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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!!

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I completely understand!
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.
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Aha two countries divided by a common language we dont have a difference unless you go to the mobile type commode which are ridiculously flimsy. All our commodes are of the two arm variety - sorry for my helpful (NOT!) comments
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Dear Clong, He's not pulling your leg. He really has a problem. First, why do you use a bedside commode ( flimsy) instead of the bathroom commode? There are two types of potty lifts: 1) Sixteen inch free standing potty lift that goes on and off easily. White.
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.
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Hi Clong I know just how frustrated you must feel. The trouble with dementia is that people with it will often do far more for themsleves when others are around than when it's just you and he. There doesn't seem to be a rational reason for this but nevertheless it seems to be the case and I know just how tiring that frustration can be. My mother complains constantly about her motions but she has an impacted bowel which causes her severe problems. But your problem is not the stool but the attitude of your husband to the commode as far as I can tell. When he says his bedside commode hurts what does he mean by that? Perhaps you may need to try a different size commode or one with a padded seat. Do you have a colleague who is a nurse who would perhaps come and give you a couple off for good behaviour? It would be interesting to see if he would sit on the commode for them...if so then you may need to ask a doctor to step in on your behalf. For some reason my Mum will do everything a doctor tells her but as I clearly know zilch she does nothing for me - so so annoying so so frustrating and ultimately so so tiring.

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
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Try the sixteen-inch potty lift seat that fits over the commode. I love thoe one I have.....master bath only.
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i do have to defend the person who gave advise; the title of the post asks for insight...to me that suggests ideas on how to manage a difficult situation.
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Hope some of our comments gave you some ideas and also support for the challenges and encouragement to find ways to get your rest too. I have one other experience to add, which was my own, last year, and I don't know what caused leaking - the RN said lack of exercise weakens muscles, and something else was related to diet or a bug, and I was busy at the time which meant I would rush off too quickly. I noticed that it was not only troublesome and even gave me a UTI - but I was often anxious and worried about accidents and that disturbed my sleep. It took a month to get rid of the UTI, but it also helped to use thin pads, which were easily disposable to lessen any spills - and actually, once some of my worry lessened, some of the problem went away too, and eventually it disappeared. As always, looking for ways to minimize any issues can help - I hate the way worry adds to difficulties that are already hard, but maybe it does make us really get attentive to seek solutions! Good luck!
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No, he is not pulling your leg. Listen to his complaints. I would walk him slowly to the real potty about twice per day. Since he has the Foley, that should be enough. Does he go in the A. M. or P.M. ? See if you can keep a regular schedule. If he sits on the real potty and doesn't go, lift him off and try again later. I know it must be frustrating for you, and God Bless you. Eventually he'll have to go, or suffer from impacted bowel . He will not want that. Have you tried a mild Dulcolax?
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If you have any adult children they need to be made aware that you could use a little help. Don't demand it of them but do ask. When my mom was ill Dad never once asked for help, if he had even with kids still at home I would have gladly made some time to help,now we hear about our "lack of help" on a constant basis. He himself needs the help now,he is a very angry,demanding 93 yr old.
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!!
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I have a husband similar to yours. I also know, without any doubt, that he is now and always has been an angry man. He has refused counseling in the past. Today, he demands of me to do what he can do for himself and does things that he knows irritate me.(enemas during the night for constitapation, etc) Are you aware that those who are constipated are trying to "control" everyone around them? They can't let go of control and power needs. I accept my "lot" in life as karmic so usually don't say anything. I would place your husband in a nursing home. You would be amazed as how the entire situation would change. You are burning out and when your health deteriorates, who will take care of you?
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The bidets that we're talking about here are sort of specialized toilet seats that are easily installed on your existing toilet. There are also integrated toilet/bidet models which are admittedly more expensive, but you don't need a separate toilet and bidet, which is what you may be thinking is necessary.
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I used to use the baby wipes on my husband too. They are very handy. The flushable ones are not really flushable if you have a septic tank or old narrow plumbing so be a little cautious about disposal. My husband only has a bm about 1-2 times a day with few leaks so I really feel for you. We don't us a catheter and just rely on regular changes for urinary incontinence. I was using a spray bottle of no-rinse perianal cleanser with toilet paper, but I now use a bit of shea butter lotion on toilet paper to help clean him up. He went through an unbelievably horrible case of blistered diaper rash this last summer with a secondary fungal infection. He was so sore that any wiping motion would slough off a layer of skin. That is when I start using the lotion and still do. His bottom looks almost as good as new after two months of anti-fungal meds, moister barriers, vigilant changing and cleansing. I hope you and your husband never has to put up with this.

