sunnydaze1
11-04-2007, 01:09 PM
My mom, whom we suspect has dementia/alzheimers..has been steadily declining, almost rapidly the past few weeks.
She is still very aware of people, places, current events...but ask her to warm up her cup of water in the microwave for some tea, forget it...it just does not compute in her head.
I help her as much as I can with the upkeep of the home, she gets Meals on Wheels everyday, and my elderly aunt stops by at night to warm up some supper for her.
The latest problem is her meds...she isn't able to get her nitro patch on correctly. I found she had part of the foil wrapper stuck inside her bra and the rest, including the patch, was stuck to the wrapper she threw out.:confused: Just getting the times straight in her head on when to take her meds is very confusing.
I broached AL with her a couple weeks ago and she just about went hysterical. Slowly, with the help of my aunt, we've been bringing the subject up again. She still doesn't go for it, nor does she want anyone in the house. I know she never will willingly go.
My question is, if I give her an ultimatum, I certainly don't want to, but if I do, would in-home care be better for her? She really only needs someone to get her going in the morning, meds wise, help with washing, etc.; and to prepare a light supper for her. I guess I feel if I can keep her in her own home rather than moving her, it would be better.
This whole situation is driving me nuts as well as my aunt and brother and his wife.
Would it help to tell mom the stress that this has brought to my life so she would realize? Has anyone done anything like that?
Thanks for any help you can provide.
PS: I do have POA and am in charge of all her finances; billing; etc. She also has top of the line Long-Term Care Insurance...it's just getting her to use it!!
She is still very aware of people, places, current events...but ask her to warm up her cup of water in the microwave for some tea, forget it...it just does not compute in her head.
I help her as much as I can with the upkeep of the home, she gets Meals on Wheels everyday, and my elderly aunt stops by at night to warm up some supper for her.
The latest problem is her meds...she isn't able to get her nitro patch on correctly. I found she had part of the foil wrapper stuck inside her bra and the rest, including the patch, was stuck to the wrapper she threw out.:confused: Just getting the times straight in her head on when to take her meds is very confusing.
I broached AL with her a couple weeks ago and she just about went hysterical. Slowly, with the help of my aunt, we've been bringing the subject up again. She still doesn't go for it, nor does she want anyone in the house. I know she never will willingly go.
My question is, if I give her an ultimatum, I certainly don't want to, but if I do, would in-home care be better for her? She really only needs someone to get her going in the morning, meds wise, help with washing, etc.; and to prepare a light supper for her. I guess I feel if I can keep her in her own home rather than moving her, it would be better.
This whole situation is driving me nuts as well as my aunt and brother and his wife.
Would it help to tell mom the stress that this has brought to my life so she would realize? Has anyone done anything like that?
Thanks for any help you can provide.
PS: I do have POA and am in charge of all her finances; billing; etc. She also has top of the line Long-Term Care Insurance...it's just getting her to use it!!
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DGabriel10
11-04-2007, 02:05 PM
Your situation sounds exactly like where I was a a little over a year ago except Mom was also the full time caregiver for my Dad who has had vascular dementia for year. Mom blamed her inabilities on Dad and Depression for two to three years. There was also a good confabulated excuse. Dad has always been good natured and Mom is the fighter. When we realized Mom was having difficulties it appeared that she went down faster. In reality we just knew what to look for and were no longer accepting her excuses. She also lost her reason to cover her inabilities.
Medication became a real problem. Mom confused her antiviral for shingles with hydrocoden and I came home to a totally disoriented Mom suffering all kinds of effects from the pain meds. I later realized that she drove Dad to his doctor's appointment 50 miles away under the effects of pain meds. We started putting their meds in pill boxes but they would forget to take some, take too many, or try to fix them and totally mess them up. It was a Xanax overdose that put Dad in the hospital administered in good faith by Mom that finally tipped us off to extent of her confusion. We gave Mom an ultimatum at that point and she chose in home care over a facility.
