Loss and grief

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starente15

Senior member
Joined
Oct 27, 2014
Messages
809
Reason
Lost a loved one
Diagnosis
10/2017
Country
US
State
NJ
City
Northern
My PALS is starting to experience the realization of not being able to do things they were able to just a few months ago. How does one even go
About this, especially when the losses
Will continue ? I thought counseling or speaking with others who have experienced this would help.
 
For me. I try to find other things I ca do. Before all this started, I spent a lot of time in my wood shop making outdoor furniture, custom cabinets, and Art Deco items when I wasn't working. Sometimes take off on my motor cycle and just cruise the back roads. Now, I spend a fair amount of time on FB helping friends work through their troubles and in general trying to lift their spirits and encourage them to keep going. Plus on here several times a day
 
Dalvin I think it's great that you spend time uplifting others. What a wonderful way to spend your time. I wish my husband would get in touch with other people, but everyone handles it differently. As a CALS I find it so helpful to speak to others and visit the forum. My PALS on the other hand doesn't want to see or speak to anyone, even if they are in the same situation as him. It makes it more difficult for me as we are so isolated from everyone, but I don't want to force him because he has so little control left in his life. It can be a difficult one as everyone handles the loss and grief differently.
 
>I spend a fair amount of time on FB helping friends work through their troubles and in general trying to lift their spirits and encourage them to keep going. Plus on here several times a da


this is why many like you so much! As do I :)
 
In some ways we never quite adjust to the constant loss and associated grief. It's so hard, both for you to sit helplessly watching, and for your PALS to accept, knowing there is only more loss to come.

My Chris was rapid progression, so we seemed to see more little losses every single day.

I also found much relief from that grief by coming to my family here and giving support and realising I was not alone.

A good counsellor can help a lot. Friends aren't always so good as they don't really know how to handle the huge amount and range of things we feel in this situation.
 
My husband doesnt want to go out in the neighborhood for fear someone sees him. He will go out if we are away from home or sit in our backyard though. He does lov eto have people come to visit...even to watch a ball game, hockey, etc. My son and I invite him when we take short excursions. He does however appreciate all the insight you all offer on the many problems we encounter. He wont come on for whatever reason but sends me to look for answers, ask questions, etc. I think in part its because he is losing his hands..

My son and I see a counselor but he also.wont go there...says he doesnt need it. I think he would be surprised. Said I didnt need anxiety meds either. Last night we were talking and he said he hates what this disease has done to our family. Not that I like it but at least we find ways to cope. I worry more about him because he doesnt get out so much.
 
He has been angry lately because he cant reach for things, pick up things, says he feels useless. He greatly fears being paralyzed.
 
i was always working with my hands. all the up till i last them. i had a lot going on at the time. had a house i was putting together got far on it at the time. the boys took me there yesterday so i could see it. bad move there, i hate looking at things i can't do any more. the boys said they will try to get time to get it done for me. i asked why. i gave them everything i said i don't need it any more. my son david he said he was going to go all over the city and take pic's of everything i have done.

i got a lot of friends on fb try not to talk to them any more about this als. when i did i lost some of them. but that all right we have a place here. just wish we had a like we can hit.
 
My pals used to coach little league baseball . He loved working in the yard. Even in the winter. He would snowblow paths in the yard. Lol. He worked on our house. Built decks...put on our roof...built sheds. He painted rooms..laid wood floors....he did all his own repairs. If it broke he fixed it. If he didn't know how, he learned. Now he can't do any of it. It bothers him greatly. Most of the time he watches tv and is on his computer. He doesn't come on here because he thinks it's sad, but he's glad that I do. It is extremely helpful.
 
Thanks everyone. He was so active even just six weeks ago. I can't begin to imagine how hard it is to adjust to this "new normal" without much notice. You just feel so helpless.
 
>He has been angry lately because he cant reach for things, pick up things, says he feels useless. He greatly fears being paralyzed.

I can relate!
 
I so totally relate to how people are coping. I used to be very social. Now much less so. I have to fight isolation if only for the benefit of my wife. I am embarrassed that I have become so weak. I want people to remember me as I used to be. Also I can't keep up with conversation due to lack of breath. But once I force myself to get out it's not so bad. Some of it is inertia. I also miss a lot of the gusto for living I once had.
 
i think we all lost that of living. you only can take one day at a time and what it takes. it's good you have your wife there. i don't know what i would do with out my wife.
 
:evil: I can relate...I just feel angry & pissed off and I'm still early to the "party". My tractor has not been started for quite a while because I don't Want to know I can't get on it. It sucks! Hard to find laughter lately...sorry for so down, bad day.
 
SusanSt, the last time Chris got on the tractor it took 2 men to get him on and off ... once on it though, he could grip the steering wheel ok and with it in low range and 4wd he felt so much freedom, like he never felt in a wheelchair.

I think that when PALS isolate themselves, due to all the very valid reasons being talked about here, it is so hard for the CALS to take the isolation too.

Schmid describes it so well - getting past the inertia. I know that often Chris enjoyed company once they arrived and things got started far more than he would have admitted to me. Sure it is easier to just say no and stay isolated in some ways, but then in other ways, surely it is actually good for everyone, and maybe helps with the loss and grief if you think about it.

I found that because Chris's kids stayed away a lot, they were often shocked when they would finally come after a month or more to see the amount of progression. I always wished they would come every week or at least 2, so that they got more time with him in the early stages and were being eased in to the progression more.

Sometimes when people stay away for a while (either because they stay away or because PALS isolate themselves), it's even harder for both to get together and see how much progression may have happened.

Exposure is the best way for everyone to deal with, and get used to what is happening together. It's easier to see people if you get used to seeing people if ya know what I mean.

my 2 cents
 
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