A Valentine Gift From Me to You

A VALENTINE GIFT FROM ME TO YOU FOR YOUR READING PLEASURE

Carol was in a wheelchair. She was living in one of the nicer nursing homes in her hometown. Her children lived less than an hour away, and it was alright with her. She wanted to be close to where she grew up. This old town held so much for her.

Memories of her growing up on the big house on the hill, just outside of town. The big oak tree on the circle, where her husband Bud had proposed to her. The boarded up church where she had said her wedding vows. The quiet cemetery where her beloved rested; waiting for her.

She had always been a housewife. The two of them were poor and because she knew the good Lord would bless her for being kind, she was always searching for someone in need. It may not have been  much she did, but it gave her great joy.

She had been living at Golden Oaks for nearly three years. She knew everyone of her neighbors, and kept up with the changes of nurses and staff. She volunteered to help set tables for mealtimes. She poured the water for each person, until her hands became so shaky, she ended up getting more water on herself than in the glass.

She was involved with all the Bingo games and she could be heard singing every Sunday when the different churches came to visit and preach.  She had nice people that helped care for her. Each night the CNA would help her pick out her clothes, and each morning a gal would help her get dressed and fix her hair.

Carol knew her time was coming to an end. She noticed the little things like being a little weaker, not being able to stand as well. It was alright with her. She had a good life and God had blessed her so many times.

It was the day after Christmas and she had been looking at the new year calendar. Valentine’s Day was coming. She smiled as she remembered the years her Bud had given her an extra rose for each year they were together.

She went to the social director and asked if they could speak for a minute. Ever since that little meeting Carol had been busy collecting ribbons, and feathers, construction paper, and whatever she could get her hands on. The director brought some of her own things in from home and handed them to Carol to help her fulfill  her wish.

The day had arrived. It was Valentine’s Day. Carol got  up real early. It wasn’t even showing a bit of daylight yet. Arrangements had been made by the staff to help her get dressed in red, and to put red lipstick on.

When she was all set, she wheeled herself out to the little room off of the dining room. There in a big, rectangle box, laid all of her items. She laid the box on  her lap and wheeled herself to each place setting.

There she placed a red, foiled paper on the table. On top of that, she sat a clear, small vase with a red, curled ribbon attached at the neck. Inside each vase was a red flower she had constructed out of crepe paper and red feathers. On each plate, she laid a card, where inside she had inscribed a Valentine note individualized for each neighbor.

When she had finished each table she went over and turned the dimmer light down just a bit. She wheeled herself over to the record player and turned on the song, My Funny Valentine, by Ella Fitzgerald.

When her neighbors started coming in for breakfast, she could hear clapping and words of joy. Some of the residents who could still walk fairly well, grabbed a partner and began dancing to the music.

As she sat watching the happy faces, she wished her Bud a Happy Valentine’s Day and began the journey of going to see what she could do to help get breakfast on the tables.

Written by,

Terry Shepherd

02/13/2016

 

 

 

I Talked About You Today

 

 

Today I had to run some errands. Among those errands were dropping off cards and flowers to some that have remained along my side since my brother died. I walked in smiling and cheerful, and walked out in tears.

No, they were not sad tears, but tears of good memories of Al. We talked about the life he had growing up. We spoke about the smile that was always on his face when a compliment was paid to him or he knew he was doing something to help others.

We talked about the suffering he went through from the time of his bed rest in October until March when he went to  heaven. Al was a proud man. When he could still speak he would always remind me that he thought he was a burden to me.

I constantly had to reassure him that I was taking care of him because I loved him. I know it is hard to believe but do you know the company he worked for, for nine years still talks about Al at least once every day? Yes, this came straight from the employees mouths. They miss Al almost as much as I do.

I shared a moment when Al could not speak anymore but God performed a miracle. He allowed Al to speak one final time and the words were as clear as crystal. I probably have shared this with you, my friends before, and if I did, I am sorry you have to read them again.

