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.

Thursday Thoughts, Alzheimer’s and death

My Mom passed away last Friday. I got the call, but couldn’t make it in time to be there for her. I wanted to, because she was an atheist and I thought she must be terrified. I wanted to make it easier, but just like everything with this disease, easier is always questionable.

I thought on the way home, as I was crying and trying to drive, that I wished it was Tuesday again. Not Thursday, because the day before no matter what I did, I could not seem to ease her distress. But Tuesday, when she slept half the day. I was so sad. I felt so helpless. All I could do was hold her hand and it seemed like nothing at all. But on Friday, I wanted Tuesday back.

That’s how this disease is. You always want Tuesday back. Even the worst days of the “before” are better than the days of the “after”. I knew it at the time too. I knew when my mother would ramble on and she made no sense at all and introvert that I am, I was quickly exhausted trying to answer, that I would want those moments back. But even then, you don’t hold on to them long enough. You don’t live in the moment enough because there is always pain, often from remembering that other “before”.

You would also think that after all the years of tears that I would be mostly numb right now. I remember one terrible day driving home from a visit, crying in the car, sobbing to my mother who wasn’t there, that I couldn’t fix it. That no matter how hard, I couldn’t make the disease go away. I couldn’t get her back. And I was sorry that I’d failed her. I did–I do even now–feel like I failed her. You could tell me I didn’t. I could say I know, but no matter what, it sits in some dark place in my heart. I can no more get rid of that guilt and sadness than I can destroy the disease.

But those tears were not enough. I am so sad, hurt so much that I wish I could just rip my heart out of my chest and stop the pain. As I writer, I should be able to articulate why, I should be able to put the thoughts that bring this on into words, but I can’t. I don’t think; it just hits me. I’ve lost other people. My father, my stepfather, even my dog (who was a people, at least in his mind). They all hurt, but this is worse and I can’t say why.

This one thing, though, I do understand. I have been able to cry these last months on command. For no reason or whatever reason you wanted to create. I didn’t know why. It was weird. Now I do. It was this. It was the knowledge somewhere that I couldn’t dwell on it, that my mother way dying and I couldn’t fix it. Now it’s here and between the sobbing jags, I reach places where those tears have stopped. So that’s something.

And those are my thoughts for this week.

Alzheimer’s Caregiving, and Writing

So my Mom’s got Alzheimer’s. I’ve probably mentioned this before, but I don’t talk about it much here. She was diagnosed in 2011. At the time she was living at home with my stepfather, who was showing signs of dementia (vascular) at the time, although not nearly so advanced as my mother’s illness.

I’m not her primary caregiver. She and my stepfather moved into assisted living in 2012 and shortly afterward they had a full-time assistant living with them. When my stepfather passed in 2014, my mother moved to a memory care unit. In that respect, I have never been primary. However I am secondary. Is there a secondary caregiver? I’m taking the title though.

As a secondary caregiver I am the Driver. To appointment, which for a dementia patient is more than most because they have a difficult time talking about symptoms or caring for themselves. That means 4 times a year to the dentist, 4 times a year to her regular doc, with the 4 times a year of fasting blood test. Because of the dementia, my mother was also seeing a neurologist to keep up on her mental decline and proscribe drugs for that. That’s a lot of driving.

Then there’s the ER visits. Dementia patients fall. I am happy to say my mother’s never really hurt herself in a fall. However, every fall requires a visit to the ER for tests. The ER she goes to is always super crowded and can’t easily handle a lot of traffic. We’ve spent many hours in the hall. I guess I could let her stay there alone and talk to the docs over the phone, but neither my conscience nor heart can allow that, so there have been 6, 7, 9 hour stints there too.

ER visits often mean hospital stays. Obviously my mother’s safe there, but I’m her daughter. I have to visit. I have to visit her in the memory care unit too. I say “have to” like it’s all obligation and, to be clear, it’s not. I love her and we have had some good days together. Still, I am the only person in the area, so if I don’t visit, she gets no visitors.

It’s a lot of time. If that were all it was, writing and caring for my mother wouldn’t be so bad. But there is this huge emotional suck too. I have tried, many times, to write on days I visit her, but I only manage it about 30% of the time. It’s disturbing, exhausting, debilitating. Still, in the middle of all of this, I’ve published three romances, and wrote and published The Liars. It is possible. It’s just hard.

This summer’s been different though. This summer’s been much harder. My mother’s having a tough time walking, even with a walker, and when I almost dropped her after one appointment, I realized I cannot transport her anymore. That meant changing her doctors for the ones at her facility. Which meant contacting her guardian (which she has due to a family court battle, which I won’t discuss here), getting paperwork going, calls and finagling. That’s not easy for an introvert in the best times. When your heart hurts it’s much worse.

And it does hurt. A lot. I am freer now that it’s done. No more appointments. But it means letting go of caring for her. I’m used to letting go–I had to with two grown children–but this is different. It’s a sad letting go. It’s admitting that she is leaving me, bit by bit and it’s admitting that I have no say in that. It’s heartbreaking, and very difficult to concentrate on writing.

Add to that the fact that my mother’s sister died this year from complications to Alzheimer’s.  It has shown me that, as much as I’d like to ignore it, the clock is ticking. This week has finally seen Mom moving into a wheelchair. She can no longer command her legs to walk. This is a woman who hiked Mount Washington in NH three times. A woman with a master’s degree. A professor and a die-hard physical fitness enthusiast. What Alzheimer’s steals is breathtaking and heartbreaking.

And so it’s been a sad spring, a sad summer and I haven’t done nearly as much writing as I expected. I wish I were the kind of writer who could work through it all, but I just am not. I have no advice for writers going through this. All I can say is I try to make the moments with my mother good and memorable. I try to remember that I have years to write, but the good moments I have with my mother are quickly dwindling. I don’t want to look back and wish I spent more time with her. That’s the best I’ve got.

I believe that the worst of this last stage is over, at least emotionally. I believe I can get back into working pretty steadily. The second draft of Children of Liberty has been done for two months. I’m hoping the third will be finished in the next week.