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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?

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Fortunately, Worriedspouse, this isn't a life and death decision. If him living at home with you proves to be too much for you, you can always have him return to the facility. Try it because it sounds like you two are still able to share some of life's good moments.
Try not to second guess everything you do. Just like when we become parents for the first time, babies don't come with manuals. Neither do spouses with dementia. You will not do any irreversible damage to your husband and, as long as you don't need to physically pick him up, you won't do any lasting damage to yourself either.

Nothing is cast in stone. No reason not to give it a try. You can always change it.
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It is comforting to read some of the posters believe I am doing the right thing by taking my husband home to let him enjoy life while he still can. Of course, I am not dismissing those who are dissuading me from doing so. Those points are valid too. Because I made care giving mistakes in the past, I am now questioning every decision I am making. At times, I feel paralyzed because I fear of making a mistake, so I end up not doing anything, which is also a mistake. I wish I won the lottery and hire the best care manager money can buy to tell me what to do.
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WorriedSpouse,
I just brought my 94 yr. old mom with stage 6 Alzheimer's home with us because the cost of the memory care facility kept going up and her SS check no longer covered the rent. Unfortunately, we couldn't financially help her out.

She started falling a lot. I got a lot of conflicting information at the facility. One aide said she fell at the dining table, the other said she fell in her room (?) She was falling more than she should have. I took her to the hospital for a fractured wrist 3 months ago.

Two days after she was here, she ended up with bruises on her left face, left ribs (bad) and left hip. Bruises take a couple of days to come to the surface, so she must have fallen a day or two before we got her. She is very unsteady and I put my arms under her armpits while she walks with the walker. I'm sure they weren't doing that.

Her nurse "missed" a cellulitis infection in her leg (I pointed it out.)

I took her to the bathroom at the facility one day and noticed that she couldn't "bend" to sit down or get up on her own. I asked them to take her to the bathroom every 2 hours and assist her to sit. They thought she could go by herself but then told me that she pulls down her diaper and pees in the corners of rooms. I guess they weren't doing that either.

Well, she's definitely getting one on one great care with us but it's taking a toll on us. We've had to hire a caregiver for 4 nights a week just so we can sleep and sleep in the same bed. On the nights she's off, one of us sleeps in her room because she gets up at least once a night.
We are almost driven mad with the incessant questions. One day I heard about her "terrible headache" 41 times. We are learning to "tune out" and now don't feel we have to answer each and every comment. An iPod is a great thing. She can ask a question and literally 5 seconds later, ask the same question. You need the patience of a saint and I'm not one!

Your husband sounds like he's in stage 3-4. It should be fine for art least awhile. Enjoy all you can. Unfortunately, it will get worse. Cherish this time because stage 5 is a challenge!
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I agree with most of the responses. I am dealing with the care of both my parents 92 , mom with dementia and dementia and onset of alz-timers for dad. my hubby has Parkinson Disease for about eight years now. beginning to progress recently, unsteady shakes etc. not able to help me much anymore. its difficult but I care for them at home. I want them to remember me as long as possible. I want them to enjoy their home, the memories they have there, the love that flowed through out the house but most of all I want my parents to know and feel the love we all have for each other to the very end of their life. I see that this is something they do not feel in the nursing home. caregiving, is very draining, lonely at times, upsetting, has many draw backs to it but when I look at my parents and they smile when I come into their rooms, or when the "sun down" pops out and they say the craziest funny things that they think is going on, I forget the hard times and will always have the memories of the laughter they gave me daily and the love that I have for them....
my parents right now are both in rehab due to the same infection in the bones of their feet. they required eight weeks of additional drip anti-bio, so they required going to nursing home for it. it is no where near being home for them. I see so many people sitting in the corners all day, rolling around in their wheel chairs all day, crying, they look so lost within there bodies. I see and hear them begging to go to the bathroom and and the staff just walks by them with no response to them at all. that's not the life I want for my parents.
so if you are able and as long as you can, take your husband home. spend your time with him and show him the endless love you have for him for as long as you can. take the good memories to bed with you and forget the bad. make him as happy as you can as long as you can....I don't regret a minutes of it and I pray it will never end....
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Worriedspouse, My initial comment was mainly focusing on the most difficult part of being a caregiver, you have that well covered. What you have decided to do for your husband at this time I agree with you completely. In the facility he sits alone, doesn't get involved in activities, the man is lonely and only more depressed not to mention the expense. It would be cruel to keep him there, folks like you and I, and the others who commented so caring with heartfelt advise support and respect what you're doing. When faced with something like this we don't know if what we're doing is the right thing, most of the time we're thinking with our heart not our head. We find out if the decisions we made were the right decisions when it's all said and done, life only makes sense when you look at it backwards. Stay strong you are a special woman. I wish you and your husband the best.
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MsMadge: My comment about being psychotic was tongue-in-cheek. My husband has never had troubling behavior. He was and still is the most gentle person you can find. Unfortunately, he became paranoid and delusion when he first had sundowning, but now he is stabilized with Seroquel. Of course, we all know that the only thing that is predictable about dementia is that it is unpredictable. A gentle person could morph into someone violent, and vice versa. I do not know what my husband's future will be like, other than that he will get worse, won't remember anyone, and must be institutionalized. For now, let him enjoy life as much as possible when he is still aware of what's going on.
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There is one word in your post that would give me pause - if he does something psychotic

