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My 87-yr-old mother is suffering from dementia. I've been running back and forth between our two homes for over a year trying to care for her while trying to keep up with my job. Even with a pill organizer, she messes up her pills. She forgets whether she's eaten or not. She had cold cereal most evenings because it's easier. I cook dinners for her but she forgets they're in the refrigerator and the food goes bad and is thrown away. She has developed a nervous habit of scratching her legs and because her skin and blood is thin, her legs are always bloody, with bloody clothing, couches, bed, floors. She's very frail and weak and can hardly get up from a chair and walk due to arthritis. She no longer has any interest in TV, reading or internet and sleeps most of the time, just getting up to eat and go to the bathroom. She gets angry at me if I try to talk to her about any of this. I've been trying to get her to move in with me for two years.

Finally, last weekend she had two falls, just bruises but it frightened her enough that she agreed to move in with me. My daughter, son-in-law and I moved her hospital bed, bureau and most of her clothing and food to my house. I felt so relieved that I could now give her the care that she needed - one of the first things being a good bath! She's been eating three good meals a day. I've been putting anti-itch creams on her legs 3x/day and her legs look great and are healing up..

However, she is completely miserable and keeps saying that she's made a big mistake and wants to go home. I understand that she's homesick. But she will not admit that she needs help. I've tried talking to her about how exhausted I am and can no longer take care of two homes or give her the help she needs if she's not in my home and all she says is that she'll hire help until her money runs out. But she had help come in at one time and hated it and told them all to go! She also believes she can still drive, but there's no way I'm giving her cars keys back to her.

I feel completely unable to deal with this any longer. My nerves are shot, I can't sleep. I feel so sick. She told me tonight that if I don't take her home tomorrow, she'll call a cab and since she doesn't have her keys, she'll break a window to get in. Now I'm afraid to go to work in fear of what she'll do. If I take her home, then I'm back in the rat race of running back and forth there and knowing she's not getting the care she needs. I tried two years ago having her doctor talk to her but it made no difference. I don't know what to do. i have a durable POA but she hasn't been declared incompetent. I'm not sure how incompetent someone has to be to be declared incompetent. She told me today that she would rather be dead than stay in my home, although she said that I've been very good and kind to her.

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hubblegal, this is a situation that many of us find ourselves in. Even when other arrangements make a lot more sense for everyone, our parents want to remain in their own home. I know that I couldn't have pried mine out with a shoe horn. I don't know if there is anything we can do as long as they are competent except to help them the best we can. Maybe you can talk to your mother and say it is okay to go home, but only if she hires some help. It will be expensive, but maybe that would work. And if she wants to get rid of the help, just tell her she'll have to move back in with you. Let us know how it goes. Good thoughts coming your way.
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Lordy. I think you should get Adult Protective Services involved. Most states include "self-neglect" in their criteria for assistance. Call them. If they can't help, they will certainly be able to quickly steer you in the right direction.

Because she is completely disrupting your life and has threatened to do things that are unsafe if she isn't allowed to go home, I would try to talk her into staying 'til the weekend so you can move her things back there; failing that agreement, I think I'd just take her home.

It'll only be for a short time, I can almost guarantee.
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Do you have right? Boy, that is hard. You certainly have reason on your side, and morality. But legally? Maybe not so much, if she is still competent. We place an extremely high value on self-determination. A competent adult is allowed to make decisions -- even bad decisions, even potentially self-destructive decisions.

The best outcome would be to convince her to stay with you willingly. I wonder if staying a little longer would convince her. Could you say, "We will have time to move you back a week from this Friday. Until then, let's just make the most of our time together." Any possibility she might be willing to wait, and that she might come to like her new location?

I think the next best outcome (or maybe even better than staying with you) would be to have her move into a care center with 24 hour staff available. I don't think that sounds very likely until/unless a crisis occurs.

