I have been taking care of my husband for 2 yrs now, he has moderate dementia with a spinal cord injury and stroke. He has a foley catheter and is incontinent of stool. I have tried my best to be patient and but this seems like it is getting worse. the problem is he cant stand to be dirty, but will not sit on the bedside commode says it hurts. He says he cannot tell when he has to go but he complains of pain when he goes, no constipation or hard stool, says he cant tell when he goes but cant stand to feel stool in his butt crack. I change him 6-8 times a day have gone thru piles and piles of creams and suppositories talked to the Dr. Nothing helps . Am i bad to think that maybe he is pulling my leg? That he could do more than he is leading me to believe? Or am I just so frustrated and burnt out that I have used up all my patience. One word in my behalf, when we go out he doesnt complain. We can be out for the day and he will never say a word, also when I am gone out for a while same thing no complaints. I was int the hospital for a night and his grandaughter stayed with him. She said all he did was call me to clean him up. Help!!
Keep doing your best to be patient. To have this problem is bad enough for him, without also dealing with an impatient spouse or caregiver. But goodness! It is bad enough for you, too, isn't it? I hope I don't come across as being critical at all. My husband was only incontinent at the very end of his journey but it was enough for me to see how very physically tiring and emotionally wearing taking care of this can be. Hugs to you, dear lady.
I wonder if a regular schedule of sitting on the toilet or bedside commode would reduce your load any? Especially if you can see a pattern to some of those 6 to 8 times, and he sat for 10 minutes at 10 am and 1 pm and 4 pm, (or whatever). This would mean figuring out why it hurts to sit there and solving that problem. And it might not even work. But MAYBE it would be worth a try for a week or two.
My husband also needed to be very clean or he'd be uncomfortable. Actually, with hemroids I can empathize with that. Few of us could stand to be dirty there. Helping him get thoroughly clean each time is important. Installing a bidet in the toilet he uses might help some. I'm sure you use the flushable wet wipes, and that can help with thorough cleaning. But if his bowels move often or if he "leaks" then frequent cleaning is just necessary.
Also discuss with his doctor the possible use of anti-diarrhea pills, to reduce the frequency of movements. My husband's doctor recommended he take 2 before any outing. While he was not incontinent, he sometimes had accidents when the bathroom was farther away then it was at home, and these pills greatly reduced the accident problem when he was out. Don't do it on my recommendation -- but ask his doctor.
The other thing I strongly suggest is to get some respite. Have help come in each day. Whether you stay home and work on a hobby or go out to a movie or shopping or for coffee for friends, having a regular schedule of times you are not responsible for your husband's needs can go a long way toward reducing your impatience and frustration. Don't try to do it all alone!
Best wishes to you and to your husband as well.
I don't see anything about your background in your profile or in your question. If you had said you were a nurse and have worked with his doctor on this issue and what you have already tried I probably would have written my response differently. I did not mean to be condescending.
If you would like to know more about a poster, you can click on their name and be taken to their profile page. For example you would see that I have posted more than 3000 answers and 1000 comments here, and that most people seem to like my answers.(3500 "helpful" answers and 700+ "likes") I very seldom find it appropriate to be critical, but when I do the criticism is not veiled!
My husband had dementia from June of 2003 until his death in November 2012. He also had chf, gout, and a-fib. I cared for him full time the first year, then continued to care for him while working from home. I had respite in the form of sending him to an adult day program a couple days of week, and then later having a health aide come to the home. I went to a caregivers' support group once a month (and still do) and read books and went to conferences on the type of dementia he had and on caregiving. I am a computer professional and have no medical training.
I did get a bidet (on the advice of other caregivers) for about $45 on Amazon, and installed it in the toilet most used by my husband. It did not make the cleanup problems disappear but it was helpful. So I thought suggesting a bidet was real and was practical. Sorry.
I am sorry that you found my advice not only useless but also offensive. That was certainly never my intention.
So I have just resigned myself to about 6-8 changes per day. It can be very frustrating and I do feel for you. Even when he was walking well, his dementia interfered with his interpreting his body's signals and he wouldn't even try to have a bm in the toilet. He would be walking around with a mess in his pants showing no concern whatever, kind of like a 1 year-old. Really bad when he would sit down.
As to respite care, if your husband is a veteran he is eligible for aid with personal care (3 times per week for 2 hrs) and respite 30 days per year (up to 6 hrs). You need to contact the nearest VA clinic, find his DD-214 (discharge papers) and get him in their medical care system. We go there for everything except his neurologist. Besides the caregiver services, they got him a new customized wheelchair, a Hoyer lift, and a bedside commode to be used as a shower chair. You will need to ask for the respite and personal care if they don't just offer it. He gets all his meds from them except for one from his neurologist.
I would also keep with the "baby Type" wipes as they can sting when used on a raw bottom,my Dad will use those grudgingly-he's so germaphobic that he won't let his feet touch the bare floor or god forbid when slipping on the depends his foot touches an area where his Scrotum would !!!His greatest fear is Fungas attacking the private parts....It took us 2 yrs to get himto use Depends,there is a stain trail to the bathroom +bedroom comode.
Speaking of commode, he to complains of it cutting or hurting his but in the back-we put tape over that sharpish edge-I like the idea suggested earlier of cloth over .
it.
Please do check with the Dr on writing a prescription for in home care and check your local agencies to get some help.What is your ages?
Come on here and Rant etc all you want most of us understand.
I can actually look back on some of the things that have vexed me at times and get a bit of humor with them,at the moment they happened I would have chopped someones head off!!
Being in the Nursing profession,you have a wealth of avenues to ask for who can help you-social services for one where you used to work-give them a call asap
You are doing all the right things for your husband,but remember yourself also.
Huggs to you!!
As for the pain on passing a motion I am assuming the doctor has checked him out for anal fissure and haemmoroids, if not do you think a colonoscopy might find anything or has he already had one? Do try and get as much rest as you can as yo uneed all the strength to manage your husband and god bless sweetheart xx
2) A potty lift that is " installed" with two handrails. Both of these can be found at Walgreens, and on the first Tuesday of the month, there is a senior discount for med equipment. Unfortunately, someone has to wipe him after his B.M.
My MIL (dementia) has been living with me for 2 years. She is now totally bedbound and on hospice for over a year. It often seems as if she is manipulating me and...............I think it is sometimes on purpose. Totally? No. But........ I'll give you an example: She likes to swear and it always bothers me. One day I finally said "Betty, this is my house and the rule is no swearing allowed. You will not swear in my house." She got angry and pouted but the swearing stopped for days. When it starts again, I state the rule again. It helps me to feel like I have some kind of say in my own house.
Your dear husband leans on you and obviously knows that you love him so he wants you to "fix things" and to be constantly by his side............. exhausting.
In my experience, issues (like poop anxiety) eventually go away so be encouraged that he is going through a phase and it will slowly evolve into something else.
I don't think there is a solution. What you truly need is encouragement - you are stuck need to know that you are not alone.
My MIL's temperament fluctuates but generally she is rude to me and nice to visitors. That is not because I am a bad caregiver. I am a really nice person but this caregiving is grueling and feels like it will go on forever. Suffice it to say that your hunch that your husband is seeking extra attention from you has merit and it is not wrong for you to feel like there is no answer.
BTW - I acknowledge the big difference: you are caring for your dear husband and I am caring for MIL. But to validate my experience please know that I nursed my wonderful husband through a long, extremely painful cancer battle. I adored him soooooooooooo much but I was still exhausted and often lonely as the caregiver. It is a marathon for both you and your husband and you are not alone in feeling that way.