning this matter...
Take care yall.
Love, Wannabe
I think you have done a terrific job of caring for your mom! It is very wearing and can drag you down - mentally and physically. It is already doing it to me and my parents are still living at home, together, by themselves! I am taking several drugs, because of helping to care for them!! You know that you have made the correct decision for you, your mom and your family.
CherylAnne and Jesse, I helped to care for my MIL about 4 or 5 years ago, for about 2 years. There was my husband, my FIL, me and when it got really bad, my SIL. We were the caregivers. She had cancer and hurt all over. It took 3 of us to turn her in the end - and to change her linen and diapers. She had home hospice care. And people to come and give her a bath in bed. But, in the last 1 - 2 weeks, she was in so much pain, and we could not control it. She would cry every time we moved her! So, she got moved to a Hospice Care Unit. It was very nice and they treated her well. She might have known and might not, because she was out til the end, from as soon as we go her there. They adjusted her pain meds and did what we could not. Ended most of her bad, hurting suffering!!!
My parents will go into a care place, when they need to. My sister and I will decide with the help of the other family members. For now, probably sometime this year, we will get them a home care person, for a few days a week... For now!
Yall take care and please do not think that your solution is the only one. Each alzheimers/dementia patient is different. Each family is different. So, each decision must be made by the caregivers for their relative. Please be nice and no finger wagging. Just nice talking and info and help. And I think that one of the rules of the board, is to just give advice and help and info. Not to try and change other peoples minds and decisions with what you thint is right and the only thing that is correct to do. Sorry if I sound like a teacher or something, but just trying to smooth things over for everyone, concerning this matter...
Take care yall.
Love, Wannabe
CherylAnne39
03-15-2006, 04:39 PM
Hi Jess,
I think you have done a terrific job of caring for your mom! It is very wearing and can drag you down - mentally and physically. It is already doing it to me and my parents are still living at home, together, by themselves! I am taking several drugs, because of helping to care for them!! You know that you have made the correct decision for you, your mom and your family.
CherylAnne and Jesse, I helped to care for my MIL about 4 or 5 years ago, for about 2 years. There was my husband, my FIL, me and when it got really bad, my SIL. We were the caregivers. She had cancer and hurt all over. It took 3 of us to turn her in the end - and to change her linen and diapers. She had home hospice care. And people to come and give her a bath in bed. But, in the last 1 - 2 weeks, she was in so much pain, and we could not control it. She would cry every time we moved her! So, she got moved to a Hospice Care Unit. It was very nice and they treated her well. She might have known and might not, because she was out til the end, from as soon as we go her there. They adjusted her pain meds and did what we could not. Ended most of her bad, hurting suffering!!!
My parents will go into a care place, when they need to. My sister and I will decide with the help of the other family members. For now, probably sometime this year, we will get them a home care person, for a few days a week... For now!
Yall take care and please do not think that your solution is the only one. Each alzheimers/dementia patient is different. Each family is different. So, each decision must be made by the caregivers for their relative. Please be nice and no finger wagging. Just nice talking and info and help. And I think that one of the rules of the board, is to just give advice and help and info. Not to try and change other peoples minds and decisions with what you thint is right and the only thing that is correct to do. Sorry if I sound like a teacher or something, but just trying to smooth things over for everyone, concerning this matter...
Take care yall.
Love, Wannabe
Wannabe........I guess my first post sounded like I was judging other's who place a loved on in a nursing home and for that I apologize to all who I may have offended. I realize that everyone's circumstances are different and sometimes their is no family member who can, or who are not able to take care of their loved one at home. It is so terribly hard to take care of someone who can't do anything for themselves. I was 61 years old when I started taking care of my mom. She was not only my mom but was also my best friend. We used to have so much fun together and people thought we were sisters as my mom always looked really young for her age. She was a beautiful woman all the way up to when she was diagnosed with AD.. After that she would chop bunches of her hair off so each time we went to her apt. I would cut and style her hair and did that all the way up until she passed away. After it got to where she couldn't sit in her wheelchair for very long I let her hair grow out and after she passed away and I first saw her in her coffin she looked so young and beautiful. That's one memory that I'll never forget. I'm about ready to start bawling so will end here.
