Hold on Tight...

[Lkaibel]

So finally we get the Trilogy tomorrow. It’s been a journey.

The thing on my
Mind on the moment though is my major CALS fail. I was attempting to leave the house for a few hours. That can still happen with everything in place. The miracles of the smart home stuff, the favevthst he can speak to Siri and Alexa and still get a drink thanksvyo the gizmo, and do on.

We don’t do it for any long period at all but it can be done.

Well. I was feeding and medicating and readying everything and he got stuck on something with the phone, insisting this and that did not work when it did, just generally feeling fussy. No doubt because he was a little anxious he’d been fussing all morning about this and that.

Well, I finally think all is settled and I get to the garage and he calls me about one more thing. I went into the house and started yelling and crying. Just say there and sobbed.

I fixed what didn’t need fixing, left again, called 10 minutes later to apologize, cancelled my original plan and felt terrible. He’s mad at me and I get it. I just had the wellspring if trapped sad angry frustration at this poor, dying man I love. So I failed him
Miserably.

That drama done, I still have to bring my mom clean stuff at the nursing home now. Or rather, the person who use to be my mom is what it feels like ever more.

I did all this stuff this weekend my husbands care, work (that was great times yesterday on the phone, pipes melting and freezing and busting all over at sites) and then I wreck it all in an epic fail.

Hopefully he forgives me, and I never lose it st a dying man who is the love of my life again.

 

[affected]

What a major human moment. As if in a magical world you would be this perfect, bright, shiny, gorgeous, slim, always clean-and-tidy Mary Poppins and whistle your way through every trial and even burst into song about birds and sugar by the spoonful.

The harsh reality is that this disease is the dirtiest beast that erodes into every single part of both of us.

Please don't pile guilt on top of a perfectly normal reaction to the worst situation in the entire universe. You are an amazing CALS but you are not the almighty, yet you are a shining super hero indeed.

Love you girl xxx (ps Brian knows in his heart all that you are)

 

[lgelb]

Lenore, there is no failure here. There isn't a CALS here who hasn't or won't get pulled under. These waters are just too deep for mere mortals. Brian knows that at some level, you can be sure.

And so you can never wreck anything you did that was right, least of all masterminding plumbing repairs, it is all still there, everything you have done. He may not be in a position to fully appreciate it, but that doesn't mean that you can't.

Go easy.

 

[Jlynn]

Well said Tillie and Laurie. Go easy on yourself Lenore. Your doing a great job.

 

[Lkaibel]

Brian forgave me. Thanks everyone. It’s been a day.

 

[Narrowminded]

Lenore I have done exactly what you did more than once. Sometimes I think it helps our PALS to see we are human and that we are struggling just as they are but in a different way. None of us are perfect. You do a huge job and do it well day in and day out. You are an amazing CALS. Brian knows it. Please, please forgive yourself.

We are all here for you.

Love you

 

[Jrzygrl]

I am right there with you, Lenore. I have been struggling big time lately to keep it together. This is so hard. I love my DH to pieces, but sometimes I am beyond frustrated with everything. Yesterday, I looked in the mirror and did not recognize who I was. I think I have aged 10 years in the last 5. Hang in there. Hugs!

 

[vltsra]

Lenore, I'm not yet in your situation but fail miserably as a CALS nearly every day. I say the wrong thing, don't do enough, and make mistakes. We CALS are human. You are a wonderful CALS and I'm sure Brian knows that. Now that he has forgiven you you need to forgive yourself.

V

 

[pittsburghgal]

Lenore, I'm sure every CALS has felt that they failed their PALS at some time but it is impossible to face this beast day after day and be your best self every minute of every day, as much as we try. You are an amazing CALS and Brian knows that.

Jrzygrl-- I also feel like I have aged 10 years in the past 5! I often wonder if this continuous stress is shortening our life span.

Sharon

 

[Jlynn]

10 years was the number of years I had aged when I looked in the mirror as well. The beast can ravage the CALS at times as well. ALS sucks! Hang in there Lenore. Your doing great!

 

[NothingButLove]

"wellspring of trapped sad angry frustration"

What a great description. Sadly, I know exactly what that is in the context of being a caregiver for someone with ALS. It's when the combination of stress, depression, physical fatigue and mostly lack of sleep take you to edge. I remember waking up for the third time one night to take my wife to the bathroom. When I put her back in bed, we would go through this whole routine to make sure everything was perfect. However, despite my best efforts and everything seemingly OK, she indicated it wasn't. After a few minutes of trying to decipher the problem, my wellspring of trapped sad angry frustration overflowed. I got real short with her and manhandled her into the recliner. I remade the bed from scratch and manhandled her back into bed. She got the message and indicated everything was fine whether it really was or not.

Next, I wake up in the morning with instant remorse. I apologized profusely with my head hung low. I then proceed to spend every second of the day massaging her feet, back and attending to her every need with loving care and patience. She forgave me right away.

So yea... that happens. Fortunately, that was the only time I directed my frustration at her. (everyone else was fair game though)

Hang in there Lenore. Everything's going to get better soon! (encouraging statement/blatant lie) Haha... There's some wry CALS humor for you. But in all seriousness, take care.

Rob

 

[Lkaibel]

Brian woke up night before last scared because he thought he was walking around in the basement near a black hole, and he called for me. He came to, realized he was still in bed in the living room.

Tonight he told me he is weaning off of politics. In Brian’s world, that is truly his life force ebbing away. He is quieter, sleepier, minimally involved.

I am not sure of course if it will be two months or four, but I can feel us coming ever closer to that time when to quote a poem my Uncle wrote when my Grandmother died it will be “Not goodbye but a long goodnight” for us.

My sense of desolation floats below the surface all the time just now. What I want so much is for all this to not be. I want to take his truck we sold and go up North for a few weeks and stay in one one of those beautiful houses we use to rent with the two beautiful Pomeranians we also lost in the past 1.5 years and I want to hear the waves from the lake and drink wine and be us again. Then after all that I want to come back and talk to my cold, intelligent mother. The one who likes cats more than people and is smart as a whip and can talk rings around anyone. She is gone too.

“Us” for a well matched couple is more than a relationship. It’s a world you make together. Our world is gone even while he still lives. My mother is largely gone while she still lives, too.

I WILL snap out of this. In the end, none of us has anything to do but put our chin up and our boots on and go forward. Cope, deal, do, go...

Just now though I need to sit and cry, and somehow that is sometimes a big luxurious indulgence.

“ I sat with my anger until she told me her name was grief”.

 

[affected]

Lenore it's so important to know that your grief is real, your loss is all you have described and should be acknowledged. You are suffering and it should not ever be minimised xxxx

 

[Buckhorn]

Oh Lenore, I am so sorry. And I know all so well what you are going thru. Maybe not perfectly, and maybe your day to day existence now with Brian is not the same as it was with me & Dave, but I do feel and recognize your agony. The Beast is one of the cruelest things imaginable. To this day I still kinda find myself at times asking myself ..... "What in the hell happened? HOW did this happen to my strong, resilient, strong husband"? I too found myself longing for what we were, but I pushed those thoughts out of my mind most of the time ........ as I knew those days were gone forever. As Tillie says, your loss is so very real. Love to you Lenore!

 

[Narrowminded]

Hugs Lenore - after just walking this same exact path, I know exactly what you are saying. And I still want that, I miss that. This disease is so very cruel. I wish it wasn’t so, I wish we could have those times again to be us. Please know you are not alone, ever. I know I’m here for you as are the other here. Take your time to grieve.

Love you