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Here it is in a nutshell:

In Skilled Nursing:
*husband with moderate dementia had a stroke last Aug. Left him completely paralyzed with left arm and leg. His dementia is getting worse. He must now also drink thickened liquids and keep to a soft mechanical diet.
*constant begging / prodding to "go home"
*difficult for wife to leave at end of day
*wife spent many hours / day there keeping him company
*wife is 88 yrs. old....still driving, but has health problems of her own
still very much in full control of her mind, emotions, etc.
*wife would leave to go home at night, husband would call their house several
times before she would even get there to see if she knew where he was, if
she was coming back, to say good night, etc.
* VERY wearing on 88 yr. old wife; she was not able to find time to take care of other business such as caring for the home, or making and attending her own doctor's appts., etc. Felt she could not just "leave him unattended" at the facility. She always feared they would not catch something or make mistakes in his care. (not unfounded....the facility DID make several mistakes during his stay there, although I think that happens no matter where you are)

*Wife decides it couldn't be any worse to move him back home. At least then she wouldn't be making several trips to see him each day and then the constant begging to come home would stop.

AT HOME:
* Because he has just enough mobility on his right side to wiggle around, he is a constant fall risk.

* She is 88, small, and frail. She cannot help him physically or get him up when / if he falls.

* She has hired 24 hr. care from a home health agency. She requests only male caregivers, as it takes a man to do the physical transferring of him. (200 lbs. and 6 ft tall)

*Male caregivers have been lazy and rarely perform all the required duties of the position and, believe this or not....would actually ASK HER to come help them move him when he needed to be moved! Eventually some of his meds starting disappearing, as well.

* By now, we have had to let several of the caregivers go for reasons like the above. We are worried that the agency will run out of male caregivers that can be sent for the job, and then if any of them will actually DO what they are supposed to do!

* The home healthcare is costing much more than the skilled nursing facility and yet, Wife is not free to go about taking care of business, make her appts. etc........when she leaves, the caregivers either nap, watch tv, surf the internet, etc....and even when she writes down tasks that should be done before she gets back, they always have an excuse for not doing it.

At this point I am wondering: Should we just move him back to a facility, save some $$$$, brace for the constant barrage of " Where's my wife? When can I go home?", etc and hope she learns to manage it, or keep doing this song and dance with home healthcare? Just wondering what others may have done in this situation?

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What a difficult position to be in! Sadly, not uncommon though. There's a misconception that, once someone who requires a great deal of care is in a nursing home, that the family can relax. Not so. The work and worry of the physical needs are over, but often the emotional needs ramp up.
His wife loves him and wants only his happiness (even at the expense of her own) however, I think the only way to make a good decision here is to look at the situation pragmatically and objectively. Most people don't consider it, but size is a real factor in providing care for large people with low or no mobility - sometimes, AL or SNF are reluctant to take them because of staffing concerns, likewise with home care agencies. Her husband has been unable to get adequate care at home, despite extraordinary measures. He was able to be well cared for in the nursing home. He is more anxious in the nursing home than he was at home. Given those facts, I think the clear decision is a nursing home. His physical needs are paramount. He won't be 'happy' at home if he cannot be kept physically comfortable and it would be a tragedy if his care made his frail wife sick. So, dealing with his emotional needs in the nursing home is a more achievable task than dealing with his physical needs at home. And, the dementia will get worse. At some point in the near future, home care won't placate the desire he expressing; he'll be emotionally challenging no matter where he lives. I'd focus primarily on his wife. Work with her in setting boundaries, in understanding her husband's dementia and in protecting herself. And, practically speaking, he and his wife may live for several more years. If so, spending through their assets in this way will give them precious few options as her health deteriorates.
Keep in mind, too, that when he's begging to 'go home', he's not just asking to go lay in a bed there rather than at the nursing home, a large part of that is his yearning to return to the person he was prior to last August. Compassion for those feelings is what's needed more than literally meeting his demands.
Sounds simple. I know it isn't.
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This is an accident waiting to happen to her and then what?

What about looking into a "tiered" facility for them both to live in. By that I mean one that has IL, AL and NH (with rehab unit) and also does hospice. This may seem rude, but realistically the wife at 88 will sometime in the near future could want to OR need to enter a facility. Sounds like she is fine and competent and can do all her ADL's so she could do IL. The husband could be the the NH & her in IL.

If he is on MedicAID, then she is still considered a "community spouse" and her income and assets can be higher than his and still OK. So she could sell the house and use the $ to pay for her IL situation and she could go to see him daily or multiple times a day. Then eventually she will go either into AL or NH part of the facility.