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.
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If you think that a bidet is not practical (and there are some that don't cost that much), you might try a sitz bath that sits atop the commode, filled with warm water that you then dumb into the commode or nearby bucket for a nice cleanup. You also sound like you are so worn down, worn out and used up that you are lashing out all around. GET SOME RESPITE. Call the county, call senior services in your area. You need to get away from a situation like this, however briefly, to be able to do it well. Hugs, Best, Barbara
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I don't see Jeanne's reply as unpractical or critical - just a beginning effort to think of what might help at the home end of things, and realizing this can be an exhausting situation, whether or not there is a manipulative component in it from your husband. I also focus on the at-home end rather than on MD solutions, after working in home care for 15 years. Clong730, you say, you have "heard of" flushable wipes - which sounds as if you have not tried them? They make a gigantic difference, they clean as if water was involved, even without the mess or drying needed when using water. And maybe you could get a plastic packet of them to leave within reach of your husband, and teach and expect him to reach one and clean himself in bed, and also set up a disposal plastic bag within his reach. It says on the package whether they are flushable or not - so check that. Sometimes the smaller ones are the flushable ones, so if you don't find them, get the Baby ones - it's just for touch up, but might help a lot here. They can be followed up with a piece of dry TP also. I also wonder why he says it hurts to sit on the commode. I find that solving one small issue at a time, can add up to key improvements in a situation - for if he really feels he can't solve it himself, he will ask you more. They make larger commodes; one can tape a cloth or other buffer at the back end of the commode seat, where some of those commode seats can be hard and even have a sharp edge. If you were both sure it didn't hurt him, you could then bargain with him: you will clean him up regularly only if he does his part, which is to sit on the commode twice a day for at least 5 minutes. Sure, some of his requests may be just from a bad habit, but when small issues are not addressed, a person like your husband can assume that he himself cannot fix it, and he may obsesss over it more when he is just lying in bed. For myself, I find it easier to set boundaries that I can continue, if I've spent some time trying to look closely and try to solve each problem that someone complains about. If I've really done that, I can also try setting time limits for me - put ear plugs on for an hour at a time, and then remove them and listen to see if he has managed to wait a bit longer. Your sleep matters a lot!
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I am truly sorry, clong730, that I came across to you as critical and condescending. As caregivers we have enough stress in our lives without going to a support site for more!

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.
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I posted here for some support and maybe a little insight into the problems I encountered as a full time caregiver. I was looking for answers to a problem that was both vexing and frustrating to both me and my husband. I am not sure who you are, or what sort what experience you have had, but I was looking for practical advice. Lets get real, a bidet is not practical. Yes I have heard of flushable wipes and while respite sound very good I and others like me do not have the funds for daily care. If I did I would not be a full time caregiver. His doctor is very aware of the problem, meds have been prescribed and they work only to a certain extent. We have tried a bowel program which is part of what timed toilet sittings is.I am a registered nurse and was practicing as that until my husband's illness, so believe me when I say that I have done everything in my scope of practice to try and remedy this situation. I was not looking for medical help, but some support and a kind word. Criticism veiled by condescension does not help.
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You are human to think he is pulling your leg. You are also probably wrong. Incontinence means you do not get enough warning to do anything about it -- even as quick as get to a bedside commode. Think of the times you have had diarrhea and then imagine that was your daily routine. Yikes! The poor man! The signals from the bowels are just not being picked up/recognized by his demented brain. Definitely not under his control!

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.
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