Longing4MyMom
02-16-2006, 12:43 AM
My heart is aching yet again for my mother. I sit down and realize how fast time is passing for me between being "mommy" to my children, a good wife to my husband and the many chores that come with everyday life. It all passes so quickly that I rarely have any time to sit and reflect on the day that has past. I don't give myself credit for the things I have done, yet the things I just couldn't get around to, loom over my head until I fall asleep at night. I regret to say that as I set with my mtoher on the couch tonight, I realized in the past week (if not longer) I haven't REALLY set and talked with her much at all. I mean other than chatting about whats on TV or while we are eating supper, I just don't have much time to sit and have a conversation with her. How precious are the words that come out of her mouth. The same mouth that sang such sweet lullabies to me when I was younger. Though her thoughts emerge in bits and pieces, I can still understand her. I guess its very similar to the way I understand my 15month old son when he starts muttering in his own language. I guess that connection between a mother and her child never changes. In my mind, I know she is not going to get any better that where she is right now but my heart just tries its hardest to block it all out. Hide from the truth I guess. Maybe that is why I don't sit and talk with her as much as I should. I guess it could be possible for me to be subconciously finding something else to do in order to avoid the disease that is holding my mother hostage in her own body. Its very hard to sit and watch her struggle to find the words. It's hard to watch her feet shuffle across the floor so carefully, a woman who used to carry herself so well. I really hate this disease more than all my words could ever express! How can the mind play such cruel tricks on a person. I would much rather die a painful death with cancer, than live one day knowing that I have Alzheimers. It just seems so unfair, the kind of unfair you just can't comprehend unless you see its daily destruction. I mean how can you forget how to put your shoes on or how to open a car door? Something you learn to do early in your childhood. I guess we take for granted everything in life that "we" consider so "simple". This goes much deeper in my opinion than losing a leg or an arm but still be able to think and speak with your own mind. There is no prosthesis for your mind! Something that I have learned is that the mind is of much more value than your heart. Death would be more like being able to "live again" if you ask me. I just wish I had the answers as to why my mother had to have this! Knowing that her mind still semi-works, how does her heart feel? How does she deal with the frustrations and will she ever find peace again? I can't even begin to imagine. I'm slowly losing my mother each and every day. I lost my dad when I was 22 and now at 26 I just have a portion of my mother left. Maybe my siblings feel more at peace because they are older but me, I am ANGRY. Angry that my children will never know either of my parents for who the "really were"! If you would have told me all of this was going to be my life 15 years ago, I wouldn't have believed you. I don't believe it now.
Catherine
(Just needed to get it out) see if anyone feels like me
Catherine
(Just needed to get it out) see if anyone feels like me
Sponsor
BarbaraH
02-16-2006, 01:24 AM
Catherine, I do understand although my mother didn't start to leave me until I was almost twice your age - but we'd lived hundreds of miles apart for 30+ years, so I saw her only a few weeks each year for all of that time.
It's not fair, it's awful and it's difficult to be the authority when you speak to the one who was always the one in authority. All of us understand the uncomfortable transition that takes place after the heartbreaking realization that your loved one is losing her abilities, intelligence, humor, and all that make her who she is.
My mother enjoyed it when I read to her no matter what it was that I was reading. Even after she had difficulty finding words, she could sing hymns and some songs if I sang too (and I don't have a good voice). At her last birthday party just months before her death and 14 months after she forgot how to walk, she joined in singing the birthday song. Where was that in her memory??? She had such a surprised and happy face and she recognized that song and the words. She connected with us when she'd been somewhere else for so long.
Perhaps there are songs that you and your mother can sing together now. Perhaps your mother and your son can do simple puzzles together. Take pictures to show your children who their grandmother was, how she smiled, and tell them how much she would have loved being there with them.
Bless your heart. (((hugs))) Barbara
It's not fair, it's awful and it's difficult to be the authority when you speak to the one who was always the one in authority. All of us understand the uncomfortable transition that takes place after the heartbreaking realization that your loved one is losing her abilities, intelligence, humor, and all that make her who she is.
My mother enjoyed it when I read to her no matter what it was that I was reading. Even after she had difficulty finding words, she could sing hymns and some songs if I sang too (and I don't have a good voice). At her last birthday party just months before her death and 14 months after she forgot how to walk, she joined in singing the birthday song. Where was that in her memory??? She had such a surprised and happy face and she recognized that song and the words. She connected with us when she'd been somewhere else for so long.
Perhaps there are songs that you and your mother can sing together now. Perhaps your mother and your son can do simple puzzles together. Take pictures to show your children who their grandmother was, how she smiled, and tell them how much she would have loved being there with them.
Bless your heart. (((hugs))) Barbara
Sandyspen
02-16-2006, 08:10 AM
Catherine,
Like Barbara, I didn't have to go through this at such a young age. I feel so badly for you. I can't imagine how devastating it must be.
Reading your words meant so much to me. At 59, I still feel exactly as you do. It just isn't fair. What is so disturbing to me is that we are all grieving. Normally, this is done afterwards. But in our case, we grieve for years before their life ends. That is hard, to grieve while we're still with them and caring for them.
I know what you mean. I lay awake every night, wondering what she's "really" thinking, what sensible thoughts are left, how much does she really know.
I also think, by writing our thoughts down, whether here or in a journal, we're working through our grief. It's a good thing. We have an outlet for pent-up anger and rage and guilt and sorrow. I'm glad you're here, and I'm glad you're open with your feelings.
You've helped me "see" more of myself, feel more of my own sorrow. And we'll work through this. We really will.
Like Barbara, I didn't have to go through this at such a young age. I feel so badly for you. I can't imagine how devastating it must be.
