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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- Hello Jan. I have no personal experience either with ALS but I was my mother's main care taker when she had Parkinson's Disease. Watching the falls, and yes she'd fall just standing next to me and there was nothing that I could do, and not being able to stop them was horrible. It's heart breaking and devastating to watch the decline of a best friend. Not only do you have to deal with their feelings but you have to stay on top of yours too. As your husband takes the lead in guiding all decisions that need to be made regarding his care make sure that you talk with him if any seem impossible or not practical. Compromises still have to take place if necessary. Everyone needs to be able to do their best and most.
I'm sure that you have many many questions and I whole hardheartedly agree that you should bring hospice in. They will help with major decisions and pick up any nuances that you and your children might miss relating the his care.
Hospice will also be your support system. I had to have them help my younger sister through my mother's illness. There was no way the I could care for both of their emotional needs.
One thing that helped me was when one of the hospice nurses pointed out that I was a caretaker (loving and caring) but not a healer. I needed to let the doctor and nurses make the decisions that would be best for him medically. Of course they discussed everything with me but this eased my mind and lessened my frustration. It also made me a better daughter caring for my mom. She had also had a form of dementia. Because dementia can be the most trying of all frustrations I made myself get out of the house at least once a day. There is not any way that you can be your best of a caretaker and not have breaks and breaks away from the house. Get outside and breath in fresh air and have the sun beat down on you. Eat clean and well. Cry and yell if need be.
Sleepless nights are certainly understandable. I wish that I could help guide you for the future. No one knows what that holds. If your husband's illness scares you or is making you anxious than I think that researching what to expect will help. If you are unsure what happens in the dying process with ALS please find out. It is a process and not an event during the end of an illness. Speak with his doctor and ask all the questions that you have. Your time for depression will come afterwards and there are plenty of people on Connect to help you through this.
I don't have to tell you that frustration is the number one factor in thinking that you can change things. ALS is not something that will allow this. Support groups are wonderful and we all hope that you will vent and complain all you want on Connect but I think that part of your loneliness is what you are facing you for the future. I am hoping that you do call hospice. You might be taking on too much for yourself. And I agree, that you can't do this by yourself. This care-taking is a very tough journey to travel and being open and honest about what is going on with the best person able to answer that question will help immensely.
This might help you in making a decision about hospice: https://www.compassus.com/for-caregivers/signs-it-may-be-time-for-hospice
How are you feeling today? What equipment do you have that will make it easier for him to get around, unless he is bedridden?
When you are alone with your husband what kind of conversations take place? Can he read, play cards or games?
If during the times that it is just the two of you play music if he loves it or movies.
Please stay with us and let us help you as much as we can. Vent away and complain and yell. Can I help in any other way?

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Replies to "@allegro- Hello Jan. I have no personal experience either with ALS but I was my mother's..."

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...