Things are finally settling down a bit and I just wanted to give all of you my heartfelt thanks for all of you caring and support. It means so much.
Yesterday, I was going through some of Bryan's old things...newspaper clippings from 2005. That was the last year he worked. It was sad to see how he highlighted the whole article...just trying to hold on, poor chum.
And I stumbled across my journal from 2008. I want to share some excerpts with hope that it might help anyone else.
In any event, I'll share this part with you guys, it's a little bit of closure for me. Oh yeah, for those of you that don't know me, I just recently lost my husband, Bryan to Alzheimer's disease (May 20, 2011). He was diagnosed in 2006. He was 65 when he passed away, I am 53.
May 25, 2008
...These days I feel pretty fragile inside like my broken pieces are glued back together-the glue's dry but it hasn't quite set. One move the wrong way and it all comes apart again.
I went and met with an ALZ caseworker on Friday for 2 hours. It was tough. I have to look at some hard things. I don't think I'm quite ready to apply for ALTC yet-it's great to know that it's there. What I would like to do is hire someone to come in a few hours daily. And one evening a week-so I could go out get away and know that Bryan is safe. Right now I believe he is relatively safe when I leave him alone. But as the disease progresses I know that won't be the case.
I have changed/evolved so much this last year. My goals, my definition of success, my focus...all different. One of my biggest goals is to make it through this passage with Bryan with as much dignity, compassion, kindness, love and courage as I possibly can. And I don't want to lose myself or my health. So far I've been finding them. I am so much stronger than I ever thought was possible. It could be that Bryan's illness has given me a huge gift--if I choose to accept it. Honestly if there was an easier way to learn all of this I would certainly pick that path. But apparently this is the way things were meant to unfold...cruel and scary as they might be.
It's hard to accept that Bryan is transitioning from this life to the next one, but that is what is happening. And he's leaving me behind. Just like Dad did. But that's what happens. People leave. People die. And I have had the extreme good fortune to have so many exceptional people in my life.
So I am seeing my role shift from wife/lover/partner to helper/friend/protector. Still soulmates with a deep connection on some level.
...I am once again travelling without a map. But my heart is an inner compass and if I follow it I think I'll be okay. I feel like the universe has sent me some great people to help me through this transition. I'm not feeling so abandoned. I'm feeling like I've got a team that has been provided to me.
Back to the present: June 24, 2011
Pretty cool huh? Bryan and I made it through the transition.
Thanks so much for sharing your journal. I really needed to get my "inner compass" under control today. Your long ago message resonated with me, helps alot.
Jeff used to do that highlighting thing. He has books where entire pages are highlighted. He doesn't do it anymore because he can't follow lines or understand the text for long enough to highlight.
"It could be that Bryan's illness has given me a huge gift--if I choose to accept it." I heartily agree with that statement, Anne. Somehow, in the tragedy and commotion of caregiving, that concept isn't mentioned enough. I know that I have changed and evolved through this ordeal as well--it is strange (and good, I suppose) that such a traumatic experience can have any positive outcome.
I think one of my biggest lessons was learning that even though I couldn't change or control the disease process (as much as I wanted to), I did have control over how I chose to deal with it. Sometimes I made good choices, other times not so good. Especially when the change was coming so rapidly. I do know I was very scared in the earlier stages of the disease and didn't know how I could possibly make it to the end stages. But in many ways it wasn't as bad as I thought it would be.
Just wanted some of you who are in those earlier stages to know that.
I know this may seem cold or cruel, but I am glad his disease went quickly - compared to the 25 my FIL went of the length others here have been on this journey. My prayer is still that my husband will go quickly once he starts to loose ground. Right now he is still functioning well, but when he does take a drop (which I know will come sometime) I hope he just keeps sliding fast to the end.
Charlotte, it isn’t cold or cruel, it’s the way I feel too. I guess it is part selfish on my part, but I don’t want him to suffer either. There is no quality of life when they are in the end stages (when they don’t know anyone & they can’t even get out of bed). I know that I wouldn’t want to live that way & I don’t think my DH would either.
As I have mentioned before...when my husband was in the hospital, as he was sleeping, I said, "Please don't leave me" A couple weeks ago I was watching him sleep peacefully, all of a sudden, my thought was how selfish I had been in the past, asking him not to leave me. I will never ask that again of him. Basically, bedridden, unable to speak, feed himself & totally incontinent is no life for a 60 year old man, who started this journey going on 11 years now. I will be devastated when he passes, however, happy for him to be at peace. I think I was selfish for asking him not to leave me.
When my husband was dying the hospice nurse asked if I had told him it was ok to go. I did, and he died the next day. Wonder what would have happened if I had said that earlier.