Winding down

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lindyazmn

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Hi everyone. Life has been so crazy that I've only been able to scan the posts. I have been educated, inspired, and comforted by many of your posts. But I have a few moments of quiet and decided to write. Mostly just random thoughts and reflections.

My husband was diagnosed on May 14, 2020. He's in the final stages now. We were never lucky enough to experience any of those plateaus. It's been a fast and furious march. Hospice has been a godsend. And yesterday, he finally relented and was willing to try morphine. (It worked wonders and he asked for a second dose during the night!) I think that shifted a lot of things for both of us. He just doesn't have much fight left in him. And while I dread life without my beloved, I don't want him to suffer. That's how I feel right now. In five minutes I could well be sobbing in a fetal position again.

I've been thinking and processing a lot about my husband, about our life together, about my life alone, etc. (see "fetal position" above). I've also been thinking a lot about the caregiving experience. Someone here posted about honoring and grieving the relationship that existed (and still exists) before the caregiver/care recipient dynamic became the daily reality. So wise!

And caregiving is hard. It really is. Body, mind, and spirit. It's the hardest thing I have ever done. And it's incredibly complex. Some days I feel like I will absolutely lose it if I hear one more well-intentioned social worker (who has never been a caregiver), family member, or friend tell me I just need to: a) get more help, b) make myself a cup of tea, c) go for a walk with a friend, d) do yoga, etc., e) another unhelpful and ridiculous platitude, etc. If only it were that simple, right? My concern for my husband and his needs are all consuming. What I need is a magic wand to take this horrific disease away and give me back my husband and the life we planned together. Or a million dollars would also help. Short of that, it's just hard to do this and it's hard to move toward the end. There isn't a fix. My body hurts, my thoughts spin, my heart aches. I try to plan ahead, but this disease is unpredictable. My husband has a fussy day followed by a mellow one--I don't know what he needs/wants until that moment. My shoulder and wrist ache and I can't sleep one night, and then I get that critical amount of ibuprofen at the right time and I sleep like a rock the next. Home health aide quality is spotty. Private insurance and Medicare coverage are inadequate. Extended family dynamics are complicated (right?). Covid-19 has necessarily limited visits from friends. And the very broken long term care system is firmly on the backs of unpaid and untrained family caregivers. I'm exhausted. That's all for now.

In solidarity with all of you past, present, and future caregivers.
 

affected

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Walking with you Lindy, my husband was diagnosed May 2013 and gone April 2014, so I totally get it. The only thing I didn't have in the mix was covid.
Solidarity with you for sure. Rant all you need here. Morphine is a blessing though - if you use it, consistent low doses, at specified intervals can do wonders. We used small doses for many months, firstly just at night. 💜
 

JohnHMich

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My wife was diagnosed in May too. I finally have a caregiver that is working out and my friends are getting vaccinated so they are helping a bit too. I have been able to get massages again, which has been helping with the injuries from lifting and transfers. I just try to do the next thing that I can and try not to plan too far ahead. It’s unbearably difficult to know that nothing you do will stop the process. But we have more good days than bad ones. Today the sun was shining, we had a nice lunch at a favorite diner, the hospital bed showed up, and I got a two hour break to sit in Panera Bread. And I got to tuck her in again tonight.
 

Donnaelan18

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You are amazing! Rant and rave all you want - this hard - the hardest illness I’ve ever been exposed to.
 

ARCG

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Lindy, your post expressed what we, as caregivers, experience in this difficult fight, so well. I especially wished for the magic wand many times. The well intentioned advice is exasperating as well. It is an impossibly complex situation for anyone to understand, unless they have gone through it, I found.

As Donna said, you are amazing.
 

vltsra

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Lindy, I've been here 5 1/2 years now. My PALS is very disabled. I so agree that our system forces family members who have no health care training to do all of the heavy lifting.

I've had friends tell me I need more help. We do have one daytime caregiver already. They are often surprised to learn that Medicare does not pay for caregivers.

I had a couple of messages last week from the local clinic social worker that I did not return. Her "help" has thus far consisted of telling me to "be mindful." I don't see much point in calling her back.

We hear you and we get it. ALS just sucks.

V
 

Frances word

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I am right there with you . We did also sign on with hospice . Good experience so far . This is our fourth year and are in end stages . I fight being an angry person regarding others lack of understanding . I have come to the realization that no one can possibly totally understand . This is our and ours alone . People try to be compassionate but at the end of the day they get to go to sleep and wake up not living with this awful disease .
 

lindyazmn

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Yes, this whole push for mindfulness doesn't always apply to CALS. People don't understand about staying in the moment or being present or being mindful when you are doing the back-breaking work and heart shattering grief as a caregiver to someone with ALS. My "moments" are painful reminders of the ravages of this disease, as I wipe the drool off my husband's chin or worry as I listen to his ragged breathing. Yes, of course, I'm grateful he's here and that we've had what we've had...but right here and right now is miserable. That advice is not helpful and it just makes me feel like somehow I'm failing by not adopting some sort of peaceful mindset. There is no peace.
 

Donnaelan18

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So true. There’s no time for mindfulness or much rest. I’d be happy to get just 6-7 hours of uninterrupted sleep.
 
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