Brother needing help
Hi Ellie,
A couple of people that helped my dad after his diagnosed. He was on Medicare, they helped with everything. His regular dr. ordered, a bed that raised much like a hospital bed, physical therapy and speech, they came to his house. Also, through Medicare he had a woman come in 3x's a week during the week not on weekends, that showered him, since I was the only child my dad did not want me doing that for him. Someone was always at his house, most everyday the way the therapy worked out. Not all day but for at least a couple of hours. That helped me knowing those that were qualified could call and tell me if they noticed something different.
I had an aunt that lived close to him and if I wasn't there she was. That helped. I would suggest if at all possible, you could set up times if he has children to go over and sit with him, if he is a member of a church asking those that don't work during the day to come and visit, sometimes it can be a church in the area that would be willing to help regardless of him being a member or not. At least they should....
Lastly, when he gave up trying to live on his on, I moved him in with me, which is what I wanted to do from the beginning. I have to teens that helped me with him at night when they could. It was nice having Papa in the house and good for them to see how to care for someone they loved. At that point his dr. ordered Hospice to come to my house, once that was done all the other therapy stopped and they sent a lady that came 3x's a week again to shower him, and his nurse came twice a week or more if I needed her too. I have read some unfortunate things about others experience with Hospice, I can say they all are not the same. We had a wonderful nurse. My friends that did not know my dad personally, came and brought meals for our family just because they knew it was a trying time. That helped not having to fix food all the time for the family. I tried to make him as comfy as I could, providing him with what ever he wanted. I just felt that was the least I could do.
Once I could no longer move him and care for him the way he needed I moved him to the hospice residence. There he had 24/7 care and I saw him everyday, without the stress of being the caregiver/daughter. My visits with him were that of a daughter. It allowed me to stay with him most of the day knowing medical care was just around the corner. He was there about little over a month before passing. There was not a time when I didn't know how he was, they were very good about that, giving me a report when I walked in or calling.
I had contacted our local ALS chapter and you would think they would have all the answers to what we needed. I will say that was a joke. I will never recommend them for a dog. The reason I say his dr. "ordered" was simply she had to write a prescription to Medicare and Hospice for them to cover the expense.
I can say with all the people coming in and out, there was still never enough. Caring for a person with ALS takes a small army to say the least. I am not saying not to check with your local chapter, yours may be better than mine, as my Hospice was wonderful compared to others. If he is a veteran, check with the VA or also your local MDA chapter.
I hope that helped some, I know we can't give all the answers, I just found that taking one day at a time was best, because when I tried to look into the future about stuff and his care, I just exhausted myself and all around me. I will pray for your strength and his, and that you will make the right choices.
Chantilly