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So how’ve you been?

Posted in caregiver,Crazy Wisdom on Thursday, March 3, 2022 at 7:42 pm by flerly.

I wish I could better explain what I feel, but I’m not sure I always know. On the surface what I feel is tired, all the time — mentally exhausted from carrying the weight of the unknowns each new hour of the day can bring even before I have to physically deal with any of them. Then as I find myself getting through a thing, there is sometimes a little boost of strength and a voice in the back of my mind that says you’ve got this, you’re doing it that hits just before the other voice in my mind, the sad one that just asks can you believe what you’re having to do?

As many have said before, dementia is a thief. It steals not only my mom’s self from her body, her thoughts from her mind, her awareness, consciousness and life, but it also steals my own fond memories, my energy, my patience and my love for her, leaving only a burry line between the things I do for love of my mother and the things I do from a sense of duty and responsibility that are detached from the person who receives them.

It’s a lie to say that I don’t have the “luxury” of sitting by her side 24/7, to take advantage of the precious time I’ll never have back again. I’m often burdened by the guilt of just not wanting to be in the room with her like this. Am I really too busy with my work or can I just not stand to do another performance for her. That’s what the interactions are for me, performances. Don’t fill them with anything real, or her reaction can just sting worse. We meet her where she is, going along with anything at all to keep things calm, pleasant and comfortable.

All the “precious time” I’ll never have back is already gone, and pretending it isn’t gets exhausting. It’s easier to be detached. Easier to spend hour after hour, day after day, watching a monitor from a distance so I can try to “live” and “work” and “be normal” — have any “life” beyond caregiver and guardian. I watch and hone my responses to what I see, perfecting them to be handled as swiftly and painlessly as possible, for me.

Sometimes, it’s so obvious all she wants of me is to sit down with her and talk. About anything. Or just sit and let her look at me. She’s not often present to what’s going on, but she seems to know who I am and that I’m working very hard to take care of her, and that I apparently always look tired and like I need more sleep. There are moments when she feels like a “mom” even if she’s not sure she’s my mom. You’d think the effort I put into hiring caregivers to spend time with her during the day, to interact and sit with her, would fill that need, but instead it makes her angry that these strangers won’t leave her alone. And I know if it were actually me up there, it would be different. Why aren’t I up there sitting with her to color more, or just watch tv, or to just sit and have coffee or talk about the weather. Why is it so hard to do?

It was only five years ago we made the decision to move my mom in with us — decided she shouldn’t live alone anymore so far away, when she kept getting hurt or needing things fixed. The expense for her was too much, and it felt dumb to just throw money at trying to support her there instead of just trying to live all together and maybe actually thrive instead of survive. Those signs that she shouldn’t live alone anymore were the same signs that she wasn’t truly well anymore. We were already losing her before we even got started.

Thinking back on it now, we’ve been “tricking” her into allowing us to take care of her since the beginning. Yes, she decided and agreed to move in with us — but before the process was done, she often couldn’t remember doing that, couldn’t remember what we were doing or why. On again/off again doesn’t get a house sold or furniture moved when you’re already in the process, so we pushed her, cajoled her, lied to her, tricked her, said whatever needed to be said so she would go along with the decisions she needed to for her own good, as well as ours.

And that never seems to have stopped. The hospice nurses now tell me “you need to learn to lie to her better”. It feels like all I do is lie to her. Even now, she has hospice caregivers coming to her, and they’ve stopped PT and other regular tests. No one is pushing her to walk or exercise or do anything she doesn’t want. Why aren’t these things a bunch of red flags that everyone has given up on her? Why isn’t she upset or afraid or pissed off at me? Why does she still seem to love me, and think I work too hard and look tired.

I can’t reconcile how she is and isn’t my mom at the same time. I’m looking at her every day, but I miss her so much. It’s overwhelming. If I let myself think about it, I can’t stop crying. Everyone says to me, you need a break — just plan something and get away. And my brain agrees, yes, sure, I do — I’d love a beach or some sun or just some quiet or maybe some days of sleeping in and eating out, but that too is just impossible. There’s no magic recharge method or place while we’re in this. I can walk away, but then I’ll just be somewhere else unable to reconcile the situation, wondering how to do things better, wondering what I’m doing wrong, and what I might be losing by putting so much of myself into this process. Then I’m somewhere wondering why I can’t even take a break right.

The constant state of gray is not maintainable. Things need to get more black and white, or else there is just no distinction, no separation. But even the separation is not maintainable, when the first question anyone asks me is “how is your mom doing?”

So, how I feel is exhausted and alone and sad and angry and just fucking tired of people asking and like it has gone on forever and like it has so much worse to get and like I didn’t know people could just freefall for this long. I read other posts with other similar stories of bad days or unintentionally funny – you have to laugh – days and I feel a little less alone, or at least I feel like this all might be “normal” for the situation and that others get through this so I probably will too.

Still I wonder about the feeling of detachment and whether and how others deal with it. I’ve seen a couple of posts about how happy they were to move their loved one to a care facility so someone else could be the caregiver and they could just be a daughter again — but from the little time where my mom had to be in a nursing home for rehab after a fall recently, I found she spend that time so drugged and out of it that visiting was a nightmare. She never seemed to know who I was — I might as well have been part of the staff. The location just made her so disoriented and disconnected, that I can’t even imagine what it would be like if she weren’t in somewhat familiar surroundings. Then I wonder if maybe we’re just “too soon” for that — that there will be a point when her surroundings here aren’t any more familiar than anywhere else would be, and that just feels like more crushing weight — that we might still be in the “better” days.

I just don’t understand how do you process all of this and function day to day. My mantra has been “one foot in front of the other”, meaning just deal with the next thing, then the next thing and just keep going, but that’s really living outside of a place of understanding. And if we just keep going — then how do you take a break?

And all the other dementia caregivers pour out their support and love, tell me I’ve read their minds or written their own life, because they are every single one just awesome human beings. They even say that detachment is normal, especially for those that didn’t just respond “I pray to God a lot.”

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