Every Day’s the Same, Every Day is Different

I’m Kristin, and I am the caregiver for Mary, the mother of friends of mine. She just turned 86, has what we were told was Lewy Body Dementia, but we’re not sure at this point, as some of her LBD-associated symptoms have disappeared.

I am taking care of her because her children do not like her very much, having put up with her abusiveness for years. For that matter, I don’t like her very much, either, and don’t expect that to change. She really is an unpleasant person and I watched her abuse her long-suffering husband for 26 years.

But I am learning to love her. She was very difficult and angry when I first moved into her home almost two years ago, and would yell, scream and strike out. She was consistently and extremely oppositional, which made it difficult to accomplish daily tasks, especially in regard to self-care. She has a colostomy bag and  is incontinent of urine, so there are some cleanliness issues here. She is incapable of correctly completing any ADLs except for making her lunch, though she is beginning to slip a bit with that now.

She has deteriorated significantly in the past several months, now being caught in a world where past is present, all who were ever in her life are still alive (such as her parents, whom she told me tonight she is driving to NJ to visit tomorrow – they’ve been deceased for many years). She is more frail every day and has just ceased to take her daily walks around the yard. She is still cantankerous and oppositional, but I am learning just what to say, and when, to get around sticky issues.

At this point, the caretaking is much more about smoothing the way for Mary in order to make her increasingly frightening days less so. Last year she was happy and content; this year she is just frightened. I am learning to temper my lizard-brain responses, i.e., things I would really like to say when she is being rude and nasty, and either just shut up or give bland or supportive responses.

I am learning to understand that this caretaking gig, which I volunteered for but didn’t realize would last so long, is what I am supposed to be doing now in order to learn new things about myself that will make me a better person. At 67, and retired, I had other plans that I thought I’d put on hold for a couple of years to do this.

Now I understand that this could be it. I won’t say that this doesn’t frighten me at times, but I am learning to relax and let myself just be a caretaker.

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8 thoughts on “Every Day’s the Same, Every Day is Different

  1. Trish

    Kristin, You are truly an amazing person. You have gone above and beyond what anyone could reasonably expect and I am in awe. I am inspired not only by you caring for a family friend but by how you’ve been able to manage taking care of a difficult person. I’m happy to be at the party with you. :-)

    Reply
  2. kristin

    Thanks! And I have always admired your dogged determination to fight for your brother to get him the best care possible. What a great advocate you have been. Can we break out the hot chocolate now?

    Reply
  3. Jane

    Hi Kristen:

    I totally agree with Trish. You have gone above and beyond what most people would do. I think that Trish has to for that matter with Robert. For me, I am expected to be a caregiver for my child so I don’t feel that I do anything that any other mother wouldn’t do.

    I have learned from you and I am grateful for that.

    Hugs:o)
    Jane~mom to Nicole, 17 yo, VSD, PAH, Eisenmengers, BHJS
    “If you don’t like something change it, if you can’t change it, change the way you think about it.”

    Reply
  4. Sharon

    I echo the sentiments expressed above. You were not obligated to take on these caregiving responsibilities of Mary, and you did it anyway. That shows a selfless kind of giving that is very admirable.

    Reply
  5. Avatar of DeniseDenise

    Ooooooh, Kristin, what a statement you made: “But I am learning to love her.” Wow! You gave me goose bumps. Perhaps the ones who are hardest to love are the ones who most need love?

    If this is *it* for you… I can’t wait to see what you’ll do with it!

    Reply
  6. Avatar of Bette

    Hi Kristin,

    Your strength continues to give me strength – thank you.

    I’m sorry for the additional fear that both Mary and you are enduring. That is new here and I’m learning as we go. I so appreciate your honesty.

    You are stretched daily as Mary is in her dementia. She is so blessed to have you to lean on. Hoping for a quiet night for you.

    So nice to be at a party with you! (:

    Reply
  7. Avatar of KathyKathy

    kristin,

    Isn’t it amazing what we learn about ourselves in the most difficult of caregiving situations?
    I too got goose bumps in your, “But I’m learning to love her”
    What a great love it is too.

    You’re an amazing person Kristin. :)

    Reply

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