Third choice would be for her to live at home with adequate help. This you might have a chance at negotiating.
1) Mom, I can no longer keep up two households. You have to bring in help to clean and to do your laundry. This would only be for a few hours each week, but it MUST be done.
2) You have to have a visiting nurse for whatever the doctor thinks you need. This might be to help make sure you take your pills, and also to care for your legs.
3) If the doctor thinks it might help prevent falls if you build up your strength and he/she wants to order physical therapy for you, I want you to accept this. It will be only for a few weeks.
4) Let's look into Meals on Wheels for you, so you have one complete meal delivered to you each day. OR Let's get a personal care attendant to come in each afternoon to help you with your evening meal and take you for a walk in nice weather.
5) You must accept an aide to come in and help you shower or bathe once a week.

What I'm suggesting is trying to use your leverage to get her to accept some help in her own home, and not just vaguely "some help" but a specific list of help you think necessary.

I sincerely believe that getting her pills regularly, keeping reasonably clean, eating regularly and wholesomely, and having minor medical needs attended to promptly would extend her lifespan. But realize that she is not going to live forever no matter where she is. (She could fall at your house as well as at her house.) And the timing isn't necessarily under your control.

I agree with Maggie that if she goes home it may not last long. She may fall, or become disoriented, or dehydrated, or have some other crisis. If she winds up in the hospital they may strongly discourage her from going home, especially if you firmly explain that you can only provide limited help in her but are willing to care for her in yours.
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"Remind" her she has to go to the doctor before she can go home - "don't you remember we talked about that when you came here?...do you feel well enough to go see the doctor yet? Ok, we can go...(fill in appointment date, circle on calendar, count own days, whatever)" And take her for a comprehensive geriatric evaluation somewhere. Make sure they include a social worker visit with you to help sort through options. I suspect you *will* be told she is not safe to be by herself and you can insist on some other plan, which may involve getting guardianship or at least getting the letters of incapacity that put a POA, if you already have one, into effect.

Is she actually capable of calling a cab and breaking a window to get in? Does she even remember falling?
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What is it about being in your home that's making her miserable? Is it the lack of privacy, being able to do what she wants when she feels like it? That's what AS are for! She can have a private apartment, good food, on site medication management and activities IF she wants to participate! You get peace of mind. Take some tours with her. Use it as a bargaining or delaying tactic.
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ALs, assisted living.
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I was wondering the same thing. Can your Mother explain to you what is it exactly that makes her so miserable and so sad? If she can put it in words then maybe you can arrange something so she would stay with you? What would she be doing on her own that she can't do in your house? You said that when she was living alone she'd just sleep. Can your Mother explain this somehow?
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tried0659 and Shepard raise an interesting point. Why is your mother so miserable at your house? I suspect she is miserable away from her own surroundings rather than miserable at your house -- but maybe she can tell you.

Mom may not be able to articulate her reasons -- or maybe she'll surprise you. But give her lots of time. I once had a conversation with an unusually articulate friend who had dementia. He seemed to ignore one of my comments. The next day I got an email from him assuring me he wanted to respond to me but it took him a day to process the topic and find his words!

But in a way, this story reminds me of what we see posted again and again -- the person with dementia who wants to "go home" and who miserably mourns the loss of "home." My husband did this even though he was at home. Many other posters have also reported loved ones who want to go home even though they are already home. Some experts theorize that what they really want is to get back to a place and time when things were normal, before their minds became so foreign to them.

If this is the sense in which your mother longs to go home, then getting her back to her house probably won't satisfy her longing. She may blame her dissatisfaction on having strangers in there, etc. but the real problem -- of not feeling like herself -- will not be resolved.

Mom may or may not be able to articulate why she wants to go home, but trying to figure out the reasons may provide clues about how to proceed.
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Hubblegal, big hug to you. You have worked so hard to do everything for your mother and live up to every principle of elder care ethics. You have, as we say in rugby-watching circles, played a blinder. Your mother couldn't have a more caring or faithful child.