That is when we hired a sitter. This lady was an angel and Dad loved her. As long as Mom though she was there to help with Dad it was ok but the day she realized that the sitter was for her as well it all went down. Mom hated this lady in her house. Thought Dad was delighted with this arrangement Mom was miserable. That last day Mom became physical and hit the sitter which ended inhome care. Dad was furious with Mom because she was rude to their "guest". Mom truly did not want to be a burden on us girls and the help she needed at home also annoyed her. There was no ultimatum at this point. We just found a facility and put Mom and Dad in Assisted Living. Now Mom is happy for the most part in her little apartment and Dad is miserable. On the other side of the coin my Grandmother stayed at home with in home help for years before going to a facility.
We have applied for Mom's LTC and it was accepted so we should start receiving benifits next month. Mom was pleased that she had done this and in the end it was this policy that made Assisted Living ok with Mom. It gave her back her sense of independence in a round about sort of way. No longer was she dependent on a sitter or us for her needs.... she was paying her own way. Also kudos to you and your Mom for getting all the paperwork in place that you will need!!!!!
So each situation is different and you have to try what you think is best at the time. Denial and personality on the part of the patient is like a stone wall and there is no good answer how to get on the other side. Even if they agree to your ultimatum that doesn't mean they will live with the decision. You just have to do what you think is best with what you know at the time and go forward from there being aware of the situation each day. Know that nothing is carved in that stone wall and the way around it is forever changing. You just have to take one day at a time and do the best you know not only for your loved one but for you and your family as well.
Know I keep you in my thoughts and prayers.....
Love, Deb
Medication became a real problem. Mom confused her antiviral for shingles with hydrocoden and I came home to a totally disoriented Mom suffering all kinds of effects from the pain meds. I later realized that she drove Dad to his doctor's appointment 50 miles away under the effects of pain meds. We started putting their meds in pill boxes but they would forget to take some, take too many, or try to fix them and totally mess them up. It was a Xanax overdose that put Dad in the hospital administered in good faith by Mom that finally tipped us off to extent of her confusion. We gave Mom an ultimatum at that point and she chose in home care over a facility.
That is when we hired a sitter. This lady was an angel and Dad loved her. As long as Mom though she was there to help with Dad it was ok but the day she realized that the sitter was for her as well it all went down. Mom hated this lady in her house. Thought Dad was delighted with this arrangement Mom was miserable. That last day Mom became physical and hit the sitter which ended inhome care. Dad was furious with Mom because she was rude to their "guest". Mom truly did not want to be a burden on us girls and the help she needed at home also annoyed her. There was no ultimatum at this point. We just found a facility and put Mom and Dad in Assisted Living. Now Mom is happy for the most part in her little apartment and Dad is miserable. On the other side of the coin my Grandmother stayed at home with in home help for years before going to a facility.
We have applied for Mom's LTC and it was accepted so we should start receiving benifits next month. Mom was pleased that she had done this and in the end it was this policy that made Assisted Living ok with Mom. It gave her back her sense of independence in a round about sort of way. No longer was she dependent on a sitter or us for her needs.... she was paying her own way. Also kudos to you and your Mom for getting all the paperwork in place that you will need!!!!!
So each situation is different and you have to try what you think is best at the time. Denial and personality on the part of the patient is like a stone wall and there is no good answer how to get on the other side. Even if they agree to your ultimatum that doesn't mean they will live with the decision. You just have to do what you think is best with what you know at the time and go forward from there being aware of the situation each day. Know that nothing is carved in that stone wall and the way around it is forever changing. You just have to take one day at a time and do the best you know not only for your loved one but for you and your family as well.
Know I keep you in my thoughts and prayers.....
Love, Deb
Dingoes
11-04-2007, 04:05 PM
My grandmother was in a very good assisted living facility last year, but she didn't participate in any of the activities, withdrew to her room to the point where people had to bring her meals to her, refused to get dressed or out of bed and called us with minor crises at least five times a week (and sometimes five times a day).
