Wrinkles and Baggy Eyes
Yesterday, slowly the day progressed from good to bad. By the time it came to rest, Al‘s tremors and internal furnace got worse. I sat in his room from 3:30 to 6am, covered in two blankets. A ceiling fan and box floor fan both on high and Al is yelling out ” I’m on fire! I’m on fire.”
The amount of medications I was giving him would let him just start to sleep and then we was wide awake again. From what I have learned there is no fix for his internal furnace and tremors.
I probably looked silly sitting there in my house coat, slippers and two blankets. The register is closed in Al’s room in order to keep it cool also.
This morning the Hospice nurse said it was his heart last night, throwing a fit from the tremors, causing something like women’s hot flashes.
He is a bit better today but not much. I am so darn tired. I just look outside as the world passes me by and tell the leaves I am so sorry to be ignoring them. Hopefully I can get my son to come down and at least mow them if nothing else.
Tomorrow I get out for four hours. A trip to the pharmacy for Al and to the grocery store. I sure hope this new gal relaxes and I can eventually get out of here or there will be no Thanksgiving Dinner or any Christmas gifts.
I learned last night my daughter won’t be here for Thanksgiving and maybe not for Christmas. Of course I am so disappointed, one because I love and miss her so much and two, she is the biggest help. She just picks up and kicks in and none of the other family members do this.
I think I will be glad when the holidays pass in some ways.
A Very Long Day
11pm at night. Quietness at least for now. I feel so guilty that I have not been on here much the…
11pm at night. Quietness at least for now. I feel so guilty that I have not been on here much the past couple of days, but Al has been so restless.
I have just changed him and rolled him over on his side. I pray that I won’t be up for a third night in a row. I am going to place an ad in the newspaper tomorrow morning. I just can’t do this anymore.
My neck is burning, I am sure it is muscles. I had some sort of spell today. I felt hot all over. I was actually sitting here at the computer and suddenly got hot and felt like I was going to pass out.
I knew I needed to get to the bathroom and splash my face with cold water. On the way there I leaned into the wall a little. I got light-headed. I had been to two doctors this week and my blood pressure was a little high. When I took it here at home it was the same as it was at the doctor.
I just can’t do this alone anymore. As long as he is confused and needs to be rolled so often in bed I need help. Please pray that someone responsible will answer my ad.
So far Al is saying he does not want to go to Day Program tomorrow. It is serious when he said this. I never in my life I thought I would hear those words.
The shower girl will be here tomorrow morning. According to how he is, he will either have a shower or a bed bath, and then I guess we shall know then whether he is going.
If Al is going to remain home I definitely have to have help. I need to get to the grocery store. No one delivers to homes in our area.
I have been working triple time to slow down my mind. I have stayed either with Al today or on the couch lying down. Al never slept all day but then at nine tonight he took a little nap.
I got a call from the Hospice Doctor this evening. I was surprised to receive this on a weekend. He was checking on Al and he definitely told me that the medicines he took Al off of will not shorten his life span, but neither are they doing him any good any longer.
He told me Al should not go to Day Program and I agree, but I am still leaving it up to Al and how he is feeling, but it seems Al is figuring it out all on his own. The doctor told me that each day Al will now become weaker and each time he is made to move around he will suffer more and more.
He stated a weird thing when I really think about it. He said, ” Each day Al is one day closer to dying.” I already knew this. I think doctors and nurses beat around the bush. They have ethics and politeness when sometimes I would rather hear the bold truth, but then again, why. It doesn’t matter. I try to make each day count.
When I roll him it is a huge struggle and I get stressed because I feel like I can’t do it. I know Al knows it is hard because he kept telling me he was sorry. Of course I would feel guilt that I verbalized my groans of pushing and moving and I would tell him it isn’t his fault, that I know if he could help he would for sure.
His tremors just this weekend have curled his toes up bad. He has a large looking hammer toe now from the curling. His arms won’t stay to the side of his body. They repeatedly make their way back to his stomach area.
No matter when I went in to check on him his hands were holding each other and he was beating himself in the stomach from the tremors. I have to wonder if I can get his shoes on him.
With all of the doses of pain medications no one can seem to get the tremors to stop. I believe in my heart that the only one who can stop those tremors is God.
I don’t know the time but I am thankful that I have put up our Christmas Tree. I told Al I was going to put up white lights for him in his bedroom today but I never made it to that. Hopefully tomorrow.
I let the house go today. I fixed a meal. I cooked chicken legs and de-boned them. I cooked noodles in the broth and made instant mashed potatoes. I also made a pudding for Al. I took the seasonal pumpkin pie spice Jello pudding mix and added beaten cream cheese and a container of cool-whip, then enough milk to make it the consistency he needed.
