I just got off the phone with Hospice, making arrangements for his return home. The nurse said today has been awful. He is upset, crying. She and I talked about his medications. She believes it is time to make yet another increase on his calming meds.
We do this every few weeks it seems. Pretty soon Al will be on so many calming and pain medications he will just sleep all the time instead of the 16 to 18 hours per day. It is sad. She and I agreed that his good days are decreasing with more bad days in between.
She told me that starting the morning after he arrived his hands quit having their fine tuning. They have had to feed him each meal. This broke my heart. The nurse said out loud, ” how much longer is he going to have to suffer through this?” I told her I ask myself that all the time.
So now he comes home tomorrow evening and I have one more responsibility added, feeding him. I hate M.S.A. with a passion. I hate how it strips a person of his/her dignity. I hate how the memory is not affected in any way. This way more depression can set in mocking the patient, reminding them of what they used to be able to do.
I hate it so much I could scream out loud, Scream to the heavens, wake the whole country up with my lungs. I wish I could wake up and discover this was a terrible nightmare.
There isn’t enough awareness. There aren’t enough funds. There isn’t much other than research, which is exactly what is needed in order to save a life. But for my brother it will be too late.
Please, don’t let your pennies go into the piggy bank. Put them to good use finding a cure for M.S.A. Give a donation in Al’s name or just to M.S.A. Let’s find a cure before the next loved one lost is someone you know.
Please donate here: http://www.multiple-system-atrophy.org/donate