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
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It depends. Find out if your state Medicaid program pays for Assisted Living AND if there is a Medicaid diversion program that pays for AL.

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.
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Many thanks to all who posted their advice. All are valid, I must admit. I know that his condition will get worse, no question there. The science is there. I think I'd be mentally and emotionally ready to move him to an assisted living or nursing home when he is so far gone that he does not know or care where he is. But until then, I feel he would be better at home because he still has cognitive functions to know what's going on and where he is living. Also, we don't have a lot of savings, so living at home with a part-time help will stretch the dollar until he is qualified for Medicaid. As in most states, there is a 5-yr look back. I want the funds we have to last at least 5 yrs, because there is no way we can afford assisted living without funds.

By the way, does anyone know if Medicaid pays for home care?
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BTW, I think in many respects caring for a parent and caring for a spouse are equivalent.
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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Here's my experience:

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.
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I think I am going against the grain here, but I say Bring him home.

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.)
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That's very considerate it shows the type person you are, you're putting your husbands needs ahead of your own, all I can tell you is please think it through. With that comes an enormous responsibility, the plans you have with the assistance you'll get seldom work the way we hoped. It happened with me when my wife was diagnosed with cancer. I was determined to keep her as comfortable as possible no matter what, the condition along with her increased suffering lasted longer than expected ( I expected anyway ), I took an indefinite amount of time off from work and when I had to go back due to needing money, ( our savings went 50 times faster than it took to save ) I couldn't leave her. It took a toll on me I couldn't put into words, I wanted her suffering to end. I asked for it because I loved her so much no one could care for her the way I could, I thought. Didn't give any thought to what if I couldn't handle it alone, from the worry about keeping her as nourished as possible to her hygiene to finding someone to stay with her as I went food shopping, I saw ever ugly step a fatal disease threw her way that I wish I hadn't. I didn't sleep, I hardly ate, showering and shaving were no longer at my pace I worried more and more as G got worse, I think I thought perhaps my love and care would keep her somewhat better longer, not true. I wish you the best whatever you decide, think it through play the tape all the way through before making a final decision.
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Dear Worriedspouse,

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.
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I now realize I left out some important info about myself in my original post which would have helped other posters with their responses.

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.
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WorriedSpouse, are you working or retired?
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Worriedspouse, when my Dad was in need of 24 hours care, he hired around the clock caregivers from an Agency, that way he was never left on his own as the Agency would find a replacement quickly if a caregiver couldn't make her shift, which was rarely. But the cost.... oh my gosh it was $20k per month, yes per month. As Katie mentioned above, it cost more then a continuing care facility.

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.
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Well..this first consideration is what are his needs? Does he have dementia?

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.
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