I think you have done a terrific job of caring for your mom! It is very wearing and can drag you down - mentally and physically. It is already doing it to me and my parents are still living at home, together, by themselves! I am taking several drugs, because of helping to care for them!! You know that you have made the correct decision for you, your mom and your family.
CherylAnne and Jesse, I helped to care for my MIL about 4 or 5 years ago, for about 2 years. There was my husband, my FIL, me and when it got really bad, my SIL. We were the caregivers. She had cancer and hurt all over. It took 3 of us to turn her in the end - and to change her linen and diapers. She had home hospice care. And people to come and give her a bath in bed. But, in the last 1 - 2 weeks, she was in so much pain, and we could not control it. She would cry every time we moved her! So, she got moved to a Hospice Care Unit. It was very nice and they treated her well. She might have known and might not, because she was out til the end, from as soon as we go her there. They adjusted her pain meds and did what we could not. Ended most of her bad, hurting suffering!!!
My parents will go into a care place, when they need to. My sister and I will decide with the help of the other family members. For now, probably sometime this year, we will get them a home care person, for a few days a week... For now!
Yall take care and please do not think that your solution is the only one. Each alzheimers/dementia patient is different. Each family is different. So, each decision must be made by the caregivers for their relative. Please be nice and no finger wagging. Just nice talking and info and help. And I think that one of the rules of the board, is to just give advice and help and info. Not to try and change other peoples minds and decisions with what you thint is right and the only thing that is correct to do. Sorry if I sound like a teacher or something, but just trying to smooth things over for everyone, concerning this matter...
Take care yall.
Love, Wannabe
Wannabe........I guess my first post sounded like I was judging other's who place a loved on in a nursing home and for that I apologize to all who I may have offended. I realize that everyone's circumstances are different and sometimes their is no family member who can, or who are not able to take care of their loved one at home. It is so terribly hard to take care of someone who can't do anything for themselves. I was 61 years old when I started taking care of my mom. She was not only my mom but was also my best friend. We used to have so much fun together and people thought we were sisters as my mom always looked really young for her age. She was a beautiful woman all the way up to when she was diagnosed with AD.. After that she would chop bunches of her hair off so each time we went to her apt. I would cut and style her hair and did that all the way up until she passed away. After it got to where she couldn't sit in her wheelchair for very long I let her hair grow out and after she passed away and I first saw her in her coffin she looked so young and beautiful. That's one memory that I'll never forget. I'm about ready to start bawling so will end here.
BarbaraH
03-15-2006, 05:50 PM
(((((((((((((((((hugs CherylAnne))))))))))))))))))
It is so easy for these memories to bring on the tears, isn't it? My DH just hugs me when I need to cry. My Mom's birthday was Feb 29, so I've been wearing my feelings on my shoulder recently. Mom died about 18 months ago and it seems like yesterday. I come her to offer what I learned as that's about the only way I can make sense of having lost my sweet little mother to AD.
I hope your heart and the rest of you heals soon and the painful loss you feel becomes more gentle. Glad you found us.
Peace - Barbara :wave:
It is so easy for these memories to bring on the tears, isn't it? My DH just hugs me when I need to cry. My Mom's birthday was Feb 29, so I've been wearing my feelings on my shoulder recently. Mom died about 18 months ago and it seems like yesterday. I come her to offer what I learned as that's about the only way I can make sense of having lost my sweet little mother to AD.
I hope your heart and the rest of you heals soon and the painful loss you feel becomes more gentle. Glad you found us.
