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?
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.
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.
You didn't mention do you work outside of the home? Do your children? I can only add to the good advice you have already gotten. Taking care of a loved one at home is very hard, especially when it comes to toilet/showering. I can tell you, especially with the dementia, your father's needs are only going to get worse.
See how it goes for a week or two and then maybe readdress the situation. Maybe you could hire caregivers to help out for a shift or two so you could break up the time a little.
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.
Good luck. This site has helped me with a lot of situations. I hope you get some peace of mind with all the advice. At least you can see other options available.
My Dad is 90, his 6 grandchildren range from 7-33, with 5 being under 23. The eldest 2 are my sons. There is no way my sons could manage personal care for their grandfather.
Oh, Dad had a massive stroke 4 years ago, he had months of rehab and made a remarkable recovery. He spends his summers at the cottage and my younger son stays with him. Why? It is in a rural area, the neighbours are more than a shout away and Dad is getting weaker and less steady. Dad needs daily check ins to make sure he is up and about.
Dad manages his shopping and most meal prep, but it is a day trip from the cottage to town, so my son accompanies Dad to help when Dad tired and do the bulk of the driving.
Dad knows that I will not provide any help with toileting. That is one of the lines in the sand. I would never expect the kids to either.
My mother threw a fit but none of us could care for her( more her mental health) but now she is happy there, as much as she pretends she isn’t. She has friends her own age, activities she can handle and is in a safe environment with professional care. We couldn’t have provided any of that for her.
I had to clean my mother once, my father once and my DH too many times to count. Looking at it as the waste end-product of food helped me deal with it. My BIL had to change and clean his grandmother after school - it's not dirty, it's part of life and living.
If you can change a baby, you can also change/clean up a parent, grandparent, loved one, anyone.
For the squeamish, use gloves. Personally, I never used the gloves because I felt it sent the wrong message to the person I was helping. I only used gloves if there was danger of infection to either of us.
With all the information and news available today regarding Nursing Homes and their, at best, slipshod care I would do everything I could to keep him out of those places. I know first hand how terrible nursing homes can be...one of many stories comes to mind with my Dad during rehab. One of the "CNAs" (what a joke) helping him to walk to the bathroom then sitting on the toilet. Very hard toilet seat , kept pressing his pendant....sat on that toilet for 24 minutes...24 minutes at 97 years old with mild dementia. He became upset and was crying when I came in still sitting on the toilet. Got him up, cleaned up and back to him recliner in the room....aide never came. I went to ask what was going on and there they are all gathered at the desk kibitzing with call lights blinking on both sides of the hallway.
I would do everything you can to keep him with family. Talk to your children about their Grandfather...he needs them and you.
We also use sopping terry washcloths, after use dropped into a bucket with bleach water to launder later. Use restaurant standards. If you can smell the chlorine, it is too strong.
We draw a wet cloth, holding by corners, across both groins front to back.
We have been doing this for years. I recently had a stay in the hospital and was forced to use wipes until I argued for a stack of terry washcloths.
I experienced the difference first hand.
Wipes smear, spread bacteria and chemicals across the skin,
Wipes are slippery to handle.
Wipes are bad for the environment.
Wet terry cloths are less invasive more efficient.
It may be harder for your dad than whoever is caregiving. Just reassure him by saying things like, “Doesn’t it feel wonderful to be fresh and clean?” Tell them to keep a smile on their face, and keep telling your Dad how happy you all are to be with him.
Mom used to cry when she had problems because she felt inept and worried that she was causing extra work. I just reminded her I was so grateful to be with her. I would give her a long hug when we were done. I would spritz her with her favorite scent. Massage her clean hands with lotion.
The love outweighs any burden. You are teaching your children even more about love through asking them to share in this experience. My children never complained. They actually even said they were grateful to have had the opportunity to help.
God Bless and hope you come up with an acceptable, workable solution.
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.
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.
Upon release from rehab, he should get home health care (Medicare pays), including physical and occupational therapy, and a CNA to come in twice weekly to give him a shower, also possibly weekly visits from an RN. These will also give you valuable advice on many practical matters like what special equipment is needed, how to best arrange furniture, how to perform necessary tasks or the best ways to direct him to perform them himself.
If the hospital will not recommend rehab, they should at least recommend home health care. If not, his primary care physician can order it.
The physical and occupational therapists can assess what particular deficits he has and how to overcome them with therapy and/or through assistance and physical aids. For example, my Dad was having trouble with spatial awareness after a mini-stroke, so the occupational therapist used red tape on his walker and the bed assist rail so he could correctly line up the walker and sit down on the bed safely. Ditto with red tape along the edge of the walk-in shower so he knew to step over it instead of tripping over it. Truly, a good occupational therapist can be a real life-saver in so many ways -- for patient and for caregivers!
Please, don't feel guilty, let your dad know you love him and you will be there for him, but the physical part you need the help of perfessional's, because you want him to have the best care. God bless you, and give you strength and courage. Hugs to you!
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.
Medicare does allow so many hours a week for in-home care. Assistance with daily living activities. Perhaps they can at least give him a bath once a day.
Hygiene in older people is challenging on its own. It’s a constant fight with my mom to bathe and she needs assistance getting clean after a bm.
Sondra
You don’t need to “ask” them - they will tell you if they can’t take it. I think for most of us who want to care for family do reach the point of recognition that “they changed me, so I can return the favor.”
You clearly have a loving family, and family knows that things are hard sometimes. Yes, sacrifices will have to be made, but just make them, for as long as you are able. Life isn’t meant to be easy, and potty issues become trivial when it comes down to how your father spends what may be his final moments. Risk to safety is something that warrants consideration of a home - not risk of being grossed out. They can handle it. Just trust them. You’re not doing anyone any favors by protecting them from reality. Caregiving is an act of love - you’d be surprised what you can overcome to do it. Do what you can, for as long as you can.