Reading your words meant so much to me. At 59, I still feel exactly as you do. It just isn't fair. What is so disturbing to me is that we are all grieving. Normally, this is done afterwards. But in our case, we grieve for years before their life ends. That is hard, to grieve while we're still with them and caring for them.
I know what you mean. I lay awake every night, wondering what she's "really" thinking, what sensible thoughts are left, how much does she really know.
I also think, by writing our thoughts down, whether here or in a journal, we're working through our grief. It's a good thing. We have an outlet for pent-up anger and rage and guilt and sorrow. I'm glad you're here, and I'm glad you're open with your feelings.
You've helped me "see" more of myself, feel more of my own sorrow. And we'll work through this. We really will.
Martha H
02-16-2006, 09:18 AM
Yes, it is grieving. In fact, it is a kind of dying. The person we loved so much is already gone, only an occasional light shines through. I find I can cope with it far better now that she is safely in a nursing home, but I still miss her. When somethig interesting or exciting happens, my first thought is, "I must tell Mom.." then I realize she will not know what I am talking about or even who I am, and any response I get will be inappropriate to the situation. So I don't tell her. I have already lost her.
Thank God I am already a grandmother myself, not a very young mother like you, Catherine. I hope you find the strength to cope with your huge loss.
Love,
Martha
Thank God I am already a grandmother myself, not a very young mother like you, Catherine. I hope you find the strength to cope with your huge loss.
Love,
Martha
fourt9rkim
02-16-2006, 09:57 AM
I know what the grieving now feeling is all too well lately...this horrible disease takes away the vibrant, full-of-life people we knew for so long, and turns them into a bitter, angry, and violent, self-centered person. All the things my mother never was. I am in the grieving process now, because the mother I know and love with all of my heart is not here most of the time. She has been replaced by someone whose heart is filled with hate, anger, distrust.
I have a co-worker who is dealing with her mother having lung cancer right now....I ran into them at a restaurant about a month ago, and Mary asked how my mom was doing. I told her, and I looked at her and said that if given the choice, I'd MUCH rather deal with what she is dealing with...at least she knows what person she will be waking up to in the mornings....I never know what person I will see in the mornings, or when I come home from work.
Hugs to all of us are in order right now!
I have a co-worker who is dealing with her mother having lung cancer right now....I ran into them at a restaurant about a month ago, and Mary asked how my mom was doing. I told her, and I looked at her and said that if given the choice, I'd MUCH rather deal with what she is dealing with...at least she knows what person she will be waking up to in the mornings....I never know what person I will see in the mornings, or when I come home from work.
Hugs to all of us are in order right now!
LuvMyLilDoggie
02-16-2006, 01:34 PM
Hi Catherine!
I feel kind of odd because I'm not grieving now. Maybe it's because my dad is 700 miles from here right now and has been for about 9 months. Or maybe it's because he's gotten through the extremely difficult stage and is becoming milder than before. I don't know.
Like you, I lost my mom at an early age. I was 31. She was 67 in 1993. (AM I TELLING MY AGE????) :D
Looking back, my dad started showing signs of AD when he was 69, two years after my mom died. I had a young child. He was about 7 at the time. Even he noticed the changes in my dad. My son loves his grandpa and in grandpa's eyes, his grandson can do no wrong. That's nice but when it came time to take away the Playstation because my son was not behaving or not doing his homework, grandpa would always come to Bo's defense. Then the friction came and sometimes an argument. And no matter what happened, I was ALWAYS the bad guy.
You asked if your mother would ever find peace again. I strongly believe she will. I've seen it happen in my own family. My maternal grandma, my paternal grandpa as well as my dad, an aunt and an uncle all suffer or have suffered with AD. Both of my grandparents died from it. In the later stages, both were happy and content and very childlike. I remember my grandma loved to play with the many dolls she created for herself years before. And if one of her "babies" were "lost", she'd always know it. My dad is transitioning I believe to that phase now. My aunt has long since transitioned and my uncle I believe has too.
Yes, your mother will find peace after this angry person is gone. I believe ther are three phases to this disease for the charge as well as the caregivers and families.
1. Denial: Refusal to believe or accept that there's a problem.
2. Anger/Frustration/Fear: There could be many different reasons for this. For the charge, I think it's mostly because no matter how hard they try, they know they can no longer do things they used to be able to do. They don't want to be a burden to anyone and they don't want to lose their independence. That's where the anger and frustration come in. The fear comes in when they think about the future.
For the caregiver, I think it's pretty much the same but some of us I noticed carry the burden of our past relationship to our charge. This greatly increases the anger and frustration (I know it did for me) until we resolve it and forgive ourselves and our charges for our past behaviors/thoughts/feelings.
And of course, there's the stress of raising your children to adulthood while helping your parent/spouse become childlike. It's much easier to help a child grow up and help them enhance their knowledge than to watch a parent/spouse lose what they once knew.
3. (this was the hardest one for me but seems to bring peace to my dad) Acceptance.
I didn't want to accept AD because that would mean that the disease was real and I would have to face it for what it really was. I could no longer "pretend" that dad's disease was something that the doctors could cure today or next week or next month. I was really stubborn with this one. But with the help of these people here and a really good friend who has amazing insight, I was able to see that acceptance didn't mean giving in to the disease at all. It meant that I couldn't control it. My friend with insight told me that trying to control AD is like driving a Nascar race at 200mph with those bald tires they use on an inch of smooth ice. It can't be done. So take it day by day. She said I should do what I can and what must be done. But I shouldn't feel guilty about what I can't do; that I should give it all to a higher power. I try to but sometimes the "old me", the one who tried to "fix, manage and control" shows up and man, am I in trouble then! :)
My friend with insight also told me to prioritize (I think I spelled that wrong but it took three tries to get that!). :) I made a list of things I felt needed to be taken care of and found that most of the things on my list either weren't ast important as I thought or were not my responsibility or buisness to take care of in the first place.
