Haunted

[Lkaibel]

The second anniversary of Brian’s death, 3/13/2021 came and went. March was a surprisingly wretched month for me.

I drank a little too much wine, ate a few too many deserts and bust out crying telling the housemate that Brian died motionless from the neck down on the floor he had laid 5 years earlier, overlooking the garage and shed he built.

Therapy annoyed me and I canceled it. I’m okay without it. I don’t need to answer questions like “in what ways are you like your mother” (who passed in November) to deal with this. I actually say out loud to people that I am ready to move forward. I am. I’m still in love with Brian though, no less than when he was here. I still hurt over what happened to him and to us.

I am not where I thought I’d be by now. It’s not“over” as I truly see what I thought I knew, that this stays with me for keeps. I think my “goal” at this point is to reach a deeper level of peace with what happened.

I’m doing a webinar spot for Compassion and Choices on 4/22. ALS is one of the premier conditions in the Physician Aid in Dying movement, almost as much as late stage cancers. I respect it is controversial in the ALS community. The local chapter likes my story.

I will definitely be doing the webinar but unsure how much longer I continue to do the work at this time. I’ll see how the webinar makes me feel.

I had a long conversation with a woman from the ALS Society here and she said for a LOT of people this disease is a different sort of grief.
She lost her 63 year old mother to a brain tumor and her 67 year old father to ALS after five years with the disease. Brian tumors are no cakewalk, but she said the ALS really grabbed her and the whole family in another way. It’s grief upon grief. By the time your PALS passes, your grief is already compounded by all the daily/weekly/monthly loses of ALS you’ve already been through. Cancer etc can be similar but it’s virtually always the case in ALS.

Takeaway for us former CALS, yes you are going through something “different” and moving forward is going to look different.

I resolved that this was the last year I would Mark 3/13 as special. I resolved that Monday, 4/12 our wedding anniversary I will work it and treat it like a regular day. I resolved that 5/15, the 71st birthday Brian is not here for will not be a day of mourning. Am I pushing myself to hard? Maybe. It’s been two years and life is for the living, I think the best way to honor him is to truly move forward but it’s definitely not easy sometimes.

 

[JimInVA]

Lenore - To me, it sounds like you have made excellent progress. In little more than a week, it will be 6 months since Darcey died. I love her as much, if not more, than I did when she was alive. I think I always will. But I know that there is still much room in my heart to love again, one day. And I know that it was something that Darcey hoped for. Yet, for the moment, I'm still quite content with my wedding ring holding its proper place on my left hand.

I find that I'm annoyed when asked on a form if I'm Married or Single. I'm neither. Where's the "Widowed" response that I'd find more correct and appropriate. I cry less often when thinking of Darcey... and I'm able to identify the precipice of falling into that deep hole of sadness. Most times, I'll stop and hold... or pull back. But there are times when, though recognized, I allow myself to fall fully in. Fortunately, I'm now more able to climb back out when I need to. I believe that is progress.

If possible, I'd love to attend your webinar on the 22nd. My son and his best friend are kidnapping me and taking me to the condo for some "fishing, feasting, fun and foolery". We'll be there on the 22nd... but I'll have my computer with me. I will understand if the webinar is not an "other public" invite event. I'm impressed with the fact that you've been able to do these kinds of things!

And now you are setting goals. I've begun to think about such things... but have not made it to the point of actually locking them in. I still have a PWC, two hoyers, and two low pressure air mattresses that I need to donate... but haven't. Maybe I'll do that when we get back from the beach. Maybe... still thinking about it but not doing it. We'll see. Your setting of goals encourages me to follow suit.

Thanks for keeping us linked to your progress. And thank you for the little piece of heart that you give to all of us through your continued sharing. Keep on keeping on!

My very best...

Jim

 

[affected]

Hi Lenore,
I never talk about this with current CALS, but the grief after is HARD and it takes a long time. There is no defined length of time, but I run a couple of widows groups and we commonly find year 2 is harder than year 1, anniversaries SUCK for many years, and we go forwards and backwards. And all of that is normal.

The goals are great, but go easy on yourself. Grieve how you need, that's not always how you want, nor how you think you should be able to.

I always feel that when it hits, it is because a bubble of grief has risen from the depths and needs to be acknowledged, experienced fully, and then it is dealt with. More will come. They will lessen with time, they will be less intense. Maybe that will be this year, maybe not, but with time you will continue to heal.

The webinar sounds great, do all the things your heart draws you to. Treat yourself like you would treat your best friend.

