Nursing home or ASL dementia care?

Anneh1,
I might get a second opinion on the advice the attorney gave you.....just to be sure. It depends on the laws of that state, but in NC, I got several legal opinions and then met with the Social worker, who confirmed what I had been told about how AL works in NC.

In our state, there are quite a few advantages to Memory Care AL over Nursing Home. Plus, the AL seemed to offer more for residents who are not bed bound. However, they may stay in Memory Care for the rest of their life, as long as they don't require skilled nursing care. Plus, it's much less expensive than Nursing Home care.

I'd definitely check it out and see which would work best for your situation in MD.

I visit in an AL facility with a locked down memory care area, and find that not only has one of the patients managed to bypass the locks and gets out, but the facility still keeps both her and a patient who has violently attacked both aides and patients. Try to ask enough questions, both at the place and of family, visitors, or ex aides if possible.... the lady I visit is afraid of the violent one. I did find a lovely group home, mostly for people with memory problems.... it only has 10 residents, and 3 staff on duty at a time; cooking, cleaning, spending time with the residents, They take them places and have musicians and other entertainers come in sometimes.... It is only 1/2 the cost of the local AL and I think it's great! The other lady I used to visit went there after 3 yrs at the AL and her family is very happy with it; she has settled, too, and seems fine. Just say'in....

No she says Alzheimer's is the problem, although many folks use the words alzheimer's and dementia as if it is the same thing. The only ASL I know of is American Sign Language. We can only guess that if she cannot manage him, she will need a court order to place him. That's expensive, at least $3K, more if he decides to fight her.

Confused. Are you referring to ALS dementia?

In most cases, at least in NY, Medicaid covers nursing homes, not Assisted Living Facilities, with few exceptions. If your husband has Alzheimer's, and progresses to the point of exhibiting Alzheimer's symptoms, an Assisted Living Facility will ask him to leave. An Assisted Living Facility is a place for people who are still fairly independent, but may need medication reminders, or someone else to cook the meals. In general, the person in an ALF will need to manage their own schedule, get to the dining room themselves, etc. Note also, that in an ALF, things like showering assistance and medication dispensing all involve an up charge, so when thinking about the cost, be fully informed of any additional charges that may apply in your situation.

A nursing home is all-inclusive and provides whatever care is needed. Nursing home (NH) residents are more closely monitored, as is their weight, behavior, general health, etc. The nursing home staff will bathe your husband (2x a week), dress him, transfer him, and if it becomes necessary, they will hand-feed him.

Dementia is tricky. When I put my mother into a nursing home she was speaking, eating and dressing herself, going to the bathroom herself, etc. I put here in because she could not be left alone, would wander out of the house and get lost, and refused to bathe. Her personality had become volatile and although she could no longer cook, clean, or care for her house (she didn't understand anymore), she would get paranoid and violent with the in-home care to the point where the agencies stopped being willing to send aides. I could not care for her myself 24/7, I knew that was beyond me. So I began touring facilities. I toured a total of 16.

At some, I was told that if my mother was able to walk, she didn't need nursing home care, she only needed "supervision." They clearly did not understand Alzheimer's or dementia. I finally found a place for her. a private room in a secure dementia unit at a nursing home. It was the right decision at the right time.

When she entered, she was well enough to mentally adjust to facility life and enjoy the activities offered. We needed that adjustment period. Now, one month shy of 2 years later, she is unable to speak in words, and she is incontinent. Her dementia has progressed, and they are able to handle her care, really, without missing a beat. That's what they're set up for.

So, what I hear you saying is that you want to find the right fit for your husband. Some things to keep in mind. Be aware that his dementia can progress. If he has Alzheimer's, a nursing home will likely be needed in the future. It would be wise to at least find out what would be involved in getting Medicaid for him, since there is a 5-year look back. Now would also be the time to find out how to preserve as much of your assets as possible. (I hope your lawyer discussed "spousal refusal" with you. If not, consult with another lawyer.)

The only way to really know what places are like is to tour them. Nursing homes and ALFs vary in what they offer and what kind of resident they are able to serve. When I was looking, I contacted 22 facilities in my area and scheduled a tour and informational interview with the 16 that has a "locked" or "secure" unit, since my mom still walks.

If your husband has dementia that you cannot manage, and he walks, he will need to be in a secured unit, wherever he goes. This is probably the first question you should ask the facility, whether or not they would accept someone with dementia who walks. only 16 of the 22 facilities I contacted would.

While you're on your tour, pay attention to the way the facility makes you feel, either comfortable or uncomfortable. Use the information gathered during your tour to pre-decide which facilities would be acceptable to you. For example, our facility has 24 hour visiting hours, other facilities have more limited visiting hours. There are many components and many different kinds of facilities. I wish for you that you find one that's a good fit.

If you can find a place that will go from one to the other that might be your best bet. If he is still able to do many things for himself placing him in a facility where he will get little stimulation will, I think, accelerate his decline.
If you have no other option than to place him in a "Nursing Home" then that is your only choice.
I have always thought of a Nursing Home for someone that needs "Nursing Care" In some places now that is anyone that needs mechanical means to transfer from bed to chair. Or other such care.
Memory Care is for anyone with any form of Dementia that does not need mechanical help to transfer.
Assisted Living as a place where one can still manage some ADL's on their own.
I think the term Nursing Home is used as a blanket term.
But as any spouse does you do the best you can for as long as you can. And the hardest part is to recognize when you can not care for your loved one as well as you want them cared for.
Placing him you can become first a wife then a caregiver.
Good luck with a difficult decision.
And when the time is right no matter where he is call Hospice they will help you as well.

In some states Medicaid will cover either memory care or nursing home care. But I suppose your lawyer would know that for your state.

If finances come out about the same for you, then certainly consider where your husband would probably get the best care.

My mother had dementia and also mobility issues which made assisted living impossible. She spent her final 2+ years in a nursing home where we felt she got very good care. In the course of that time several residents were put on hospice care, but only when they were in the last stage of their lives. I think you will find that happens in Assisted Living Facilities, too. It certainly does where my daughter works. So I guess I don't understand what your concern about hospice is.

Does your husband need assistance with activities of daily living?

I was able to keep my own husband in our home until the end. (He was on hospice at the very end, in our home.) I never promised him I'd keep him home, because I know that it is more usual to need a care facility toward the end. But in my own mind I knew I would not place him in ALF because as long as he only needed "assistance" I could provide that (with in-home help -- not single-handedly). If he got beyond that I knew he would need skilled nursing care.

Since your husband is getting beyond you ability to care for him, I wonder how realistic assisted living is at this point? Certainly this is something the facilities can help you assess.

Whatever you decide, my heart goes out to you! Having a spouse with dementia is absolutely heartbreaking, and while you deal with that you also have to make tough care decisions. Hugs to, Anne!