So what if I didn't get a chance to run that errand or do that load of laundry. I took my kid to school. I went to the doctor. I paid those bills. I did some housework and will do the rest when I have time. I'm happy I got those things done. But I'm most happy that I took the time to close my eyes and shut myslef out from all worries from 2:02pm-2:07pm so I could recoupe my sanity if only for a while. And oh! I lit some candle and put on some soothing music took a long hot bath after I instructed hubby and son not to come a- knockin' at the door.
Now Catherine, here's your assignment for today:
Take just 5 minutes for YOU. Don't allow yourself to think of any worrisome things in that time. If you can, take more time. But DON'T FEEL GUILTY ABOUT IT! That, my dear, is an order! ;)
I find that a nice hot bubble bath works wonders for me.
And sometimes I even go out and buy myself something, even if it's just to Dairy Queen for a chocolate malt.
Now these things certainly aren't going to solve your problems. But they will help to clear your head. And as my grandma used to say "The clear mind makes sound decisions. The cluttered mind decides in haste."
Remember BE KIND TO YOURSELF!!! YOU DESERVE IT!!!
We are our harshest critics, aren't we?
Love, Barb
I feel kind of odd because I'm not grieving now. Maybe it's because my dad is 700 miles from here right now and has been for about 9 months. Or maybe it's because he's gotten through the extremely difficult stage and is becoming milder than before. I don't know.
Like you, I lost my mom at an early age. I was 31. She was 67 in 1993. (AM I TELLING MY AGE????) :D
Looking back, my dad started showing signs of AD when he was 69, two years after my mom died. I had a young child. He was about 7 at the time. Even he noticed the changes in my dad. My son loves his grandpa and in grandpa's eyes, his grandson can do no wrong. That's nice but when it came time to take away the Playstation because my son was not behaving or not doing his homework, grandpa would always come to Bo's defense. Then the friction came and sometimes an argument. And no matter what happened, I was ALWAYS the bad guy.
You asked if your mother would ever find peace again. I strongly believe she will. I've seen it happen in my own family. My maternal grandma, my paternal grandpa as well as my dad, an aunt and an uncle all suffer or have suffered with AD. Both of my grandparents died from it. In the later stages, both were happy and content and very childlike. I remember my grandma loved to play with the many dolls she created for herself years before. And if one of her "babies" were "lost", she'd always know it. My dad is transitioning I believe to that phase now. My aunt has long since transitioned and my uncle I believe has too.
Yes, your mother will find peace after this angry person is gone. I believe ther are three phases to this disease for the charge as well as the caregivers and families.
1. Denial: Refusal to believe or accept that there's a problem.
2. Anger/Frustration/Fear: There could be many different reasons for this. For the charge, I think it's mostly because no matter how hard they try, they know they can no longer do things they used to be able to do. They don't want to be a burden to anyone and they don't want to lose their independence. That's where the anger and frustration come in. The fear comes in when they think about the future.
For the caregiver, I think it's pretty much the same but some of us I noticed carry the burden of our past relationship to our charge. This greatly increases the anger and frustration (I know it did for me) until we resolve it and forgive ourselves and our charges for our past behaviors/thoughts/feelings.
And of course, there's the stress of raising your children to adulthood while helping your parent/spouse become childlike. It's much easier to help a child grow up and help them enhance their knowledge than to watch a parent/spouse lose what they once knew.
3. (this was the hardest one for me but seems to bring peace to my dad) Acceptance.
I didn't want to accept AD because that would mean that the disease was real and I would have to face it for what it really was. I could no longer "pretend" that dad's disease was something that the doctors could cure today or next week or next month. I was really stubborn with this one. But with the help of these people here and a really good friend who has amazing insight, I was able to see that acceptance didn't mean giving in to the disease at all. It meant that I couldn't control it. My friend with insight told me that trying to control AD is like driving a Nascar race at 200mph with those bald tires they use on an inch of smooth ice. It can't be done. So take it day by day. She said I should do what I can and what must be done. But I shouldn't feel guilty about what I can't do; that I should give it all to a higher power. I try to but sometimes the "old me", the one who tried to "fix, manage and control" shows up and man, am I in trouble then! :)
My friend with insight also told me to prioritize (I think I spelled that wrong but it took three tries to get that!). :) I made a list of things I felt needed to be taken care of and found that most of the things on my list either weren't ast important as I thought or were not my responsibility or buisness to take care of in the first place.
So what if I didn't get a chance to run that errand or do that load of laundry. I took my kid to school. I went to the doctor. I paid those bills. I did some housework and will do the rest when I have time. I'm happy I got those things done. But I'm most happy that I took the time to close my eyes and shut myslef out from all worries from 2:02pm-2:07pm so I could recoupe my sanity if only for a while. And oh! I lit some candle and put on some soothing music took a long hot bath after I instructed hubby and son not to come a- knockin' at the door.
Now Catherine, here's your assignment for today:
Take just 5 minutes for YOU. Don't allow yourself to think of any worrisome things in that time. If you can, take more time. But DON'T FEEL GUILTY ABOUT IT! That, my dear, is an order! ;)
I find that a nice hot bubble bath works wonders for me.
And sometimes I even go out and buy myself something, even if it's just to Dairy Queen for a chocolate malt.
Now these things certainly aren't going to solve your problems. But they will help to clear your head. And as my grandma used to say "The clear mind makes sound decisions. The cluttered mind decides in haste."
Remember BE KIND TO YOURSELF!!! YOU DESERVE IT!!!
We are our harshest critics, aren't we?
Love, Barb
Martha H
02-16-2006, 02:08 PM
Barb, when you get tired of driving that school bus, hire yourself out as a life counselor! Your words are absolutely perfect. I went through it with Mom and I agree with you.
