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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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Hospital did not suggest a trip to rehab to see if he can get his strength back?
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katiekat2009 May 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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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 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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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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Hi Amilie,

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.
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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 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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Rather than ‘ask’ your sons to clean up grandpa, it would make sense to talk to them about it and see how they feel. Some people are squeamish, some are not. If they can cope, it could be best to get him to his home for a couple of weeks, then sit down with everyone to look at the long term. If your team can’t cope, then it is not his decision. He will need care, and the economics say that it should be in facility where there is a realistic team to cope around the clock. In home care with three shifts of paid workers to look after one person (plus the weekends) is not financially possible for most ordinary families. Best wishes.
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Would he be able to use a bidet? They have portable ones you can attach to your toilet with little effort. You said the nurse told you he would need moderate help. Is he in diapers/depends? Is he capable of wiping the bulk of it off and someone come in for the finishing touches? It is a humiliating situation for all. I am thankful it didn't get that far with my brother. He's in a nursing home now, but is still able to take care of his business himself. By some miracle he is agreeable to showering daily. I am still not sure how they redirected him to do this, but it also helps any residue left behind on the behind...lol One big thing to watch for are sores or rashes.
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.
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You need to sit down with your sons and talk this through with them not us. Of course you can ask them, but what is their attitude to this and to giving care in general. Its great you want to honour your father's wishes, but how this is done needs to be a family decision, he is their grandfather but he is not their father so their views and willingness may be different to yours.
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For me, I would never ask or suggest my kids help with this.
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Amilie, you have not been back, so I am not sure if you are reading the replies.

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.
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If he has the finances, don’t be so quick to discount an assisted living facility. So many picture them as horrible places but the reality isn’t true any longer. So much has been learned about dementia and a good facility will be up on socialization that helps dementia sufferers mentally and physically. There is more involved than wiping someone’s rear end to really help them live a productive life as long as possible.
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.
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Another option is you could have a caregiver for half a day at your home. Just watch them and allow them to train you.. how to clean, etc., assist with daily care. That’s how I learned. Your boys might need to help be made aware that they will need to know what to do.,etc., Great idea before..would try to allow dad to rehab at a good nursing home (with physical therapy) to gain strength- & there you will see some exercises and strategies to maintain his strength, assist and pivot, etc. Talk to his Dr., and have this arranged. This way, you will have extra time and have a chance to see/ know what you will need to do at home. I talked with physical therapists there to gain insight ..& asked questions on how best to handle things. Also, you can see him during the day and see how he performs daily living tasks for himself. This will give you a better picture for how he is/what improvements can be made. Best wishes and may the Lord bless you for wanting to honor your dad’s wishes. I kept both parents at home, as I wanted to honor their wishes as well. It was difficult but workable. If you choose this route, you will need help- other than just yourself.. possibly a caregiver in place. We cannot do these things on our own.
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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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Going to the bathroom is a normal function. What comes out is really processed food we ate. It is "the dregs" of what remains from our food.

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.
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Both of my parents needed care with their hygiene. My momma has since passed but she was grateful every day that family were there to help her. She, like my Dad, are very modest people and having some stranger cleaning them up after going to the bathroom was humiliating.

