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Jrzygrl

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I also agree that what we went through was way more complicated and requires a different level of grief. One item in particular that pulls at me is that fact of losing the "spouse" mode to "caregiver mode". It's almost like we didn't get or at least I didn't get that spousal goodbye. I think sometimes that is what hurts the most. Just talking about it make me tear up.

Sue,

You've put into words my biggest regret. I look back and wish that I had been able to turn off "caregiver mode" and stay in "spouse mode" more often.

People often remark what a good job I did taking care of Jim. I always say thank you, but secretly wonder if he needed me more as wife vs. caregiver. But how do you unwind the two?

I'm smack in the middle of year 2. One thing he made me promise him was that I'd be OK when he was gone. I'm trying, but still feel so unsettled. Like I'm just existing. COVID definitely has not helped. I'm hoping the light at the end of the tunnel is coming soon.

Colleen
(Yes, today is the first time I've used our names. I was always afraid if I did before, he may have stumbled across one of my bad-day rants and figured out it was me.)
 

ARCG

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Lenore, you express it so well. Grief upon grief. It will be 5 months on Thursday since I lost my husband, overwhelming grief and it feels like I have been grieving for over 6 years, constant losses. What I wouldn’t give to have him back with me. Don’t know how to go on without him. Sue, I know what you mean about going from spouse mode to caregiver mode. Jim, I too, find it irritating the there is no box for widowed. My ring is also in place. Love is love.
 

lgelb

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Colleen, if we could turn off "caregiver mode," we would never have gotten to "spouse mode." I think all our PALS regretted the switch as we did, but also knew that it was our "last full measure of devotion" because it put us where we needed to be, at the end.

Afterwards, I gave my ring a year and change and then took it off because people at work, etc. were honestly confused by it when the subject came up. But it is all still within -- the caregiver and the spouse.

ARCG, you can go on, and you will. It just takes time to know that. Get help to march on if you need it. We all have somewhere better to be, for others as well as ourselves, than the closet of our minds.

--Laurie
 

Jrzygrl

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Thinking of you and Brian today, Lenore. Hope you can commemorate this special day in a way that would make you both smile!

Hugs!💕
 

Sonne

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Grief doesn't come in a pretty wrapped box with a lovely satin bow- although love can. Yes grief has many turns for us who have loved and even for those and maybe more so for those who have stopped loving. I too seemed to love my husband as much, maybe more after his death. I had to fill the loneliness with something and I chose to keep on loving him. Sometimes it seemed that he had done no harm- almost as though he were a saint- but that he certainly was not, but when we so very much want them it's what we do. It does no harm provided we recognize when we need to move forward. Little by little we allow ourselves to remember our loved ones as the human beings they were with their irritations, frustration, faults and so further. We do heal. We do forward. And we can love again when and if the cirrcumstances arise. With grieve it isn't as easy as the 5 stages of grieve but often include dozens of different emotions of joy, anger, fear and love. We move forward when we are able too and not because we think it's time to do so. I have put my love in that pretty box with the satin ribbon and open it at times when it is safe for me to remember the pain and heart ache. Hope this offers you some understanding- KBS
 

affected

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Colleen I so hear you on that one!
It was the hardest thing for me to accept during my time as a CALS. Chris wanted me, and only me, to do all his care. He did not understand (and of course had FTD) that even though I could do his care needs better than anyone, it wasn't what I wanted to spend my last months with him concentrating on. So I found that if I have any kind of regrets, it would only be around not being able to just 'be' with him as his wife, rather than 'doing' all this stuff as his carer.
That is just one part of the PTSD I feel we have to work through as well as the grief.

Really thinking of you Lenore 💜💜💜

ARCG that is still such a raw, open, gaping wound. Many hugs to you, we get it!

Sue, what a journey it has been and still is eh? Love you girl

And a last note for Colleen, I did some pretty big camouflage things here when I first joined and my Chris was alive, I get that one too 🤭🥰 So nice to have a name now though. I have kind of stuck with Tillie because it was such a fun joke when our princess warrior Barbie who was a CALS here at the time, named me that. I even had a Matilda kangaroo as my profile pic back then.
 

Lkaibel

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Thanks so much everyone. I feel a lot more “normal” in grieving 2 years out now.

The difficulty of Covid and moving forward- of yes so true!

The anniversary was actually not bad. I did not dive into a plate or a bottle of wine and felt pretty reasonable that day! This is actually a double anniversary time for us since we not only married 4/12/10 but we started out in April 2008, when after our third time out I forgot to leave and go home. I was home! 😀.

We got just six years and ten weeks from our wedding to ALS Dx. What years they were, though and we did have some beautiful times afterwards too. I never felt so close to anyone nor so very loved as I felt in a few of those post Dx moments. All that nestled in the pit of hell that is ALS. Never call it dull....


Yes, Sue you are right and I will give myself grace and realize I am still healing because I am still bleeding. I live him so much and yes that is present tense.

