Wife not into what's best for her

Depression will sap her energy too of course. Re telling if too much I find it is trial and error. I can tell now if I do x it will take y time to recover. It is also a moving target. As we progress it takes more energy to do less.

If she is depressed and not taking antidepressants hopefully she will consider one. She may say and rightly so she has every reason to be sad. She can still be helped though if there is depression beyond normal grief. I know one pals whose neurologist prescribed riluzole and an antidepressant at diagnosis! I don’t believe every pals needs them ( I don’t take them) but many do benefit from them. Many of them do interact with nuedexta though. If she isn’t having bulbar symptoms or emotional lability though then she wouldn’t need it yet
 
My husband was always the go getter. Doing everything and making me live during our 28 years of marriage instead of me working all the time. When he was diagnosed i thought he would be a fighter.

Instead he lost his vocation and his sense of purpose.

And he has chosen to let the disease take its course.

Despite me and my son needing him.

We are just not important enough for him.

It is hard to accept. I have done everything i can think of to change things. However i cannot force him to be what he is not.
 
I am a kindred spirit to you and it is wonderful you are putting in effort. Rest assured she sees it.

Accompany her. More important than what you do is your loving presence and sharing with her. It is a wonderful gift to her and a gift for your heart you will treasure forever. Hope this helps.
 
My heart goes out to you and your wife, I know the pain you both are experiencing. How long ago did the official diagnosis come in? I ask because there is so much, (as you know) to grapple with when hearing the diagnosis ALS. I was diagnosed in March 2025 and I am just now coming out of the fog of grief, and some days it again hits me all over again out of nowhere. Like you, my husband dove in and armed himself with understanding, knowledge, and what he/I can do to give me the best quality of life. At first, it was information overload and I simply could not cope with it. Now, I am embracing what I need to do to feel better, my husband & family are so supportive. I give myself grace if I have a day that it all just too much to deal with. For example, just 2 days ago I wanted to pitch the bipap across the room it was causing me so much frustration and tears!

I also understand her fear of what lies ahead, that is a really scary place to go. I too could not go there, it caused too much grief. I did one virtual support group early on which caused intense grief seeing all the lovely people in various stages of the disease process. I was not ready for it then, but now I believe I can handle it.

I can attest from experience, I feel so much better when I use my bipap everyday (still have not mastered it overnight). Exercising and walking allows me to take my mind off of ALS, even if only for a few hours!

Best of luck to you both.
 
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