Peace - Barbara :wave:
CherylAnne39
03-15-2006, 08:09 PM
Not to seem on the defensive side - but my parents (Jess22 is my mother) have exercised every option of keeping her home. They've contemplated reconstructing their house to build on an addition, moving in with my grandmother at her home, they've provided round the clock care-givers, my mother has stayed with her numerous times, at the risk of losing her job which - for us, she financially cannot do - and more.
But she's combative and violent. She fights the care and still tries to wander away. If you won't leave her house - she'll refuse food and cleaning.
I was taking a shower one morning and she was still groggy/sleepy (thought it was safe) and she tried running away. When I got out, she was already halfway down the street. She was so combative and fighting us so bad one day that we had to have an ambulance and police officers come to settle her down. She's locked us and caregivers out of her house. Etc. etc. etc.
We've found a facility that doesn't use restraints or over-sedate the patients.
This would be something we would eventually have to enforce if we kept her at her own home. So, I do think there's justification. It comes down to the quality of life that a parent could obtain and where's the best place for that?
At home, where she tortures herself morning, day, and night with fighting off the care and trying to demand her independence? Where she recognizes the home but thinks everyone in it is a stranger who is trying to steal her things? Where she sits on the sofa or recliner or kitchen table chair or side of her bed for hours bawling because we won't leave "her home"? Where my mother has so much stress that she cannot sleep, has insomnia for days, cries all the time, and develops abcesses and other things due to stress? She's also lost over 40 lbs.
When the well parent raised the child - she didn't have to endure these things. Sure, all kids have problems and rebellion but to compare this sort of care to the care of a child in development is remarkably naive.
I'm sorry about your mother and we're jealous that she was able to be taken care of by you, in a familiar zone (tho this is debatable , if she had AD). However, this is the last option for us. And it's an extremely sensitive and painful decision to make - but ultimately, the best one, due to our situation and the type of AD patient my granny has become.
I'm not suggesting we want everyone on the board to agree with us and pat us on the back and caress us and say, "Honey, you're doing the best thing."
But - it's best and wisest to consider someone else's situation from all angles before you make the assumption that it's a weak, cruel, or lazy decision.
And since this is a very fresh wound (placed her in a facility on just this past Wednesday)this sort of irresponsible comment is especially hurts and stings.
My mother did indeed have AD and I took care of her from Aug. 1998 to Nov. 2000 the month that she passed away. My mother did not sit around and torture herself nor did she ever try to run away. I did not say that it's a weak, cruel, or lazy decision. You need to get your facts straight. :o
But she's combative and violent. She fights the care and still tries to wander away. If you won't leave her house - she'll refuse food and cleaning.
I was taking a shower one morning and she was still groggy/sleepy (thought it was safe) and she tried running away. When I got out, she was already halfway down the street. She was so combative and fighting us so bad one day that we had to have an ambulance and police officers come to settle her down. She's locked us and caregivers out of her house. Etc. etc. etc.
We've found a facility that doesn't use restraints or over-sedate the patients.
This would be something we would eventually have to enforce if we kept her at her own home. So, I do think there's justification. It comes down to the quality of life that a parent could obtain and where's the best place for that?
At home, where she tortures herself morning, day, and night with fighting off the care and trying to demand her independence? Where she recognizes the home but thinks everyone in it is a stranger who is trying to steal her things? Where she sits on the sofa or recliner or kitchen table chair or side of her bed for hours bawling because we won't leave "her home"? Where my mother has so much stress that she cannot sleep, has insomnia for days, cries all the time, and develops abcesses and other things due to stress? She's also lost over 40 lbs.
When the well parent raised the child - she didn't have to endure these things. Sure, all kids have problems and rebellion but to compare this sort of care to the care of a child in development is remarkably naive.
I'm sorry about your mother and we're jealous that she was able to be taken care of by you, in a familiar zone (tho this is debatable , if she had AD). However, this is the last option for us. And it's an extremely sensitive and painful decision to make - but ultimately, the best one, due to our situation and the type of AD patient my granny has become.
I'm not suggesting we want everyone on the board to agree with us and pat us on the back and caress us and say, "Honey, you're doing the best thing."