The 'home' she so desperately wants to go back to is her own life where she was independent, healthy and happy. It's gone now. Time has nuked it.

I'm searching for a way of saying this that isn't totally bleak, but I'm not sure there is one, not if we're going to stick to reality.

Your mother needs care. She doesn't want it, she's mourning the loss of her independence and her life as she knows and likes it, and she feels wretched; and that is heart-breaking, but it doesn't change the reality that there is nothing you can do to restore "Home" to her.

So, with or without her, you need to work out what environment constitutes her second best option, and then put that plan into option. Given the strain it places on you and your family to have your terribly upset mother living with you, I'd suggest that somewhere safe where you can visit her would be a better bet than your home - but this is all detail.

The key thing is to separate the practical planning from the emotional turmoil. The latter can wait, but the former can't. Get your mother assessed for legal capacity purposes (you don't need her consent to that) then use your POA to care for her. I haven't a shred of doubt that this would be totally in her best interests, because I've never read a more impressive account of loving care than yours.
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Sorry. Put the plan into action, I mean. Still half-asleep from yesterday.
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You are not alone! I guess we will all reach that stage in our lives, refusal to give up our homes and independence. I pray I don't do that to my children. My mother in her 90's with dementia refuses to go to assisted living. We visit her, do everything for her, but she is becoming irrational, calls dozens of times with imaginary fears, is basically miserable, can't take care of herself. Last year we asked the doctor to not clear her to continue in independent living, but he wouldn't do it, saying "she isn't there yet" and you have to wait for something to happen first. She refuses to move - says she will kill herself. It appears the legal system goes so far the other way to "protect" a person's rights that it leaves no room for intervention until the person is completely out of it. (Look at the number of entertainers and young adults with drug habits and homeless alcoholics that need to be institutionalized until such time as they are cured - not just a two week stint in a clinic. Their families can do nothing but watch their descent into oblivion.) That is how we feel, knowing AL would take care of her, make sure she ate, bathed, give her the attention her narcisistic personality needs, calm her fears, etc. My heart goes out to you. You are so kind to want her to live with you, its sad she doesn't want that. I'm sure my mom would jump at it if we offered, but she can afford IL or AL (for which our family thanks the good Lord) because she is so difficult none of us could ever live with her. It is so hard for us seniors to care for their very old parents. I wonder if we are the first generation to be in this situation now that people are living longer?
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When I ask my mom why she's so unhappy here, she just says that it has nothing to do with me, that I've treated her well, she just wants to be in her own home. As several of you have said, I believe she just wants to go back to her old life, which doesn't exist anymore. She constantly says that her knees didn't bother her at her house and she doesn't know why they've gotten so bad since she moved in with me (we went to doctors for years trying to get her help with her knee - other than a knee replacement, which she refuses, there's nothing that can be done). She believes she was better off in her own home. She also tells me that she's been driving, though she hasn't driven in over a year. She just doesn't know what she's saying or thinking.

yvtesfans - how would I go about getting letters of incapacity? I called her family doctor yesterday to see if he could evaluate her and the message I got back was that there was nothing he could do and that I should see an elder attorney.

maggiemarshall - I will look into getting Adult Protective Services involved. I've made many calls to many offices over the years and have never gotten any help. Even social workers who have come to the house after her hospitalizations have never been very helpful. I'll try to find out how to reach Adult Protective Services today.

We've tried meals on wheels and she hated it - threw most of it away and then cancelled them.

