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?
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.
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.
Good luck, my prayers are with you! This is such a tough decision.
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.
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.