One thng I did when Mom finally had an Aide with her from 9 to 3, was to stop off at a corner cafe on my way home from school - even if I only had 20 minutes before I had to be home. I would get a treat for myself, something I didn't usually eat. Like a grilled cheese sandwich with bacon! I became friends with 3 waitresses there ... before I left NY one even gave me 3 photographs of Central Park by night she had taken herself. I loved those 'stolen' moments...
I only did it for about 3 months, because I had mistakenly thought it would save money if I got home at 2:30 or sometimes at 2:00 ... and let the aide go home. But when the bills came in, we paid for 6 hours no matter what time she went home. That's when I began to grab those minutes for MYSELF! That kept me sane for the last few months - that and all the excellent companions and friends I found on this Board...
Love,
Martha
One thng I did when Mom finally had an Aide with her from 9 to 3, was to stop off at a corner cafe on my way home from school - even if I only had 20 minutes before I had to be home. I would get a treat for myself, something I didn't usually eat. Like a grilled cheese sandwich with bacon! I became friends with 3 waitresses there ... before I left NY one even gave me 3 photographs of Central Park by night she had taken herself. I loved those 'stolen' moments...
I only did it for about 3 months, because I had mistakenly thought it would save money if I got home at 2:30 or sometimes at 2:00 ... and let the aide go home. But when the bills came in, we paid for 6 hours no matter what time she went home. That's when I began to grab those minutes for MYSELF! That kept me sane for the last few months - that and all the excellent companions and friends I found on this Board...
Love,
Martha
Longing4MyMom
02-16-2006, 02:15 PM
Wow! Thanks so much everyone. I am definately going to find those few minutes today to just take time for myself. I guess I have to get over the inner guilt of neglecting something else in order to redeem myself (so to speak). It's so nice being able to come somewhere and vent and then on top of it all receive wonderful advice from the many of you who have been there or are there right now. I just can't seem to find a balance in my life. As soon as I find some sort of routine something else seems to change.
I'm going to start working a little harder on it though and I will definately take that five minutes to myself.
Big hugs everyone
Catherine
I'm going to start working a little harder on it though and I will definately take that five minutes to myself.
Big hugs everyone
Catherine
Longing4MyMom
02-16-2006, 02:19 PM
Oh and mom started this program today where they will come and pick her up and take her to the OIP (Outpatient Clinic) where she will eat lunch with other people dealing with similar things, then they practice relaxation techniques, talk about their stresses, and other things, all while having a doctor there observing them. Have any of you had something similar done with your loved ones? If so, why do I feel sad and guilty like I'm sending my child off on their first day of school? It took everything I had not to cry when they picked her up. I really hope she enjoys it.
Oh yea, and the doc put her on Aricept and yesterday she kept saying she was dizzy and the room was spinning and then when she got up and went to the bathroom she vomitted all over my floor...I sent a note with her today asking the doctor to try her on something else because that is the only medication he had changed. I hope they get it straight. I hate seeing her so confunsed and disoriented.
Catherine
Oh yea, and the doc put her on Aricept and yesterday she kept saying she was dizzy and the room was spinning and then when she got up and went to the bathroom she vomitted all over my floor...I sent a note with her today asking the doctor to try her on something else because that is the only medication he had changed. I hope they get it straight. I hate seeing her so confunsed and disoriented.
Catherine
Martha H
02-16-2006, 03:23 PM
Aricept has stomach/intestinal side effects - but perhaps on a lower dosage she could tolerate it. It is one of 2 meds that help ealry onset AD. It may even be worth a few days of distress (stomach gets used to it) to reduce the speed of deterioration.
M
M
LuvMyLilDoggie
02-16-2006, 07:20 PM
So your mom is going to an Outpatient clinic.
Don't worry. Just as sending your child off to their first day of school, it hurts but it'll get easier. And it's understandable that you feel guilty for sending your mom there. You have become the mom and she the child. But don't allow yourself to stay in the guilt mode. It does no good for you or your mom.
How long will she be there each time she goes? Is it every day? How long will it last?
I think it's fantastic that you're sending her there. I think it'll be very good for her and you. She'll get the good food, professional care and socialization she needs. And she might feel a little more independent. What a great gift you've given her! You couldn't have possibly done a more selfless, loving and caring thing. I know you don't see it that way now but you will.
And now that you'll have time away from mom, it'll be easier for you to take time for yourself and the things you need to do. Good time to prioritize the things that worry you so and to reflect on anything positive in your life. Forcing yourself to see anything positive can help you draw strength for the trying times. And think hard about your positive attributes. There are so many good things about you that I'll bet you don't even notice. We see it through your posts.
Take care of YOU FIRST and the rest will fall into place. It took me 41 years to learn that. But the last two years have been much better since I've put me first on my list of caretaking.
OK! OK! I'M 43! :eek:! There, I said it! :D
Love, Barb
Don't worry. Just as sending your child off to their first day of school, it hurts but it'll get easier. And it's understandable that you feel guilty for sending your mom there. You have become the mom and she the child. But don't allow yourself to stay in the guilt mode. It does no good for you or your mom.
How long will she be there each time she goes? Is it every day? How long will it last?
I think it's fantastic that you're sending her there. I think it'll be very good for her and you. She'll get the good food, professional care and socialization she needs. And she might feel a little more independent. What a great gift you've given her! You couldn't have possibly done a more selfless, loving and caring thing. I know you don't see it that way now but you will.
And now that you'll have time away from mom, it'll be easier for you to take time for yourself and the things you need to do. Good time to prioritize the things that worry you so and to reflect on anything positive in your life. Forcing yourself to see anything positive can help you draw strength for the trying times. And think hard about your positive attributes. There are so many good things about you that I'll bet you don't even notice. We see it through your posts.
