Old 08-05-2018, 09:32 AM #1 (permalink)
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Default A Sad Day

Those of you who have kids probably remember at some point jokingly saying "I can't remember life before kids."

Today, as I was loading my DH in the sling and moving him in the Hoyer to the toilet, it hit me like a load if bricks - "I can't remember life before this wretched disease."

And it's no joke. I can't stop crying.
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Old 08-05-2018, 10:50 AM #2 (permalink)
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Default Re: A Sad Day

I agree, each day it gets worse. The days run together and it seems like forever. Yet it wasn't that long ago things were 'normal'. Hope you can put those feelings behind you soon and smile.
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Old 08-05-2018, 10:58 AM #3 (permalink)
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Default Re: A Sad Day

I am sorry I remember that feeling well. The worst part was not being able to remember my mother and sister when they were healthy. I just couldn’t no matter how I tried. That part does eventually resolve and the healthy memories become predominant.

I also remember feeling permanently broken. That will pass as well

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Old 08-05-2018, 01:27 PM #4 (permalink)
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Default Re: A Sad Day

Sending you an understanding hug. It is a point all CALS reach and one of the many cruellest sides to this disease - it consumes us in many ways too.

I feel your pain. There is healing, but at the moment you just need to know that how you feel is valid. This is in front of you 24/7. I hope you can find that place of being there with him, without it taking you down.

Certainly get it out here if you can, it does help reduce the pressure just a little xxx
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Old 08-05-2018, 02:22 PM #5 (permalink)
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Default Re: A Sad Day

It is so hard, I know. We can only hope that the good memories from before will supercede the difficult days we face now. My pals also decided no invasive tube or vent. The day they completed DNR paperwork was very hard for me but he is very at peace with his decision. Thinking of you.

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Old 08-06-2018, 04:44 AM #6 (permalink)
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Default Re: A Sad Day

I’m sorry. I still can but try not to because it hurts too much.
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Old 08-06-2018, 05:39 AM #7 (permalink)
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Default Re: A Sad Day

Lenore, just do what ya gotta do girl xxx
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Old 08-06-2018, 07:29 AM #8 (permalink)
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Default Re: A Sad Day

I perfectly understand this feeling. I lost my husband already a year ago, but in all my dreams with him I struggle with his illness. I can not dream about him before ALS. It is so sad...on the other hand I lost my dear dad this year too and he died from cancer but in my dreams I see him young and healthy. ALS definitely mark our lives
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Old 08-06-2018, 09:58 AM #9 (permalink)
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Default Re: A Sad Day

I hear you, Jrzy. My dad recently gave me a framed photo of me and my PALS as a gift. The photo was taken on a holiday before dx. Itís a nice photo- we look so normal, sitting on a bench together with his arm around me. It made me so unbearably sad.
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Old 08-06-2018, 04:06 PM #10 (permalink)
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Default Re: A Sad Day

Jrzygrl - I can totally relate. It seems like 2 different lives almost. I know that feeling all to well. Sending you big hugs.

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Old 08-06-2018, 05:40 PM #11 (permalink)
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Default Re: A Sad Day

I still remember but it makes me sad so I try to just focus on what we can do today.
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Old 08-06-2018, 06:43 PM #12 (permalink)
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Default Re: A Sad Day

Echo the feeling ,
. Everything seems to be grey. Sky's not so blue.. friends are gone. No visitors ..
jrzgrl .. take a look at the poems I wrote on here. They might help u. Helped me writing them.
Im so sorry. Living it everyday. I've always said..longevity is not your friend with this disease.
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Old 08-06-2018, 08:02 PM #13 (permalink)
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Default Re: A Sad Day

I do know how it feels. I see our pictures of skiing and others from vacations and I can’t remember how it was! My husband has FTD as well, so he doesn’t really communicate anymore. I wish we had taken more videos him so I could still here him speak. I only have a few plus his voicemail.

This terrible disease just takes over your life completely. People like to tell me I just need to get some help. I know they mean well, but it’s not that simple.
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Old 08-06-2018, 10:22 PM #14 (permalink)
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Default Re: A Sad Day

My pride and joy possession - a huge, beautifully framed wedding photo (we were married a year before bulbar symptoms started), became unbearable for me to look at. It is carefully wrapped in a blanket in a cupboard. Those incredibly strong hands at my waist, just totally undo me. Even now, more than 4 years after losing him, I would weep uncontrollably if I were to look at them in that image.

I can look at other wedding photos on my computer and give a sad smile.

I find that when I am around Chris's children (who stayed away as much as possible as it was 'too hard to see him like that'), they talk of the person he was and when he comes up in conversation we can all laugh and remember things and it seems easy enough. But alone, well I looked after him alone, so alone the beast that is ALS/FTD takes over so many of the memories still. I guess that is why they stayed away, and told me several times how glad they were that he had me to take care of him. They have retained seeing him as he was before ALS by not seeing the full horror that is ALS.

But I do have enough of the good memories, and at times like when I am doing things outside I may come across a bit of concrete we put in place, and I see the heart with initials in it and remember the carefree, silly, romantic man who had to record something about our love in every possible way he could think of.
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Old 08-07-2018, 12:30 AM #15 (permalink)
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Default Re: A Sad Day

I realize this thread is in the caregivers forum. However, it raises important ideas for me as a PALS. I thought Iíd share my perspective.

ALS is a series of functional losses, each triggering an emotional reaction. As one more or less adapts to the functional loss, activities one could do previously but not presently seem like they occurred in another life. The contrast is sad.

ALS is a family disease. CALS not only have to deal with their PALS functional losses and emotional reaction, they also have their own emotional reaction. Plus thereís the ever-present undercurrent that their loved one is going to die from this experience.

Itís sad for me to think of all the things I could do a year ago or even a couple months ago that I canít do now. I vacillate between feeling nostalgic and feeling downright sad and angry. My CALS tells me she grieves for the future which is not the one we had planned.

One thing thatís kind of helping me remember my past life and tip the scales a bit more towards nostalgia, is that Iím starting to journal aspects of my life with the idea of possibly assembling it into a book. This will also be a memoir for my CALS to have when she canít remember our pre-ALS life. We also talked about setting aside a few moments each week where we share joyful memories of shared times.
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