Dementia Diaries: Hospice, facility both warn "she's close"

07/22/20 -- It's weird walking into her facility lately.

Literally every time I leave, I think to myself “This could very well be the last time I see her alive.”

I guess if I sound casual about all this it’s because I’m sort of on auto pilot. I’ve been waiting (even wanting) this day to come for awhile. I know you’re thinking to yourself, “Wanting, Katie? Really?!”

I feel so guilty for wanting her to die. That’s a terrible feeling. But this is not a life worth living. She doesn’t deserve this. I just want her to be out of her misery.

Today was the first time in awhile that I really wanted her to hang on. I guess, selfishly.

That’s because it seems like this chapter of our lives is closing quickly and the truth is, I have no idea what the next chapter looks like. I’m scared to death. This has been such a big part of my life for nearly 4 years, that I don’t know what my life will look like without her in it.

It would be a gross understatement to say this journey has been emotionally draining for me personally. So many people have reach out, commending my patience, telling me how gracefully I’ve handled things.

Gracefully?! Truth is this dementia journey destroyed me. I lost what I thought was everything and hit rock bottom. I don’t know that any of it was graceful! I can’t tell you how many times I fell down and had to pull myself up, pick up the pieces and dust myself off.

But I can tell you one thing.

I survived.

If you’re reading this, wondering how in the world you can possibly make it through one more day of your own tribulation—know this. I’ve been there. I have made every mistake in the book along the way. And I’m still standing. You will get through this.

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Today the facility’s Memory Care Coordinator pulled me into her office and said, “she’s close,” very solemnly. I think she was trying to prepare me. She had been on vacation a week and thought changes in my mom were very noticeable upon her return.

Up until now the verbiage from the MCC and hospice has been: “we’re getting there”, “it’s coming”, “probably in the next few weeks”. Today was the first time her hospice nurse looked me in the eye and said, “Honestly, she could be starting the active dying process today”. If not today, very likely the next few days if she continues to not eat or drink.

I’ve asked hospice about timelines in the past. Just trying to prepare myself, I suppose.

But the length of a life...that’s such a hard thing to speculate.

Her nurse says that every person is different. There's no exact scientific calculation to determine rate of death or length of time left on this earth. But she said that in her experience, the frequency of noticeable changes can often be very indicative of the length of time someone has left.

For instance, if you’re noticing changing on a month-to-month basis, that typically means they have several months left. If you notice changes on a weekly basis, often just weeks left. We’re officially in the “noticeable changes every day” phase.

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Not eating is really the biggest change. To be fair, she hasn't "really" been eating for awhile. <25% of one or two meals isn't exactly eating in my opinion. I've suggested switching her to a pureed diet a few times over the past two weeks, but caretakers say she still does in fact eat a few bites, it's just limited. They keep a close eye out for what food she’s getting served. If it doesn’t look soft enough, they tell me they’ll go down to the kitchen to get a different option. It’s appreciated, though often I wonder if maybe switching her diet up entirely (only soft or pureed) would have yielded more successful results prior to now.

Ugh… it’s a pick your battles type of game with care facilities. Lately I’ve been very pleased with her level of care and the quality of the employees, but let me tell ya friends, it has been a JOURNEY to get to that point! If I’m being frank, my mom’s assisted living/memory care facility was a complete shit show the first year she lived there. I think the frustration with her facility alone was honestly more frustrating then the disease itself a lot of times that first year.

But let’s not live in the past.

Regardless, we’re switching her diet to a “mechanical soft”, which is essentially the consistency of ground beef or scrambled eggs. Though, I don’t think any of us are real confident that’s going to make much of a difference at this point.

We took her OFF of Methadone about a week ago. The weird tongue movements scared me and she was so catatonic that I just felt like it was the right thing to do. So, for now she’s back on just morphine (lowest dose) every 4 hours. This does make her sleepy and not terribly alert but does seem to provide some comfort.

Finally, her Memory Care Coordinator thinks it’s time to stop transferring her in and out of bed. She’s just slumped over. She no longer responds. She’s not eating. She’s essentially just motionless. Plus, the act of physically moving her is causing noticeable discomfort. She told me it doesn’t have to be a permanent change and if she responds well to a different diet, they’d absolutely keep utilizing the wheelchair.

But I think we all know that’s not likely to happen.

I guess the next day or so will be very telling.

Most of her vitals were still okay today, though her oxygen was low. If the others start slipping her hospice nurse said that’s pretty much the end and things will start happening very quickly.

That’s the scariest part…. because… then what?