Take care of YOU FIRST and the rest will fall into place. It took me 41 years to learn that. But the last two years have been much better since I've put me first on my list of caretaking.
OK! OK! I'M 43! :eek:! There, I said it! :D
Love, Barb
Longing4MyMom
02-16-2006, 11:05 PM
Barb, you are so funny! 43 is not near old :bouncing: You have made me laugh twice today and that is my favorite thing to do. :) Mom seems to have enjoyed the outpatient thing other than the fact that she came home and complained that she didn't like the food and the ride there and back took to long. I don't think she could ever be 100% satisfied with anything. Her complaining starts off first thing in the morning with how much sugar I put in her cereal (it's either way too much or not enough) :yawn: Aside from that though she said she liked it. I told her that I would take her from now on if the ride was too long :rolleyes: anything to satisfy the queen lol! I love her though
She is going to be going three times a week from 11-2. I will admit that while I did miss her, I did enjoy that alone time---and didn't do ANYTHING because my little boy was napping the whole time :D :bouncing: I just hope she grows to like it more because I will find it very hard to send her anywhere that she doesn't like.
Oh and then...she of course has to tell me that there was this guy there that kept making eyes at her and her at him :eek: I tell you one thing, she never ceases to amaze me. Just like a girl with her first crush.
Catherine
She is going to be going three times a week from 11-2. I will admit that while I did miss her, I did enjoy that alone time---and didn't do ANYTHING because my little boy was napping the whole time :D :bouncing: I just hope she grows to like it more because I will find it very hard to send her anywhere that she doesn't like.
Oh and then...she of course has to tell me that there was this guy there that kept making eyes at her and her at him :eek: I tell you one thing, she never ceases to amaze me. Just like a girl with her first crush.
Catherine
dolores129
02-17-2006, 12:22 AM
I sit here reading all these messages as tears well up and roll off my face. My mom is also young and it is the hardest thing to lose them daily. I have help daily while I work and then I visit after work. Today, I chose to go to a community meeting...something of interest to me after having a focused productive day at work. I got home around 8p and had 3 messages from my husband because my mom had apparently walked across the street (she didn't knock just opened a neighbor's door and went in) and told the neighbor that her car was stolen. The neighbor is new and proceeded to call the police. We moved her car 7 months ago so she wouldn't drive it. Not sure of all the details, but someone called my house, my husband happened to be home and he went to check it out. He explained to the officer her condition who was in the midst of making a report. Now that the days are longer, she is wandering out after the careprovider leaves at 6pm. I know I have to place her but I have been dragging the decision. I guess I can't wait much longer. This means placing my mom --a hard enough decision but it also means taking full custody of my 43 year old down's sydrome sister as my 17 year daughter prepares for her senior year. (this is the selfish part of me.) Anyway, I guess I cry for my mom who I adored, for whats become of her...and for having to make these decisions. I am it; no other family to help me (my dad died 4 years ago and no other sibilings). Thanks for listening!
ToBeFreeToRoam
02-17-2006, 03:29 AM
Hi Everyone,
I do not have a lot to add to this thread. But, I have a few questions! :>
Catherine, Martha and Dolores: First - how did you get your charges into these care places or have them come to your homes? How did you find them or know about them in the first place? And, how (or did you not even try) did you convince your AD patient that that was a good thing to do???
Also, when yall started the care thing, did you start out with a shorter amount of time, like 1 day, then 2 days, or 1/2 day and then 2, 1/2 days??? And, did any of yall, except for Delores, have another person, that might complain or not want them to go to a care (day out) place? Or how does (if it applies to anyone) the other person involved (like my mom) act when the extra care person is around?
I am hoping we can do this sometime this year. Especially this summer. My mom is dying to get out and do things. She is loosing what few friends she has, because she does not go very much! I did volunteer to come and play with my dad, at least 1 time a week, so she could go, but so far she has not taken me up on it!!!
Thanks, we all need the help and the rest and the relaxation. Me and my mom!!! And all of you guys, especially need it. My dad is not too bad yet. I imagine that is still to come!!!!! :<
Thanks for any help yall can give me.
Love, Wannabe
I do not have a lot to add to this thread. But, I have a few questions! :>
Catherine, Martha and Dolores: First - how did you get your charges into these care places or have them come to your homes? How did you find them or know about them in the first place? And, how (or did you not even try) did you convince your AD patient that that was a good thing to do???
Also, when yall started the care thing, did you start out with a shorter amount of time, like 1 day, then 2 days, or 1/2 day and then 2, 1/2 days??? And, did any of yall, except for Delores, have another person, that might complain or not want them to go to a care (day out) place? Or how does (if it applies to anyone) the other person involved (like my mom) act when the extra care person is around?
I am hoping we can do this sometime this year. Especially this summer. My mom is dying to get out and do things. She is loosing what few friends she has, because she does not go very much! I did volunteer to come and play with my dad, at least 1 time a week, so she could go, but so far she has not taken me up on it!!!
Thanks, we all need the help and the rest and the relaxation. Me and my mom!!! And all of you guys, especially need it. My dad is not too bad yet. I imagine that is still to come!!!!! :<
Thanks for any help yall can give me.
Love, Wannabe
Martha H
02-17-2006, 07:16 AM
This is how it worked for me: After Mom got lost for a whole day - missing from 7 AM until 5 PM and last seen leaving her Senior center at about 8 AM - (we never did find out where she was all day) -- I told my brother and my sister that I was about to spend my life savings to put her into a nursing home, I could not stand the stress any longer.
They finally agreed to get a Home Health Aide. My brother called several agencies (listed in the phone book) and arranged for a meeting .. a registered nurse came to the apartment to assess Mom in the presence of myself and Bill. She also told us that one of us had to have Power of Attorney. Mom passed the physical (you have to be reasonably fit, they do not take dying patients) and the next day Bill took her to a Notary Public with the forms he got from the agency, she signed and he had POA.
