You Must Be Curious

M.S.A badgeM.S.A. coverM.S.A. logoAl and Rhino, Nov 1I have had so many new visitors lately. Word sure gets around when you are speaking of illness.

I am so grateful for all the support I have received from each of you.

Today just has been pretty bad. Al started during the middle of the night with terrible nightmares, that lasted until 9am this morning, so I have been up a long, long time.

He has had terrible tremors, so much sweating I have had to change his bedding several times.

Forget the house, it looks terrible but today, I don’t care.

He refused food at all until about an hour ago when he ate one small doughnut with great struggle.

Hospice spent an hour here. Medications were once again changed, some taken a way, more added.

He has seen Rhino hanging upside down from the ceiling. A conversation and discussion was taken up with the doctor.

It was related to me that now that we are in the ending stages, hallucinations are going to happen. Not from the medications, but from the brain being so messed up with connection problems.

He has been on his light more today than any other time. Sometimes just to tell me he is done, or he is tired of fighting, that he wants to die. Other times it was because he was seeing things that were not there. He asked me what blue thing was flapping in the air and I finally figured out it was the blue TV screen.

He has slept little, he has been hot, cold, hot and more cold. Sweaty, dripping, swimming, you name it, he has been wet on his entire skin all day.

Rhino the cat is going nuts in his own way. He tries to comfort Al but Al doesn’t get it or sense it.

For those of you who have not been with me very long, I wanted to share what M.S.A. actually is. It is rare, about one in one hundred thousand people get it. Many doctors do not recognize the word.

Please read if you are at all curious. All of the symptoms stated, Al has.

32 thoughts on “You Must Be Curious

  1. Hey, what’s that ? Ppl is visiting you not due to any possible illness. But because they’re sincerely concerned about an important friend of them.

    Get well, friend. And stop thinking you’re not important to all of us, your friends.


  2. I am sorry this day has been so difficult. My mom had hallucinations her last weeks in the hospital. She saw cups of water in the bed, or pills on the bedspread. She also thought dad was sitting in the room by her. It is hard to know when to explain it away and when not to. Good luck to you as you work so hard to care for Al.


  3. Terry my heart foes out to you both. My mother had hallucinations in her last days, she smoked cigarettes that were not there, flicking ashes and all,she ate food from her bedspread that wasn’t there and oh so much more. I am here for you, you have my number if not it is on my blog. Love and prayers.


  4. Terry , it is good you have so many friends who share your pain, still it is only you who sees Al every day , changes the bed and washes him and sees him really struggle. For us it is only how we can imagine it. You have it much harder. Wishing you strength and Al an easier time without pain. We love you Terry and we feel with you! Holding your hands Terry, Love you!


    • Ute, you are the best. So kind and understanding. Patient with me with my not so pleasant posts. I know that I can be so weak at times but I keep trying to stay on top. Thank you for being my friend


  5. Terry, I added you to our prayer list in church a while ago and yesterday with our womens group – you and Al are being wrapped up in Gods love – Like Ute said, we love you both and we are all here for you and Al – all of us holding your hands from across the world. {{hugs}}


    • Patty, I have no doubt that my life and Al’s would be more chaotic if it weren’t for the love and support of you and everyone’s prayers. God is good, but I am in favor of God giving Al rest at this point. Hugs my friend


    • Is it wrong to say that sometimes I worry more about me too? I try to be so patient and understanding but my nerves are pressed even more when he wakes up through the night, taking a way my sleep. Without sleep I am not in as good of spirits. Hugs my friend


  6. Terry, you wrote this one way back on Nov. 2—I’m still catching up!—–and he’s gone way beyond what anyone expected, I think. I believed he would be gone by now, but apparently it’s just not his time yet. I don’t understand why, either. The only thing I can think of is that God knows neither of you is really ready to let go yet. You know I’m praying.


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