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Amyotrophic Lateral Sclerosis (ALS) Lou Gehrig’s disease

Caregivers | Last Active: Sep 30, 2023 | Replies (107)

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@allegro

Your letter has already helped in so many ways...I know I take on too much responsibility but I feel that he is not able to and it's my job as his wife...…...for better or worse.....and believe me, some days it can't get any worse.....He is a very stubborn man who refuses to believe that ALS is going to beat him...he is still able to use a walker but falls often,,,,,when I am alone I can't pick him up and have to call someone to help...

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Replies to "Your letter has already helped in so many ways...I know I take on too much responsibility..."

@allegro- This is why I suggest you call hospice, because he'll listen to the nurses. My husband refused to acknowledge that he snored- for well over 30 years! There is nothing like a stubborn patient! Has the doctor been frank with him and explained everything to him?
Who do you call when he's fallen? I get the responsibility thing but can you turn some things over to your kids? There is just so much that you can do. If he gives you grief about it just try and convey that you can't handle it all and that he will have to compromise.
Is his walker sturdy with a seat if he needs one? How do you get him into bed or out in the middle of the night? There are a lot of practical things that a hospice nurse can advise you on. When you call them they will meet with you and you can talk over things. You don't have to sign up. Will you give them a chance? Make a call?

Good morning, @allegro . It must be so difficult to care for someone who has ALS. Have you received any training on how to help him help himself get up when he falls? Is he strong enough to help himself? When you talk to either hospice or a homecare organization, ask about a Hoyer lift. We used them in the hospital whenever we had to help someone move—it’s a 1 person piece of equipment. Please take care of yourself.