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
Related articles
- The Looking Glass of M.S.A. (terry1954.wordpress.com)
- Weekend With An M.S.A. Patient, My Brother (terry1954.wordpress.com)
- M.S.A. and the Old Lady in the Shoe (terry1954.wordpress.com)
- I Am Doing This For Al, My Brother (terry1954.wordpress.com)
- Three Good Days, M.S.A. (terry1954.wordpress.com)
Who I am 
i wish there was something to be done so neither of you have to suffer through this nightmare. i am just holding you in my heart….
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I do what I can, pray for release. Thank you my dear sweet friend, You are the best
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I am so very sorry sweety. I know this is heart wrenching and so very hard on both of you. Hopefully they will be able to make him at least comfortable. Which is what Hospice does for patients when it gets hard is make them as comfortable as possible. I know you hate that he will sleep a lot, but it may be better for him to be able to sleep and be comfortable than to be awake feeling every aching pain and you seeing every tear fall from his eyes and making you feel even more helpless. I do pray for you both and will continue to do so. AT least you got a call from them updating you before he come home so you can be more prepared. And who knows maybe once he gets home to you he will be more at peace and be able to rest. He I am sure misses the dickens outta you! Always in my thoughts my dear friend.
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thank you my friend. I am very thankful they gave me notice. I will be better prepared on how to handle things. I think he will be happy to be back in his own room too. Hugs
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So sorry to hear of this sadness of yours. Our family has been caring for my brother with MSA since July…he seems to be leveling out right now. We sadly anticipate the time when he becomes completely bedridden. God Bless you, for taking such good care of Al. I wish I could come take care of YOU. PS…I love the precious pics of Al and kitty.
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thanks so much Kathryn. Some days I do wish I had someone taking care of me, LOL, but,, we do what we have to do to try to stay a head of this disease. My brother is close to being bed bound and I don’t like that at all
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My father had msa. He went to heaven to be with my mother in January . I’m so sorry and I will be so happy when any break through comes for any of the neuro syndromes. Bless your heart and do the best you can.
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I am so sorry for your loss my friend. There are no words to say, but I pray for a break through also
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My thoughts and prayers are always with you and Al…
*sending hugs*
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bless you Michelle. you are an awesome woman!
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Al’s increasing need of care is also increasing opportunities for you to show him your love and setting an example for all of us. May the Lord continue to bless you through His Word. My prayers continue for you both.
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It is more common now to sit with him and just hold his hand saying nothing
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Oh Terry as happy that Al is coming home it saddens me that you will have the extra job of feeding him now. As far as him sleeping more as someone else said he will rest easier and with less pain. You are both in my prayers of course Love and hugs (((xx)))
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thank you Len! hugs
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I’d never heard of MSA until meeting you, Terry. There really isn’t much awareness. You know I’m praying for you both.
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thank you my friend. I had never heard of it prior either
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I wish I could help.
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If you were here, I would ask for your help in any spare time you had.
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🙂
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And I thought dealing with my mother in laws Alzheimer was bad, at least she did not suffer or remember anything. It was my husband who suffered watching her decline – but I think it helped him knowing she was not suffering…does this make sense? My heart goes out to you and Al – God bless your compassionate heart.
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I so understand Patty. Retaining the memory when everything else is shutting down is not good in my opinion
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I’m so sorry Terry… everything seems eternal for me, too. Having Muscular dystrophy for 46 yrs feels more than a lifetime ! But it will have a peaceful close for Al, that’s what I’ll pray for– that angels encircle him & deliver him to his Heavenly Father ~ Hold on to your friends and your Heavenly Father dear. Faithfully Debbie
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that is the best prayer ever Debbie. A perfect prayer, bless you and big hugs to you from me. You are so awesome, just awesome. You carry a heavy load and yet you are always here for Al and me
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Thinking of you both all the time Terry.
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I always think of you too and wonder how your nerves are
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