A Forum Two in One…

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Lkaibel

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I am unusual here in the Forum I think, at least for someone not experiencing being a caregiver in a family with inherited ALS.

In June of 2016, my late husband was diagnosed with ALS. The wonderful people right here on this forum advised me in his diagnostic process, helped me brace for what we were about too face, and saw me all the way through until his final day in March, 2019 via VSED. I can never say enough about the support and community I found here, eventually meeting more than one member in person (and one just very recently!). They helped me in my grief too, and for that I can also never express my gratitude. My late husband was wonderful and amazing, and I am grateful for each day we had together, even the toughest ones. Like most here, I cared for him at home that last 1.5 years when he was 70-95% disabled. I had home care help because I continued to work full time (a decision I regret in some respects, not in others). In those same years, the last of Brian’s life, my mother declined in a long slow wind from dementia, my 38 year old nephew died unexpectedly, by job blew up, we even lost my brother and sister in law and our two dogs! A long yet short rough ride.

In a remarkable turn of events, my teenage boyfriend, ”D” contacted me via Instagram on my birthday, July 1st Of this year. We were a pair when I was 17 and he was 19. Much to my shock, one of the first things he told me was that he had ALS and was currently at an assisted living in Seattle (I’m in Minneapolis). I was very startled, spooked almost but from that day forward “talked” to him daily via email. D. Was diagnosed in May 2015, and lived in the San Francisco Bay Area for 30 years after moving from Minneapolis. He is an artist, musician, and teacher who can no longer walk or, for the most part speak intelligibly, but has some movement left in his hands and arms. He lived in his apartment until the Fall of 2020, when his sister moved him to Seattle and the assisted living. He worked via online teaching until the Spring of that year, and even drove until 2018. Extremely fit and active prior to diagnosis ( a familiar story) he had had quite a life.

I had originally not even planned to visit D live until the end of October. As we went through our many memories, I found myself again in the 17 year girl he remembered. Yet it soon became clear we had much more to share than memories, and that what had attracted our young selves was an amazing similarity of mind. We were madly in love as kids, separated by a series of mishaps, and quickly discovered that 39 years later, a mature version of that same bond remained unbroken. Visiting live in early September removed any doubt.

Long- short story short, we are having a commitment ceremony on Christmas Eve. I travel 1-3 times per month to see D. The assisted living thus far allows me to stay overnight. I say “thus far” because in Covid reality, we truly never know what changes may come, but so far, so good. Medicare rules do not allow us to marry without my finding an extra 110K annually in my budget, so we are going for the non Official aspect of marriage. I am keeping my job in Minneapolis, and while it would be lovely to transfer Dean to a Minneapolis facility, it is unlikely as little space exists for ALS patients and some of the particulars of his condition now would make homecare extremely difficult.

So, we will continue as we are, as “unofficial” long distance spouses, “going for as long as we can, under the nightfall of stars” to paraphrase the Grateful Dead. Never in my wildest imaginings would I have seen myself starting over with a partner with ALS. When I encountered D. Again, though I knew it was not a “choice” in so much as a simple truth of our souls, us together. I can’t really “explain it”, and guess what? I don‘t have to! I can tell you that I am very much enjoying being a partner and not a caregiver in the usual sense of that word. Sure, we do some caregiving things while I am there but nothing like what I was responsible for with my late husband. Am I am bad person because pushing the nurse call light feels like an absolute luxury? Ditto for watching the hover transfers? Maybe, but I do love D. To bits, genuinely, CALS hats off for all you do! You work much harder than you know now!

Enjoy the holidays everyone, stay safe and warm.
 

Narrowminded

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Lenore,

Your story is so very heartwarming. I wish the both of you the very best in whatever time you have to share.

Being able to press a call button for a nurse is a luxury that most of us never had that opportunity for, you are blessed to have it.

Have an amazing ceremony and enjoy that holidays as I know you will.

Hugs,
 

vltsra

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Lenore, you are a very brave woman. I don't think I could ever go through ALS again. It's heartbreaking. I admire you for your willingness to put your heart out there again. Best wishes to you and D.

V
 

Mary2

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Lenore, I know the ceremony will be warm and wonderful! Whenever I think about your story I think about the story Cynthia Riggs tells on The Moth Story Hour. It is not about ALS at all but she is funny when she tells her story.
 

Nuts

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Lenore, I wish you a beautiful ceremony and much love. I can imagine so many ways that one could navigate the situation you are in, and I think that you are doing it brilliantly. Press that call button and be the SPOUSE. Much love to you, my friend.
 

Lkaibel

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This past weekend, I was with D and I found myself apologizing for pressing the call button, not doing things as I had once done them. “That’s what we are here for!” They said. Truth. On the other hand, I also found myself panicking because D was making a lot of noise, his speech cannot be easily understood, and I had to be rescued by nursing staff. Brian could talk until his last few days - this challenge is new! He uses the Tobii, but reluctantly and occasionally for speech.

Mostly, I do love that little call button. I do love D.’s attitude of wanting to be here, alive. I think Brian pretty much decided he was just hanging out awhile longer about the time he could no longer walk. That was his choice and I respect/ed it. I do love that D. Wants life, even so altered.
 

Narrowminded

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Lenore you are blessed to have that call button. Loss of speech is hard. I can't tell you the number of times I rescued nurses with the speech issue. When you are immersed in it, you learn to understand it. Plus there is also body language that goes along with it, to help you understand.

While I loved that my Brian wanted to live, I also struggled with what I would do in that position. As a caregiver, I knew I could never. be vented the was he was, not becuase I would not want to live, but because I knew the tole it takes on the caregivers.

Enjoy the time you have with D and never be sorry about the bell.

Hugs
 

Narrowminded

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Lenore,

Just checking in, I hope all is well with you and D.

hugs,
 
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