Merry Christmas From Me To You

I am sneaking in here on the computer for a few minutes to touch base with you. Al has not changed at all. He is constantly talking but most of the time I can’t understand him. His latest words are 10,9,8,7,6,5,4,3,2,1,dead.

Imagine listening to that all the time. He has asked to be taken to Indianapolis. Of course he is sort of out of it. He has said that his taxes are behind, and they are not. He is so scared of the dark, that he request to have his light left on all night.

He says if he sleeps he will die, so he does everything in his power not to sleep. I was up most of the night last night. It is hard to even sleep through the day because when you do not respond to him he starts yelling.

I don’t want to be this way but the thought of Christmas doesn’t bring a smile to my face. I just want it over. I am looking forward to seeing my kids but that’s it. I want to tear the tree apart. Shove it in a box along with all of the happy, pretty decorations and just call this year a mess and hope for a better year next year.

But to all of you, my wonderful friends, I want to wish you each a Merry Christmas. May your day be filled with joy and love and peace.



dancing snowmensnowflakestwinkling treenativity-scene1

The Planning Continues

Today you would need two sets of hearing aids in order to hear what Al is saying. Yes, his voice is that soft. He has been still in his planning stage. He has sorted cars, from old to newest.

He has spoken about his viewing and his funeral. He has chosen where he wants to have his funeral. I liked his choice because that was my decision also. He has talked about his funeral.

He has been very apologetic today. He has apologized for almost anything. I keep telling him he doesn’t need to but he continues.

Hospice has now taken one of his medications and turned it into a gel form. He has a liquid medication for pain also and one seizure medication. This is it. All other medications have been placed in the cupboard.

He has gone extremely down in this area. From 15 meds to 3. He didn’t sleep good last night and I am so tired of being dizzy from lack of sleep that I slept most of the morning a way and let the care giver do her job.

I hope for a night of sleep, this is my goal for the day. I did venture down to the mailbox through about 8 inches of snow. It has snowed all day long. My son came down and plowed the ramp for me. I was very appreciative of this.

So all in all, the day hours have not been to bad, but I will admit that planning viewings and funerals with the patient is difficult for the sister. I am going to let him go in his favorite clothes. You probably don’t need to even ask. Yes, Coca Cola of course. If only the company knew how important their product is to Al, they would feel so special.


Robe or Clothes

Hi my friends. I sit here not feeling the best. I am cold and a little dizzy. My blood pressure seems to be alright and my sugars are normal and yet I feel like crap. I imagine part of it is the weather and my nose and sinuses do not care for the heat on in the house.

The other part is probably just me being drained, tired and exhausted. I ran yesterday, Thanksgiving on four hours of sleep. I crashed at 9pm and slept until 8am this morning. I felt fine when I got up and then about an hour later started feeling like crap again.

I called the Hospice house last night to check on Al. The nurse said he had not had a good day, but at this time in the evening he was starting to calm down. I learned they had changed his one pain medication to another.

I had thrown such a terrible fit about them trying to drug him up so bad they discontinued that drug and changed it to another. But the issue is bigger than that. You have a patient who is in pain 24/7. His body is constantly contracting and shrinking.

Muscles are hurting from non-use and then you have these terrible medications that can actually make a body worse. Hyper or slowed to the point of barely moving.

For me I find myself having to make decisions for another soul. Although his life is truly in God’s hands I play a big part in it too. The quality of life is the teeter totter. Balancing between comfort and someone you begin to not recognize in order to get that comfort.

This to me is stress at it’s best, which like I said before, is probably playing a big role in why I don’t feel good. Just because Al isn’t here, doesn’t mean my own body is in a stage of miracle healing. The side effects of being a caregiver can take time to heal to a point of what it was before.

I called Hospice again this morning to check on Al. They stated they can not get him up to go to the bathroom because he is too weak. This is what I am talking about with the medications.

Is it the MSA progressing to the point that he can’t stand or is it the side effects of the new drug. I hate it when they express they are giving him a new drug, which in truth is just another name for the same drug.

