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My Mother in Law has dementia and I am the daily care giver. She wears pull ups but I always know when she has to go #2. Sometimes we sit in the bathroom for half hour waiting for her to go. Trying to avoid her going in a Depends. It's hard to explain to her how to go to the bathroom when she doesn't know or understand what I'm saying. Am I expecting too much? She has had dementia 4 years. It has worsened quite a bit. Advice?

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Caring4ml, I'm sorry to hear that your husband doesn't understand and appreciate what you are doing for his mother and the toll it is taking on you (sounds a lot like some of my siblings). This forum is great for support and if you aren't already participating in a local Alzheimer's support group, I suggest you do that for additional support. My wife and I have participated in three such groups, the best of which helped us in understanding the disease, legalities, caregiving and coping techniques and, maybe most importantly, provided face-to-face empathy and understanding. Also, I'm thinking it might be good to drag your husband along to at least a few of those meetings to broaden his understanding, i.e. to see that what you are doing actually is a big deal. Yes, this disease is a heart-breaking and the tragedy of it is compounded by family members who don't bother to learn the toll it takes on caregivers, let alone provide significant assistance and relief.
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Have you tried a squatty potty? It goes under your feet when you sit on the toilet and puts pressure on the bowel, it helps with total elimination also.

Just thinking about things that might trigger the body to respond when the brain isn't.
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Thanks for the comments. My job has become routine. My husband does not understand the toll it takes on me mentally. But I keep pushing through. He thinks it's no big deal only an hour or two out of my day. I really needed thos forum a place for support. This disease it heart breaking. Living with dementia is NOT LIVING AT ALL. I would never want to prolong my own life with medication to slow things down if I didnt even know who I was.
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lealonnie1 Jan 2020
Your DH needs to spend a week seeing what a 'big deal' it isn't taking care of his mother all day long & calling it an 'hour or two'. I think you need a nice week long vacation to a spa while DH fills in for you. Vacationstogo.com is a great place to find such a vacation for yourself. Alone, or bring a girlfriend. Bliss.
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Interesting dementia seems to take away the "feeling" when one needs to go #2
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Caring4ml, yes, it sounds like your expectations may be wishful thinking at this stage of your mother-in-law's dementia.  I learned to quit trying to explain things to my dad and instead just did what had to be done.  I went with him into the bathroom every time, insisted that he always sit even when he wanted to stand, and then waited with him no matter how long it took.  Having reading material readily available for both him and me was often useful. My dad liked Reader's Digest and National Geographic. Also thought about having a small table and checker board available, but didn't actually do that.

     Like you, I tried to avoid #2 Depends cleanups, but there were times those couldn't be avoided and after the first few dozen or so, even those became routine, certainly so after the first few hundred.

     Kudos to you for being your mother-in-law's primary caregiver.  I hope your husband and all other family members fully appreciate and support your efforts while providing you with a lot of time off and are actively planning for the future when you are likely to become exhausted.  Best wishes.
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So much depends on the type of dementia and even then it's a very personal journey. Most people with a full dementia progression eventually become completely incontinent. My father lived into the advanced stages of vascular dementia without becoming incontinent, but he did like to urinate into water glasses and line them up on the window sill. My mother has MCI will no short term memory left and is basically continent when awake (except for bladder spasm leaks from spinal stenosis), but will wet herself when sleeping.

If you always know when she needs a BM and need to take her to the bathroom, her brain probably has a disconnect. She feels the need to go but doesn't have the connection left to head for the toilet and do her business. I'm not sure if there's anything you can really do to help with that. Maybe someone else on the forum will have some ideas. There are fiber additives or foods you could use to get a more reliable timing on her needs.
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