The new normal - which makes me bone tired

GothicGremlin

After the last few months of instability, I think Peggy is settling into a new normal as she hovers at the beginning of Stage 7.

She eats only finger food now, none of us let her walk by herself anymore because she's likely to fall. She doesn't eat in the dining room anymore because there are too many people in there for her comfort level. So she sits right outside of the dining room where she can't see anymore (but staff can see her). It's working out so far. If we have her eat in the dining room she'll get really agitated and there will be much yelling and crying. Best to avoid the whole situation.

Peggy's still surprisingly verbal, although a lot of times she makes no sense at all. She thinks she is, and I guess that's what's important. All I can do is agree with her.

Her latest is that there's a new guy in Memory Care - he's acclimating to Memory Care from Assisted Living - and she's convinced he's our brother. This guy looks nothing at all like our brother. Not even a little bit. Again, I just agree with her. Although today -- she said to me "L is a different person." I'm thinking that it's dawning on her that the guy in Memory Care is not our brother.

As for me - I'm just weary. It's sort of like what I imagine the middle of a marathon to be - you're beyond tired, but you have to push on, and you haven't yet gotten your second wind. I started feeling this way about a month ago and haven't figured out a way to pull myself out of it yet. My coping mechanisms are only sort of working (gym, music, writing) these days. Maybe I've just hit a hard wall, and I need to take several days off and do nothing dementia-related at all.

On a side note -- this song has been resonating with me lately. This is what the inside of my head sounds like when dementia weariness is at its worst. The Sun by The Naked And Famous.

harshedbuzz

@GothicGremlin

I am sorry for your situation. It's hard when you hit the point where you put on the oxygen mask (gym, music, writing) and it malfunctions.

I feel you on the marathon analogy. It is like that except you aren't sure how much further you have to go at any point in the race.

HB

M1

Thinking about you too GG. Hard to witness, from near and far. I'm sorry.

Quilting brings calm

My parents are still not too far down this dementia path, and I’ve had that marathon burnout feeling already. Their PCP told me to pull back and that did help. Of course, that also leaves me with a sense of guilt that I am not doing more.

You may need to actually go somewhere for a long weekend. I have noticed that crossing the state line sometimes relieves my stress ( no idea why).

Jgirl57

I vote you take a break away from dementia related caregiving for a bit. The MC will call if there is an emergency . You are an amazing sis, but only human. Hugs to you

GothicGremlin

Thank you, all of you. It's always hard, but the last couple of months have been a bear. Watching Peggy argue with her hallucinations has been tough. And I know that it's not been a good time for Peggy either.

A couple of my friends suggested that I go with them to Burning Man this year. I've been in the past, and yes, I like camping in the desert, and it can be an exercise in mindfulness if you approach it the right way, but it's also 7 to 10 days in the desert with no cell service. I'm giving myself permission to take a vacation, but Burning Man seems way too remote for where Peggy is right now. And it's not until late August, which is not soon enough.

More thought needed. Maybe a weekend camping trip closer to home. I just have to convince my s.o. that he really, really wants to go camping. 😄

CatsWithHandsAreTrouble

Sorry to hear that you're struggling with Peggy's progression and making time for yourself. Camping does sound like a good change of pace for you. Good luck convincing him! ((Hugs))

Iris L.

No cell phone service at a big event like Burning Man? That sounds odd! There has to be a way for people to get in touch with civilization. My suggestion would be to have a break way before August.

Iris

WorkWithWhatYaGot

Thanks for the music, I enjoyed it, oddly enough. This is very different, but it has helped me a lot lately and is just a very interesting piece. Based on an East African rain prayer. https://www.youtube.com/watch?v=XH6IT_tsSUI. Christopher's Tin's Waloyo Yamoni - "We Overcome the Wind"

It isn't my usual kind of thing at all, but it is my go to right now.

Gakinrolabu

I'm sorry to hear this Gothic. The burnout is real. You are no good to anyone unless you refuel your batteries. Try to prioritize that.

GothicGremlin

Nope, not really, @Iris L. Here's their page on it. No cell service (or service so bad you really can't use it) is why going there makes you live in the moment, and be thoughtful about what you bring and don't bring. That's why it's so attractive to me - but Peggy is having such a tough time right now, I can't give myself permission to go right now.

@Gakinrolabu - you are so right. Thankfully I'm seeing my therapist tomorrow. 🙂

@WorkWithWhatYaGot - yeah, it's an odd piece, but somehow applicable. I liked the one you linked to as well. I'm pretty omnivorous when it comes to music.

I talked with my s.o. and we're tentatively thinking of a longish weekend at the Pinnacles. I'm hoping that a long weekend there will at least take the edge off. It's one of my favorite places and not too far away. If you're in California and you like to camp and/or hike, I highly recommend it. Here's the National Park Services page on it.

Jgirl57

Good for you! A get-away but not too far !