I’ve had some glitches with my upstairs remodel and it will now cost me double. Ironic as it holds the most “loaded” room in my house, Brian’s former man den. It’s okay though, it’s going to be better quality work.

Hey all! I will be doing a webinar panel for Compassion and Choices May 11 (revised from April 22). I will post details closer to the time!
 
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affected

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Hey Lenore, I always find the lead up to any date is far worse than the day itself. Not sure why, but it's been that way for me so far.

I'm so glad you are now past this one.

Please do post the details, this sounds really important.
 

Narrowminded

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I too am always worse in the lead up than the actual day. I've talked to my therapist about it as well. The one thing i keep forgetting to mention to him is the caregiver/spouse good bye that's caught my attention as of late.

Hugs as we all navigate this thing called life, post monster.
 

Lkaibel

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This is the description of the webinar I am doing on May 11th:

“ALS is the second leading diagnosis, after cancer, among individuals who request and use medical aid in dying. This webinar will explore how patients with ALS and other neurologic disorders who may have limited capacity due to muscle weakness are able to access medical aid in dying. Topics include the legal definition of self-administration, possible routes of administration and the role of family members.”

This is with Compassion and Choices. If anyone is interested in attending please send me a private message. Thank you.

Lenore
 

Lkaibel

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I had a lousy Brian day, actually evening last night. After nearly 27 months. I mean, screaming and crying in my car and yelling “why?!” lousy. I. Hate. This. I want to move forward. I want to stop looking back.

The “trigger” was going to meet up with a social group that Brian and I had been a part of together. People I’d not seen in over a year since the pandemic. We were all at a restaurant, sharing chat, hugs. It got me: no Brian. He’s not here.

Socializing like that independent of Brian is something I would have been doing right along, but did not have to confront in the pandemic. In the past year, I saw a few people only and they were people I knew pre Brian, mostly. My housemate was a caregiver for him true, but that just means we went through it together.

This crowd was part of sparkling pre ALS Brian life. His last party. His last gathering too. Many fun events before ALS. All. Gone.

I was frightening myself, alone in car afterwards and screaming at one point that I wish I had died ( I don’t wish that, please don’t send 911). I just felt suddenly like a wounded animal.

I tried therapy. It sucks. Someone asking me how I feel I’m like my mother won’t do the trick. I’m just concerned that all this time later I could get so unhinged.

it did not help that night before last I learned an old high school friend died, just my age last December weeks after getting Covid. Or that another friend with Stage IV breast cancer learned her husband has kidney cancer. Or that yet another friend, a widow with advanced cancer (yes, I know insane!) went to the hospital last night.

I had a GREAT trip to Vegas last weekend. Explored the downtown, went to the Mob and Neon Museums and spent time with friends and just enjoyed. It was great. Brian and I married in Nevada but we stayed on the strip and married in Red Rock Canyon, not anywhere I saw this weekend. Still I was thinking “Brian would love this view!”, etc. I was with a friend and her partner. She was saying to me she’d rather vacay elsewhere. I admit I thought “Oh shut up and appreciate it!” She dragged him on our shopping trip and I thought “ingrate!”

It’s not at all like me to think women friends are “abusing” their men, but losing Brian and looking at him loving on her and her gripes I admit annoyance. Maybe that contributed too.

I need a truly new life. Been trying to make one. Not sure what all that entails, but I need to do it.
 

JimInVA

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This is one of those times I'd really have preferred the Facebook Care emoji... you know, the one with the hugs.

They say "it is a process". I guess to get through the process, you've got to do what you are doing and work through the emotions. It is supposed to make us tougher... but sometimes, I don't want to be tougher. Oh well. We'll get there.

My best...

Jim
 

Lkaibel

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I think my brain is exploding a little because the world is reopening and my husband still is not in it.
 

affected

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Lenore, wish I could send that hug too.
What I feel a big need to say is that your feelings are totally valid. Every single one. Screamingly valid!
Now, step back and try to look at your valid meltdown this way - you released another lot of grief, that's good.
The waves, at this level, are coming less frequently than they did in year 2, and way less than year 1.
So you still need to grieve, there is still a lot of that 'forever gone' loss to process. But it isn't as consuming, for as long, as previously.

This means you will get past this outpouring, and you needed it. It sucked, it felt horrible, but grief is really like that.

I hope you find that new shape to your life. This outpouring may actually help you slightly turn your focus and move another step towards it.

Now I would hug again.
 

Lkaibel

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Aww, thank you both. Yes I’ll get there. It is easier. Today I went back to my garage project and found unopened Radicava, the drug I believe was closely associated with Brian’s final slide. They could not take it back.Poof! Out went this odd remanent of the Beast, Brian’s killer. A sign maybe? Toss it out, toss it out...

im off to put some old clothes from my mom, and a few of Brian’s jackets in a donation bin then in bed super early. I am spooky tired.

Thanks again Jim and Tillie.

Lenore
 
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