The Notary did not ask if she were mentally fit or not.
The next week an aide came from 9 to 3 for 4 days. We had foolishly thought that on Fridays, Mom would be OK on her own, since she promised to stay home. She didn't. She went to the swimming pool and then couldn't find her way home. We needed the aide fridays too!
Then a new hassle, B and E were sharing the cost since both of them had far more money than I do, and I was the caregiver for the rest of the day and all night, and all weekend.
But E had agreed to pay 2 days not 2.5, Bill wound up paying 3 days.
The aide came at 9 AM and I left at 6 AM for my job. I worried that Mom would get up, leave the house etc. She did burn a few pots trying to make coffee or oatmeal, took 3 days of her pills at once, or forgot them, lost money, threw out good things, stashed old junk in her dresser, put on dirty clothes. She also dressed in my way too long clothes and /or put on summer clothes in winter or the opposite, but worst of all was that she HATED the aide.
And because the story they gave her was "you don't REALLY need help, its just that Martha worries so much about you" she blamed ME. For weeks she glared at me and was angry, banging doors and giving me the cold shoulder.
There were a few hassles when the aide did not show up and a substitute came who couldn't find the house or didn't know how to take Mom to the Senior Center (by public bus) ..and said ''she TOLD me it was that way" not having been told that Mom had Dementia!
By then we had decided that I was so burnt out that my life was not worth living. Bill agreed to take Mom into his house in June .. the school year ended June 15, I flew to Indiana June 16, Mom was taken to Bill's house June 9. I cleared out all her and all my things while working full time and taking care of Mom! (I amaze myself) and what was left of her old furniture and books and pictures etc Bill gave to a poor family just arrived from Honduras.
She was much happier at his house - but after 3 months fell on the stairs, broke her hip, was taken to the hospital. had an operation, went to rehab, didn't learn to walk again and went into the NH part of that same facility. Bill found that rehab/NH through a new neighbor across the street, who works in administration there and recommmended it highly.
Long story long .. but that's how it went!
Love,
Martha
They finally agreed to get a Home Health Aide. My brother called several agencies (listed in the phone book) and arranged for a meeting .. a registered nurse came to the apartment to assess Mom in the presence of myself and Bill. She also told us that one of us had to have Power of Attorney. Mom passed the physical (you have to be reasonably fit, they do not take dying patients) and the next day Bill took her to a Notary Public with the forms he got from the agency, she signed and he had POA.
The Notary did not ask if she were mentally fit or not.
The next week an aide came from 9 to 3 for 4 days. We had foolishly thought that on Fridays, Mom would be OK on her own, since she promised to stay home. She didn't. She went to the swimming pool and then couldn't find her way home. We needed the aide fridays too!
Then a new hassle, B and E were sharing the cost since both of them had far more money than I do, and I was the caregiver for the rest of the day and all night, and all weekend.
But E had agreed to pay 2 days not 2.5, Bill wound up paying 3 days.
The aide came at 9 AM and I left at 6 AM for my job. I worried that Mom would get up, leave the house etc. She did burn a few pots trying to make coffee or oatmeal, took 3 days of her pills at once, or forgot them, lost money, threw out good things, stashed old junk in her dresser, put on dirty clothes. She also dressed in my way too long clothes and /or put on summer clothes in winter or the opposite, but worst of all was that she HATED the aide.
And because the story they gave her was "you don't REALLY need help, its just that Martha worries so much about you" she blamed ME. For weeks she glared at me and was angry, banging doors and giving me the cold shoulder.
There were a few hassles when the aide did not show up and a substitute came who couldn't find the house or didn't know how to take Mom to the Senior Center (by public bus) ..and said ''she TOLD me it was that way" not having been told that Mom had Dementia!
By then we had decided that I was so burnt out that my life was not worth living. Bill agreed to take Mom into his house in June .. the school year ended June 15, I flew to Indiana June 16, Mom was taken to Bill's house June 9. I cleared out all her and all my things while working full time and taking care of Mom! (I amaze myself) and what was left of her old furniture and books and pictures etc Bill gave to a poor family just arrived from Honduras.
She was much happier at his house - but after 3 months fell on the stairs, broke her hip, was taken to the hospital. had an operation, went to rehab, didn't learn to walk again and went into the NH part of that same facility. Bill found that rehab/NH through a new neighbor across the street, who works in administration there and recommmended it highly.
Long story long .. but that's how it went!
Love,
Martha
Sandyspen
02-17-2006, 09:07 AM
Hi Wannabe,
Several months ago, I called my mom's HMO to ask what they would pay for and what they wouldn't. When the lady learned that mom had AD, she offered to send me a caregiver's packet. I expected a small pamphlet or something similar. I received a huge package. It contained large soft-back books about caregiving, smaller books, a list of all the large institutional nursing homes in town + phone number, and 8-10 pages of local care-givers with phone number and rates. A lot of informative information. I was really surprised. I did learn that her HMO would pay for the first 100 days of nursing home, and a portion of the caregivers/home aides if ordered by her physician. They don't pay any for alf's.
My brother thinks I should have a home aide twice a week, but since I'm home all day and mom is still self-sufficient, I can't see where it would help me. Her only mission would be to occupy mom, which she does pretty well for herself.
You know, Wannabe, you sound like me. I want to give my mom choices, let her decide, not force things on her, but so far that just hasn't happened. I feel that I allowed her to live alone as long as I possibly could. She lived in a pretty isolated, adult mobile home park. Very safe. But, she had taken to roaming around and often entered the managers home without knocking while leaving the doors to her own home wide open. The last episode was a ranting, roaming nightmare in her night gown.....demanding that someone give her car back! and wailing about her absent children that hadn't been to visit her in years. I was there the day before and we'd bought groceries together.