But - it's best and wisest to consider someone else's situation from all angles before you make the assumption that it's a weak, cruel, or lazy decision.
And since this is a very fresh wound (placed her in a facility on just this past Wednesday)this sort of irresponsible comment is especially hurts and stings.
My mother did indeed have AD and I took care of her from Aug. 1998 to Nov. 2000 the month that she passed away. My mother did not sit around and torture herself nor did she ever try to run away. I did not say that it's a weak, cruel, or lazy decision. You need to get your facts straight. :o
BarbaraH
03-15-2006, 10:14 PM
Peace, please! CherylAnne, you are correcting someone who is young, whose grandmother is in a self-destructive stage of AD and had to be hospitalized last week. He started with "Not to be offensive...." yet you choose to take offense. Why???????? You've had 5 years to adjust to your sad loss. We are not judging you. His wounds are fresh, raw, and painful. Lighten up please.
We are here to help. Peace be with you. Barbara
We are here to help. Peace be with you. Barbara
Jess_Son
03-16-2006, 02:53 AM
My mother did indeed have AD and I took care of her from Aug. 1998 to Nov. 2000 the month that she passed away. My mother did not sit around and torture herself nor did she ever try to run away. I did not say that it's a weak, cruel, or lazy decision. You need to get your facts straight. :o
You may not have said: Weak, Cruel, or Lazy. True.
But you do imply that it's a decision so wrong that you cannot fathom how someone could do it.
And you stretch it further to say that there is NO excuse for doing it.
Moreover, you decide to plant these thoughts into a thread entitled "Desperate" - in which a woman is facing the hardest decision of her life.
So is there a level of kindness we should naturally assume with such a harsh final decision submitted by someone with 1 post?
Did you type all of this while wearing your heart on your sleeve? If so, I'm sorry.
Are we to take your extreme opinions with a grain of salt after you make them known?
You also conveniently left out what type of patient your mother was, how old you were when you took care of her, how long you took care of her, and the teeny tiny fact that she HAD been put in a home on two occassions.
Then there's your daughter who snuck out and left AD Granny alone. God bless her.
"stick them in a stinking nursing home" is said with the same disdain as sticking them in a dog pound and that's really the catalyst for the anger here.
As for getting facts straight, here's a helpful hint:
Deal with the consequences of your words and don't post such a hypercritical response without much thought put into it.
You may feel you can say whatever you want - and you can - but you can't control how someone reacts to it.
Don't retract the power of them when you've had plenty of time to edit - long after they've already struck.
I may not agree with your opinions as you may not with mine and that's life - but I also respect your messages enough to interpret them to the fullest.
And since I do, it's unfair to rearrange the impact of the message and then insult me for not "getting it straight".
But thanks for the heads up. I won't take them as serious from now on.
You may not have said: Weak, Cruel, or Lazy. True.
But you do imply that it's a decision so wrong that you cannot fathom how someone could do it.
And you stretch it further to say that there is NO excuse for doing it.
Moreover, you decide to plant these thoughts into a thread entitled "Desperate" - in which a woman is facing the hardest decision of her life.
So is there a level of kindness we should naturally assume with such a harsh final decision submitted by someone with 1 post?
Did you type all of this while wearing your heart on your sleeve? If so, I'm sorry.
Are we to take your extreme opinions with a grain of salt after you make them known?
You also conveniently left out what type of patient your mother was, how old you were when you took care of her, how long you took care of her, and the teeny tiny fact that she HAD been put in a home on two occassions.
Then there's your daughter who snuck out and left AD Granny alone. God bless her.
"stick them in a stinking nursing home" is said with the same disdain as sticking them in a dog pound and that's really the catalyst for the anger here.
As for getting facts straight, here's a helpful hint:
Deal with the consequences of your words and don't post such a hypercritical response without much thought put into it.
You may feel you can say whatever you want - and you can - but you can't control how someone reacts to it.
