Melodie's thread

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Dec 2, 2021
My husband is dying. I cry every single day. People tell me I need to be strong but damn it, this sucks. I try really hard not to cry in front of him. It's very hard because he's very depressed and has lost interest in everything. I keep telling him that he needs to utilize his body now while he can, but it doesn't help. He remains to sit around and do nothing. How can I help him without getting angry at him for being so negative? I know that a negative mind accelerates this nightmare. I have no idea what's going through his head as he doesn't really express how he is feeling about all this.
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Hi Melodie6220. The diagnosis is a tough one and your PALS may still be in a state of shock about the diagnosis. Spending quiet time with him with hand holding may be the best you can do for this next while. Antidepressants do help. PALS and I both take them.
My PALS doesn't express his feelings much either. Try to take an interest in anything he does have the energy to take an interest in.
Sometimes utube videos can help. You have to have something your interested in to bring a video up, but they are good because they are not time consuming and don't take energy.
Oh Melodie your feelings are so valid and this stuff is real.
You do have to be strong, but hey you find your way through this too.
Sometimes, crying with your PALS is therapeutic for you both - he may find he can give you a little comfort, and maybe even say a little of how he is feeling if you let your own feelings known.
It truly takes time to adjust to what this diagnosis means, and then you realising you are constantly adjusting.
I agree that antidepressants for you both are a wise move - both my PALS and I took them. For me it stopped the feeling I was constantly screaming in the back of my head. Every day was still hard of course, there is no magic answer.
Start your own thread here if you like and use it as a way to work through and vent about how this is affecting you. I could not have made it without the support of other CALS, it can make a huge difference.
Hi Melodie,
You don't need to be strong for anyone but him (and if he sees tears in your eyes occasionally, that is not a bad thing; I'm sure he has or would want to shed some). And you can stop listening to the outside voices that don't matter. The two most important ones are your own, guiding you as to what is right, and his, that of course comes first.

Guys have a hard time accepting life-changing illnesses as it is -- and ALS is its own species.

If you continue to show your husband without pressure, that you are ready, willing, and able to undertake any adventure or diversion he might want to try, whether a 4-minute video or a walk in the park, he is more likely to act on what he feels are his own ideas. It has only been a couple of months, and I'm sure the holidays were tough.

Going a step further -- I would try to forget the phrase"being negative." For some, withdrawal is part of the process of living before dying. It is a way of protection, of giving up expectations, and being less hurt with each loss.

Though there is much life left if/when he wants it, that has to be his choice, as does when/what he shares about his feelings. Leave him the white space for listening to whatever he can say in words or otherwise. I truthfully don't remember my husband talking about ALS, per se, past the day of diagnosis. So if that day of sharing never comes, it doesn't mean you can't have a rich life past today -- it may be more one less-planned-than-before moment of shared experience at a time.

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Melodie, this diagnosis is impossibly hard. I cried every day for so long. Antidepressants have helped so much for both of us. For years, I tried not to cry in front of anybody. But now I realize that I need an outlet for my emotions. And you do to. It can be anybody you choose: a therapist, a support group, a family member, a friend, the people in this forum, whoever you can talk to honestly. But once I started to open up to a few people in my life, I found things are easier to handle. Don't try to do this alone.
As someone who is in the same situation as you, I feel your pain deeply. My own husband literally cannot talk about his recent diagnosis without his voice strangling in his throat. I have had to learn to give him space and to trust that if he wants to talk about it he will. Speaking to a counsellor has helped me.

He seems happiest when we watch TV and eat some junk food after the kids have gone to bed.
Just trying to find normal every day life moments where we might be able to forget about this for a bit.
One thing that somehow is getting me through right now, is the idea that I can’t change this situation but I can change how I react within it.
It’s so hard though.
I spoke with a dear friend who lost her husband to cancer and she said “this is a warrior path” it’s a path we never wanted to walk, where we get to find out how strong we are. She also said stay out of the past, stay out of the future and try to stay in the moment as much as you can.
There are no words that make this better, there is no fixing it, just ways that we can cope to get through each day as it comes.
There are no words that make this better, there is no fixing it, just ways that we can cope to get through each day as it comes.
Perfectly said.
I would only add that I found it helped me to concentrate on advocating for whatever Chris wanted. Often I did not agree with his choices, but nothing was going to cure him, so ensuring he was respected to make his own choices really helped me, both as a CALS and afterwards.
That is a great point Affected. Advocating for my husband has been one way I have been able to feel like I can at least do something. By educating myself and presenting him with options to choose from, I’m finding I’m able to alleviate some of the feelings of powerlessness when faced with this disease.
Melodie, I feel such sorrow over your situation. Hope is a difficult concept to grasp with ALS at times. The miracle will be through science. I agree with "Affected," finding an anti anxiety med really helped my sister and I. Over the past year there have been so many new findings and discoveries. This isnt the beginning, researchers are building confidence. Keep fighting for more time
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