Al’s last words to me were my gift for taking care of him. He said, ” Sis, you did your best, I know you love me and I think you are the best sis ever.” Even writing this makes me all teary-eyed all over again. I thanked God that minute he spoke and I still thank him today for that special gift.

It is still very difficult for me to move forward, but I am having better days. A friend told me today that I visited,” You took care of Al for so long. You never gave up. In ways you were closer to him than any other siblings I know. There is bound to be a large void  and a feeling of being lost.”

Those few sentences seemed to validate how I feel. I  felt myself relax a little. It was like being told that the illness I carry inside of me called mourning, is alright to feel. I am going to be healed in time.

I think dear God above must know this will be true also. I believe this is why he is allowing me to move to a different scenery. Faces that I saw today didn’t have to speak. I knew from their eyes they miss my brother also.

Although there were tears today, I feel a few pounds lighter knowing that this is normal. My feelings I carry will fade from the pain and the memories I will gain. Miss you brother, and in case you are wondering bud, yes, we were all talking about you today. You know? I think I just saw you smile from heaven. Take care of him Lord until I get there.

Happy Birthday to You

Today is my brother’s birthday. He would have been 59. My heart is not healed enough so thinking about this topic squeezes my chest. I look at AJ, my new dog, and I also say Happy Birthday to him.

I don’t know when AJ was born, but because he walked into my life to help fill a void of Al passing, I think I shall place AJ’s birthday on the same day as my brother.

So since it is fairly nice outside. No winter boots or heavy coat here in Indiana today, AJ and I shall celebrate this double birthday by going for a walk. I will let him see more of the area where we live.

I will take my camera and hopefully be able to get a shot in or two. AJ is doing fantastic on potty training but walking on a leash is not something he has become used to. I think he is pretty smart, and this is the reason why.

I offered him a treat for doing his business outside instead of inside the house. He jumped up on me. The next time I offered him a kibble, he jumped; so I waited and with held.

When he sat down I gave him the treat. From that time on he had it. Each time he gets a reward of goodies he immediately sits. He wants to be with me at all times and he gets upset if he can’t see me. Oh it isn’t because I am so beautiful. It is because he knows I am his mama.

He fights going into his crate so when it is time I now place a treat inside the cage. He goes in with a little nudge instead of the usual bulldozer push. When I shut the door I offer him one more treat and praise him for going in much easier. He has now learned that pretty well. Just another couple of times and we may have that habit licked of fighting going in.

Al, it is going to be sad in my mind and heart at times today, but AJ and I will do the best we can at celebrating your birthday. I love you buddy and miss you terribly. I so wish you were here. Last year at this time so many friends and bloggers signed your birthday page. Today, I can go to it since I was smart and saved it, and smile as I see all the well wishes.

Beautiful Christmas Cards From Wonderful Friends MSA & WordPress

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 Joy in the Mail

It is bitter cold day outside. Freezing temperatures and that white stuff called snow. What flowers I used to enjoy through the summer now take a look of a different kind of beauty, still and peaceful. Here is the photo.

In the midst of the cold warmth is brought in to our home by Christmas cards. I would like to say a big thank-you to all who sent cards to Al and me.

To Diane S., thank-you for the card for Al, and the CD, book and card for me, thank-you very much.

To Michele B, thank-you so much.

To Michele B. from N.C., thank-you for Al’s card.

To Sandy R. a big thank-you for  my card.

To Sandy R., N.C., thank-you for Al’s card.

From Kell, N.C, thank-you for Al’s card.

From Claire R, N.C, thank-you for my card.

From Kell, N.C. thank-you for  my card.

From Teresa F., thank-you for Al’s card.

Al and I want to give you all a cyber hug for your gifts. Al has all of his cards hanging on his wall so that when he looks up he can see them. The lighted and cards that play are always on his bed with him and are played daily. We thank-you all so very much.

Al’s Guard Cat and Him Looking at Cards

Al is waiting for supper so he is looking at his cards he received today. Rhino the cat is standing guard in Al’s bedroom doorway, making sure Al is alright out of his bed.

 

Christmas Cards, Oh So Beautiful!