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.
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thepianist May 2019
I know what you mean! This level of neglect is in fact abuse and should be re ported to your county ombudsman.
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Have a bidet installed on his toilet. You can buy one on Amazon and it’s easy to install. Maybe one of your sons can install it. Or get a handyman or plumber. Totally worth it!
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We put a bidet toilet seat in for my mom. We had to press the button controlling the water because she could not remember, but this helped a lot.
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Cleaning a parent with incontinence can be unpleasant. This is how I handle it with my mother who has pretty severe dementia (she's now losing word comprehension). My daughter attached a portable bidet that my mother hates but it's there when needed. We just have to remove the toilet riser (but I got one that just lifts out, along with portable grab bars that fit around the toilet). I have her sit on the toilet & we pull off her pants & soiled depends. I found a large diaper pail we use. Then I say feet up & I put on a fresh pair of powdered "undies" then feet up again for new pants. The hard part is she doesn't always remember how to wipe. That's where the bidet comes in handy but the toilet riser has to be already removed for that. I'm going to have to hire a daily caregiver & also use nursing home daycare. They have a whirlpool tub if my mom will let them. Hygeine is the worst part so far for me. But changing while she sits on the toilet has been easy.
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I am new to AgingCare and have received comfort just knowing others face the same issues I do with their parents. However, I notice a wide range of varied advice. Some pertains to my situation, some never could. The truth is hygiene issues are embarrassing, unsanitary, unhealthy, and disgusting to deal with. Yes, I do love my mother!  But she leaves messes in the bathroom, gets poop on the rug, steps in it and tracks it thru the apartment, has poop on her clothes and refuses to change denying all of it. She also hangs her dirty clothes back in the closet every night, spreading urinary and fecal bacteria along with germs from spilled food to everything in the closet, refuses to put anything in the dirty laundry including wash rags and towels, and becomes irate when I go thru her closet trying to figure out what needs to be washed. All this goes on in an assisted living complex where my father lives with her! My dad does the best he can but he is 88 and she fights with him. The staff cannot be in their apartment 24/7 and having someone "check her diaper" every few hours is insanely expensive, not to mention belittling for her. I have yet to find an answer and I know things are only going to get worse. My grandmother and my aunt both had dementia. The best advise I ever got was do your best but don't let this interfere with your life or your family. By the time I took this advice to heart I was already frustrated, drained, depressed, consumed with guilt, and exhausted. Enlist help from everyone you can (doctors, social workers, trained staff, assisted living centers, home health attendants...) Give yourself and your family as much breathing room as possible. If not, your father will become a burden you will soon resent and you will become his nursemaid instead of his daughter.
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sandi61 May 2019
My heart goes out to you BlackAngel. Every time I have complaints about my inlaws I just read a few of the messages on here and then thank my lucky stars that our life isn't quite that stressful - yet! Good luck to you.
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Bidet toilet seat. Automatic or hand spray.

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.
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I proudly took care of my grandmothers, helped my dad with a catheter, took care of all personal hygiene with both my parents. My young children stepped up to help, when needed. Sometimes it takes a village.

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.
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I am so sorry for your dilemma.....  I can understand what you are dealing with, and while (provided the family dynamic is in place with your children's relationship with your father), it is commendable for them to contribute to his care if they are able.  However, when it comes to extreme measures such as toileting, etc., I would not ask my children to do this, nor do I necessarily want to.  You are right, you cannot call a health care aid over every time he needs help with going to the bathroom....  Maybe you already have, but if not, I would call your local area Council on Aging, etc., and see if they have any suggestions.  If you wish to keep his wishes, and keep him in his own home full time, it may become necessary for someone to be there all of the time with him.  A BIG sacrifice for the entire family for sure.
God Bless and hope you come up with an acceptable, workable solution.
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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 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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First, meet with his case manager at the hospital to see if they will recommend release to a rehab facility where he will get physical and occupational therapy. It is possible he may be able to improve. Attend some of his OT and PT sessions and learn all you can from the therapists -- they can give you invaluable tips and advice for how to set things up and deal with his needs when he returns home, too. This will also give you more time to prepare for his homecoming, to put necessary equipment in place, etc. You can learn much from the nurses and CNAs at the rehab facility as well.

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!
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Amilie, you're getting some good sound advice here. I wish you the best. Have a family discussion with your children explaining what's involved in caring for their grandfather and let them know that whatever their feelings on this are, you will respect them and understand their decision. Not everyone is capable of caregiving.
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!
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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 2019
Amen!
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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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I hate to say it, but unless you (your father) can afford high quality personalized care, a nursing home is the last place I would place a loved one - especially with dementia. Although there is memory care facilities- I don’t think they’re any better.

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.
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sondraO May 2019
How do I go about getting Medicare to pay for a few hours a day? Is this state by state or every where?

Sondra
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Yes, let your sons know that part of providing 24 hour care means helping with potty. They probably already know this. Tell them how that works - have a plan for what to do and how to do it.

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.
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When Luz was last discharged from rehab I did request an aide to come by twice a week to ensure she was completely cleaned from top to bottom. The aid even blow dried her hair and dressed her. I completed the process by telling her how nice she smelled and looked. Luz did not resist but she did express some discomfort. I bathed her the rest of the week when changing her underwear.
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