Isn't easy has got it spot-on.....he wants to go home to what home meant before for him which is the past. Focus on what's best for the future for both. None of this is easy but you really have already answered your ?. Good luck.
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Thank you both for pointing out that when a loved one begs to go home, they are probably really saying they miss their past life, and not necessary actually miss their current life at home. My loved one is able to be cared for at home, but we realize the day will come when she will need to leave home to have her physical needs met. Understanding the real issue helps tremendously to deal with it directly instead of piling on the guilt and confusion and wondering what to do. It seems like it is best for all to realize they need to stay at the facility, be visited often, personalize their room etc. Good luck to you, and thanks again.
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I agree with igloo372---To me that sounds like the best solution. My mom is in a nursing facility where she started out in AL. There are quite a few couples living there that are either living together or one is in another part of the building. The transition for your mom would be hard at first but she will make friends there and have a support system. And looking into the future, when he passes she will still have her friends there and less disruption in her own life when she needs care.
Good luck, my prayers are with you! This is such a tough decision.
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These are all excellent comments. The original post poses very well a common problem for caregivers. To be blunt and to the point, I think things are pretty much over for the husband. He needs to be cared for certainly, but his is a case that demands the utmost in care an attention. The wife should not end her few remaining years attempting to maintain the relationship that used to be. He is going to be difficult medically and emotionally no matter where he is. There's no solution for this other than for his wife to try andvsavevsome of her life. Easier said than done, I realize.
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I just found this thread and have been thinking about it, though it's my mother who is the care recipient. I'm finding that my work is suffering, and I have no time to go to the gym or read, and am getting more and more depressed and overwhelmed. Mom is 50 pounds heavier than I am, and I already hurt myself once trying to lift her. Mobility is very limited. She can take a few steps with a walker but is mostly wheelchair bound and I have to help her go to the bedside commode and change her Depends. When she was in rehab after a minor stroke, they said she needs 24/7 care. Right now she's getting PT at home and I have to hire private caregivers whenever I go anywhere as she cannot be trusted to not get up to try to go potty alone.

I am physically and emotionally exhausted and my health is suffering. Was always very healthy and now I am on two medications for high blood pressure, all stress related. Plus I have sandwich generation issues, although my daughter is away at college I have to be there for her and handle finances for three people.

A nursing home will eventually bankrupt us all, and when I put mom in respite when I was traveling, she hated it. She wasn't safe there either since she got up by herself and fell twice, and this was one of the better facilities in the area. When she was in rehab, I had to go every day and spend hours with her. I don't know what to do. I am going to kill myself before I let my daughter be a caregiver! When my dad was dying, I promised to take care of mom, and I promised her no nursing homes, but don't know how long I can go on. Sorry for venting.
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I enjoyed reading the answers above. Am visiting my father daily in his current nursing home (I get there by either 2 buses or 2 trains each way). At the same time, am living in his home and doing some renovations on it. It looks like we'll have to sell it in the spring to insure enough money to keep him in a nursing home. At times, I feel sad that it doesn't seem possible to bring him home - but he needs 24/7 care due to some cognitive issues and a peg- tube for feeding ..And we tried him at home earlier and found it challenging at that time. (he was a "Fall risk" and got up quite a bit at night too). It would cost about $4-5000 per month for help at home...Anyhow, it's good to try to release guilt and do what I can to make his day happier via as many visits as I can manage... (He beams when he sees his family and there are certain simple activities-bingo, visiting in the sunroom, e.g. that he still enjoys). Am looking for a somewhat different type of nursing home that encourages a bit more independence and has a stronger rehab dept. However, for now this is the best that I believe I can do, and I'm lucky that I have one sibling who helps a lot and two more that do what they can. His wife moved out a year ago as she could no longer deal with his needs on her own (and moved out of state to be with her relatives)...So I hope to get him in a place where he can make even more friends and feel totally accepted...Am checking to see if a veteran's home will fit that bill. I may have to move to be nearer to it (or just get a car so that I can live a bit further away and visit as much as I can on weekends). It's not simple taking care of an elder person's needs, but I do feel grateful that my Dad can still speak and that positive memories are being created lately whenever we visit...
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Here's an excellent article that everyone should read if they had promised a parent they would never put them into a nursing home.

https://www.agingcare.com/articles/i-promised-my-parents-i-d-never-put-them-in-a-nursing-home-133904.htm

While reading, if there are advertisements at the end of a paragraph, scroll down to the read of the article, do the same with each ad you see. And click on the comments to see what other caregivers were saying.
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Thank you so much. I just read the article and the entire thread.
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