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?
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.
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.
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.
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.
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.
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 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.
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.
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