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Lkaibel

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Today, I am again confronted with the simple fact that I cannot believe that everything we have been to each other is coming to an end. Maybe it’s 8 months, maybe three years but we have already lost much and we will lose more and then I will lose him.

I think of the things I will do after that, how I will cope but I am struck almost daily with the Simone fact he will no longer be here.

I try- and often succeed in living in the moment. I try for myself as well as for him. Then it breaks through again and I am left thinking “Really?” After 18 months I still think that.

For some you did not even get 18 months, for others by 18 months you had/ have a loved one who is no longer walking/talking/eating.

My husband uses a walker and still does all of the above, mind you he will not go out to any social things now and does not drive. He lost some functionality two months ago with the Radicava/Appendicitis thing. So yes loss but I know we are blessed in what he can do.

I went from missing what we had to anticipatory grief for him and for more losses in functioning.
The time before seems like something I dreamed up, I don’t think of it much now.

Anyway, just venting. I will try to continue to appreciate what we do have and not dwell on the rest. What an insanely rotten dicease.
 

affected

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hugs Lenore - I still sometimes just thing "Really?" it's amazing how the shock can still just grab you.
 

lgelb

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There is a balance between preparing for/cushioning the landing of all the losses so that each new one and the final one does not break you, and living life to the fullest while it's there. Being perpetually tired, stressed and angry/grieving at root means that balance is never even.

You cannot fundamentally change how your PALS feels about where s/he is in any given moment. Sometimes, you can offer up more than you thought possible, and sometimes, s/he will take you up on it. Those are wins that you will long remember.

Best,
Laurie
 

Narrowminded

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Lenore I can so agree with what you’ve said. While Brian can do basically nothing he is still here with me. Some days I am thankful and others I think why? What I do know is he says he’d do it over again given the chance, me, I’m not so sure

Laurie is right about remembering the times you “click” thru this horrible disease. For us, this Christmas will be one of those special memories.

Hugs to you my friend,

Sue
 

Larrytbm

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Lenore,
Thank you for expressing your feelings, something we all probably need to do. I know my thoughts are certainly confused. I am so afraid I will fail as a caregiver. And with this flu/allergy season I am torn between staying holed up at home vs. getting out for a more 'normal' life. And then there is how much time (and how soon) do I devote to figuring out the equipment to support each coming issue.
 

Lkaibel

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Click, yes. This was a quietly beautiful Christmas. Meant the world to me just to have him here.
 

KarenNWendyn

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As a PALS, I do very much appreciate reading through posts in the CALS forum as it gives me insight into what my partner must be feeling in regards to my disease. I’m hoping she’ll set up an account and start posting on this forum some day. I do share many of your posts with her.

ALS is very much a family condition. You all make such good insightful points. What a sucky disease, with trying to anticipate what comes next, mourning the losses, and yet celebrating the good times and all the love. Hang in there everyone.
 

Lkaibel

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Today I realized thatI, a native to Minnesota one of the farthest North and coldest states in my country was driving around in -5 degrees out of windshield fluid and without a brush to get snow off my car.

This absentminded oddness plagues me sometimes now. I got to a gas station and took care of things but I feel like I need to keep an eye on myself.
 

Narrowminded

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Lenore you are not alone. I find myself needing more reminders for simple stuff due to everything we need to remember for our PALS and probably the stress of it as well.

Hugs,

Sue
 

wishmobbing

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I hear you on the absentmindedness! Went swimming today (like I do twice a week) and forgot my googles. Doh! Just one of those tiny mistakes I noticed piling up, but nothing like your close shave with winter's reality. Take care of yourself!
 

Larrytbm

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Today I realized thatI, a native to Minnesota one of the farthest North and coldest states in my country was driving around in -5 degrees out of windshield fluid and without a brush to get snow off my car.

This absentminded oddness plagues me sometimes now. I got to a gas station and took care of things but I feel like I need to keep an eye on myself.
Lenore, Another one here with the same problem. I try using an app on my phone to jot down minor things that need to be done. Later I go back and fill in which day of the week for each one. That helps me get those secondary things done before they become a crisis.
 

Lkaibel

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It’s funny, but lately I just have no words. Heck, I even talk less. I am focasing more on life than progression and death. We have a clinic coming up Thursday and now I really wonder what the point is? We walk in here living life as it is and walk out with more on progression and death. The ALS society does much make re for us than any Doctor.

Happy New Year to all, whatever that means to us. How about wishing a good and peaceful day instead.
 

affected

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That's exactly what we have always said here - take things one day at a time and be grateful for whatever you have today and celebrate and appreciate that!

We only ever went to 2 clinics, but we did regularly see an excellent physician and our GP for basic needs. We had an OT who would come to the home and work with us on equipment needs and strategies.

Do what you gotta do girl, this is your life, and your PALS life.
 

Lkaibel

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The OT that did come to our home after Brian’s hospitalization did much more for us than the clinic OT. She was in our home environment with him and it really made a difference.
 

affected

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Definitely - they have to be inside the environment and working with your own actual equipment.

Maybe you can find a way to build your own team around you that you can call as you have a need, rather than attending when you are told to?
 
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