Beautiful Christmas cards. Musical, cheery, gorgeous. This is what Al has been receiving and got today also. He holds all of his cards. It is so cute to see him with them.

I want to thank our friends from whom we received cards today.

Vera J. She sent a beautiful Charlie Brown card that when you open it,  it plays different songs. It is precious.

RoSy S. What a cute Christmas tree. Crafted from a caring soul.

Alastair. Oh how beautiful. I love gold, and what lady doesn’t? LOL. It is gorgeous Al.

Cathy D. This is the cutest card. It has a mailbox with little squirrels all readying for the holiday. When you open it up a pop-up Christmas scene rises and the card plays, Have a Holly Jolly Christmas.

Everyone who  has sent cards, I want to thank from the bottom of my heart. Al loves them, I love them.

I wish for all of you to have a joyous Christmas.

Hugs,

Terry and Al

 

Ray of Sun Among the Clouds

Life is still running here at home. Last night wasn’t that fun for Al and it certainly rubbed off on me making me sad also. Al had a visitor and he cried and spoke about death the entire time. Before long I was crying like a big baby.

I swear in my heart which I may be protecting myself or I really don’t know but these changes in Al are due to the medicine changes and not his illness. But who knows, only God.

He slept about four hours and then was awake on and off the rest of the night. His one leg is contracted now so that it lays on its side, and then both knees are hugging each other. I imagine it has to hurt. I have noticed that his whole body is just sort of shriveling? I don’t know if that is the correct word but this contraction thing is for the birds.

He is starting on a new medication today to try to help the bones while the contraction is going on. It, of course is going to make him drowsy and may affect his vision, the paper work says.

Just what we don’t need. He is already suffering from blurry vision and is zoning in and out most of the time. I worry about tomorrow as he goes to Day Program how he will get through it. I will be asking him if he really feels like going.

Today Al received some more Christmas Cards. One of them is musical and lights up. Two of the other cards are made by children, which these cards are so adorable. One card is for me.

So I want to thank,

Rosy S,

Alex S.

Victoria S.

and Cheryl W.

Thank-you all. Al holds his cards like they are precious cargo. You are all so kind to him and me. Big hugs

 

Christmas Cards

I want to thank Bonnie Llewellyn. She not only sent Al a card with cute little birdhouses and birds, she also sent me a card. For some reason she thinks I may be on the naughty list. I thought that was such a cute card and I thank-you Bonnie for making me laugh today.

I want to thank Renee and Ed, of Photographic Memories, LLC for a beautiful card they sent to Al. It is a blue and brown card with the three wise men on camels. It is gorgeous. Thank-you Renee and Ed.

I want to thank Marlene and Little Binky. An adorable black and white cat. It is a beautiful card with photos of Melanie and Binky. We love it and thank-you Melanie.

All who have sent cards I want you to know how much Al loves them. He holds them and looks at the pictures. I read them all to him as his sight is not that good any longer. He holds your cards for hours.

If anyone else still wants to send him a card, please email me at

tellmenolies2004@yahoo.com

for the mailing address.

I will never forget the kind gestures you have done to help make his Christmas brighter.

Al is still in the hospice hospital. They are having some issues on getting the right pain medications to manage his  pain. I think the problem is his pain is bigger than the illness and all of the medications out there. They have tried different ones. They work and then they stop.

I am thinking he is coming home tomorrow but I am not positive since he is in there for medication management. Please keep him in your prayers. He has great pain in his shoulders, neck and feet as his body is contracting from MSA.

When I try to stand him to change him he can no longer stand on his feet. They are so contracted he ends up on his heels which causes great imbalance problems. This illness is not going to stop until it has caused every part of his body internally and externally to contract and stop.

I just hate watching this. With all the progress doctors and scientists have made they still do not have any kind of cure for this ugly and painful disease.

A Seed Was Planted

I started my day off pretty good but as it went on I became more tired, sleepy, worn out and irritable. By the time I had to meet the hospice nurse, I must have looked ragged because she asked, ” what is wrong with you?” I guess my body gave me a way.