Thanks for everyone's help. It's such an emotionally trying time. Keeping her here with me is the best option for all if I can only convince her of that. She understood that when she was home last week and agreed to move here but it's only taken a few days for her to forget what "home" was like. There's nothing that she can do there that she can't do here. She has no enjoyment of her home at all anymore and just lies on the couch. I'm trying not to wait on her as much and let her do some things herself. My daughter is coming over later to try to talk to her.
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Maybe try to bring more of her things - art, familiar belongings & personal treasures. Get her involved in where to hang the art?
There is always an adjustment period - give it time and other than going back to her home try to make it her space. My mother wants to be surrounded by her things & her space decorated with her own things. This may be more important than you can imagine.
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Is her doc a geriatric neurologist? If not, can you find one to do a work up? They are often better at getting at the fact that the elder's reasoning ability is damaged and they are no longer capable of making safe choices
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My mom became very insistent this morning that she wanted to go home. She kept saying that it was nothing that I had done, she just wanted to go home. I told her my daughter was coming over in the afternoon to talk to her but she said she could talk all she wanted to, she wouldn't change her mind. I told her I would not take her home as I felt I couldn't give her the care she needed unless she lived with me and I was afraid of what would happen if I took her home. She called a cab and went home. Later I took over all of her belongings except her bed and bureau which I'll need help with. I don't believe she'll go to a geriatric neurologist but I'll speak to her about it. I feel so helpless and unable to help her. It was such a relief when she was here and I knew that she had eaten and taken her medicine. I can't believe that just a few days ago, we were sitting playing cards here and drinking a little wine. I had thought she was staying for good and now she's back there. When I called her tonight at 8 pm, she hadn't eaten yet - she only had orange juice and her pills all day. She said maybe she would eat something before going to bed and I tried to convince her that she had to eat something and reminded her of what she had there to eat. She said she would take her pills.
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You poor honey. You must be worried sick. Call aps tomorrow and request a wellness check. Call her doctor and alert him to the fact that she's home alone. I would not go over and help her out. I'm sorry if thst sounds cruel. But you have to make sure that you're alive to advocate for her; the stress and sleeplessness that you're describing could kill YOU. where would mom be then?
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Your doctor wimped out, you do need a geriatrician or comprehensive geriatric eval, and the help fromAPS. Big sigh. Wish it was easier.
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Hubble, you poor thing.

Well. You certainly do have a mother who knows her own mind! Phewf. The silver lining in this is that you know, for your own peace of mind, that she knows what she is doing, she has heard and declined your advice, and she has done what she wants to do.

Gulp. So now you can do two things: get her in front of a doctor by hook or by crook for an assessment of her mental competence; sit near the phone and wait for the crunch call, hoping it's a "Blighty" - an incident serious enough to change her point of view but nothing she won't swiftly recover from.

Meanwhile, life goes on, don't forget. This limbo period is hideous for the nerves, but keep busy - HA HA HA!!! - and it too will pass. Oh, and mind your boundaries when it comes to helping your mother now she's 'independent' again. Help, yes, of course; but have your own reasonable job description in mind.
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Hub, one more thought. When your mom ends up in hospital, for dehydration, a fall, whatever...make sure that she is admitted (not there for observation) and when the discharge planning starts, make it VERY clear to all that she is not coming to stay with you, even temporarily, or those whole cycle will start again. Most people of our moms' age just can't picture living anywhere but home and fight tooth and nail against the idea of assisted living...and then they adjust beautifully. Sometimes it's our own fear for them that keeps us from suggesting a nice placement with good food, socialization and activities. But it's amazing how well this can work when they are told by the professionals that it's time to take this step.
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Thanks, everyone. I'm still foolishly hopeful that she'll change her mind and come here to stay but I know that we've tried that twice now and she's insisted on going home and like you say, the whole cycle will start again. Unfortunately, she's done very poorly in nursing home environments before (two stays after hospitalizations) and declines quickly there. Those two experiences were more of a nightmare situation than her being at home alone, as scary as that is.

I'll continue to do what I can for her at her home but I do have to try to take better care of myself, too. I've lost 13 lbs in the last couple of months and am down to 100 lbs. I'm just heartbroken about her.

