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…
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…
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.
A Seed Was Planted
I started my day off pretty good but as it went on I became more tired, sleepy, worn out and…
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.
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
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.
A new friend of mine has nominated me for the Very Inspiring Blogger Award.
If you have never visited Sam, please feel free to do so.
Here is an excerpt of who this new blogger friend of mine is.
I am a free-lance writer. I like to write mostly about social issues and all those happenings surrounding our lives which affect us in very subtle ways. Nobody is immune from the effects of crime in our society since the pattern of crime has changed with mobility and technology. We seek security and safety to live a better life. We should be able to move freely in our surroundings enjoying the full benefits of natural beauty and other gifts that come for Canadians as Canada being one the finest countries in the world. Crime, if not checked, can make the same beautiful country a living hell. To avert such a dire situation we have to recognize that it is the police officer who will defend and protect us. The balance of justice may tip up or down but eventually it will level off with the effort of police officers who are greatest of Levellers. And this is the shinning virtue of police officers It is in them to protect us. They are the law. Their strength is imperative to protect the innocent people who have faith in the protection that they offer. This website has been established to make people recognize the fact that a person who is prepared to give his/her life in protecting innocent people is the police officer. No police officer should ever be suspected that he /she will not protect you because it is in their spirit to protect you and pray for your safety before they think of protecting themselves or praying for themselves. Great police officers are angered by injustice in society but are not frightened by it and they will fight head on eliminating injustices for they are the law.
Today I went and saw Al. After I left there I forced myself from returning to the computer and went through one of those self-serve car washes. I swept the inside and shined everything possible. Then I used the big hose to give the car a bath. Sort of like the old song, Doggy Want a Bone???
On my way to the Y I stopped and shot this photo. It is a Pear tree. I thought you would enjoy also seeing the first photo I took about seven years ago. This is when it hit me that I really enjoyed being an amateur photographer.
Then I went to the YMCA and used some of the weight machines. I walked a mile on the treadmill, and then went swimming in the warm water pool for half an hour. I came home not sore but knew that I had done something unfamiliar to my old body.
My grandkids came down and we watched a movie that was recommended to me by a friend on here. The life of Pi.
Both of them were glued to it along with me. It is an excellent movie. Here is the trailer for it. http://youtu.be/mZEZ35Fhvuc
I thought of Al definitely today, but I made some free time for my mind. I am tired tonight but in a good way. I wonder if I will be able to walk tomorrow………
About Al? and his day? I felt bad for him. He was seeing flowers with no tops and squirrels running around. I hope after his body adjust to the new increase of pain medications this will cease. He wasn’t in a bad mood nor happy. He was just being there, sitting in a wheelchair. I took him outside to get some fresh air. He ate all of his lunch. He cried when it spilled on his lap. There were times that he was very confused about the days and what was going on. Is this something he and I have to get used to in order to keep him pain at minimum??????
This week could have been better for me. I have suffered minor set backs of almost panic attack feelings. Stress and tight muscles as I went to bed and waking in the mornings to the same feelings. I wondered if I even slept well at all through the nights.
This has been happening to me ever since the day I thought Jesus was standing very near to me. I think that my mind races like a spinning top about all kinds of things. Al coming home soon. Will I be able to do everything I need to when he is here? The inner guilt of choosing Al over working outside the home. Wondering now that I have written a few chapters what really happened to Al when he was little.
It just seems I do not stop the thought process, and I have learned to hide beneath my covers and sleep. This doesn’t help me long-term. I realize it is a temporary fix but at times it is enough to relax me some.
As I was about at my wit’s end last evening where I just wanted to pull my hair out, fall to my knees in tears, a good friend of mine from Canada called to chat. She told me that she felt she was supposed to call.
God has the perfect timing. He knew that I had enough. My bucket was ready to spill over and he sent a friend to the rescue. We talked for over an hour. I almost didn’t want to talk at first. It is very difficult for me to release the silly feelings that I carry inside. It is much easier for me to pretend that life is good and all is well.
My friend is a very strong Christian woman and so I was able to confide in her questions that had been spinning in my mind and we talked through them. By the time we hung up my tight chest had relaxed and I felt an inner peace I had not felt all of this week.
