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My 90 year old father is being released from the hospital after suffering from a mild stroke, he also has dementia. My grown children and I are planning on alternating stays so he has 24 hr care when he is released. I want to keep him in his home as long as possible but am worried about personal hygiene. The nursing staff has told me that he now needs moderate help with toilet/showering. How can I ask my sons to have to clean their grandfather after restroom breaks? Nor can I bring in an outside agency every my father needs cleaned. I don't know what to do. My father has always feared being "stuck" in a nursing home and I want to honor his wishes, but is it fair to expect my children to be able to handle this type of care?

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Every family has their own, personal, dynamic so most of us can only give you an idea of how we prefer things done. In my opinion it is never fair for a senior adult to expect family members to sacrifice their life in order to stay out of a nursing home. It isn't fair that anyone should care for another human being out of guilt or obligation. Care-giving should be a choice made in everyone's best interest. My adult kids help with their father. So far, he can manage his own toileting with an occasional pee spree all over the bathroom or bedroom which I usually get to clean up. If he had been hospitalized and needed bathroom help for a few weeks or so we'd manage it but if it were something that would likely never change that would be a whole other discussion. We manage decisions like this in a family meeting. Talk about the pros and cons, everyone states freely what they are and are not comfortable doing and then we form a plan of action. I will say that 24/7 care for someone recovering from stroke with only three of you providing the care means round the clock 8 hour shifts with no breaks or days off for anyone. I'm sorry, I know it's heartrending for you all but really think about what that means. In many cases someone his age will never fully recover from the stroke. In your situation, our family would probably choose a nursing home and spend a lot of time visiting.
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Reply to faeriefiles
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Because you have raised good children, they will agree to basically give up their lives to help care for Grandpa. They will honor your wishes to not put him in a facility. But is it fair? Because you have written to us, I suspect you think it isn’t. If your children have jobs and families of their own, this will eventually become very difficult for them to handle. Their spouses may resent them being gone to stay with Grandpa. Their jobs may suffer as well. Everyone enters into this family caregiver at home thing with the best of intentions. But no one understands how difficult it is.

Cleaning up a person after they urinate and/or defecate is not pleasant. If you have daughters who would have to do this, it’s really off-putting. Because he has dementia, he may not be very cooperative. My mother was combative. If you don’t understand what dementia does to a person, it makes life miserable.