We felt it was better in that situation to try and bring her home, built a bedroom and handicapped-accessible bathroom for her and she lived here happily enough for about four months. She had a meltdown induced by not taking her meds no matter how much we wheedled, ended up in the hospital and is now in a rehab center, where she is obviously miserable. Her goal (and ours) is to bring her home when the psychoactive drugs (antidepressants and Aricept) have time to work. On the plus side, she seems more lucid already. On the minus side, she hates it there and must stay at least another two weeks.
When she comes home I'm assuming we'll have to get her in-home care of some sort, depending on how severe the symptoms are at that point.
I guess what I'm saying is, at least in my experience so far there has been no right answer. We're still working toward keeping her at home, but I'm wondering how possible that's going to be, for how long.
We felt it was better in that situation to try and bring her home, built a bedroom and handicapped-accessible bathroom for her and she lived here happily enough for about four months. She had a meltdown induced by not taking her meds no matter how much we wheedled, ended up in the hospital and is now in a rehab center, where she is obviously miserable. Her goal (and ours) is to bring her home when the psychoactive drugs (antidepressants and Aricept) have time to work. On the plus side, she seems more lucid already. On the minus side, she hates it there and must stay at least another two weeks.
When she comes home I'm assuming we'll have to get her in-home care of some sort, depending on how severe the symptoms are at that point.
I guess what I'm saying is, at least in my experience so far there has been no right answer. We're still working toward keeping her at home, but I'm wondering how possible that's going to be, for how long.
DGabriel10
11-04-2007, 04:20 PM
You are right... there is no right answer set in stone answer. It is doing what you think is best at the time and going on to the next episode. Wait and see how much better she gets with the UTI treatment and new medication. She may do well at home with in home help..... especially if she realizes her alternative is assisted living. Or you may have to rethink your options and come up with another answer. That is one of the stressors of this horrible progressive disease. You know what works today may not work tomorrow and you are always waiting for the next shoe to drop. Just do the best you know at the moment with the information you have. Then be open and flexible to changes that create the need for a new choice.
I hope you find what is right for you and I do keep you in my thoughts and prayers.
love, Deb
I hope you find what is right for you and I do keep you in my thoughts and prayers.
love, Deb
jimmyjane
11-04-2007, 05:58 PM
My mom was alot like yours Sunnydaze1 and we had been through all the arguing and trying to "show and tell" her how much she was not taking her meds right even though I was preparing them for her weekly plus taking her meals to her and I lived 35 miles away. The doctors weren't much help and she just quickly or conveniently forgot anything she didn't she didn't want deal with. Luckily, I guess I would say, she got up one night, became disoriented or dizzy and fell near her bed where my brother found her sleeping at noon the next day and called the ambulance. Thankfully, she was fine except for a UTI that was very bad and supposedly caused the diorientation. The doctor then told her she could not stay home alone and we scrambled trying to decide what to do while she spent a few days on antibiotics in the hospital. She had good medical and LTC insurance. I knew I could not care for her in my home living in rural area miles from hospital and drs. She was also very mean and demanding to family,especially me, and at that time I did not know how to handle or be patient with her. We found a live-in but that only lasted a month as mom hated a stranger in her house and said and did awful things to her. She always said she would die if we put her in a nursing home. I felt she would think any facility away from home was a nursing home. We finally got her into an alzheimers/dementia care facility and that was our miracle. It's in another town from where she lived but still about 30+ miles from me and my brother. It is bright and cheery and they know how to coax her out for activities and meals. Most of the her meds were dropped and a couple new ones added and now she is the happiest I've seen her in years. I've learned through watching the caregivers how to act with her and I think the stress has been taken away from me so I can enjoy her company again even in her sometimes confused self. Don't get me wrong, things are not always perfect for her but it's what worked best for us. I think everyone has to find their own way for loved ones with this terrible disease and whats good for some isn't necessarily the best for others. I wish we had done more research ahead of time to be more prepared for that inevitable day. It's now been 3 years since the day she came to this facility and for her the everyday schedule, the great activities director, loving CNAs and nurses, and cheery atmosphere have been the best she could ask for in this circumstance. I have since become a pet therapist and visit several AL, alzheimer/dementia facilities,and nursing homes. Some places seem sad, lonely and uncaring as I always imagined but if you research well and ask everyone you run into (and I mean EVERYONE) you will find all kinds of stories and places and willingness to help. An alzheimer's support group is a great resource even if you have to go to another town to find one. And your mother doesn't have to be diagnosed with alzheimer's for you to go...it's for anyone involved with someone with dementia related problems. Sorry my first post is so long but I felt your pain and just wanted to let you know there is help. I also wish I had found these messageboards before my mom had problems... I've learned so much here. Thank you all and good luck Sunnydaze1. Let us know how it goes.