Same family of medications, but more severe side effects. I researched it to death this morning and it is dangerous. So where does the teeter become less tottering? I don’t know.

The helper is coming over today for a while, while  Al isn’t here. We are going to try to arrange his  room so a wheelchair and things he needs in there are easily obtained. I hope we can figure everything out.

Al throws such a fit and I also realize how much his vintage cars and coca cola mean to him. I also realize that while he is in bed more and more he enjoys looking at his treasures. But then you have the issue of needing more space as he is taken care of more in his bed.

The wheelchair needs to be able to have enough space for when he needs it and the caregivers need space also, so we shall see what we can come up with for the benefit of Al and me.

With Thanksgiving being over I have decided to be lazy today. I didn’t go to any stampede black Friday sales last night or this morning. I am still in my robe. I am expecting a delivery for supplies for Al. I really don’t give a hoot if I answer the door to him dressed this way or not. Who cares? If he wants to take mental note that a caregiver answered the door in a robe, so be it. Let him try being a caregiver.

The sun is shining and I am trying to get my mood and smiles to shine also. It is  hard though, I am just plain tired. Al will probably be home Monday, so I will tend to relax, clean his room, and maybe squeeze some time in Christmas shopping, who knows,,,,maybe I will just stay in my robe until Monday.robe


O Happy Day

Oh happy day, it is Monday. Freedom, I get out of the house. Now don’t think I am a nut case, but being in the house for 48 hours with no fresh air, I feel like a baby chick bursting out of my shell.

Even Al woke up with a smile this morning. It sort of…

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O Happy Day

Oh happy day, it is Monday. Freedom, I get out of the house. Now don’t think I am a nut case, but being in the house for 48 hours with no fresh air, I feel like a baby chick bursting out of my shell.

Even Al woke up with a smile this morning. It sort of rubs me the wrong way because he doesn’t smile for me usually, and I am the one who works so hard to get one smile. I can understand on the other hand though. Hey, he gets a way from me for a while. Although he ask to be in his bed, he breaks apart from it too.

My Christmas tree took a dump on me. The lights have trickled out over the weekend until I have one little place lit, so off to Wal-Mart for new lights.

So as I say Oh happy day!

Living is for the Breathing

castle 4Floating on the surface, waves gently passing me by. Fish tickling me as they swim by, life is good. Sun peeking out from foggy skies. I am alone. Only God is with me. I am forced to accept me for what I am able to do. I have to say hello, to hear my voice, but the only one who answers is me. Hearing the sound echo from the depth of my soul I recognize myself but never knew me before.

A tiny sperm helped mold me into the form I take today. Years of learning, hearing voices, recognizing right from wrong. Yet today I wonder if the decisions I make are right for me. While God is holding me above sinking ground I have no choice but to live or die.

Is one better than the other? Is death more beautiful than life? I have the opportunity to find out now, but no, I am not ready. Although many speak of glorious lights, golden paths, love being the air we breathe, how can that compare to what I see in my view today?

Would it make a difference if I could fly to heaven and see if it is what I have heard? Would it make living easier if I knew for sure something better was waiting at the end of the rainbow?rainbow 3

Could we live with our bad choices knowing the consequences will be short?

We live in the moment, we hope for the best. We error, we win, some times we weep in our pillow.

I have come to the conclusion that although there is fear of tomorrow and heaven is golden, we need what we are dealt with each moment here on earth. We would never appreciate the here after if our lives were not filled with tests.

One day my work will be done and God will call me home.  I will look back in my own book and smile as I know I gave all I had to give. The mistakes that I made will have been done without vicious intention. Desires that I dreamed of, wishes that went unanswered were meant to be.

Life is good. Heaven is wonderful. I am here for a purpose and I will decide to enjoy the rocks in the road. The valleys I will climb out of. The choices I make I will accept.

Living is for the breathing, looking back we won’t see our footprints. We have no choice, we either live or we die. Hold on to your hope, follow your dreams, one day you will close the last page of your book and you will smile.