It is Thursday evening,7:30, and all is quiet. I feel like I am waiting for a package to arrive and maybe I am.
I have had some information for a week now but was waiting until I could tell you about it until I knew I wouldn’t break down half-way through the post.
I will say first off that anyone who prayed for Al and me and the situation about Hospice being involved did a great powerful job of praying. The prayer was answered. Hospice is going to be involved all the way.
The hours have been split between Hospice and the Day Care program. Al will have his bathing and dressing done between all of them. He will have 24 hour nurses at his door. He will be checked on regularly.
He even gets to remain active out in the community. I thought this program would end once he came home, but God wants him to be as happy as possible, so it remains.
I had the meeting with the State, the Day Program and the facility this morning. It went well until the administrator spoke his mind. He was considering not letting Al be dismissed because of the pressing debt we owe this place.
I was torn in pieces. My brother wants to come home so bad and yet he still owes over $3,000.00. To have to tell Al that he could not go home was enough for me to want to run and run and run. Just hide, never to have to see Al’s sad face and tears galore. I couldn’t deal with it.
Instead I spoke up and told him what I thought and what the Ombudsman thought and I told him that I would be following the directions of the Ombudsman, and that he would release Al tomorrow as planned or I would call the State back right here in the office in front of all.
He smiled that wicked smile, and then said I better make sure that bill is paid. I have 11 days left if anyone at all would like to make a small contribution. Any amount is helpful. The address is
I won’t ask again as the time for this fundraiser is almost expired. I want to thank all of you who have already helped and I want to apologize for asking one more time for help.
At this time, the hospital bed, wheelchair and lift chair have all been delivered. I have his bed made and the door is remaining open to open the room up some.
Excuse me while I choke a little. I told myself I am not going to cry. It is just I get tired. Tired of fighting everyone to get what Al deserves. Tired of the family that is left that never comes to visit. Tired of fighting the system, tired of the nursing facility, tired of seeing bottles and bottles of medicines and tired of sad news.
The news that I learned last Friday was not good. Al has another diagnosis on top of his Parkinson’s Disease. It is called M.S.A. It mimics Parkinson’s very much, but there are changes that happen that can place it in detailed form.
So many things have fallen into place this week. Why Al sweats so bad, why his illness has progressed so quickly. Why he cries more often than not. M.S.A. attacks the spinal cord plus the central nervous system and messes with the electrical system. His heart doesn’t know how to beat properly. He can have heart beats up to 300 per minute. The sweating is involved. Depression is very high. M.S.A. stands for Multiple System Atrophy.
I didn’t realize that the doctor had faxed this new information to the facility this week. I couldn’t figure out why so many were coming up to me and patting me on the back offering, I am sorry’s.
Then someone told me they knew. They knew what I had been running and hiding from. They knew that Al’s life had changed. Now I know for sure why Hospice is involved. Now I understand why Al is coming home on this precise date. M.S.A. has a much shorter life span, and the news that I had to listen to from the doctor was, Al will probably not be here in six months. I want him to have everything he needs to be comfortable. He will end up aspirating from this. Food will go down into his lungs and this will take his life. I want you to have nurses around the clock for you to utilize.
These words still haunt me a week later. Life is going to be the best I can make it. For Al and for me. I am going to make a new memory out of every single day he has left. God knew all along what was going to happen. His plan was perfect.
So from here on out, it will be all of you, Hospice, Day Program and me, and I will get through this, because God knows I can do it.
Each day I will carry hope, faith and friendship until the very end.