I know that she absolutely will not go willingly to a nursing home, but if the events of this past week continue, I know that I have no choice. My shoulder blades are up around my ears with stress, and I just can't do it.
Every morning, except one, since last Friday....she has raged and raged for hours to go home. Yesterday morning was so bad, I couldn't even speak. I sat on the couch dumfounded for hours. When my dh asked how my day went, I couldn't even repeat it. Recounting it was horrifying and today I have my camcorder set to record if it happens because I simply can't repeat the vile things she said to me.
The saddest part of all is that after a nap, she is that sweet little girl again and has no memory at all of what she's said. Yet, I'm destroyed and can't even look at her for the horrific names and accusations she's slung at me. Logically, I know it's the "impostor," but that doesn't help.
I don't feel that I have a choice anymore either. If I don't find a place for her, this will destroy me, too.
Several months ago, I called my mom's HMO to ask what they would pay for and what they wouldn't. When the lady learned that mom had AD, she offered to send me a caregiver's packet. I expected a small pamphlet or something similar. I received a huge package. It contained large soft-back books about caregiving, smaller books, a list of all the large institutional nursing homes in town + phone number, and 8-10 pages of local care-givers with phone number and rates. A lot of informative information. I was really surprised. I did learn that her HMO would pay for the first 100 days of nursing home, and a portion of the caregivers/home aides if ordered by her physician. They don't pay any for alf's.
My brother thinks I should have a home aide twice a week, but since I'm home all day and mom is still self-sufficient, I can't see where it would help me. Her only mission would be to occupy mom, which she does pretty well for herself.
You know, Wannabe, you sound like me. I want to give my mom choices, let her decide, not force things on her, but so far that just hasn't happened. I feel that I allowed her to live alone as long as I possibly could. She lived in a pretty isolated, adult mobile home park. Very safe. But, she had taken to roaming around and often entered the managers home without knocking while leaving the doors to her own home wide open. The last episode was a ranting, roaming nightmare in her night gown.....demanding that someone give her car back! and wailing about her absent children that hadn't been to visit her in years. I was there the day before and we'd bought groceries together.
I know that she absolutely will not go willingly to a nursing home, but if the events of this past week continue, I know that I have no choice. My shoulder blades are up around my ears with stress, and I just can't do it.
Every morning, except one, since last Friday....she has raged and raged for hours to go home. Yesterday morning was so bad, I couldn't even speak. I sat on the couch dumfounded for hours. When my dh asked how my day went, I couldn't even repeat it. Recounting it was horrifying and today I have my camcorder set to record if it happens because I simply can't repeat the vile things she said to me.
The saddest part of all is that after a nap, she is that sweet little girl again and has no memory at all of what she's said. Yet, I'm destroyed and can't even look at her for the horrific names and accusations she's slung at me. Logically, I know it's the "impostor," but that doesn't help.
I don't feel that I have a choice anymore either. If I don't find a place for her, this will destroy me, too.
cyt
02-17-2006, 10:12 AM
Catherine, after reading your original post I was so impressed with your writing ability that I wanted to let you know. You make the words flow so smoothly with your thoughts and feelings. Have you ever thought about writing a book or perhaps a magazine article as an outlet using your words to express your feelings and grief? This would be so helpful to so many who are going through these same feelings. It always helps to know you are not alone in your journey. Writing on this board helps, but doesn't reach as many people as you could otherwise. I think you have a real talent for putting your thoughts into words. Thank you for expressing them here and helping others. My thoughts and prayers are with you and all the others here who are going through this hell called AD. Keep writing, you are such a good daughter, and mother, you think of others and put them above your own needs and wants. May you be blessed in the blessing. Cindy
ToBeFreeToRoam
02-17-2006, 01:15 PM
Hi Sandy,
Thanks for the info and the story. My parents have Medicare and a supplemental, but does not kick in til 2 - 3 thousand dollars. I guess that I could call both of them and see what they might do. Or, I might try on line. Some of them still will not talk to me without talking to one of my parents, first. We do have a POA, but I am not 1st, I am 2nd.
I do need to start with calling and getting information - sort of like you did. Because both of my parents are slowly going down hill. And part of my moms faster fall, is because of being my fathers caregiver!
Thanks again.
Love, Wannabe
Thanks for the info and the story. My parents have Medicare and a supplemental, but does not kick in til 2 - 3 thousand dollars. I guess that I could call both of them and see what they might do. Or, I might try on line. Some of them still will not talk to me without talking to one of my parents, first. We do have a POA, but I am not 1st, I am 2nd.
I do need to start with calling and getting information - sort of like you did. Because both of my parents are slowly going down hill. And part of my moms faster fall, is because of being my fathers caregiver!
Thanks again.
Love, Wannabe
Sandyspen
02-17-2006, 01:36 PM
Wannabe,
I was surprised, myself, that my mom's was an HMO. It's automatically deducted from her ss, and not bad at all. $80 a month. She's had it since she started social security at 65. I guess it was an option they gave her and she took it. She doens't remember now.
My dh is soon to retire and I'm gonna make certain he has it included, also, if it's still available. You can't buy into an HMO for that price. When I quit working outside the home, it was nearly $500 a month just for me.
I was surprised, myself, that my mom's was an HMO. It's automatically deducted from her ss, and not bad at all. $80 a month. She's had it since she started social security at 65. I guess it was an option they gave her and she took it. She doens't remember now.
My dh is soon to retire and I'm gonna make certain he has it included, also, if it's still available. You can't buy into an HMO for that price. When I quit working outside the home, it was nearly $500 a month just for me.