I so hear all that you are feeling

 

[Weltschmerz]

It is strange to find myself in your company here after a year or so of clicking into the "current caregivers" section. I really appreciate the resource on this forum because I have been feeling quite alienated from more general/generic grief information and advice. I feel like I was grieving from the day of the first loss, right through to the final days in February. So the point about compounded grief resonates and is actually a useful framework for me to be able to think through - and talk about - what has happened. That's what it comes down to for me: sometimes I wonder what happened and whether we fell into some sort of hole in winter 2018/19. I was recommended a book by Denise Riley called "Time lived, without its flow" and while it's a tricky read, the idea that time takes on another meaning also struck a chord with me. Perhaps it can be helpful to others.

 

[lgelb]

I think the ability to grieve for the dead is a prerequisite to actually living in reality. And if I lose track of reality, what purpose is there in living? So I'll take the grief with a side of remembrance, bitter and sweet.

Best,
Laurie

 

[Lkaibel]

Thanks Jim. I’m so sorry you’ve lost Darcey but as with Brian glad she flies free and has your love. Yeah, love present tense I know!

I’ll see about webinar details!

 

[Lkaibel]

Thanks Laurie. Yes, like life itself bitter and sweet.

 

[Lkaibel]

Thanks Tillie! We just don’t know until we get there ourselves, do we? I will indeed treat myself like my best friend. How perfect

 

[Lkaibel]

Thanks W. I’m glad the framework of compound grief resonates for you. Naming abs recognizing things in this spin-y process helps I think. I’m sorry for your so recent loss. May the happier memories be a blessing.

 

[Jrzygrl]

Lenore,

Sorry to hear that March has been so tough. It's been 19 months for me. I didn't do therapy. We both tried it while my husband was here and neither of us got much from it. I find myself now having bad days, or sometimes just part of the day. I'll allow it to an extent, but I'm trying not to let it take over my life. It's an on-going battle for me.

I already know the next few weeks will be tough for me. Both my birthday and our wedding anniversary fall in April. I'm hoping with the weather starting to break, that I can find stuff to busy myself with so that the days won't seem so long.

I have spoken to one of the nurses at my husband's clinic about working on a project with them. Something like a "Things I learned as a CALS" to help the caregivers for those newly diagnosed. I hope I can pay back some of those who have walked this road before and with me by passing on what I've learned.

I hope you find a way to honor your special days. I will be thinking about you.

Sending hugs!

 

[affected]

Jryzy, it is a surreal world 'on the other side'.
I ran into an acquaintance yesterday, he used to be a neighbour when my kids were at school. He wife died last year, and we chatted a few minutes. I wondered if I looked like him during year 2, I'm glad I don't really have photos of myself.
This is just my rambling - I found that year one was more shock, sorting everything out, sadness and getting through. Year 2, for me, was more a coming to terms with the finality of the loss and it was a deeper level of grieving.

I hope you can move through these coming weeks without the bad days taking over.

I have found huge comfort in helping other CALS. It isn't the way for everyone, but if it helps you and others, then it will truly be a gift.

Thinking of both you and Lenore

 

[Lkaibel]

Jrzy, It’s wonderful to be able to give something back. “I’ve seen this room and I’ve walked this floor.” The ALS Community is a great place that way. It’s one of the first things I want newbies to know. You’ll never meet a stranger among CALS and PALS.

Thanks Jrzy, thinking of you as well.

 

[jonico]

Hi Lenore,

I just want to say that I very much relate and I truly hear you. Wishing you peace and hoping you continue to find beauty amidst the very understandable ongoing grief! Your love for Brian always shines through in all you share and I firmly believe his love continues to shine back on you. Hoping 5/15 this year is a day that you experience Brian's presence with great fondness and as much joy as humanly possible. Thank you for sharing. Take good care...Jon

 

[Lkaibel]

Thank you Jon. Yes I do feel him all around me.

 

[Narrowminded]

Lenore I totally relate to everything you have expressed, including loving them more now. I often wonder how that is possible, but those who have walked this path know it is true.

Year 2 was definitely difficult and we both did it with Covid on our backs as well. I'm positive that contributed as well. Any chance we may have thought we had of moving forward were pretty much squashed and it almost required us to live with and deal with our grief. We could not busy ourselves with others to try and push it away.

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.

I'm hopeful you will be able to stick to your list of what you are and are not going to do this year. Please though if you don't make it, don't beat yourself up.

Also, as to therapy, you might just need a different therapist. I love mine and he doesn't have me compare myself to others. He genuinely cares about what I am feeling and works to help me work through that.

Hugs