No doubt - stage 7

GothicGremlin

A few weeks ago I wondered whether Peggy was at the tail end of stage 6 and/or the beginning of stage 7.

Well, I'm not wondering anymore. She's definitely in stage 7. Not only that, but I'm not seeing only 7a, I'm seeing b, and even some c. Things seemed to accelerate in December. I'm reeling, it's happening so fast.

Peggy's now having troubles chewing and swallowing - new as of a few days ago. Hospice will be in tomorrow, so maybe we'll move to puréed foods then. She can only stand if we have a person on either side of her, and we have her stand only when we're moving her from the wheelchair to the bed. We're wedging her in the wheelchair because she slides down out of it, and we're ordering a reclining wheelchair. Hopefully that will help some.

Oddly though, she still has some vocabulary. I'm not sure if this is a good thing or not. The other day I was sitting quietly in her room with her and I think she forgot I was there. She started crying, so I moved a little closer to her so she could see me and so that I could better comfort her. She looked at me and said, "it's bad, isn't it?" I didn't want to say "worse than you know", so I said "things aren't great, but we're working on it." Then she said, "I used to be fine." More tears. I did my best to comfort her, but man, I felt so deflated. I didn't sleep at all that night. I still haven't recovered, to be honest.

I've been trying to do some self care. The gym has been good to me. I also managed to get myself to San Francisco to visit my old goth club in person. I'm there every week, but only online. It was good to see some friends in person, and dance in the club for several hours.

A few weeks ago they played this song at the club -- it's country goth? Is that even a thing? It's such a gorgeous song (and of course, very sad), and his voice is amazing. When he gets to the higher registers he kind of reminds me of Roy Orbison.

Something pretty to enjoy:

Dead of Night by Orville Peck

M1

So sorry GG. Those moments of awareness are stunning.

You are a wonderful sister. Truly.

Jgirl57

Such an awful disease…..; Hugs to you and Peggy

BassetHoundAnn

I'm so sorry, GG. Hugs to you and Peggy.

My mom has been doing well with a Broda wheelchair. She got it from hospice. It keeps her upright, keeps her from sliding out of the chair. Keeps her from trying to get out of the chair and falling.

Like Peggy, my mom has moments of clarity about what is happening to her. It's gut-wrenching.

Hugs to you both.

harshedbuzz

@GothicGremlin

I'm so sorry. I am glad you carve out some time to attend to your own selfcare. You could be the posterchild for "Better selfcare makes for better care".

Much of what you are describing feels so familiar. I felt like dad's dementia progressed at a fairly slow rate for a long time until, what was for him, final weeks. It was like a steep hill where the rate of descent increased so that daily things were different. He would tell me he was dying. He was very verbal until the end. At some point in the latter stages, dementia became less about memory (despite anosognosia dad knew his memory was "bad") and more about the physical debility for us and him.

I wish you peace and strength going forward.

HB

JeriLynn66

GG, I’m so sorry, holding you and Peggy close to my heart ❤️

forbarbara

You are so strong and so loving. And you have given all of us here so much wisdom and empathy. I hope these words - all of our comments - will help you through the time you have left with Peggy.

Jeanne C.

GG, you're an amazing sister. You and Peggy are in my thoughts.

SusanB-dil

thanks for the update, GG. I know we all HATE 'this' thing... Agree - glad you got some very much needed 'you-time'.

dancsfo

You've done a lot and I'm sure the efforts to comfort your sister is appreciated by all.

mommyandme (m&m)

I’m so very sorry for this turn in your sister’s journey. So heartbreaking!

ButterflyWings

Sending you hugs and wishing you both moments of peace, despite this terrible disease.

I know exactly what you mean. After the years-long plateau that Stage 6 was for us, I think I must have been lulled into a sense of slow progression. The sudden appearance of Stage 7 complications feels like its moving at lightning speed with things that could easily take my DH catastrophically without much time to ensure his comfort etc, which is the main priority.

Complicating matters is that I only recently got the highest number of home health aide hours, but they don't have the training, experience, or attentiveness for me to fully take advantage and leave for hours with him at this now clearly very volatile state. So many terrible ironies with this monster disease. I am glad you have your dear sister at a familiar MC with people who know her and provide the level of care around the clock that you can at least entrust her to, since we cannot save them from the inevitable.

The biggest blessing at our home is that his anosognosia has totally blocked any awareness of what is happening to him and us, for almost as long as I can remember. I'm so sorry that your precious sister has clarity of the one thing you probably wished she did not. Bless you for being her angel on earth.

Quilting brings calm

I’m sorry that your sister is in stage 7 and especially that she’s aware she is.

GothicGremlin

You're so right, @M1 , it's stunning. It all kind of overwhelmed me, and I didn't really come back from it until yesterday. It was days before I could even write about it. And thank you.

Thank you @Jgirl57

@BassetHoundAnn gut-wrenching is exactly the right word. I'm sorry your mom is in a similar place.

Thank you, @harshedbuzz I feel like my attempts at self-care are what's keeping me sane. This is all so incredibly painful (for all of us). I don't know how we all do it, but we somehow do.

Thank you @JeriLynn66 I appreciate it.

@forbarbara you have no idea how helpful all of your (and everyone else's) comments are to me. ❤️

Thank you @Jeanne C. It means a lot.

Thank you @SusanB-dil we all definitely need to take some time for ourselves when we can.

Thanks @dancsfo we're all trying.

@mommyandme (m&m) it really is. It's not unexpected, but somehow that doesn't make it any easier.

Thank you @ButterflyWings Peggy's always progressed quickly. Just four years ago I managed to get her to Italy, where she had a great time. This last year really has felt like lightning speed. A year ago she was still walking, even as recently as this last summer I could still walk with her and sit in the memory care garden. Not now.

@Quilting brings calm I'm happy that she recognizes all of us most of the time, that's the upside. But the huge downside is that sometimes she knows what's happening to her, and that is just monstrous.

gampiano

Hello,

My DH, when he reached stage 7, progressed so rapidly as well. We were in a holding pattern for so long, and stage 6 was long and slow. The daily decline of stage 7 was a shock, and also a blessing. Having him at home was a double edged sword. I still have flashbacks from some of the horrific nights , the total sleep deprivation , and in the end, the total loss of his essence. He had anosognosia, so that was a blessing for him.

You have been a wonderful sister, the kind of sibling we would all wish for. I'm keeping you and Peggy in my thoughts daily.

Maureen

GothicGremlin

Thank you, Maureen ❤️

pookabera

GG, thanks for the update. Your check-ins about self-care in the midst of everything always remind me to check in with myself (and my mom who I feel I'm also "caring" for in a way).

And yes! Orville Peck is wonderful, love the "Southern Gothic" vibe.

GothicGremlin

@pookabera "Southern Gothic" - yes, that was the term I was looking for. I knew there was one!

JeriLynn66

GG, I was just thinking about you today and hoping you were doing OK.

GothicGremlin

Thanks @JeriLynn66 . I'm okay. The news from the hospice nurse, while expected, just wasn't what I wanted to hear. I needed some time to process.