I am considering bringing my husband home to care for him, for two reasons:
1. I think it is too soon to leave him in a facility where he does not always engage in activities. He is enouraged by the staff but when he refuses, they move on to other residents. He will sit in his room or on a bench in the common area by himself. I think an adult day care center is a better place for him because their client group size is smaller.
2. The place he is staying is expensive. He is not yet qualified for medicaid.
3. He needs help with bathing and changing underwear, and brushing teeth reminder. Facility is too busy.
4. He is lonely. I want to give him the best quality of life while he can still remember or enjoy.
I will enroll him in an adult day care center during the day while I am at work and hire part-time help at night but I am unsure what other issues or problems there might be with this plan. Any insights?
The cost of home health aides runs about $25 per hour ...with more for 2nd and 3rd shifts...and overtime. This can cost a lot more than NH.
If he needs help transferring....you need to consider how many hours a day you can have an aide there. What about over night? Are you physically able to help him in and out of bed overnight? If not...are you prepared to clean him up in the morning? Or have an aide there when he wakes?
I believe that if it is possible..being home is often better. No one will care more about him than you. But, cost and physical demands are often more than can be handled in home care setting.
1) Be absolutely clear in your mind and in your emotions that you will place him in a suitable facility if/when you cannot provide excellent care at home. And be realistic at judging that. Think ahead about what will be the thing or things that will tell you it is time for a facility.
2) The day program is an excellent idea. (Some are better than others, though.) He will definitely get more stimulation and encouragement there. He will also be allowed to sit out the activities he doesn't like, usually in a recliner in a quiet room. Even if he doesn't participate in many activities, it is still good to have another adult say, "Oh is that a new shirt? It is a great color for you."
3) Having someone there to get him ready in the morning is awesome. Most day programs have a bus or van to pick participants up. Maybe the care person could just get him ready and wait until he is picked up. (Sometimes there are liability/insurance issues if the care person drives for you.) Think ahead to what you will do when (not if) the carer can't show up and you don't know until the last minute (she is suddenly sick, etc.) Is your work situation flexible enough for you to show up later than usual?
4) Have a contingency plan for days your husband is sick or has medical appointments, etc. and can't go to the day program. Is your work something you could occasionally do from home? Do you know anyone who could/would step in for a day or two?
5) Have as much fun together as you can!! Do as much as he is capable of. Eating at a restaurant, going to a museum (even a children's museum), going to a sporting event, even shopping for new pajamas if he likes that kind of thing. And if he can manage it, go on trips. One day or one week -- whatever he is up for. Make adjustments as his dementia progresses.
6) Make things as easy on you and on him as you can. Even if he walks just fine, use a wheelchair on outings. (Reduce the fall risk and go at your pace, not his.) Make your home accessible for him. If your toilet is low, consider replacing it with one at at height approved by ADA. (You'll like it too.) Of course, get handrails in appropriate places.
I am going to post again sharing my own experiences with you. (I have another commitment now.)
In 2003, at the age of 77, my husband, Coy, was diagnosed with Lewy Body Dementia. For the first few months his behavioral symptoms were off the chart. And then everything settled down into typical early-stage symptoms. An ALF would have been an appropriate placement.
I decided that as long as he could get by with "Assisted Living" I could provide that at home (with help.) I did not promise him or our family that I would keep him home forever. I knew if he needed skilled nursing or if his behavior got as bad as it was the first few months he would need care beyond what I could provide. I was able to keep him at home through the hospice experience in 2012. These are factors that made that possible:
1) I was 19+ years younger than he. I think that is significant. If I were in my late seventies, too, I am not at all sure I could have done it, or at least I would have needed lots more help.
2) I worked from home. It took me 7 days and lots of working at night to achieve 40 hours, but I could do it. In the beginning when I was trying to go out to work I found that extremely stressful. He wasn't in a day program at that time -- that might have helped a lot.
3) He went to a day program 3 days a week. It was good for him and necessary for me.
4) When his dementia was too advanced for the day program I had a personal care assistant come in. That was wonderful!
5) I learned as much as I could about his kind of dementia, and about caregiving someone who has dementia. I belonged to a support group. I participated in online discussions. I went to seminars about dementia.
6) We had fun together. In the beginning we went on significant trips -- Amtrak to Glacier, for example. As the dementia advanced we had shorter car trips into the neighboring state. We found a board game we could play together. We went to free concerts in the park, and joined the local Science Museum with a discount because of Coy's situation. We went to restaurants. He loved that, but a menu has an overwhelming number of choices. I'd show him just one page and suggest a couple of things I knew he liked.
7) At all times I knew that this was my choice, and that I could choose differently at any time. I think attitude makes a great deal of difference in how we can cope.
We did something similar for our mom. When she could no longer live alone, she moved into my sister's home. That year was her "assisted living" period. When her needs required skilled nursing, we placed her in an NH.
Has your husband experienced troubling behavior and/or is he on meds?
Overall I would agree that care at home is best but it does take a village
I would much prefer mom to be home but her behavior became the obstacle with my long work hours
I have seen both men and women become violent at mom's memory care facility and otherwise sweet gentle men have hit their wives - they're often up most of the night too
Dementia is a long tiring and expensive journey
Eventually Dad decided to move to senior living which cost him $5k per month, and he really enjoyed being there. He wasn't one for activities, either. He was happy sitting in his recliner watch 24-hour local news and reading the newspaper. He did get morning physical therapy. He would keep his apartment door opened and other residents who finally learned who he was would call in "Hello, Bob". And he had the same table mates for meals, a couple who was from his old home State.
When it comes to memory issues, it can take a village to take care of your husband. You're right an Aide isn't always there as facilities have a triage system. I am surprised that where your husband is living an Aide isn't assigned to him to give him a shower, I wonder if he is refusing as some guys can be very shy, my Dad was.
So you need to write down the pros and cons to having hubby at the facility or for him to live at home. My boss's wife had Alzheimer's and he took over the night shift, too many nights he would get only 3 to 4 hours of sleep due to his wife wandering around the house and/or not getting to the bathroom in time. He was constantly doing laundry at 3 in the morning.
I know you are trying to do your best for your husband. But if you are working full time, I think bringing him home would present a lot of challenges. I guess it never hurts to try and see how things go and if they don't work out, then would going back to the facility be an option?
My situation was different, I wanted to bring my dad home after his stroke and stint in rehab. I implemented all the suggestions for the physical and occupational therapist. I thought I could handle taking care of his meds, his foods, all this appointments, taking care of the house and going to work full time. I too thought he would be better off at home. But I failed to realize how difficult it was to manage all these things and let the anger and resentment build. I did try but since his passing I wonder if what I did was the best for him.
It is also imperative, i believe, to see a Medicaid savvy Certified eldercare attorney to make sure that you, the " community spouse" do not become impoverished.
I am still working full-time. I am still too young to retire. Besides, someone needs to rake in the money to pay for his care.
My husband has Alzheimer's. He has some savings and long-term care insurance.
My wish is to pick him up after work from adult day care center. I will also hire an aide from 10pm - 9am, but most of the time the aide will have nothing to do but to watch TV and be a watchful eye in case my husband attempts to do something psychotic. The most labor-intensive part of the aide's job is from 7-9am when s/he needs to wake my husband up to give him his medication at 7am, get him ready for breakfast and then drive him to the adult day care center. So, the last 2-3 hrs are most crucial. The rest is just watching TV or studying, I suppose. The cost for adult day care and night aide is less than assisted living, and he gets better care at home.
But I strongly believe that this is one of the areas where they differ greatly. Bringing a spouse home is NOT the same as bringing a parent into your home.
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