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My dad has vascular dementia and his cognitive impairment is mild. Not much of a short term memory but fully functional and independent with all ADLs. Months ago we started noticing leaky bladder issues. His neurologist said it can be a side effect of VD. His urologist said enlarged prostate. He had surgery and wore Depends as he recovered. Now, 6 months later, it is almost like he has decided it's easier to wear the diapers than physically go to the bathroom so he is fully incontinent- urinary and fecal.
His cognitive impairment doesn't match this. In other words, he is really "with it" in all ways but it's like a switch has turned off with respect to the bathroom. When my mom or I try to talk to him about it he gets very defensive. He just flat out will not go to the bathroom and only urinates and defecates in Depends. It is a literal and metaphorical MESS. And it's way more than my 78 year old mom can deal with.
Has anyone experienced this before? And also what kind of outside care would even deal with this?
I hope others chime in with experience involving incontinence coming much sooner than expected. I just wanted to say that it is extremely common with dementia, and people who work in the field are very used to it. A CNA or home health aide who says they do care for PWD should be expecting to help with toileting and changing Depends. That is a totally normal expectation, just make sure you communicate up front what his needs are to make sure you get the right match. Whether from care.com or an agency or whatever, it would be par for the course. The people who work in my mom's facility do it all day long. They try to keep people on a two hour toileting schedule, but even still they deal with a lot of soiled diapers. And eventually people become wheel chair or bed bound and simply can't use the toilet. Nearly everyone with dementia becomes incontinent at some point. My mother was able to dress herself, brush her teeth, cut her food up, and do most other stuff when she became incontinent. She still bathed herself, although not very well. There isn't a one size fits all trajectory for symptoms.
I would suggest trying to re-think and re-frame the conversations and actions around trying to get him on the toilet. Make it positive, don't accuse or argue. Don't point out it's been a long time or argue facts when he says he doesn't need to go. Just stay upbeat. Give him a back rub, get into a good groove for a minute, and then gently say you're going to help him to the bathroom now. Let's just see if you need to go, and then we'll have a treat. Bribe with something sweet after. Some PWD have a very hard time allowing a child or spouse to help with this intimate stuff and do better with an outsider or hired help. My mother would not allow my dad to help her in the shower. We were at our wits end but it turned out she had no problem with a CNA at her daycare doing it. We were so surprised after our struggles.
And remember he has dementia so you really can't blame him. Just because a urologist thought surgery was a good option doesn't necessarily mean it isn't just a symptom of his dementia. There may not be much you can do about it. It's best to remind yourself he can't help it, none of it is willful. It's the diseased brain making him unable to be continent, whether the rest of his symptoms seem bad or not. What normal adult would want to sit in their own feces? Of course it's the product of a compromised mind. There are so many little things that may be contributing to this. His signal to the brain that he needs to go not getting through. The steps involved in undoing belts and buttons and the "right" way to go may be overwhelming. Some people end up going in a trash can or potted plant because they simply confused.
Incontinence is extremely exhausting, especially for someone your mom's age. It's basically the reason we had to move my mom to a facility. My father (in his 80s) just couldn't keep up with cleaning her and the bathroom multiple times a day. Very physical work. The mess was incredible. I would form a plan and a plan b for if this gets to be too much. Perhaps start with brining in a CNA trained in dementia care a few times a week to give her a break. And/or look into adult daycare because most would be equipped to handle incontinence and that would give your mom respite. And given what you have shared, I would also tour and have a plan for memory care facility just in case and be on waiting lists. My father totally hit a wall and we had to move mom quickly. It's better to be over prepared than under. Good luck and stay in touch.
Just a second to what Minn Chickadee said. All agencies and pro caregivers are accustomed to dealing with incontinence, it’s part of the job. Sometimes a trained outsider can deal with it better than family. But few people can afford such an aide at home 24/7 to deal with it.
And yes, cleaning up afterwards is extremely physically hard. I can’t imagine how a 78-yo woman has dealt with it very long.
I might differ—but not strongly—on the deliberate part. I am convinced that a family member with dementia deliberately soiled herself and surroundings when she got upset or angry with others. She’d say she was going to do it, and she did, and laughed about the target having to deal with it. But that’s another story...
Vascular Dementia, (VD), can bring some interesting dynamics. MN Chickadee gave some excellent input. Since your husband seems to be doing this willfully rather than having "accidents," there may be another point that you would want to have looked into.
In VD as well as other dementias, there is the problem of "delusions," that is; rigid false beliefs that are as real to our Loved One (LO) as the chair you are sitting on. One cannot argue the delusion away; it is the LOs reality. Your husband may have a silent delusion regarding his elimination and/or the bathroom and/or toilet.
If he does have a delusion that he has not shared, or that he may not be fully conscious of, this may play a part in what is happening. The urinary incontinence can be partly explained by the prostatee issue as incontinence can happen with that; sometimes the urge to void comes suddenly and mightily without time to make it to the bathroom; however, the stool incontinence is another thing since chronic diarrhea has not been mentioned.
If there is a delusional component to this issue, then his dementia specialist can assess for that and there is medication that can assist in quelling delusional thinking.
I send best wishes to you; I can well understand how difficult this is. Let us know how you are, we care.