Thursday Thoughts: Alzheimer’s, Death and a Whine

10487283_10203395028384143_5237883498684633183_nMy mum had Alzheimer’s for many years. She was diagnosed on December 10th, 2011, but it had shown its ugly face earlier and was obvious by June of 2010. Which is when my Dad died. My stepfather died in 2014. It’s been a rough few years.

And I don’t know how I got onto that. Huh. Guess that’s part of the whine?

At any rate, I had to finally give up on her walking in July of last year. It wasn’t for lack of strength. She had that. It was because the disease, after eating away so much of her brain, had finally reached the part that could instruct her legs to move. It would take 5 minutes of “Mom, just move this leg forward. Yup. Lift it. Just move it forward” and her saying “Okay. Like this?” and trying but failing before I could get her to move that leg. Because of this, I had to try using a wheelchair to get her to an appointment. That didn’t work either. I almost dropped her twice. By the end of July I was no longer taking her to appointments and she was wheelchair bound.

In a long line of losses, the loss of her mobility was the hardest for her emotionally. I, to this day (to this minute as I fight back tears) feel guilty for giving up on her. It was the right thing to do. I know that intellectually. But I want that back. I want to have her walking again and talking. In my heart, I still struggle with whether or not that decision led to her death.

That last phase started the Thursday before Mother’s day. She had bruises on her hands–from what I don’t know–that became swelling in first one arm, then the other. She was hospitalized, where they lanced her arms to let the fluid out. And then told me, on Mother’s day, that she was bleeding internally somewhere. That trying to find it meant trying to fix it, and fixing it meant putting her under. My mother’s brain, at that point, was barely functioning. I was down to “thank you” from her, and hand holding. She couldn’t afford to lose any more brain cells, which would have happened under anesthesia, if she would even have made it through surgery. She had written up legal documents that requested no blood products, antibiotics, surgeries etc be used when she became unable to interact. Since losing any more cognition (which would happen from surgery) would put her in that place, I had to agree with the doc to do nothing. The fact that I’m writing this out, that I’ve gone through it several times with different people, tells you how difficult that decision was. I know it was right. But it’s a struggle to agree to ending your mother’s life.

So we put her on hospice and thought maybe we had a few months. I mean, other than the bleeding into her arms (the swelling kept coming back–she wasn’t clotting) she seemed pretty physically healthy. At least that’s what I saw. But a week into her hospice care she was back in the hospital, and this time when they released her they sent her to a short-term hospice facility. She had, the hospital said, lost more blood and was definitely bleeding internally somewhere from something. A doctor told me that she didn’t think Mom had more than a couple weeks. I was tired. I didn’t believe her. Not really.

I’m still tired.

It was less than a week before she passed. And then I was blanketed in grief and exhausted from 3 weeks of extroversion. Every day, people and not fun people. People telling me my mother is dying people. After that it was planning a service. My siblings and I don’t talk. I won’t even text with one of them. So the planning was, again, exhausting, as was the service. People, people, some painful drama, and a lot of resentment.

By the time it was over I’d extroverted through 4 weeks. Since then, since June 5th, I’ve been trying to recover. To just breathe again. To want to see people at all. I haven’t given a lot of thought to writing and I certainly haven’t written. I’d planned so much. And I should do it. But I feel guilty over the free time I have after my mom passed, and I’m guilty that I didn’t stop it, and I’d be guilty if I tried. So the time I haven’t spent cleaning up my mother’s things, I’ve spent on facebook. I’ve read a little, too, but even that makes me feel guilty. I should be writing. I should aways be writing. I should always be taking care of my mother. Should is a new swear in my life.

Just writing this creates a huge wave of grief. It sits in my throat. I guess most people feel it in their heart, but it’s in my throat. I think from holding back sobs. I miss my Mom. In the end, we didn’t have much left, my mother and me, but we did have hand-holding. We did have listening to music in her facility. We did have me reading to her (Wizard of Oz, Harry Potter because I could get pictures for her of the characters and places.) We did have an occasional smile. I miss that.

So–deep breath–it’s another week without writing. It’s another week of trying to care about writing and failing. But I can’t stay “here” stuck in my grief and introverted exhaustion forever. It’s not a good place. So right now, before I call this post done, I am calling up a file. . .and I paged down to where I left off. I have some minor changes to make in Children of Liberty. And a few minor ones to make in The Liars as well, for purposes of consistency. Such are the issues with world-building. Somewhere there’s a notebook with those changes written out. But I’m not going looking for it today. Today, I opened a file. I have critiquing to do but in between I will look at that file and maybe find places to tweak. It’s the best I can do today.

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5 thoughts on “Thursday Thoughts: Alzheimer’s, Death and a Whine

  1. I understand everything you’re feeling. You never let you mother down, not once. You can look at yourself in the mirror and tell yourself that you did everything that you could for her, and it’s the truth.
    It’s also the truth that this is a horrible, terrible disease that robs everyone, family, friends and most of all the victim of everything that they value. But in the end your mother had you. You did what she wanted, even if your heart wanted to do everything possible to keep her alive, you followed her wishes, you honored her.
    And you continue to honor her every day. It will take time, a long time, to move on from here. You’ll never “get over it” you’ll move around it. The loss of your mother will stay with you, though the grief will be less sharp as time goes by and you’ll be able to remember the good times again.
    Grieve, allow yourself to grieve. You say you can’t write, but this is a lovely and poignant article and one that may help others in the future.
    You know that I’ve been here and I’m telling you, let yourself grieve, forget about writing for a while unless you really feel the urge. Take care of yourself. Eventually you’ll feel better.
    And you can always call me, I understand, I’ve been there and I know.
    Lesley

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    1. One of the wisest things I ever heard about a loss like this was, “You don’t get over it. You get used to it.”

      When my mother was dying, I made sure to tell her I loved her and that I was proud of her for everything she’d overcome, over and over again, because I knew if I didn’t, I’d wish I had.

      And then, after she died, I caught myself wishing I’d told her I loved her, that I was proud of her. I’d done it, and she had known that’s how I felt…but the “I wish I’d…” thoughts came anyway. I don’t know what that means and I don’t quite know what to do with the knowledge, but it’s something I’ve never forgotten.

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  2. Sweetie, my dear sweet friend who I don’t see nearly enough (but that’s okay because I know how draining people are for introverts at the best of times), you’ve suffered a grievous wound, a terrible injury to your heart, and one after a long, exhausting round of caregiving. It seems to me your batteries are drained to a dire level, to the point you don’t have enough for writing.

    And that’s okay. It truly is. Healing is hard work for the body and mind, work that draws on our resources in a big way. But in time, the work of healing will ease, because healing has happened and there’s less to do.

    I don’t think you agreed to end your mother’s life. I think you agreed not to extend her life in a way she said she didn’t want. You paid attention to her wishes. And there’s no way to know what the outcome of the surgery would have been. It might have turned out in such a way that you’d be thinking you shouldn’t have agreed to it.

    Anyway, you’re in my thoughts and prayers, always.

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