Thanks, everyone. All of you have been more helpful to me than anyone else I've spoken to over the past two years. Bless you all.
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Hubble, I would be careful about drawing conclusions about what your mom's response to a placement now would be, based on her response to rehab after hospitalization. My mom also seemed to decline in her initial placement after her stroke. In retrospect, what we were seeing was the ling term damage from the stroke (vascular dementia) and not her response to the nh environment. I will also share that long before her stroke, when she was in the "mild cognitive decline" stage and her anxiety was at its peak, we moved her to an assisted living place that was a poor fit. It was at once too much and not enough help. We eventually found a lovely independent living place where she thrived for more than a year. I think you need to carefully analyze ehat yourmom's needs for assistance right now and figure out where that best happens in your community. I know you'd be happiest with her at your home, but it doesn't seem that's going to work out. Hugs!
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Dear Hubble, The only thing constant is change. What works one day will not work the next so don't be too quick to say she won't adjust. Eventually she will have to. I hope it doesn't take an accident but it may. We just continue to put out the fires as they arise. I pray your mom cooperates with you & your efforts on her behalf.
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When my mom lived at home she had these mantras...she didn't want to go somewhere where there was "high rent". I heard it so often I wanted to scream; I knew it was something that my dad had drilled into her. " The house is paid for... just the taxes...don't give up the house, it's your security". Well, we were able to instill a new mantra." The house is an asset...there are no sidewalks...no transportation...no easily available services". These things take time to shift in our parents' minds.
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Hubblegal, I was where you were about 1-1/2 years ago with my mom. If there's dementia there, it really doesn't matter much what she thinks she wants as far as "going back" or ever managing on her own again. Sounds like you've gone over and above trying to figure out how to make her happy. I don't think my mom will ever be happy again anyway, so I just do my best for her on a daily basis as she lives with me. My mom let her house and yard go to rack and ruin and ran me ragged before I had enough. I now ignore the pouting, knowing I'm doing all I can. She's better fed now. I take her often to see what few relatives we have left. She gets to church when she's able, and I take her weekly for her hair appointment. She did very little else on her own since dad died anyway. So when she pouts, I remind her that with her money, she can certainly move to a much nicer place anytime and probably be more entertained. She's better overall since she moved in with me. Maybe you should stop trying to convince her of anything and politely ignore it if you can and otherwise keep caring so well for her as you do. God bless.
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Countrymouse hit the nail on the head. The home she misses no longer exists. She is not competent to care for herself. You have done EVERYTHING HUMANLY POSSIBLE
But time is not on her side and you can't keep up that pace to the detriment if your health and your commitment to your own family. I whole heartfelt recommend you get adult services to do an assessment and help you figure out the best options to care for your mom. Call the social worker at your local nursing home. They can at least point you in the right direction. They are very kind, compassionate people and a wealth of knowledge. You may have get her declared incompetent, which she is, so you can make these decisions for her. Don't feel guilty. This is just a part of the horrible disease. You are an exceptional daughter and caregiver. Sometimes you just have to go to plan B. It's time. So sorry. I know it's hard. I've been there. God bless you and guide you.
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So sorry you're going through this. Your mother obviously can not live on her own, and it sounds as if she wouldn't want visiting nurses -- although she needs them -- and night not want a paid companion, either. As heartbreaking as this is, it might be time for her to go into some facility, either assisted living, or in a worst case scenario a nursing home. Many of us here have put loved ones in nursing homes and feel guilty about it, but we sometimes have to recognize that the caregiving is too much for us, affecting our own health adversely, and our loved ones are better off being looked after by professionals. The chief thing is to keep Mom safe, which can not happen if she's living on her own. Again, sorry -- best of luck.
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Hubblegal....I feel like I wrote everything you just wrote. I, too, am going through the same situation. My Mom has dementia and wants to go "home". Last night I had a total melt down. I wish she would understand. This is so hard. I just want to let you know that you aren't alone.