Martha H
11-04-2007, 06:10 PM
Isn't it amazing how many of the AD patients have UTIs, and how powerfully they affect their minds! Mom also had frequent bouts with it - I finally blamed it on her inability to wash or wipe herself properly, while refusing help. Since being in the nursing home she has not had a single infection.
In-home care did not work well for us, although we did it for 9 months. The Home Health Aides were nice ladies, but Mom hated them all with a vengeance for being in her home. She refused to allow them into her bedroom, and would not take a nap while they were in the house. She was obsessively fearful of being robbed. The fact that they were from a bonded agency had no effect on her. She argued with them and was exhausted when I got home from work.
Once she settled into the NH she was ever so much happier. She took part in many activities at first. Now she is just tired, worn out, sleeps much of the time --but then, she is 99. I lived with her from age 91 to 96. Hard years, working full time and dealing with a dementia patient who often did not know who I was or why I was in her house. I started at age 61 ... it was all a bit too much for me. Now I am retired and doing neither - no job and no Momcare. It is paradise. I even have time to volunteer at church. And love it!
Remember the saying, "this too shall pass." and once it is settled, you get your life back. I did.
love,
Martha
In-home care did not work well for us, although we did it for 9 months. The Home Health Aides were nice ladies, but Mom hated them all with a vengeance for being in her home. She refused to allow them into her bedroom, and would not take a nap while they were in the house. She was obsessively fearful of being robbed. The fact that they were from a bonded agency had no effect on her. She argued with them and was exhausted when I got home from work.
Once she settled into the NH she was ever so much happier. She took part in many activities at first. Now she is just tired, worn out, sleeps much of the time --but then, she is 99. I lived with her from age 91 to 96. Hard years, working full time and dealing with a dementia patient who often did not know who I was or why I was in her house. I started at age 61 ... it was all a bit too much for me. Now I am retired and doing neither - no job and no Momcare. It is paradise. I even have time to volunteer at church. And love it!
Remember the saying, "this too shall pass." and once it is settled, you get your life back. I did.
love,
Martha
AnnD
11-04-2007, 06:18 PM
If it were me I would simply tell her that someone will be coming in to start you on your day with your medicines and breakfast and that's that. She isn't in a position to think rationally except to fight it but if you just are matter of fact that you have hired someone(be sure it is someone your mom would like). I would not tell her anything else about your stress or any of that. I would just tell her the doctor has ordered these meds and there will be someone coming in everyday to be sure you get them. or whatever. It would be nice if it were someone the same everyday but that isn't always possible. perhaps you can find someone in the family to hire to do it? or someone at the local senior center might need to make a few bucks and can still drive and can do that? But I would try to keep her at home as long as possible.
teapot
11-04-2007, 09:36 PM
What is she doing at home? Is she isolated except for visits from a few people? Does she have things that she enjoys? I ask because your average person without ALZ has all kinds of things they could be doing in their home. A person with ALZ is much more limited. My Dad couldn't follow TV, or read anything. He couldn't do any of his hobbies and being at home stressed him out and reminded him of everything he should be able to do but couldn't.
Depending on how lucid she is - keeping her at home could be hard. Her point of view is a stranger is coming into her house. You could spin some tale about how the aid is a friend/coworker or someone you trust but her "reflex" would most likely being uncomfortable about it. Depending on how much care she needs, houses aren't always the most efficient place to care for a person.
If you want to move her you could try:
1. Invent a crisis - winter's coming (if the weather will support this ;) where you are ) or you are going out of town on business and can't come for a while. Perhaps the furnace needs repair, or the house needs painting and she needs to move into the AL place just until all this gets done.
