My husband is incontinent and can't stand to be dirty, but will not sit on the commode. I need some insight.

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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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