Mary’s B-A-A-C-K!

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?

9 thoughts on “Mary’s B-A-A-C-K!

  1. Karoline

    Probably she needs to see her children or her children need to visit her. It may make a difference and her less cranky and angry. I’m not really an expert so I’m not sure if it’ll work!

    Reply
  2. Avatar of KristinKristin Post author

    Thanks for your input. Her kids visit at least weekly and are pretty much ignored. Mary has been angry, controlling and completely lacking in self insight at least all her adult life. This is her basic personality. No one quite knows what her childhood was like, but it must have been a doozy. Her mother was really out there.

  3. Avatar of DeniseDenise

    Hi Kristin–I read your post this morning and have been thinking about it ever since. I think there’s a difference in being a professional who offers support and counseling and being a individual responsible for care. When we’re responsible for care, there’s something about that responsibility (really, pressure) that makes challenging situations that much harder. I think, when we’re faced with poop on our caree, we think: I’ve got to get this clean! What would anyone think if they saw my caree covered with poop! The pressure gets us flustered even before we face an uncooperative caree. We so want to manage the responsibility well…

    I think you are doing really well under such trying situations. Honestly, I can’t think of how you can manage it better. It takes time and patience to un-do the damage of a poopy situation. You gave the situation the time and patience needed. I think that’s terrific. :)

    Reply
  4. Bette

    Hi Kristin,
    Mary and her family are sooo fortunate to have you. What you are doing is beyond wonderful.

    We have had some personal care issues here as well. Often my schedule is forced to take all into consideration. Such a small, one syllable word can wreak such havoc! Thank you for sharing–there is power in numbers that is for sure.

    “Inadequacy” should never enter your thoughts–your perseverance is an example to me. I hope somehow you are able to find a little time for you–I continue to learn how mandatory that is in caregiving.

    Take Care Kristin. Thinking of you.

    Reply
  5. Trish

    Hi, Kristin. So glad you are back online! You are an amazing person to be able to perservere through all that Mary puts you through. I think many, many people would have given up by now. It’s great that you’ve tried so many different approaches. I think your last sentence holds a clue into what might work. You were successful in dealing with this before, in your professional life. Is there something you did differently then? Is it possible you just had the confidence in your professional skills that you were able to take care of the mess? I recently went to a seminar (oddly, a management seminar, not a caregiving one) and heard the term “mirror neurons” which has fascinated me since. Since then, I’ve only been able to think about how it might apply to caregiving. What does our caree sense from us? I wish I had an easy answer. The no-nonsense approach works for Robert (most of the time). He does get irritated when I tell him he still has to get cleaned up when he argues he’s already clean (because he can’t see the poop even though it’s under his fingernails, etc.). I’ve told him about “invisible poop germs” and that gets him to cooperate. :-)

    Goodness. I’m am very long-winded tonight. Sorry!

    Reply
  6. kristin

    You make some good points. “Mirror neurons” is a new term to me. I’ll look into it. One difference between working with, say, a 2-year-old and a 2-year-old in an 85-year-old body is that the latter has decades of competence under her belt from which to take a stance of competence now. This is probably the crux of my problem with Mary. I haven’t figured out a way to present her need to clean up as something that does not undermine her sense of competence and her need to control. Thanks for your comments, and bravo to you for your advocacy of Robert!

    Reply
  7. Avatar of KathyKathy

    Oh Kristin,

    I can’t think of anything you haven’t tried. And you have handled it all so remarkably well.
    Bless your heart and Mary’s. I know your patience is wearing thin.

    It’s so hard to separate the illness from the person at times, especially when the person has always been, as you say, cantankerous and some of their behaviors seem to be their pre illness normals.

    I wish I had more to offer you to make your situation a little more bearable.
    You are certainly in my thoughts and prayers.

  8. Laura

    Kristin, you are a true blessing to Mary and her children. You have gone beyond the call of duty. It may be the time that Mary can no longer be at home, since the poop situation has become more of a problem. It may be the time to look at alternatives, and I know that is not an easy decision. She may co-operate better being in a nursing facility. Just a thought. Whatever decision you make, you can tell yourself you are doing the very best you can.

    Reply
  9. Laura

    Kristin, you are a true blessing to Mary and her children. You have gone beyond the call of duty. It may be the time that Mary can no longer be at home, since the poop situation has become more of a problem. It may be the time to look at alternatives, and I know that is not an easy decision. She may co-operate better being in a nursing facility. Just a thought. Whatever decision you make, you can tell yourself you are doing the very best you can.

    Reply

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