2. She can't get her head around moving, or even making the decision - it's too hard - so you have to do it for her. You tell her, "Tommorow we're moving you just for a month" and poof everything is arranged and her favorite things are setup in the AL apartment so she can sleep in her own bed that night.
I'd say if she is having medication issues there is a lot more stuff going on that could be dangerous.
Depending on how lucid she is - keeping her at home could be hard. Her point of view is a stranger is coming into her house. You could spin some tale about how the aid is a friend/coworker or someone you trust but her "reflex" would most likely being uncomfortable about it. Depending on how much care she needs, houses aren't always the most efficient place to care for a person.
If you want to move her you could try:
1. Invent a crisis - winter's coming (if the weather will support this ;) where you are ) or you are going out of town on business and can't come for a while. Perhaps the furnace needs repair, or the house needs painting and she needs to move into the AL place just until all this gets done.
2. She can't get her head around moving, or even making the decision - it's too hard - so you have to do it for her. You tell her, "Tommorow we're moving you just for a month" and poof everything is arranged and her favorite things are setup in the AL apartment so she can sleep in her own bed that night.
I'd say if she is having medication issues there is a lot more stuff going on that could be dangerous.
DGabriel10
11-05-2007, 01:09 AM
After the sitter left my Mom attempted to hire somebody else. What a fiasco that was. When she realized SHE was incapable of doing that, my sister took her to visit a few assisted living places. One in particular made it all so simple. They were very good about talking with Mom and not just us girls. Before Mom knew what happened the move was planned. Mom participated in the packing and seemed happy to be moving. In a way she was getting her independence back.
My dad on the other hand was very different. Packing truly upset him. He didn't want to leave home. I kept telling my sister to put the boxes where he would not see them but she kept stacking them in the den where he spent most of his time. It broke my heart when he left the house for the last time.
The next day we moved their furniture. Mom directed the move and my brother in law kept Dad until the apartment was completed. We just took Dad in and told him it was his new home. At first he hated it and wanted to go home. With some medication changes and 7 weeks under his belt it is much better. I talked to Mom today. She told me that Dad was mostly happy and didn't ask to go home as often. He even found his way to the dining room tonight without assistance. Mom stayed in the room because she had been to my nieces house warming and was not hungry. Dad made it to dinner and back by himself... and even brought Mom a tray incase she got hungry later.
Seven weeks ago I would not have believed it if you had told me I would write that last few statements and smile about it. Mom has her socialization that she needs. She is really the social butterfly and everybody adores her. Dad is adjusting and is content being with Mom. They are going to the dinning room, social activities, and loves the 3 PM happy hour with a glass of wine for Mom and a beer for Dad. ..... and I know they are safe!
Love, Deb
My dad on the other hand was very different. Packing truly upset him. He didn't want to leave home. I kept telling my sister to put the boxes where he would not see them but she kept stacking them in the den where he spent most of his time. It broke my heart when he left the house for the last time.
The next day we moved their furniture. Mom directed the move and my brother in law kept Dad until the apartment was completed. We just took Dad in and told him it was his new home. At first he hated it and wanted to go home. With some medication changes and 7 weeks under his belt it is much better. I talked to Mom today. She told me that Dad was mostly happy and didn't ask to go home as often. He even found his way to the dining room tonight without assistance. Mom stayed in the room because she had been to my nieces house warming and was not hungry. Dad made it to dinner and back by himself... and even brought Mom a tray incase she got hungry later.
Seven weeks ago I would not have believed it if you had told me I would write that last few statements and smile about it. Mom has her socialization that she needs. She is really the social butterfly and everybody adores her. Dad is adjusting and is content being with Mom. They are going to the dinning room, social activities, and loves the 3 PM happy hour with a glass of wine for Mom and a beer for Dad. ..... and I know they are safe!
