No tears as disease progresses

[Finndoodle]

My husband of 32 years was diagnosed with Bulbar onset of ALS in May of this year. He has severe pseudobulbar and some slight form of dementia. Am I horrible to say I dont really cry anymore??? I mean the first few months I cried CONSTANTLY. EVERYTHING would set me off. I was sad ALL the time. We are 6 months in now, and he is no longer the man I was madly in love with. I dont mean physically, thats not what i mean, but personality wise. I mean he is a shell mentally of what he was 6 months ago. I feel like I mourned him early on but now I feel like Im deep in survival mode. Trying to navigate uncharted waters every day and never knowing what the day will bring. He stills spends some time at my son’s house as he is still ambulatory and when hes not home, I feel like life is what it was like BEFORE. I can almost forget this is all happening. It’s so hard when hes home and watching the decline daily. He is now on an NIV and event the noise bothers me sometimes. I have all the feels…ANGER, FRUSTRATION, yes COMPASSION, but rarely cry anymore. I always thought we would grow old together and since I’ve had T1 diabetes most my life, I though HE would take care of Me. Have I already moved on from the grief I was feeling at the beginning?

 

[JAM]

Been with my husband 40 years, married 30. I’m still at the crying most days stage. Dx 2 months ago. I think you need to show yourself grace & kindness. There is no right or wrong way to feel about our situation. It’s awful. Give yourself permission to feel whatever you’re feeling. Each of us will have our own emotional journey, everyone’s is different. It’s hard enough without putting the additional pressure of guilt on yourself thinking one way is acceptable and another is not. Message me anytime.

 

[lgelb]

I would only worry if you were still crying every day.

We all feel grief that we express in other ways, hopefully in purposeful action part of the time. You don't want to bottle it up, but you don't need to cry it out.

 

[Danyashmanya]

My husband age 71 was diagnosed with respiratory Als in May 2024. His mind is fine but his breathing is not. He is progressing faster than we hoped. I am not coping. I stopped crying a long time ago. You are not alone in this. It is horrible. Every day i wake up, face the challenges of the day and they are numerous and often unexpected, go to bed, if lucky sleep because i am so exhausted and do it all over again the next day.

Lots of love. It does help me to know that i am not alone in this.