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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?

I will agree that it can be a difficult process to clean someone. Training is important.
The talk with the case manager is important. If you can get him into rehab for a short time it can and will help everybody. They can teach you as well as him.

There is also a specific tool made to help people wipe. You may have to ask the therapist about this. It is not standard equipment. It can make a big difference.

You would then be left with only a wash up after, while wearing gloves. Anti-bacterial soap and a wash cloth was all I ever used on DW, Luz, and we had no problems with infections.

Many wipes contain a lotion to help prevent other irritating conditions back there. We used them as well.

The bidet would be a great addition to cleansing.

Good luck in what ever you decide.
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Reply to OldSailor
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My father has passed on. I wanted to say to the community that my children and I whole heartedly agree that we did the right thing. Dad wasn't what you would call a "easy" person to care for, his independent personality shone through til the end. But even though it got exhausting, upsetting, and truth be told unpleasant at times, we are happy we chose to care for Dad. My boys adapted quickly to the unpleasant aspects of caring and cleaning. We learned quickly what had to be done, how to do it, and took care of Dad's needs. My boys are returning to college in the fall so if dad hadn't passed we would have needed to make alternative arrangements for his care, but we were prepared to help as long as we could. I suggest hiring someone with experience, (in our case a nurses aide with many years experience) to come into the home and show you the best way of bathing, dressing, and cleaning up after brief changes. After Dad had another stroke his care became more skilled so we brought in a RN to show us proper moving techniques, feeding tips and basic monitoring. Would we do it again? Absolutely. There are no regrets here. I will forever know that we did all we could for a man that deserved our love and care. We did need help - and it took money and a great deal of looking to find the right people to fill that need.
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Llamalover47 Jul 10, 2019
So sorry for your loss. Big Hugs. ((( )))
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You can install a bidet on the toilet for under $30. Amazon has many for sale and they are really very easy to self install. While they don't stop your father from needing help, it is very useful and hygienic for the carer and makes an unpleasant job a little easier.
We have them on every toilet in our house, it's SO much better than toilet paper.
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I have C dif will they help with home care?
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Ahmijoy Jun 11, 2019
Rebecca, don’t know why you posted this as a comment on this unrelated thread. I answered your other post. Finding someone to care for you at home will be very difficult if not impossible. As I asked before,why aren’t you in the hospital, under quarantine and on antibiotics?
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BikerBob: Thank you. And I agree that a man would want a man to tend to his bathroom issues, et al.
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So you and the grown children have already discussed sharing of 24 hr duties caring for gr'pa. Any grown person would know you have to clean yourself after using the toilet. The big question is going to be how many of these people will actually agree to do it. More than likely you are going to lose at least 1 volunteer from your list of relatives.

To make sure everyone completely understands what will be involved - talk about it. Maybe hiring a home health person on day 1 and 2 of the first time each of them will do their duty. (Be specific with nurse that everyone needs to know how to clean him up. ) At the end of Day 1/2, I'm sure they will tell you if it's more than they can handle.
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We installed a small bidet on our existing toilet for personal care. When hooked up to hot and cold water it delivers a stream on water on the area from the back and makes clean up easier. It is not that expensive ($100 to $200) and relatively easy to install. Also you could hook up a spray to the sink faucet and keep some clean towels handy.
Your children will be better people in the long run if they are able to provide care to someone they love. Not pleasant but good for the soul.
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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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My spouse had a stroke in late 2011 and returned home in mid 2012 with left-side hemiparesis. He is now enrolled in a PACE program, a national entity which is dually-funded by Medicare and Medicaid. It serves people aged 55 and over who are clinically eligible for a skilled nursing facility (nursing home) due to inability to perform the requisite number of ADLs (activities of daily living). That means I've got him home before and after the PACE program hours. He is not medically incontinent, (meaning an uncontrolled urination or defecation) but due to his physical impairment he can't just get up and get to the bathroom by himself. What we do is to put cotton- and water-resistant bedpads underneath him in bed, and use Depends (I'm a regular coupon-user at our region's most dominant pharmacy). But the critical thing is that when he feels the need to urinate, he tells me (we share the bed and I'm a light sleeper), and I get up and provide him the urinal, then get up and go dump it in the toilet. This doesn't do much for my ability to sleep but the benefit to him is worth it in my view... no UTIs and no skin irritation from wet briefs. When he has a BM, I spot-wash him afterward, give him plenty of powder and a fresh brief. It's important psychologically for those dependent on others to know that they will get the help and care they need. Admittedly, pain in the neck for the caregiver but if one is able to deliver the care, it means so much for the recipient.
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Either the sons could help or a male nurse aide coming in when deemed necessary.
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BikerBob May 30, 2019
Good point. Because most men have been socialized to make believe it doesn't embarrass them, women generally make believe it isn't an issue. It is bad enough to reach the point where you can't handle all of your bathing and toileting needs yourself, but to be tended in this manner by daughters or female aides is nothing short of humiliating for many men even if they suffer it in silence without complaint.
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It's up to them, but it really isn't their responsibility to have to do that. That is a bit excessive. One option is to get as much outside help as you can if you feel you must keep him at home. Then you would at least be limiting some of the burden. But frankly, this is burden enough for children, too much to ask of grandchildren.
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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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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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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 31, 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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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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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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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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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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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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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 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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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 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 28, 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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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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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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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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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 28, 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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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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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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