Love, Deb
Martha H
11-05-2007, 07:05 AM
That's the magic word, Deb, SAFE! I worried myself silly while living with Mom, because I also had to go to work, and never knew what kind of disaster I would find when I got home. She was alone most of the time until we finally got a home health aide, and even then, to save money, my siblings had her coming in from 9 to 3 --but I left for work before 6. I never knew if Mom would start a fire trying to cook, throw out something valuable, hurt herself, or what in my absence. The worst fear was that she would go out and get lost. Before we had the HHA she used to go to the Senior Center by herself - after 25 years she knew the way very well - but Dementia robbed her of the memory of how to get back home. She got lost several time, wandering around Queens, NY by herself.
It was a nightmare.
Once she was in the NH the whole family relaxed. Mom is not forgettng her meds, she is not fallng, not throwing out her valuables, someone is making sure she eats well, she gets help going to the bathroom, someone washes and dresses her, she has no decisions to make, nowhere to have to go by herself. Her life improved tremendously also. That good period ended a couple of months ago when she became more or less bedridden, but even now she has around the care clock care and is safe.
Love,
Martha
It was a nightmare.
Once she was in the NH the whole family relaxed. Mom is not forgettng her meds, she is not fallng, not throwing out her valuables, someone is making sure she eats well, she gets help going to the bathroom, someone washes and dresses her, she has no decisions to make, nowhere to have to go by herself. Her life improved tremendously also. That good period ended a couple of months ago when she became more or less bedridden, but even now she has around the care clock care and is safe.
Love,
Martha
DGabriel10
11-05-2007, 11:31 AM
Safe is the word that gives me a big sigh of relief Martha and you are right.. safe from themselves. The pots were burned and wrong medication taken but the worst problem we had was Mom and Dad arguing. Mom would get stuck on a subject that irritated Dad or respond inappropriately to his never ending repeated questions. He would respond inappropriately. She would respond to him even more inappropriately. It would even escalate to physical fighting sometimes or last all night. I would call at 8 pm and Mom would swear everything was fine. I would call back at 8 am and find out that Mom and Dad had been fighting all night. Dad told me once it was "the escalating discontent of two dissatisfied people." (My Dad has not lost his words, he just can't remember what he just said) I truly believe the dissatifaction was because they were both in over their heads having dementia and trying to hold the house and the family together.
I do want to take a moment to thank Martha and so many others that let me know it was ok to chose Assisted Living. You have all made a bid difference in my life. Thank to all of you... I am getting my life back :-) I keep you all in my thoughts and prayers
Love, Deb
I do want to take a moment to thank Martha and so many others that let me know it was ok to chose Assisted Living. You have all made a bid difference in my life. Thank to all of you... I am getting my life back :-) I keep you all in my thoughts and prayers
Love, Deb
Dingoes
11-05-2007, 07:54 PM
I'd have to agree that assisted living is much better than anyone with AD being left alone (and yegads, Queens! My grandmother lived there till she was 90, but she didn't have obvious AD then). My own decision to attempt one more try at having my grandma come back after her stay in rehab is based on the fact that I work at home with flexible hours (I'm a writer) so I can be with her pretty much round the clock.
And today I just came back from visiting her at rehab, where she tells me she was raped by two big burly guys who came into the place to gamble at night. If I'm reading this right, she'll pretty much resort to anything in an attempt to get out of there early (they're investigating, but I also know she falsely told the hospital I had broken her hand when we first admitted her, and she looks just fine, no bruises, and was very sketchy on any details). I wish she had adjusted to the assisted living place she had been last year, but she's a stubborn old thing and I truly believe she'll make my life harder from inside a NH than from inside my house (at least that's how it was till she was hospitalized two weeks ago).
And today I just came back from visiting her at rehab, where she tells me she was raped by two big burly guys who came into the place to gamble at night. If I'm reading this right, she'll pretty much resort to anything in an attempt to get out of there early (they're investigating, but I also know she falsely told the hospital I had broken her hand when we first admitted her, and she looks just fine, no bruises, and was very sketchy on any details). I wish she had adjusted to the assisted living place she had been last year, but she's a stubborn old thing and I truly believe she'll make my life harder from inside a NH than from inside my house (at least that's how it was till she was hospitalized two weeks ago).