Tag Archives: Coca-Cola

5 photos, 5 days, 5 stories

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This is the 4th day of the photo challenge Vivi gave to me. One more day to go and then the fun is over for this.

dad 6YOU

 

I’ve thought a lot about you

Especially this time of year

When normally we’d party

And put on your birthday gear.

 

Your birthday came and went

No smiles could be seen

No mention of your name

Although you know you are with me.

 

I went to the store today

I bought some flowers of red

The same color as coca cola

Now I’ll lay them at your head.

 

I miss you brother dear

I’m jealous they all have you

I know you are the party

In heaven for all you do.

 

I love you still dear brother

Happy Anniversary for 1 year of being free of Multiple System Atrophy.

Love, Terry, (Sis)

Don’t forget your promise to save a spot for me.

 

Beautiful Christmas Cards From Wonderful Friends MSA & WordPress

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It is the season to be joyous. It is the season to be with friends and family. Being in my home most of the time I never dreamed I would spend the Christmas season along with Al, my children and so many friends from the MSA Facebook sites and WordPress.

I wish I could somehow express myself in other ways for how thankful I am for you sending Al and me these beautiful cards. But alas, the only way I know is to say a big thank-you.

I was just at the hospital visiting Al. They are still adjusting medications. The doctor, Hospice and I are all involved with his care.

It was very stressful to my heart as I walked down the hall to hear my brother calling out.” I’m on fire, I’m on fire. Please Lord, I want to die.”

I walked in and he was no different from when he was here at home. Before I left the nurse was giving him one of his pain pills.

Al expressed to me that he was going to stop eating. If they didn’t give him a shot to let him die, he would starve himself. He did eat 25% of his lunch while I was there. This is about the most he has eaten in a few days.

I had them weigh him since I haven’t known his weight in a few months. He has lost another 17 pounds. All together at this point he has lost 62 pounds.

Yesterday the Hospice nurse and I had that conversation which I posted about last evening. Today, she has changed her mind. She said Al is declining. The doctor said the same thing. They believe a lot of it is his attitude. I tend to agree but only because the pain is so high.

I told them I want him to go to sleep. I told them to listen to me and hear what Al says. I explained how I felt about his quality of life all over again. So far all they are doing is adding one more pill to the two that he already takes.

I know it takes time to see if this or that works, but I can barely deal with hearing those words come out of his mouth. He is just plain miserable, there are no other words for it. I have to wonder how I would be feeling if it were me laying there with MSA. I may be wanting to die too.

It brought me some comfort that all of them listened to Al say the words he was speaking. They could not blame his remarks on my tiredness any longer. I think it opened up their eyes that he is serious. To him this is no game nor is it temporary.

I told the doctor if he can get Al comfortable, that this is my only wish for Christmas this year. He gave me a hug and the nurse gave me a hug. I didn’t want the hugs, I didn’t say what I did for any reason other than the truth.

Maybe because so many families can’t or won’t care for loved ones they are in awe of my involvement. I don’t know the reasons for anything anymore.

I don’t know what makes family refuse to call, text, or turn their backs on situations like this. I don’t get any pleasure out of going through this alone. All I know is that when Al passes I have no guilt to carry.

Caregivers go through so many emotions. So many questions as to why things and people act as they do. But I do know one thing for sure. I have a huge, huge support group through MSA and here at WordPress. Believe me, I could not have done this thus far without the strength that you have given to me.

Always remember that I will never forget those phone calls from MSA patients. I will never forget all of the Christmas cards from those that were once strangers but are now a part of Al and my life. The gifts that Al has received and me also are priceless. I want to thank Marilyn for the wonderful gift package she sent and I received yesterday. It was definitely a surprise, a nice one. Not only have you driven all the way here to meet us, you have forever remained in Al’s mind with the coca cola hat. Now on top of all that you have done for us, you send us gifts. Bless you for being the woman you are.

I pray with all my heart that Al is here for this Christmas, but if he isn’t, I know he will be looking at the brightest star on any tree. I know that he will be standing beside our parents, and I know without a doubt he will be smiling down at me and standing by himself totally free of pain.

I hope all of you take a moment and thank who ever it is that you thank, but do it, be grateful for that grouchy family member. Be grateful that your parents are still alive, or that those noisy cousins were sitting at your Christmas dinner table.

I have three children. One is definitely going to be here. One will not and the other has never let me know anything. So for this Christmas I will give thanks that I can breathe. That I can see and touch and feel. I have so much to be thankful for and believe me I will be giving my own personal thanks to God.

I want to thank;

McGrandma Paul from NC for a beautiful silver angel card.