Do a rethink about this. I understand not wanting to “be stuck in a nursing home”, but your father was being unfair to you when he asked you for that promise.
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Daughter2951 May 28, 2019
I must agree. A family member promised my mother that and now I am the caregiver.
It's been a rough road and now it looks like she'll need to go anyway.
If we could only see in the future!
If I had known my life would not be my own, I would not have offered. Ignorance is not bliss!!
Please do research as to the mental and physical stamina one needs to do this type of care indefinitely.
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OK..so I’m going to add my 2 cents in. My response may not be popular, but like many here, I am going through this sort of thing with my parents.
1. No, it is not fair to expect your children or even yourself to handle cleaning your father, deal with dementia and aftermath of stroke and potential future worse strokes.
2. Bless you for wanting to keep him in his home, but I guarantee you need to look at skilled nursing facilities, because you are not going to be able to handle his needed care, manage his life and yours, and you will grow resentful and angry, as will your sons, of being expected to make huge sacrifices to care for him. Say goodbye to vacations, time off, your own health and well being, and some relationships because you will become engulfed in 24 hour care.
3. If your father was able to tell you, would he want to have his family having to clean him and make these sacrifices?
I have done all I can for my parents, and I have been clear I will not cross a certain line for them. They understand this and have given up the idea that they will leave us kids an inheritance as they will need their money to care for them in their last years.
I wish you peace and love - and you are an angel if you can take this task on.
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Blueransom May 28, 2019
Amen!
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My husband has dementia and is incontinent of urine and stool. I think it is up to each person and family how this is handled. Putting someone in a nursing home or hiring someone is out of reach for some people financially. It is for us. My daughter cares for her dad, changing and cleaning him up when needed, My granddaughter, 17, does the same. And Of course I do most of it. No one asked my daughter or granddaughter to do this. They just do it. No they don't have to lose a job or anything and only come at their own time but they are a huge help to me. Nothing was asked or forced upon them. They asked us to leave our home of 45 years to come live near them so they could help. My 15 yr old grandson helps dress his grandfather, walk him and do other things , has changed a wet diaper but never a messy one. This is all volunteer on their own.
Yes my husband has had terrible anger fits at the 15 yr old but it doesn't deter him. He loves his grandpa and does not understand the disease process but accepts him as he is. I don't think it is too much to ask your sons but the decision should be theirs without pressure or guilt put on them. As I said each family and each person is different. Good luck.
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sandi61 May 28, 2019
Sounds like you have a wonderful wonderful family. I wish I could say I could be that generous but I guess we'll find out when that time comes.
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some times when we ask for a promise in the future, we don’t know what we are asking for....nobody knows the mantainence of dementia unto you are neck deep in it. In other word father didn’t know what he was really asking of his family and now he is not if the right mind to say that he wouldn’t wish this on anyone, much less his loved ones. My mother died of dementia 2 years ago after 20 years of the disease. My husband is diagnosed with moderate/ severe dementia. I feel like I am breaking my back and sacrificing my life for somebody I don’t even know, my husband is no longer in his body...he is gone...some child like being is now in his body that has absolutely no resemblance to my high energy, smart, witty, adventurous, successful, generous, kind husband.
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Hospital did not suggest a trip to rehab to see if he can get his strength back?
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katiekat2009 May 28, 2019
Agree this would be best option. Please don't put this on your children. He could live for ten more years in this condition.
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Admittedly I didn't read through all of the answers so please excuse any repetition. I wanted to address honoring our loved ones wishes. Often, we say things and make requests without thinking through all of the ramifications. I am sure that your father didn't consider the fact that family members might have to perform many intimate tasks such as bathing him and cleaning him up after he went to the bathroom. With dementia, it only becomes worse. I found that with my own mother, I had to do things for her that I never dreamed of doing and it left an indelible memory...not a pleasant one. There were times when she 'messed' herself and it was so bad that I had to enlist the hlep of my husband. I tried to protect him from this as long as I could but when Mom's dementia and condition became so difficult I HAD to get my husband's assistance. Can you imagine how she would have felt about this had she known early on that this would happen?! There were also many times that Mom took off all of her clothes and we had to deal with that too. She, who was always so modest, would have died of the humiliation and embarrassment of having her son in law see her naked. My husband was wonderful about it, but again, if my mother had only had a crystal ball she would have told us to put her into a skilled nursing facility. I say, if someone doesn't want to go into a nursing home, they should start investing in long term health care so they can afford to have someone to assist them at home and forego having a family member do the things that they are ill equipped to do. We give them love and care, but there are things that (for some) are just above and beyond what our loved ones want or expect us to do.
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I am so grateful for all the replies to my situation. I have felt so alone in my worries and quite frankly am astounded that there are so many people that understand what I am going through. Last summer I switched my work schedule to three 13 hour days so that I could be with my dad for 4 days. Quite frankly it was burning me out before he even had the stroke. Trying to maintain my home an hour away and deal with my father on my "days off" showed me I wasn't quite as hardy as I thought. Dad just doesn't seem to realize that he is "off" and the daily struggles of dealing with his dementia were just getting more and trying for me.
My dad has been more of a father to my two 23 year old boys than their real father so I guess that's why when I started looking at care homes my boys volunteered to change their work schedules to help care for him. Before the stroke I didn't see as much as a problem with it, now, it's a game changer. Before I mainly had to deal with the dementia which I think only those who have personally dealt with can understand. Experiencing someone you love turning into this person that you can't recognize is heartbreaking and upsetting.
The nursing staff at the rehab facility he is in currently say he is a fall risk and needs to be in a facility. However he has fallen 3 times while in their care so it's ironic that they are telling me this to dissuade me from caring for him at home.
I have shared all the responses to my post with my sons. We are bringing dad home this Friday and are going to give this a 3 week trial run to see if we can handle this while keeping dad safe and healthy and maintaining our sanity. I am also visiting two highly rated care homes this week just to be prepared should this not work. I've carried so much guilt and worry for the past 6-8 months that at this point I'm finally realizing that I (and my sons) are doing all we can. If this isn't enough then I will do my best to find the best care for dad and hopefully be able to accept my limitations. Thank you to all, it is wonderful to have people who know what you are going through and understand what it does to your life.
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Laurellel May 28, 2019
It appears I was typing at the same time you were (see above). My Dad fell many more times in rehab than he did after bringing him home. He never had UTIs or pneumonia before hospital and rehab, and not since being released from rehab, but had both constantly while bouncing back and forth between hospital and rehab. He was released from the first rehab with a raging UTI (collapsed getting out of car and had to be taken to ER) and from the second with hospital-acquired pneumonia (he had run out of Medicare days at that point and I paid $300/day for a week to keep him in rehab until antibiotics and breathing treatments had supposedly cured the pneumonia, but it was not. Took him to Primary Care Phycisian the day after release and lung X-Ray and blood and sputum tests showed it was not cured. It was cured at home with killer antibiotic and he was spared yet another trip to ER.

