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.
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.
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.
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.
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.
Is she actually capable of calling a cab and breaking a window to get in? Does she even remember falling?
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.
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.