Making sense of where I am now - stage 8

GothicGremlin

It's been 5 1/2 years since my sister was diagnosed with early onset Alzheimer's and FTD, and a little over a month since she passed away from it (yeah, early onset does move fast). It's still easy for me to think that she's off somewhere on vacation with no cell service, although we're getting to the outer edges of that little bit of denialism.

Throughout these years I've always second-guessed myself - what more can I be doing?, is memory care the right answer?, should I trust this doctor?, etc. Now that she's passed away, I still have similar questions - did I do enough?, what else could I have done to get her to eat?, etc.

All of those questions lead to something that looks a lot like guilt, like maybe I didn't do enough, or that I did something wrong. What I think it really is though, is the feeling of powerlessness, not guilt. I did everything that I could think of to do and worked with social workers, doctors, therapists, memory care staff. I don't think I could have done any more, and I think that's true probably for all of us. Dementia is relentless and I think really all we can do is be there for our LOs, bring as much comfort as we can (happiness is hard to come by), and keep them safe. I know I did those things, and I feeel good about that. Peggy always knew she was safe with me.

So now, a month on, my near burn out is fading, and I'm taking things slow, and just ….recovering. I'm slowly taking care of Peggy's estate and finding homes among friends and family for some of her favorite things.

I think it's going to be awhile before I'm back to my pre-caregiver self, but it's clear that even when I get there, I'm a different person than when I started this. And I'll always miss Peggy.

mommyandme (m&m)

You are a wonderful caregiver for your sis! I use present tense because you are still caring for her and her things. You did do everything you could for her and beyond. Your life without her is still so fresh yet I’m glad you can see forward now, even if just a little at a time. Its been 1.5 years since my LO passed and I still have so much to organize. This is all very hard, looking back is normal. Be comforted by the fact that you were the best sister and caregiver to Peggy.
As always, thank you for sharing!

GothicGremlin

Thank you @mommyandme (m&m) I've long followed your journey with your mom, and through you I see that stage 8 really still is part of the journey. I also learned a lot from you when our LO's were still alive. You're completely right - all of this is very hard. For me, it's still almost unbelievable.

I took a step today. I made a plan to go to a wine tasting event in the Sonoma area of California. The event is in September. It's been 5 1/2 years since I've made any plans that far in advance that didn't involve at least one doctor, not to mention going to a location that is that far away from Peggy.

Jeanne C.

GG, I'm glad you're taking time to recover and making plans. I'm not sure any of us will go back to being our pre-caregiver selves. But that's ok. You've been through a lot, good and bad.

I was so much older then. I'm younger than that now.

GothicGremlin

@Jeanne C. Yep, I agree. We've all been through so much, and bleak as it was, there were some good times too.

Weird how this is. I've lost a lot of people over the years … parents, aunts, uncles, a few friends; but sad as it all was, most of them went quickly, no horrible lingering illnesses. This is my first rodeo with a lingering illness. It's probably why it's taking me a while to wrap my head around it all.

P.S. Good quote, but I had to look it up. 😊

concerned_sister

Sorry for the side note, but I recognized the quote immediately. I got an album of Dylan in my early high school years.

GothicGremlin

@concerned_sister - No problem at all! I definitely have large gaps in my musical knowledge and it always makes me smile when one appears. I appreciate Dylan and recognize his great contributions, but I'm not the hugest fan.

concerned_sister

It was a Christmas prestent of a two album set of Bob Dylans greatest hits. I can still see the shade of blue of the album cover. This was about the era of going from vinyl to 8-track. Yes, I am old.

GothicGremlin

Yes, I am old

Right there with you, @concerned_sister 😄

My one consolation - in the gothic community, there are such creatures known as Elder Goths. I'm one of them. People are nice to us.

concerned_sister

I would have just missed the flower children. But I do remember the bright neon colors of the Love poster and the peace symbol posters on my wall as a child. Giving away my age, I graduated high school, turned 18 and the nation turned 200 all within a couple of weeks.

GothicGremlin

@concerned_sister we're close in age. I missed the flower children too - didn't stop me from liking just about everything Donovan ever did though.

concerned_sister

I think it may have been you that posted about going to an Eagles concert. As a birthday present to older brother I bought us a pair of tickets to a concert he really wanted to see at the Big A (Angel's Stadium). Jackson Browne, Linda Ronstadt and the Eagles. To me, Linda Ronstadt stole the show and I became a big fan of hers.

GothicGremlin

The Eagles .. yes, that was me. It was a Day on the Green show, I went to many of those back in the day. 🙂

Peggy was a big fan of Linda Ronstadt. She was one of the greats, to be sure.

concerned_sister

Your story telling brought back that memory for me.