Every patient is different. What works for my Dad may not work for yours. My Dad is not suited to nursing home care at present because he has Frontotemporal Dementia and acts out in unacceptable ways when he is cooking a UTI. As UTIs are so prevalent in long-term nursing home care facilities they do not even test for them, let alone treat them, he would have to zombified with deathly psychotropic drugs to even be accepted, so that is simply not an option for us. By the way, the two rehab facilities were the highest-rated in our area. Long-term care in a nursing home might work well for your father.

Edited to add: As for the toileting issue, I thought once that I could simply not do that (helping my mother with that was one thing, but my father? Eww!). No, it is not pleasant, and it does feel really icky at first, especially with an opposite-sex parent, but you can get used to just about anything. It's really no more gross or icky than doing it for a baby -- or for yourself, for that matter. We all pee and poop, after all. Once you get used to it, that is. A Cat Genie (if you only need it for wipes) or a Diaper Genie (if needed for soiled briefs as well) can really cut down on the "ick factor" not to mention the odor and trips to the outside garbage can.
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There is no right or wrong answer that fits every situation. For me I would find it more humiliating for my kids to be tending my bathing and toileting matters than for hired help to do it, at home or in a facility. Changing my diapers and bathing me is not how I would want my kids to remember me.

Should I ever come to realize that I have begun slipping into dementia my intention is to stop taking all meds and cease all medical care so as allow mother nature to take me sooner than might happen were I to continue receiving healthcare. I would rather pass while I still had some dignity than to live on without it. For me not being able to bath and toilet myself would represent a total loss of dignity.
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amilie May 31, 2019
That is exactely how I feel! I tell my kids if this happens to me just put me in the wheelchair and give it a good kick through the nursing home doors and don't look back lol. But in all seriousness, this is also how my grandmother ( who passed at 94 with severe dementia, and my mother (early onset alzheimers) felt. I think it is something that generally creeps on you and somehow doesn't allow you to fully realize to what extent you are slipping mentally. Even my father, who detested nursing homes, believed that he could somehow control who long he could live if he was not able to live the life he wanted. At times he tells me "just let him pass". But this is not something I can do, morally or legally! My boys and I jokingly blame him for our need to care for him - if he hadn't been such a wonderful father and grandfather we would probably not want to do whatever we possibly could for him.
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No. It’s not fair. And, unless you have 6 adult kids who live close by and are willing to help your plan isn’t viable for more than 6 months. I’m sorry. Been There-Done That use an agency and Find a private home with only 3 or 4 residents and an RN CNA etc who will take good care of your father. Offer them what ever he alone can afford. Visit often. Don’t let any relative talk you out of it or try to make you feel guilty. Always Hopeful😊
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