He ate one doughnut yesterday. Today he ate about five bites of pudding two different times. He also ate about a fourth of cup of noodles. He didn’t eat much but he ate more than yesterday. I could hear his tummy growling but he is barely eating.
Well the day is over, hopefully. I am headed to bed to get some much-needed sleep. Keep us in your prayers for a helper to arrive. Hugs to all of you for your love, friendship and support. I couldn’t do it without the emails, phone calls, and comments.
Al has had three good days, but as usual it comes to a halt. I have to believe it is the M.S.A. that causes this. Human minds are doing all possible to slow this terrible illness down. There ideas work for a few days and then it stops.
Last night when he came home from Day Program his communication book said that he had tremors most of the afternoon and had napped. The tremors continued throughout the evening.
He ate 50% of his supper. When I put him to bed his legs were frozen bad. He could not move his legs at all. I sort of had to tug and pull to get him into bed. I noticed he was slightly tipsy when I stood him up.
This morning he was tipsy too. Not like drunk but definitely not steady. He swayed to the side some. I noticed labored breathing from him no matter what he was doing. Just to move was a chore for his weak body.
During breakfast he did eat 100% but he stared quite a bit. At first I thought he was having another seizure, but it wasn’t exactly like a seizure. He would hold a piece of egg in his hand for at least a minute staring straight ahead, doing nothing. Eventually he would eat it.
I would say it was more like the body had lost touch with all thought process and Al was patiently or maybe even unaware of what was happening. It took a while but he did finish. After breakfast I washed him up and once again heard the labored breathing as I got him dressed and his brief changed.
He wanted to sit in the living room in his wheelchair. He knew that the Hospice nurse would be coming soon. When she arrived, Al’s arms were dangling over the side of his chair. His voice had become terribly soft and quiet. The staring or non-movement was there for her to see.
She checked his vitals as usual. She said his blood pressure was low, at least for his normal readings. She asked him questions, but when she was listening to his heart, she kept at it for a few minutes. Usually she listens and says everything is alright. I felt anxious and nervous. She was taking too long.
Afterwards I went back inside and she was typing on her computer. She looked at me and mouthed something, but I couldn’t understand her. She then came to me and told me to keep an eye on Al today. She didn’t think he should be going out of the house.
My breathing became a little heavier as I asked her, ” What is it?”
She said that his heart is stopping off and on. That I should watch for his breathing as his heart was stopping for about 15 seconds. Of course this scared me. Al didn’t understand at all. He knew we were going to Wal-Mart today. I told him maybe we would go later depending on how he felt.
It is weird that Al doesn’t notice much about what his body is or isn’t doing. He is evidently used to what is going on in the inside. The nurse said it wasn’t bad as far as how long it is stopping but to me this is just another slap that things are continuing to move downward, even though on the outside he had three good days.
I thought of how my sick brother seemed so good and the green bug I had just photoed outside. Life is still moving all around us, but you have to look deep inside to see what is truly happening.
This has enabled him to eat and drink by himself. His chatter is constant and he smiles more. I think he has more pride in the fact he can do a few things for himself again.
Not being able to feed himself I notice this is most humiliating to him. He can cry easier at meals than any other time.
I wish, let’s say I am always wanting more. I wish that he could stand longer. He can not. In fact, I think he can stand less. The new medication has helped in the area of tremors and also in less sweating.
He sweats when he has to stand to be changed or transferred. His labored breathing is still heard when he has body activity. The side effects that I think are from the medication are more confusion. He is sleepy more often than not. He stutters quite a bit now, but at least, thank God his tremors have lessened.
All of you that have prayed over Al for so many months, God has been listening and has answered. I will not get my hopes super high. I realize that medications only last so long before the body gets immune to them. I will keep my hope at bay and within reason. Sort of like that game at the fair where you ring the bell with the big pallet. Oh, it is called test your strength. I have never played it. I don’t want to have some gadget tell me I am weaker than I think. Here is a video of the game being played I am talking about.
Have you ever seen hands tremoring so bad they can’t be used? Here is a tiny video of this happening. This is what Al’s hands were doing until this week.
So all I wish for now is the medication to last for a while before we have to start increases. I am afraid if there is an increase Al will end up being bed bound.
I trained someone this morning for the coming Wednesday. I want to attend a very important auction and I could not take him. I felt like a real teacher. This will be Al’s first time staying with a caregiver in his position he is in now. She is very nice. Al asked all sorts of questions. I could tell he was not as much interested in who she was about but if I was coming back.
So thank-you everyone for the constant prayers. I really appreciate them.
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