I Am So Honored, A Nomination For Being A Caregiver

A company called Wego Health has just informed me I have been nominated for an award for best of show.  I didn’t know much about it so I read more information.

Evidently this company reads my blogs and they feel that I am an advocate for patient care. They think I do a good job in caring for my brother. I don’t know what if anything happens from here. Even if nothing, I am quite humbled and honored to be nominated period.

I just wanted to share what I found out. I am so proud that M.S.A. is getting noticed by my blogging.

WEGO Health

WEGO Health


A different kind of social network built to support health bloggers, tweeters, & community leaders – Health Activists who help others.

Boston, MA · bit.ly/wegohealth

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.


Born Free

Al has been in Hospice House                                                            baby after bath #11

For three days

I am anxious for him to come home

I miss him in so many ways

But while he has been gone

My body and mind are no longer three

For I feel I have been born free

My thoughts are brighter

My smile is back

I want to jump and down

I feel back on track

This must be what respite means

Regenerating our souls

Ready to tackle another day

When I once again take on a caregiver role.

Written by,

Terry Shepherd


Not Again, So Soon?

Well here it is. That time again, the day I dreaded. Al’s tremors and heavy sweating are back. Al is crying saying ” the medication didn’t last long did it? I am ready to die. I accept and I want to die.”

I wonder if he is reacting to me saying yes against my better judgement on going to the day program. Although that was Friday and today is Sunday.

He woke up complaining of tingling in his arm. I don’t think it is serious. I believe he may have slept on it. It was not working for a while but it is now.

He ate breakfast but refused lunch. He has been in bed all day. Refusing to get up. The Hospice nurse is on her way.

You all say I have strength. Well the well is dry, and the mind is tired. The body is frustrated. Let’s hope the nurse has something to say.tears

I Can’t Get Through This Without Your Support

This morning I met the Hospice nurse at Al’s Day Program. He was not a happy camper. butterfliesHe had wet through his clothes and he was highly embarrassed about this. The nurse checked his vitals and his blood pressure was quite high.

We left him crying. I felt terrible but I knew that the nurse and I were a reminder of what illness was doing to him.

When he got off the bus tonight we ate. Once again he didn’t eat all of his supper. I believe that three times including the weekend he ate about half of his meals. After supper and stripping his shirt off, brushing his teeth and taking him to his room, I took off his shoes and socks because he wanted to nap.

When his feet were exposed I looked at them, ready to help him get in bed, and I saw something that made me tell him to hold on. I went to my own bathroom and threw up. beating heart

It isn’t that I am sick but instead sick at what I saw. I remembered back to the visit with hospice this morning and her telling me Al’s heart is so weak. He could go at any moment or hold on for several more weeks.

When I had looked at his toes each of the nails were dark gray and the foot was total purple. His nails at supper I had noticed were grayer than usual but I said nothing. I don’t speak to him about my observations unless he brings it up himself.

When I came back he was already asleep. I woke him and helped him get in bed. I took his hand and squeezed it firmly. I looked him straight in the eyes and said, “bud I just want you to always remember one thing.”flashing star

He asked, “what?”

” Always remember that I love you so very much. You are my baby brother.”

He said, ” I know.”

Then I rolled him on his back and he drifted back off to sleep.animated-candles1.gif