I'm 73 and in good health. My wife of nearly 50 years is 68. Eleven years ago, her right leg was amputated above the knee after several failed knee replacements. She wasn't able to use a prosthetic leg, but mastered her electric wheelchair-- to the point that I almost forget she only has one leg.
Her behavior became altered around the first of June, and she now has full-blown dementia (still in the process of being evaluated as to cause, type, and treatment). She still knows people and pets, but is totally disoriented as to time and place, and while her demeanor is usually calm and sweet, she can suddenly go bat-shit crazy-- not violent, just agitated. For instance, the SNF called me tonight to calm her down-- she thought her pills were poison and that the caregivers were trying to harm her.
She can no longer use the electric wheelchair, and has lost the ability to transfer independently-- she can use a slide board with assistance, or a Hoyer lift. She has also become incontinent.
After 12 days in the hospital due to a fall, she's presently in an SNF for rehab. She'll be leaving the SNF within the next couple of months-- and I'm trying to decide what comes next. I've visited a couple of top notch Memory Care facilities, but as good as they are, I still came away feeling like she'd simply be warehoused there. She is far more alert and active than anyone I saw in those facilities.
We have no children or relatives nearby, and most of our friends live far away. But, we have a single-story home that would be easily adaptable for use of a Hoyer lift and anything else we might need. We also have the resources to hire a caregiver for up to 8 hours a day.
Is it feasible to think I could care for her at home?
What your wife needs now is placement and several shifts of caregivers trained and young and well enough to care for her. She will not be getting better, and will in fact be worse, and attempting home care for her will endanger her and you, yourself. You say that you feel you are warehousing her. That is a poor definition for hiring 24/7 care over someone who cannot in any way function for themselves. You are getting safe care for her to the best of your ability considering your assets.
It is time to place her and doing so now, with the assistance of discharge planning, is the best option. Please also take care of yourself by seeing an elder law attorney so as to lock in ways to protect your portion of your joint assets. Otherwise all will go to her care leaving you possibly only 100,000 for your own care in future. That isn't enough.
You have very tough decisions ahead and need to be realistic and to know all the options for her and your own protection. I am so very sorry you are faced with this. Your wife is not the woman you married and soon will be unrecognizable as such. She is deserving of safe and adequate care. You are deserving of a life.
However, there might come a time where even with caregivers it's just not going to work for you any more (example: even in a care home, my dad's dementia progressed to where he decided that the place to go to the bathroom was over the floor vents, and he kept trying to climb out of windows to escape--no he wasn't locked in his room).
Some adult family homes (5-6 residents and 2 caregivers) will allow their residents to age in place and even allow all of their residents to transition to Medicaid beds....just call around to see if you have any locally. I know, you stated you didn't think you would need to resort to Medicaid for her, but just make sure that you have enough funds left for yourself to survive. The adult family home my dad ended up in was less than 4 miles away, so I could go visit with him as often as I wanted.
Some people even have to consider divorce, just from the financial aspect...I'm NOT suggesting that you wash your hands of her at all, so please don't think I mean that. Perhaps an elder law attorney could help with suggestions, as I do not personally know anyone who has gone that route (divorce, for finances only), and no idea if that's even a sound plan.
Best wishes for your difficult situation.
Have you heard the term 'sundowning'? When the sun goes down, the hallucinations and personality changes start. We fight the sundowning with a prescription med. I don't know if mentioning specific drugs here is kosher. This is my first post here in agingcare.
My wife's issues started with a stroke and blood clot during a knee replacement surgery right before the covid lockdowns. She spent a month in a rehab facility during the lockdown and was only allowed window visits. Those visits were like a Sara McLoughgin ASPCA commercial with her shaking and wild eyed alone in her room. I never want her to go through that kind of thing again. So I'm doing all I can to keep her at home. When she gets agitated and asks where she's at, I tell her 'you're at home where you're loved' and that gives her some peace. I also like to pray over her at night when I get her settled in for the night. She likes to hear my prayers and I do think it helps keep the voices in her head at bay.
I think my problem is that she is sometimes entirely lucid--she called a few minutes ago, discussed how therapy went, and asked me to bring over KFC for dinner. You'd never know that twelve hours earlier she was totally out of control, refusing meds, insisting she was being kept in the basement of a house, etc.
I have no problem putting that crazy woman in a facility, and I'm under no illusions-- that will probably be required one day. But when she's lucid and rational for much of the time, as she is now, it seems like a huge betrayal. When the time comes that she doesn't recognize me and doesn't know where she is anyway, I think I'll feel differently.
Memory care will feed her, toilet her and keep her safe. If it's a good one they'll have activities to help her socialize. You could visit every day.
