Hold on Tight...

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Lkaibel

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Then lose it in the car!

My mom is in a nursing home I need to get her transferred to another ( not urgent, another story I just dislike the place muchly). Brian is progressing because ALS moves just one way as we know. Next up is more homecare hours, next up is the simple reality that this ride is getting harder and harder as we knew it would.

So, Friday night I hit the liquor store and the grocery, I am driving along and start crying and yelp out something like the following by myself in my car;

“Why?! Why?! There better be a reason for this. I could have lost anything else, anyone else. You expect to lose your mom, you expect to lose your dog. You don’t expect to lose your husband, God not like this, why like this?! Why not ten more years? Why?!”

Then, I was quiet, made it the other few blocks home. Walked back in the house, put booze and groceries away, let the tears dry on my face. Having successfully lost it for a bit and compaired Mom loss to dog loss ( yea I know) and asked a question for which there is no answer I was ready to get back to the work that my home is now.

Today I called my own living room “over there”. Odd, but true. Earlier in the week I said I had no words. I found a few. So it goes.
 

Jrzygrl

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I have no words either. Bad day for me too. Big hugs. Hang in there.
 

KarenNWendyn

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I’m so sorry Lenore.

I lost it today too. Maybe there’s something in the air :-( .

Hugs
 

Jlynn

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Oh Lenore, my heart breaks for you. You have had so much on your plate all around. As if ALS isn't enough!
I think Karen may be right. It's in the air. I went to visit my brothers grave yesterday for the first time this spring (the snow bank finally melted) and cried for the rest of the day. His 48th birthday would be on May 11 and he and my mom shared the same birthday. Being the first since he passed it's looming large. I thought about the booze but I looked so bad physically I didn't go get any. It was so surreal to see his name etched in that stone I had a good "why, why, why" cry/conversation with myself as well. There really never is an answer to that question is there?
 

JimInVA

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Lenore,

I understand how you are feeling more than I wish I did. You remind me that I am not alone in this. And though I wish you were not a fellow participant, I appreciate knowing that I do not share this alone.

My best to you...

Jim
 

Narrowminded

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Lenore I’m sending big hugs. I have had many of those convos with myself over the years. The most recent being this past week as the nurse issue again loomed large overhead.

No worries about comparing Mom to dog. What you speak is truth. At our age, losing parents is expected and when our pets age, much faster than we ever do we expect that as well. But we do expect to live with our spouse to a ripe old age. That’s what stinks and makes this doubly hard.

Please know you are not alone.

Hugs,

Sue
 

Lkaibel

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Thank you everyone. In our two years with this beast, I have learned that there are times of quiet, if not quiet acceptance at least quiet reconciliation. Those are the times it simple is and we simply cope.

Then we have times of anger, of mourning. This week has been one of those times. Today my husband was talking about the Namicagin river area with longing. Not a longing to “see it” again. A longing to kayak, to camp, to hike... Today he said “I hate this existence”. We talked a little. I told him I love him and I hope that helps. I said I hope it helps that I support him no matter what.

Today I hate this existence too, but I never say that. Tonight I’ll pull out the grill, do what he use to do, enjoy the weather and feed him a little steak. Maybe by then I’ll feel better, or however I feel in a day, an hour, a moment we will keep on until the end of this tale.

Is it awful that some says I look forward to the end of this tale - it must be a tale because it cannot be happening to us.

It does not matter if it is awful. It’s true, just like the beast is truly with us. I judge less and accept more now. It just is.
 

Jrzygrl

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All I can say is "Ditto", Lenore. I am on the same roller coaster.
 

KimT

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Lenore,

I'm sorry about your mom and I'm just so sorry that you and Brian are facing this ALS crap.

I understand the feeling of loss. Last week I went to the beach and it was nice. It was really nice. I wore my bathing suit and water shoes. I had a chair. I watched the people running, walking, and cycling up and down. I decided I would walk. I think I probably made it 1/4 mile, then turned and walked back to my chair. Then I took off my shoes and just put my feet in the sand. It was so hard not to cry but I was there with a friend so I just stared at the ocean and tried to appreciate the day and my friend.

For many years I lived alone yet I was never lonely. At the beach I was not alone but felt very lonely.

Prayers for you, Brian, and your mom.
 

Narrowminded

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Lenore it is not awful for you to look for the end of this tale. I do as well at times. My guess is if every CAL was completely honest most of them have done it to now and them. Please don’t think less of yourself for it.

Hugs,

Sue
 

Lkaibel

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Thanks everyone. Self pitying thought on this Spring day;
“The sun shines but not for me”... Two. years of walking this walk, waiting for the next shoe to fall. So many here have been at this so much longer.

At least I can walk. He can barely, walker to toilet and that is about to end. I want us to get about living and think less of dying. There must be change in a positive direction for us in attitude because we cannot change circumstances.
 

KarenNWendyn

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It’s really scary to see that happen and know there’s nothing you can do to fix it. From reading your posts, I’m about 8-12 months behind Brian, so I’m always interested in reading what you have to say.

It sometimes feels like a one-way journey down a dark tunnel at a scary amusement park ride. I’m sorry we’re all on this ride together.

Just know that you are a caring and loving spouse/ CALS, and that will make his journey a little easier.

Finding humor when we can and savoring the sweet moments will get us through.
 

Jrzygrl

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I want us to get about living and think less of dying. There must be change in a positive direction for us in attitude because we cannot change circumstances.
I'm beginning to think you're reading my mind, Lenore.
 

lgelb

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For PALS who have completed your advance directive, PoA and Will, doing so, while annotating it with a little verbal affirmation with your CALS, frees you up to get on with living. The mentality can be, today I'm not dying. The legal foundation is in place. I can do whatever I'm up to today.

As the CALS, if your PALS isn't in that category yet, I would hold it out as a distinctly superior alternative. It may seem like a small thing, but moving past the denial/anger/sorrow that not having done those things represents can be a big thing. And having done them can save a lot of physical and mental pain.

Note --I'm not talking about "what music do you want at a service?" If you've lived with someone, you can handle the playlist yourself. That might come up at the end, or not. It doesn't matter. The big-ticket prep items matter to both of you.

Do the prep that actually counts. Then move on with life. Do everything you can, until you can't. Don't make the last years one long prep talk [pun intended].

Best,
Laurie
 

Jhill

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Oh Lenore, just hugs. Everything about this is heartbreaking!

Joan
 
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