Don't retract the power of them when you've had plenty of time to edit - long after they've already struck.
I may not agree with your opinions as you may not with mine and that's life - but I also respect your messages enough to interpret them to the fullest.
And since I do, it's unfair to rearrange the impact of the message and then insult me for not "getting it straight".
But thanks for the heads up. I won't take them as serious from now on.
georgie04
03-16-2006, 03:41 AM
Hey guys, I used to be Georgie 03, now I'm Georgie 04 (don't ask).
I think it important that we remember there are many different kinds of dementia. As far as I know the exact kind of demetia we are dealing with often cannot be established until the person is dead.
In my extended family, there have been cases of dementia where the children were able to take care of their parent, who was forgettful and frightened, but never violent, and, however painful that was, they managed it.
In the case of my SIL, she has been able to be helped up until the last few weeks (and hopefully longer). The cost has been that my dh has had a stroke.
Over the last few weeks, this person that we are all helping and loving through this disease has become (verbally) homicidal - everything that we are doing to help her is a conspirancy. The people that have spent years of their lives helping her are suddenly enemies that she wants to kill. She works herself into such extremes of aggression that I am literally shaking for hours afterwards.
My point is that there are different kinds of dementia. Some can be managed at home, some can't. We all need to understand that. And not ever judge.
regards to all
Georgie
I think it important that we remember there are many different kinds of dementia. As far as I know the exact kind of demetia we are dealing with often cannot be established until the person is dead.
In my extended family, there have been cases of dementia where the children were able to take care of their parent, who was forgettful and frightened, but never violent, and, however painful that was, they managed it.
In the case of my SIL, she has been able to be helped up until the last few weeks (and hopefully longer). The cost has been that my dh has had a stroke.
Over the last few weeks, this person that we are all helping and loving through this disease has become (verbally) homicidal - everything that we are doing to help her is a conspirancy. The people that have spent years of their lives helping her are suddenly enemies that she wants to kill. She works herself into such extremes of aggression that I am literally shaking for hours afterwards.
My point is that there are different kinds of dementia. Some can be managed at home, some can't. We all need to understand that. And not ever judge.
regards to all
Georgie
Sandyspen
03-16-2006, 08:08 AM
Georgie,
Exactly! Not only are there different kinds of dementia, but each patient reacts differently, at different times.
I finally had to put my mom in an adult home and some days I can visit for an hour and be so shaken by her responses that I still come home and shake the rest of the day. I can't even imagine hearing her accusations all day long now. I don't know how I did it for as long as I did.
I can say something as slight as "did you have a nice visit with T," (my brother.) And it will send her into a raging tirade of how I'm telling her lies that never happened just to drive her crazy. Then escalate on and on and on.
Another day, I can ask the exact same question and she'll tell me what a nice visit they had. I just never know what I can say and what I can't say. You never know what will set her into a rage. It's totally unpredictable so coping mechanisms are almost impossible.
In other stages, I could simply agree with anything and she was fine. That just doesn't work with my mom anymore.
And, yes, we should be careful of other's feelings. You never REALLY know what they are enduring with their family member.
Exactly! Not only are there different kinds of dementia, but each patient reacts differently, at different times.
I finally had to put my mom in an adult home and some days I can visit for an hour and be so shaken by her responses that I still come home and shake the rest of the day. I can't even imagine hearing her accusations all day long now. I don't know how I did it for as long as I did.
I can say something as slight as "did you have a nice visit with T," (my brother.) And it will send her into a raging tirade of how I'm telling her lies that never happened just to drive her crazy. Then escalate on and on and on.
Another day, I can ask the exact same question and she'll tell me what a nice visit they had. I just never know what I can say and what I can't say. You never know what will set her into a rage. It's totally unpredictable so coping mechanisms are almost impossible.
In other stages, I could simply agree with anything and she was fine. That just doesn't work with my mom anymore.
And, yes, we should be careful of other's feelings. You never REALLY know what they are enduring with their family member.