Sandy R. from NC for Al’s coca cola bottle ornament. He is loving it.

The Culbreth Memorial UMC Children’s and Youth Choir, NC. A lovely card signed by Nolan, Ethan, Austin, Hailey, Reagon, Elizabeth, Cailin and  Jennifer.

Lucy D. from VA for the beautiful Christmas wreath card.

Pam Bower, from Canada. Pam is one of the most important people in MSA patients lives. What a blessing that I have come to know her.

Ron and Carol D. from NC, what a beautiful Christmas tree and fireplace.

Thank-you all for making Al and my holiday much brighter. You are all truly angels in our lives.christmas tree 4

 

The Journey Continues

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With the sleep I stole yesterday through the day it didn’t bother me too much getting up with Al through the night last night. He and I had many conversations during the evening and the middle of night.

I could clearly tell that Al  has made peace with himself and the world. When he did sometimes look me in the eye I could feel a calm staring at me. It has been so odd lately this week.

With Al being a massive routine person it seemed strange to no longer turn the fans on for him. At times he has asked for the TV to be turned off. It seems that silence has become his friend as his mind ponders on his life.

I only interact with his personal thoughts when he has asked me. I feel it is a very private process and I have no right to interfere. The night before we discussed his Grandma who lives in Florida. We also talked about an aunt who resides in Florida also.

There is pain in memories that Al and I both have carried for a couple of years now. I have forgiven the harsh words, and have moved forward; but when Al brings it back up I can feel a sting return.

I didn’t know how to handle it, since we could not go to Florida so he could speak to them in person. So I became the third person, repeating Al’s words to God that Al said and doing it out loud so he could be sure that God was getting his messages.

It seemed by the time we both found sleep he had come to an inner peace. He had also brought up last night that he wished he could say good-bye to family members. This part hurt me terribly and I can’t help but add I got a little angry.

The people who Al mentioned I have already previously contacted and let them know that he was reaching out to them. I have tried my best to get people in Al’s life to understand that he may be mentally challenged but not stupid. He misses people and has hoped that he would get those visits.

Al only has issues with comprehension, other than that he knows who his family and friends are. He also realizes who has not contacted him in some way and then he cries, telling me he did something wrong. I can do no more for him on this topic unless I want to get on bended knee to those and beg, and I refuse to do that.

Last night Al said he thought he was done with everything that was important to him but for one thing, the will. He said he needed to make a will. I asked around for a video recorder but I never located one.

The next best thing I could do for him was to take pen and paper and let Al write his own will, with me doing the writing. I know that it would not hold up in a court of law, but it was sealed and complete in Al’s mind.

He told me about his coca cola collection. Who he wanted to have certain things. He talked about his vintage car collection. He had been obviously thinking about this very much because he had me write down his clothes, dresser, TV, shelving units. Just about everything in his room was added to the will and separated.

When he felt he was done I read back to him what I had written and he felt content with it. I drew a line and Al signed it. I had silent tears running down my cheeks and all I could do is reach out and rub his arm and his fingers.

He talked then about the ladder to the sky and the little lights he was seeing. I told him that if he decided to leave during the night to always remember how much I loved him. I explained that I would never forget him and reminded him how special he was to me in my life.

He wrapped his free hand over mine and started to cry, but I heard clearly through his tears saying to me, ” I love you sis. You are the best sis I have ever had.”kids sleddingpurple candles100_0749

Right Now

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Right now I am starting to get Al’s clothes packed once again as he will be going to the Hospice house. He is no better and I can barely think. They, the doctors and nurses are going to tell Al he is going to be termed as bed bound.

I didn’t have the heart or the guts to take a way what he has left. But the truth is he can no longer stand, or rarely, and his body is tired.

I am torn up inside. Hospice says Al just can’t take anything anymore. They feel the only way to help him is have him bed bound so they can medicate him enough to stop the tremors pretty much. I just don’t know. I just don’t know.

The words do not come easy                                                     M.S.A. logo
As I am choking up
My brother is going to leave
Me and tears shall fill my cup.

The silence of when he is gone
For even a few days
Gives new meaning to what is ahead
I can not even begin to say.

For although I hate M.S.A.
I know God has a plan
This is Al’s ticket to heaven
All we need to do is hold his hand.

The tears fall so easily
They pour as a flowing stream
My heart is cracked in fragments
Because this has shattered my brother’s dream.

He wanted to go to Atlanta
Where coca cola is made
He was invited by the president
But the plan was never laid.

And now I must accept
That one day he won’t be here
But I know that he will be in heaven
And his pain he will never fear.

Written by,
Terry Shepherd
Al’s sister
09/16/2013