If there is anything worse than spending 24/7 with Mary, the cantankerous, ungrateful, angry person I caretake, it is doing so without a computer for 2-3 months to connect me to the outside world of the compos mentis. I am finally up and running and am most grateful. I have tried to keep up with others’ daily blogs on the library’s computers, and have been moved by the stories. I do realize that my situation is easier than others’, because there is no emotional attachment. Folks who are watching their spouses, parents or children struggle are pulled so many ways, and have so much investment in every success or setback of their carees.
What I am dealing with primarily is, well, poop management. Mary has declined quite a lot since I first wrote about her, and can do very few ADLs anymore without assistance. I care for the animals, cook dinner, do laundry, etc. and she has actually started letting me do these things without yelling at me that she can do it herself and to get out of her way. The one area she refuses help with is personal care. She has a colostomy and is incontinent. This means she wears pullups (and 2 pairs of undies over those – I understand that the multi-undie syndrome is common to those with dementia). She needs to clean her colostomy bag about twice a day. But if I am not right there, she may decide to just pull it off and use the pullup.
So yesterday evening, I came in from mowing and smelled a heavy urine odor. She had soaked through her pullup. I asked her to change her clothes as I proceeded to strip the couch and put down a fresh pad and sheet there. When I went into the bathroom to check, I saw she had only a pull-up on, and there was you-know-what everywhere, since she had not had her colostomy bag on.
This is where I get into big trouble, because she adamantly refuses to allow me to help her clean up, get her soiled clothes off, put her new bag on, and get dressed. She is yelling at me to get out and shaking her fist in my face. I cannot rip her clothes off; would not do anything that would harm or bruise her, obviously; cannot cajole, humor, or convince her in any way to take her clothes off. In the meantime, she is screaming at me for being “bossy” and telling her what to do, and poop is flying all over. I finally went and got some scissors and proceeded to pretend to start cutting off her sweater. This convinced her to start removing layers (5 tops!) and we eventually got down to the bare Mary. Then we had to fight over my wanting to wash her. The whole process of getting her to bed took over two hours. It just goes on and on, and the episodes are becoming more frequent, as she has colostomy “blowouts” during her increasingly-frequent syncope spells.
I have approached Mary many different ways in regard to assisting with her ADLs - with humor, no-nonsense efficiency and detachment, friendliness, pathos (reminding her that I have to be up at 5 and will she please get ready for bed?). I haven’t found anything that works. I have consulted with the Hospice and Alzheimer’s folks, and they have suggested things I already do (the non-nonsense approach). I know this is not a unique situation and others must have developed ways much more successful than mine for dealing with it. Of course, Mary may be a little different in that her cantankerousness and stubbornness were always a part of her character. That’s why I am here and not one of her children. I really do feel rather inadequate in dealing with these behaviors. As a professional, I dealt successfully with children, including those with developmental disabilities, with these behaviors. Why can’t I do it with Mary?