← Return to Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease

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@debbraw

@allegro – My heart is just breaking for you. My husband has dementia – probably moderately severe at this point. Even though I don't have experience with ALS, I know how difficult caregiving can be and how badly it hurts to watch the love of your life face a series of heart-wrenching losses. This is especially true when there is absolutely nothing you can do to make it stop. My husband was diagnosed in 2015 with Mild Cognitive Impairment. Obviously, at this point it has progressed substantially. This year I joined a Caregivers Support Group at our local Council on Aging. I learned that one of the services our local hospice offers is grief counseling for caregivers. Today I met with the hospice therapist for the first time. I wish I had done it sooner – both the support group and the therapist. I'm wondering what kind of support services you have access to? Trust me: You CANNOT do this alone. The hope I could offer you is to find a support group, seek out a therapist/counselor, start looking at the care facilities in your area – even if you won't need them for awhile, and find out what hospice can do for you. All of these things can bring peace of mind. For the first time in a long time, today when I was walking outside after the counseling session, I saw that the sky was blue. I felt the breeze. And I thought "I'm glad I'm alive. It's not the life I meant to have, but I'm glad to be here right this minute." Sometimes I believe that's all we can hope for and today it was enough for me. Can you tell me more about when your husband was diagnosed and what kind of help and support your have?

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Replies to "@allegro - My heart is just breaking for you. My husband has dementia - probably moderately..."

Hospice is a great idea, @debbraw. Hospices offer many resources and service for families and support caregivers. Thanks for the reminder.

debraw….My husband was diagnosed in August of last yr and has since fallen 13 times…..he has cut his face, needed stitches on his head, but thankfully has never broken a bone….but each time I live in dread of his breaking his hip or whatever….I have four children who are wonderful in helping with his care, but I am the one who is alone 24/7 with him, and I am slowly losing my mind….I hate seeing the once strong , powerful lovely man deteriorate into a bag of bones who weighs 139 lbs……..having lost 50 …..I have Home Health who comes twice a week, and I do appreciate them so much but it's the times in between when I am here with him that are so heartbreaking…..there are no support groups in our area for ALS and I feel very alone….I can't put him in a nursing home as I don't think I could bear seeing him there among strangers…my kids feel we can keep him here at home as long as they are all here to help..but I have may sleepless nites filled with anxiety…….thank you for writing……..I appreciate it so much…..jan