12 days in the hospital is a lot these days - she must have been badly hurt. My mom fell and broke her hip three years ago and was in hospital less than a week. What was her status between June and the recent fall? Was she really alert and active, or are you remembering her "before"? I'm sorry to say it doesn't sound like she'll get much better. People with dementia are often worse at night. Some of them don't sleep much. How will you get any sleep if she often becomes anxious after the caregiver has left for the day?
I suppose you can see how the remaining weeks of rehab go and give it a try. You might be a person who can't let himself give up until he sees that it's absolutely not going to work. I wouldn't fault you for that. I think you already know it's not going to be a long-term solution.
Before anyone has a problem, things have changed drastically in this field, what I experienced and what others experienced is NOT what we would experience now. Are there good facilities with caring staff? No doubt but, finding one is the trick.
We are fortunate to have the financial resources to handle this without being concerned about qualifying for Medicaid, etc-- so while I realize that's a determining factor for most folks, I'm immensely relieved to say it really isn't pertinent here.
I'm just thinking that, rather than pay the Memory Care $8000 per month, I can spend that on caregivers here at home. There's an outfit here called Senior Helpers that provides trained and bonded caregivers, and they are their W-2 employees, not mine. I would just pay Senior Helpers $38.75 an hour, and they'll provide the caregivers.
We also have an outstanding hospice program locally for dementia patients, which would provide periodic visits from doctors, nurses, social workers, etc.
I'm envisioning perhaps having Senior Helpers from 9 to 5 each day. They could help with her morning routine, make all our meals, etc., as well as giving me time to do some other things. I'd only have to handle her alone in the evenings and overnight, which I think would be doable, especially if I had a Hoyer lift, which I can get (and, with some minor home modifications, we do have room for one).
I'd manage the overall care, a task for which my previous working life makes me well-suited. I'm just trying to figure out if the fact that we can afford to do this may make it a better idea than the memory care facility.
I would just like to say that you're a loving and caring spouse, and are trying to do your best by your wife. As hard as it to do, sometimes recognizing our own limits is the most loving thing we can do. If she's receiving good care, it frees you to have your relationship without trying to be her spouse and her caregiver.
Let her be cared for by professionals, and you take care of yourself. You can advocate and be supportive from your peaceful home.
Oh, and I've done home care and am doing it now. Nuh-uh. Not a good idea.
You say she will be warehoused there. The sad truth is that she will be sent there because she needs 24/7 INTENSIVE care by a team of workers. And that team doesn't exist in your home and you cannot be that team. That team exists in what you call a warehouse. And they likely often feel the SAME as you do about what happens when we lose everything including our mobility and our continence and any sense of reality and how to live in it.
This is a simple (if devastating) fact. You cannot do this. You didn't cause it. And you can't fix it. And that is the sad truth of it all. It could conceivably kill you, and then where would you dear wife be.
The time for evaluation and diagnosis is now, while she is in care. The time for placement is NOW while she is in a place where there is discharge planning. Start by seeing an elder law attorney NOW, soon as you can, about finances and division of finances looking to placement.
There is what we want, what we dream could be, and then there's reality. I am afraid you are smack dab in the latter. I so wish you luck, but you can only do so much. You are human, not a Saint. And the job description for Sainthood is not a good one.
I suggest you see an Elder Lawyer about splitting your assets. Your wifes split would go towards her care. When almost gone, you apply for Long-term care Medicaid. Once on Medicaid, you become the Community Spouse, remain in the home, have one car and enough of your monthly income to live on.
I, personally, think that we can do whatever we feel up to when our spouse needs us. So, it would be what you know you can manage, be that facility care or home care.
I really like cwillies story, get the care provided and do enrichment activities. That way both of you are getting your needs met.
For in-home care you will need to consider the loss of your privacy every day. In a good facility there are activities and events and other people. My MIL is in an excellent LTC facility on a large metro lake. She's in a wheelchair yet they take her out on the pontoon boat to fish. They have fancy dinners at Christmas and Valentine's day, they have visiting pets and musicians, bingo, movies, raised garden beds for residents to grow things, etc. An argument against keeping your wife at home is that it will be a more "sterile" environment for her -- unless you find a spectacular aid who won't be looking at their phone every 15 minutes. Being at home may mean more to you than to her as her cognition deteriorates.
Is your wife a 1 or 2-person assist? If she can no longer transfer herself, are you willing to be locked in as the 2nd assistant? How much management are you willing to do? When that aid is sick or on vacation you will need to find subs. Plus, you are then an employer in the eyes of the IRS and need to provide a contract, do payroll withholding, quarterly reporting and W2s.
I'm not against in-home care it's just that you will need to go into it with your eyes wide open.
Good luck.
Also full time caregiving at any age is really hard on your mental and physical health.
If your wife was of sound mind she would probably be saying the same thing to you.
Best of luck