She made me see the light about caring for Al versus having money in my hands. She told me that God will take care of my needs as long as I am sincere. I feel very sincere when I say out loud, I want my brother home with me. I want to give him all the support I can. I want him to know that he is loved and I will be here with him through this journey of his life.
Maybe once Al is home I can get the routine down pretty well and pick up a job caring for someone else while he is at Day Program. I dare to say that my first book is now done and getting ready to be published very soon, that this would make me any money. I didn’t write it for that reason, to get rich. I know that is a foolish dream.
I wrote it for my children for when I am no longer here. I wanted to leave a mark here on earth, a memory of how I think, but if God wanted me to make money off of it, he will. He is an amazing God and what ever he wishes for me will all be good.
I think one of my deepest thoughts that fly around in my head is Al. When I read back what I have written I see what I was put through at a very early age. I see how my innocence was stolen from me. But, what about Al? Surely there are reasons that he was so afraid in those young years. I don’t believe that children are born afraid. Something or someone has placed that fear.
My friend and I prayed together over the phone that God shows me how to help Al release the hidden fears he has kept buried all of these years. I can do nothing to help him alone. I have tried so many therapy sessions with him and we get no where. But God can do anything.
It won’t help Al rid the disease of Parkinson’s Disease. It could release bad memories and bring him a release and therefore joy. Seeing Al carry joy in his heart and the two of us leaning on each other can not do anything but help us both.
Knowing that Al believes in his heart that I really do love him would be wonderful. To see him trust me totally would be so wonderful. So now I ask the Almighty God to help me to help Al.
She laid there crying. No one could do anything to help her. The mother wrapped her in a cloth burlap and squeezed her gently to her bosom. Outside her hut officers were waiting for the signal to take this child and dispose of it.
Mama looked to the heavens and pleaded with God. Please dear Father, do as you wish to me but please save my baby. Give the officers a softened heart. Let them find a safe haven. Please oh Father do not let my baby die.
The flap was opened. Rays of sunlight shown up on the dirt floor. Working through orders one of the men snatched the baby from her arms. The baby was hungry but Mama had no milk to feed it. In less than a twinkle of a star the hut was silent, the baby was gone.
Drilled in to her head were memories of the blue eyes pleading into Mama’s. Dark curly hair that laid against the nape of the neck. Mama smelled her fingers and the still remaining essence of her baby rested upon her.
I will never forget you baby. I loved you the moment I felt your first kick deep within my womb. You will always hold a special place in my heart. I will think of you every day until I am dead.
The punishment she had been given for lying with another man would be carried with her the rest of her days. It is a sin to lay with another woman’s husband. She knew this, but the devil tempted her and she did not resist. One moment of weakness and it produced an off spring.
She laid down exhausted from her hours of labor. She drifted off to sleep and dreamed. A dream that she never wanted to awaken from.
Two men carried a baby. To take it into a woods far a way and leave it until it died. The men stopped at a small village. This is where they decided to rest for the eve. There was a well and they thirsted. Lying the infant aside they joked and drank from ladles with the other men folk.
Behind a large bush two eyes watched the men drink and be merry. Her own heart was broken. She and her husband had given birth to a child who never took its first breath. Her body shivered as she realized the closeness of the baby. She could almost reach out and touch it. She could smell the soft skin.
Without hesitation she moved closer. Slithering like a giant snake. When the men were too involved with their wild tales she grabbed the baby and was out of sight before the men realized what had happened.
She took the baby home. She heated water over the coals. She bathed the baby as if it was a fragile piece of glass. She pulled out from her basket clothes that had been saved for her own sweet child. She dressed the baby girl and decided to name her Hope.
When her husband came home she explained how the infant was left at their door step. God had realized her pain. He had delivered a lost soul to her to treasure and care for. The husband could only see the blue eyes looking into his. The tiny fingers wrapping around his own.
Words his wife spoke could not penetrate his own ears as he felt love for this infant swell in his heart. Together these two became parents and the three became a family. The infant became a toddler and then grew up into a beautiful woman.
The two men who had the responsibility to rid this baby finally took notice that she was no longer there. They looked at each other in fear and then they both laughed. Their bellies so full that it shook along with each laugh.
” I say we say we got rid of her. We save our own hides. Let’s stay here for the night as we planned. We shall feast on our own lust for women and fill our bodies with ale”. His partner agreed and they let the infant erase from their minds as they went forward to fill the night.