Alzheimer`s Disease/toileting with alzheimers
My mother is probably at mid-stage AD. I see her about every 60 days or so. She is at home with my father. Since the summer, she is getting nearly obsessed with being on the toilet (hours at a time) and is afraid of wetting herself, etc. I am not aware of any accidents. She wears a panty liner and a wad of toilet paper in her panties just in case she has an accident (her ideas). My father has actually taken her to urologist for testing to determine nothing physically is wrong with her (there is not). She does not drink excessive fluids (she is at the point that you have to give her food/drink she does not get on her own). Do you think this is a sign that she actually does have accidents or is it nerve/tic like some of the other behaviors she has picked up? For my part, I try to distract her with "come on out, I have a cookie" to singing songs as I stay outside the bathroom waiting for her to work through the "issue." My father is not nearly as patient and there is a lot of yelling and denying her feelings. She will get weepy saying "what is wrong with me" and it's all very sad/trying. My questions are: 1) is this a "normal AD" behavior? 2) is this a sign of impending incontinence? 3) would behavior end if we had her on depends? Thank you.
Hello Karen: I'm so sorry to hear of your mother's very troubling fears. I can see where this would greatly impact everyone's quality of life. My first thoughts when reading this were that she may actually have a bit of irritation in the urethral area--just a little bit that wouldn't even cause redness. Women often get urinary symptoms when the estrogen starts to go down and a very small dose of estrogen cream applied to the outside of the labia can do wonders for that. My suggestion would be to take her to her gynecologist.
Just about any behavior can be "normal" for an elder with dementia because they are all so different. She may be fixated on the urinary issue for a number of reasons, but it's important to be sure it's not something that could be fixed like with the estrogen cream. I would hope the urologist tested her to see if she was emptying her bladder completely, because if she is not, that could make her feel like she has to go often. She could also be having some type of spasms that cause her to feel like she has to go. A caring, competent gynecologist may be the best one to answer those questions. If she actually responds to some type of cajoling to get her out of the bathroom, then your father needs to figure out what those are, and employ them. His frustration will only make her worse.
It might be helpful to get rid of all her underwear and just have pull-ups for her to wear--it's really hard to know how she will react to that, but it could be worth a try.
As far as "impending incontinence" it's pretty much a given that she will, as the brain damage progresses, become incontinent, but there isn't usually any warning of that aside from occasional incontinence becoming total incontinence. A toileting schedule can help keep an elder with dementia continent longer.
I would suggest you and your family join a caregiver support group in order to help all of you cope better. Along with that, reading books about how to interact more effectively with a loved one with dementia could be very helpful to your father--and in turn, that would make your mother's life easier as well. I suggest my first book "Love, Laughter, & Mayhem - Caregiver Survival Manual For Living With A Person With Dementia. It's written in story format so it's a very easy read and contains a lot of great tips that would be beneficial to all of you. If the stress of caregiving is becoming too much for your father, then he should start to consider placing her in a facility so that he can once again be a husband and companion to her rather than the sole caregiver. I wish you luck Karen as you struggle to cope with these issues. Cindy