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As I read through all of the questions and answers it was as if I was relieving 2009 and 2010. My father passed in 2000, my mother had just had knee surgery a few months before and at first she did well, but never really recovered and could not walk on her own again. For a few months a cane, then a walker then a wheelchair, which she could not maneuver by herself in her home because of small hall and doorways. I lived 124 miles away with 5 sons and a husband to care for. At the time one brother and one sister lived within walking distance of my mother. I gladly took my "turn" of driving back/forth, pay road tolls, buying gas and leaving my family for 8 days at a time. Finally even with my help my sister said it was just too much. During this time my one brother that lived close was diagnosed with stage 4 lung cancer. O boy! I told my sister that mother could come live with me. Like your mother...all I hears was a big NO! She had already told my sister that too. After about 8 months of this running back and forth my sister said no more! She found an independent facility that house no more than 5-6 women only. She was not happy there. She lost every bit of her independence there and I saw a major decline in her health (dementia diagnosis changed to full blown Alzheimer's , pain patch added, more meds! Crazy cycle!). Then the independent facility said they could no longer keep her due to her failing health...keep in mind it feel dramatically while there!). This facility sent her to hospital...locked psych ward...because of her Alzheimer's ). She stayed there for about 17 days then my sister calls me and says the hospital says they can no longer keep her...she needs to go to a hospice house. Wow! Was I ever shocked because I was still driving every 5th day to see her. They are moving her by ambulance and she'll be at hospice house by 6 pm...can you stay with her 24/7? Of course I can! But in my mind I was thinking we might not be at this point yet if she had just come to live with me! I'm angry! (Hindsight you see....). Off I took and actually found the place and had a tour of the facility before she arrived. From Nov 30 to Dec 25 I only left her for less than 20 hours to drive home and attend a funeral of a nephew who died of complications of a car accident. Her care there was wonderful, but I've said all that to say this: I would have brought my mother to my home and she would have all of her things that she wanted and I just feel that her quality of life would have been a zillion times better. Maybe I am selfish in saying this but I could have had her a bit longer too. Now this may not be the answer for you or for others, but it believe it can be used as a possible consideration for you and others. I know the struggles and the hardships you are dealing with and I pray that you can work it all out...it's not an easy road. Take care!
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I'm impressed with hubblegal, and all these answers. Not only is hubble a terrific person, her mother's not mean... acting stubborn, yes, but not mean. For this I am so glad! Is it me, or should you get her stuff and bring it back to your house and keep it there? How costly would it be to let her take a taxi, then you go get her, over and over? :) Just thought I'd throw it out there. Maybe one time she goes back, her stuff isn't there, and she loses emotional attachment to it? She's not eating food there, so don't have it there... Just adding an idea that I haven't seen here yet. Bless you, what a great daughter you are, hang in there... and as others have said, be careful with yourself too. Maybe you can enlist a friend to check up on YOU on a regular basis, that has helped me. hug.
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Oh my gosh, I see my future after reading all the postings. Because some day my parents won't be able to keep living in their single family home.

One day I gave my parents a brochure for a great retirement community just a few miles down the road which they could easily afford... it would be like living in a 5-star resort.... I was almost ready to sign myself up :) Couple days later I asked my parents what do they think? Dad said the community looked nice but maybe they would move, in a couple of years..... HELLO.... you are 92 and 96 !!!

One thing I am glad I never started doing for my parents was going over to their house to help with the cleaning and/or the cooking. I figured since they are adults with clear minds but stubborn, they made the choice to remain in their own house, thus they have to live with that choice. And they choose not to bring in hired help, again they have to live with that choice. Guess I am lucky that in the past decade they pay someone to mow their lawn, and to pay a CPA to do their income taxes :)

Now if only I could convince Dad to subscribe to an alert system as he occasionally falls.... he says that is only for old people plus he doesn't want to pay the money.... [sigh]
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