I was considering home care for my mother after her stay at the nursing home rehab following a fall. It was her second fall of late, but she admitted others to me. She has limited mobility in both arms, and was diagnosed with dementia. Her memory, judgement, and insight are poor.
While in rehab, I visited her apartment. I saw the place was unkept, stale food and roaches in the refrigerator. It appears she was mismanaging her medications, and mismanaging her finances. She was spending money impulsively, buying the same things over and over. There were unopened amazon packages, and unopened mail.
Going back home is the one and only thing my mother wants or ever talks about, and she has tried to escape the nursing home rehab 3 times already.
I realized with me being thousands of miles away, it would be very challenging to think she can be safe at home with a home care aide there for only half the day. NY has temporarily paused 24/7 care. The nursing home feels she has a shot at Assisted Living, instead of remaining in the nursing home.
I think to myself, can this aide manage medications, cook, shop, clean, get her to doctor’s appointments, and do her laundry, among other things. What happens when the aide leaves? Will she fall? Will she go out and forget where she is? Assisted Living makes more sense. But I am plagued with guilt, especially knowing how much she will fight me on this.
Sometimes I know I have to do it, and other times I make excuses for her, thinking she may be able to handle things at home. Mostly I am plagued with guilt and worry that my putting her in Assisted Living with bring her to tears that will never end. And that she will always hate me.
Am I wrong to rule out home care? Does anyone have any advice to cope with guilt??
Then after dad died, mom insisted on moving home from assisted living. She had dementia. We kept the same caregivers because they were wonderful and mom liked them. Same pay. Both parents took more than 5 years altogether to die. Add it up. It was expensive, and I wish they'd each gone to AL, then memory care in the same facility. Why? Because I had to manage all of this plus their business. It was exhausting. It cut into my own earning power for the 5+ years. Repairing the house, keeping the CGs happy, scheduling doctors and making sure they got there, managing their money, and there was no end. For over 5 years.
At some point, it is wise to do what's best for you, not the crying elder. They are the ones who got sick, and they couldn't help it, but they could stop being selfish and think about the younger generation that they have burdened with responsibility that they never planned for or expected. The elders have lived their best lives. You haven't.
Your mom appears to be unable to live at home even with care. That is not your fault, so ditch the guilt. Think instead about the guilt you would have if you brought her home and she came to harm that wouldn't have happened if she'd been in a care facility with a team of professionals to look after her. If you find the right AL, mom may end up enjoying her life more than she would at home with a part-time aide who really can't provide the advanced care your mom certainly needs. One aide cannot do all that you describe. I wouldn't for one minute leave your mom at home alone, ever. Not with those symptoms.
I wish you luck in finding the best place for her.
The only way you should be agreeing to any assisted living arrangement is if Medicaid pays for it. Otherwise no
Guilt is inappropriate in this case. Unless you'd also feel guilty for sending mom to the hospital with a broken leg. Because it's the same math. She is not competent to make her own decisions now, so you are making sound ones for her.
I'm sorry we're put into such positions in the first place. But we are and we do the right thing out of love and concern, which is what you are doing.
No need for guilt. This is for her safety. How guilty would you feel if you knowingly let her stay at home and the conditions decline to the same level? She'll adjust. I hope you are able to accomplish what needs to be done and that you'll have peace about it. Let us know how things go.
She would get more care and the higher level of care that she seems to need.
(I will say that I am of the opinion that someone with dementia as you have described should be in MC not AL)
I know she wants to go home.
You can have the doctor explain that this is another phase of rehab. You can continue to discuss the matter as she improves. this way telling her she can't go home just yet is not on you it is "doctor's orders")
When my mother reached that stage - and I had POA - I moved her into the nearby assisted living she, herself, had previously chosen. She was furious and upset anyhow, so expect a strong negative reaction no matter what you do.
Others here say it sounds like she ought to be in memory care now. Maybe. But the assisted living my mother moved into was small, and in a small town where everyone, staff and residents, knows everyone. It was not a large, anonymous sort of place (many of which are excellent, but less personal).
The intake nurse at this assisted living said that based on my mother’s test results she should go immediately into memory care, BUT, they were okay with her going into the assisted living side so she could keep her cat with her. As long as she wasn’t a wandering risk (“eloping”), they’d manage. They also let me know when it really was time for memory care from their care perspective. It worked out. That took about a year and a half for that move.
So, ask the questions like that of the assisted living you’re looking at.
And, of course, ask, “What happens when the money runs out?” Big, important question.
I would also suggest you have a good hospice company evaluate her for hospice for dementia, and hospice care based on that. That was a tremendous asset. Assisted living places love the outside services for dementia hospice, as those people take a tremendous load off of them, and let people stay in assisted living safely for longer. Medicare fully paid it. The hospice for dementia was especially wonderful when my mother did move into the memory care side of the place. The hospice she had was 18 months long, renewed every six months.
Either way, yes, it's time to move her.
You do not deserve any guilt for making this decision for her. She needs help and you can provide that help for her by ensuring she is safe and secure, with all the chores done for her, meals prepared, social activities available, and help with managing medications and personal cares as needed. You can move her familiar furnishings and photos or decor to her assisted living apartment so that it feels like home to her. She can live as independently as she is able in an assisted living apartment, but with added help and services to make her life a little easier.
As for her "going home", (everyone wants to go home) AL can be her new home.
Also: It doesn't have to be all or nothing. You could put her there for a month or two respite and tell your mom it is just on a trial basis. Also tell her she can go home if it truly isn't working out but give it a shot. She might get used to it quickly. Also, a lot of ppl trick their cognitively impaired parents by telling them it is a rehab place. If my mom had been coming from the hospital or rehab, that is what my family would have tried.
Yes, it sounds to me like she needed to be in a facility months or perhaps over a year ago. No one livikng like this is able to care for themselves.
Discuss with a facility administrator and her MD.
You reside far away. She needs ongoing care.
She will never agree to go. No one with dementia or living like this (unable to care for themselves) will agree or 'want to' move. Yes, she may be in tears and this is very normal. She is scared and confused and doesn't want change.
You need to make decisions based on what is needed for her well-being and realize that she will be distressed initially. She will adjust (perhaps with volunteers (friends, neighbors) visiting that you'll need to arrange), perhaps facility socialization activities.
It will take time for her to adjust.
Coping with guilt - when you do what she needs for her well-being, your feelings of guilt will subside or certainly change; I believe you are feeling uneasy, if not grief, of how she is living, and the changes she is going through requiring more daily care.
She is living with cockroaches in her refrigerator. This is a major red flag.
You do not want her living like this.
Visit facilities either near you (move her) or in her area.
Home care is a 24/7 need. It gets extremely expensive and there is no medical staff available to manage needs as they come up.
* She will have professionals in all areas (medical, social workers, department managers) in a facility AND you will be able to get reports from them of how she is doing / her needs as they change.
Gena / Touch Matters
I think you should contact an eldercare lawyer to try to get her on LTC Medicaid.
I was able to do that for both my parents in NYC. It is worth a consultation. I really thought they would not qualify, but they did..
She has dementia. Her brain is broken. It is your job to keep her safe. She no longer gets to make any decisions involving her care going forward..
DO NOT FEEL GUILTY. You did not give her dementia. Good luck.
Please replace guilt with grief as that is the more correct feeling you are experiencing now. You did not cause your mothers decline so you should not think it is guilt you are feeling. Grief is normal. You need to place your mothers NEEDS first and formost over wants. Safety is a major concern and she needs to be at a place where she is safe and her wellbeing (and yours too) is top pority.