I had company this afternoon. The phone rang over and over. It was always about Al. I didn’t even get my 15 minute cat nap today. Oh don’t get me wrong, I would have it no other way. I like knowing Al is home and this is where he will remain.

But gosh dang, my age is starting to catch up with me. What I could do five years ago, I can’t now. What energy I had this morning was gone by afternoon.

I tried to talk Al into letting me transfer him from his wheelchair into the car. I said, ” let’s eat out.”

No was his reply. I brought him in and fixed supper. After supper he brushed his teeth. I emptied his lunch box and cleaned it out. I emptied his back pack and put his show and tell car a way in his room.

Then I changed his brief. He took one look at his room and started crying. I was afraid of this but had to do what I had to do. You see, I don’t like being the mean bitch of the house. But with Al’s illness going at a shooting star    http://youtu.be/EUlJsbIXsNo    I have to change things around in his room.

With all of his cars that he won’t let me put back in his closet and the ton of coke stuff all over, I have no room to manipulate that wheel chair.

I had to rearrange his room moving his bed to another wall so I can parallel his wheel chair to the bed as he can’t pivot any longer. Of course I explained why I did what I did but he didn’t care.

Well I did care. I cared about whether he was going to fall. If I let him go it would take him about five minutes to move one step. I can’t afford that kind of time so this is once I did what I did for his sake.

After his crying spell was over I left the room and he did nap. I came out to the kitchen and did the dishes. I had pill boxes to refill and his takes a long time to do. Mine is done in about a minute.

I then got his stuff ready for his lunch for tomorrow and got his clothes ready for his shower in the morning. Finally, I was done. I looked at the clock and I had 23 minutes to spare before he would get up according to his routine. I hurriedly got me a nice cup of coffee and came over to the computer. I flipped my game on FB on and was in the middle of the first game and the bell went off.

Crap, double crap he was a wake. I didn’t know whether to laugh or cry. I went in and changed his brief. Lined up the wheelchair and stood him up. I took hold of his one arm to put him in his chair as there was no walking involved and he hung on to the bed for dear life.

I told him to let go that I had him. I think he about broke my back because my mind was on forward as his was on stay. Finally I got it done and he was seated in his wheelchair, transferred then to his recliner.

I started to walk out of his room back to my coffee and he wants to hold cars. Which cars I asked, those cars, which ones bud, those. Fine, I will figure it out. I will get each one down until you tell me I have the right one. Eventually I had the right one for him and came out to my cold cup of coffee.

I suppose I am hurting because I had to stand yesterday at the auction for four hours. My diabetic feet and back can’t take it. In order for me to get fully refreshed and a good day’s start I need 8 hours sleep. Ya, I know, to some that is a lot, but for my body that is what it takes to feel my best.

Day after day I don’t get that. Sometimes six, five, two, I never seem to catch up. I guess a little bit can be contributed to the fact I am almost 60.

While sitting here I remembered I hadn’t opened the mail. I discovered there was mail for Al. Three cards in fact. I want to thank Sandra R. from North Carolina. Thank-you also for the gift you gave to Al, Sandy.  Diane S. from Canada, and thank-you for the prayer cloth my friend. Also I want to thank Paula A. from West Yorkshire. Thank-you also for the post card you inserted about Whitby Harbour. I appreciate you sending me my own little card with your photo on it. It is very pretty.

It was at this moment that God had intervened. He knew I was at one of my little breaking points. I was going to sit and cry in my coffee but instead he planted the seed that we had mail.

I took Al’s cards to him and his tears turned into smiles, then I smiled. I am tired, I  hurt, I want to sleep for three days at least, but God let me know that you are all standing by me and Al.

God bless and many hugs to each and every one of you who has sent cards. I think in all he has about 21 cards. Remember if anyone wants to send him a feel good card please email me at

tellmenolies2004@yahoo.com

for his address.

As I am getting ready to close on this post I have to say caring for Al is very hard work, but he is working harder at staying functioning. My concerns are nothing to his, and when I get tired, I can stand by you.