ToBeFreeToRoam
02-17-2006, 03:31 PM
Hi Sandy
I guess it might be good for me to call the medicare people (or look at one of their insurance papers). They may have another co. like that??? My father is a veteran too. Not a hurt one, tho. But, he might can get something out of that?? And then, my parents have a long term care ins. policy. But, I hear that some do not cover Alzheimers!!! I need to start checking fast. I guess right now - cause tax time is coming up and I will be busy doing theirs!!!
Thanks again Sandy. Sorry, if I got the thread off course, everyone.
Love, Wannabe
I guess it might be good for me to call the medicare people (or look at one of their insurance papers). They may have another co. like that??? My father is a veteran too. Not a hurt one, tho. But, he might can get something out of that?? And then, my parents have a long term care ins. policy. But, I hear that some do not cover Alzheimers!!! I need to start checking fast. I guess right now - cause tax time is coming up and I will be busy doing theirs!!!
Thanks again Sandy. Sorry, if I got the thread off course, everyone.
Love, Wannabe
Martha H
02-17-2006, 03:59 PM
Medicare is complicared and differs in various states. You can be in 'regular' Medicare, for which the cost is deducted from your social security. Normally this pays 80% of covered treatments. I buy a supplementary insurance to pay for the other 20%. But even then you have to pay a yearly deductible and certain things are covered by neither - such as a yearly check up, as I just found out. Medicare pays if you see a doctor when sick, but not when well ..not too strong on preventive medicine.
Then you can opt for a Medicare accepted HMO. The fee for your Medicare coverage goes right to them from your SS check, and you are only covered within their network of doctors. But you do not need supplementary insurance so it's cheaper. However, you may be refused certain treatments and have no alternative outside of going out of the system and paying everything yourself.
The cost of Medicare used to be $80 a month but it went up this year, and I'm not sure by how much. Still, it is way cheaper than a private plan, and even with the cost of supplementary and drug insurance added (mine together cost about $132 on top of Medicare) it is cheap.
Maybe Medicare also offers lists of nursing homes and home health aides - we never even asked them. I knew people in NY who had a HHA paid for by Medicaid, but as we know, you have to be on the edge of poverty to get that.
Long term care policies may be cheap when you are young - logical: they collect it for decades before you need it, but for me, when I inquired at about age 64, it was way too expensive. My best option is to use up, spend, give away everything I don't absolutely need ... so that in 20 years or so I will be eligible for Medicaid IF there still is Medicaid ..
With a little luck I will remain one of those healthy seniors who don't ever need custodial care. Mom almost made it .. was fairly well into her early 90s. But now is reduced to the necessity of a NH, and has nearly spent down her savngs so she can get into Medicaid. "Spend down" means spending for medical, hospital, drug, nursing home care NOT giving it away to kids or grandchildren, it was too late for that the day she went to the hospital with the broken hip. In fact they investigate back to 5 years ago .. and any charitable gifts, family gifts etc given that long ago have to go back to the giver and be used for her current care before Medicaid kicks in. OR, if it is impossible to give it back, months are added to your waiting period for those amounts of money gifted away.
My brother's MIL did it right - at 70 she gifted her house to her 2 kids. She continued to live there and pay taxes, but it was their house. 15 years later she got Alzheimers and almost as soon as she needed NH care she was immediately accepted into Mediciad because she had no assets.
Since people over 65 are greatly increasing in numbers, while younger people are getting fewer, this will be a real challenge in the future. Maybe people coming after me will have to work until 75 instead of the current 67. Unless cures are found for all the potential AD cases before they start ... and that would be a huge blessing.
In hopes of that,
Martha
Then you can opt for a Medicare accepted HMO. The fee for your Medicare coverage goes right to them from your SS check, and you are only covered within their network of doctors. But you do not need supplementary insurance so it's cheaper. However, you may be refused certain treatments and have no alternative outside of going out of the system and paying everything yourself.
The cost of Medicare used to be $80 a month but it went up this year, and I'm not sure by how much. Still, it is way cheaper than a private plan, and even with the cost of supplementary and drug insurance added (mine together cost about $132 on top of Medicare) it is cheap.
Maybe Medicare also offers lists of nursing homes and home health aides - we never even asked them. I knew people in NY who had a HHA paid for by Medicaid, but as we know, you have to be on the edge of poverty to get that.
Long term care policies may be cheap when you are young - logical: they collect it for decades before you need it, but for me, when I inquired at about age 64, it was way too expensive. My best option is to use up, spend, give away everything I don't absolutely need ... so that in 20 years or so I will be eligible for Medicaid IF there still is Medicaid ..
With a little luck I will remain one of those healthy seniors who don't ever need custodial care. Mom almost made it .. was fairly well into her early 90s. But now is reduced to the necessity of a NH, and has nearly spent down her savngs so she can get into Medicaid. "Spend down" means spending for medical, hospital, drug, nursing home care NOT giving it away to kids or grandchildren, it was too late for that the day she went to the hospital with the broken hip. In fact they investigate back to 5 years ago .. and any charitable gifts, family gifts etc given that long ago have to go back to the giver and be used for her current care before Medicaid kicks in. OR, if it is impossible to give it back, months are added to your waiting period for those amounts of money gifted away.
My brother's MIL did it right - at 70 she gifted her house to her 2 kids. She continued to live there and pay taxes, but it was their house. 15 years later she got Alzheimers and almost as soon as she needed NH care she was immediately accepted into Mediciad because she had no assets.
Since people over 65 are greatly increasing in numbers, while younger people are getting fewer, this will be a real challenge in the future. Maybe people coming after me will have to work until 75 instead of the current 67. Unless cures are found for all the potential AD cases before they start ... and that would be a huge blessing.
In hopes of that,
Martha
Jess22
02-17-2006, 08:19 PM
thanks for sharing