Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease

I’m sorry for your loss. I am caretaking for my husband with ALS. His started in the hands to shoulder and respiratory failure so he is on a non invasive ventilator at home. I read where someone wrote ALS stands for a life stolen and that’s for sure. Was hoping to connect with others going through this ordeal.

Hello @allegro I am late to this conversation and not sure how I wasn't aware of it, but wanted to chime in. As they say 'better late than never'. It is great you have found the Mayo Connect community!

I am Scott and I was the caregiver for my wife during her 14+ year battle with brain cancer. The day to day grind of caregiving is intense and emotionally and physically draining for sure! One of the important things I learned as a caregiver is "Superheros only exist in the comics! Superman and Wonder Woman are not ever found in caregiving". We, as caregivers, can only do what we can and that varies by individual. Love is our fuel, which is better than any souped up, racing blend there is!

I also want to endorse what was mentioned by @debbraw and @colleenyoung about hospice. In my wife's case it was a very important added piece of her care. She had been ill for about 12 years when he prescribed hospice for her. She made the decision to opt for home hospice and in our situation it was a great decision. Hospice nurses were a tremendous help, they got her a hospital bed, meds got delivered, and she got great care. While the doctor said she might live for 6 weeks in hospice care, my wife fought for 14 months. The caregiving was still intense on my part, but it was manageable at a point where there was no way I could have done it alone any longer. In my wife's case home hospice was a great option for her late life care.

I also kept an old feather pillow on our sofa, which when times got extra tough used for a punching bag. I beat on that pillow and cried into it more times than I can count! It served a needed service --- until late one night about 2 am, I laid into it, my watch caught the fabric, cut it, and suddenly I had feathers all over! At least while I cleaned them up I was laughing at myself 🙂

I will only add one more thing -- another quote I like, which I think fits us caregivers. "Courage does not always roar. Sometimes it is a tiny whisper which says 'tomorrow I will try again."

Please feel free to ask me any questions you might have and I hope the sun is shining wherever you are today!

MY THREE CHILDREN HELP ALOT AND THINK I SHOULD CONSIDER A NURSING HOME BUT WE HAVE BEEN MARRIED 66 YRS AND I CANT IMAGINE LIFE WITHOUT HIM HERE

MY THREE CHILDREN HELP ALOT AND THINK I SHOULD CONSIDER A NURSING HOME BUT WE HAVE BEEN MARRIED 66 YRS AND I CANT IMAGINE LIFE WITHOUT HIM HERE

new caregiver, spouse of patient with recent ALS diagnosis, who can make referral to a good therapist that my wife can speak to as she, as expected, is struggling with her diagnosis but needs someone other than me to talk about it, thanks in advance

new caregiver, spouse of patient with recent ALS diagnosis, who can make referral to a good therapist that my wife can speak to as she, as expected, is struggling with her diagnosis but needs someone other than me to talk about it, thanks in advance

@davidbob1023 Hello, David, I’m sorry to learn that your wife has ALS. You said that she would like someone to talk with—I think her best bet is to contact the ALS association which can probably connect her with someone local. https://als.org. There is so much information that you can both read.
I would also suggest that you both stay as active as you can. If you have children, get them involved also. Mayo Clinic Connect can help you in many ways . There may be more discussions. I will find them and add them here. Also, welcome to MayoClinicConnect. You will find great support here.