Today is calm. Clouds, a dusting of white snow on the ground. Cold temperatures of 20 degrees. I…
Today is calm. Clouds, a dusting of white snow on the ground. Cold temperatures of 20 degrees. I…
Today is calm. Clouds, a dusting of white snow on the ground. Cold temperatures of 20 degrees. I have had my shower and am sitting here in my warm night-gown and fuzzy slippers. I am waiting for the phone call that will start my day.
The shower girl will be announcing what time she will be here. This fifteen to twenty minutes is almost as important to me in the mornings as talking to God is. Quietness, the sound of Rhino wanting petted and the fans running on the computer.
When that phone rings it will signal me to go get Al up. I will change his brief and assist him in a sitting up position. Then transferring him to his wheelchair and placing him in a good position at his bedside table, I will start his breakfast.
Once he has eaten, I will brush his teeth and shave him. The shower girl will arrive and do her thing, then it is getting Al ready to be bundled up to get on the bus. Already the memories of silence I heard just moments ago will fade into a puff of smoke.
I will then receive a call from the Hospice nurse telling me when she will be arriving at Al’s Day Program. I will armor myself with boots and gloves, warm up my cold car and with grocery list in hand I will once again be placed into the hustle and bustle of people in the grocery stores, all doing the same thing.
It is getting uncomfortable to be around the crowds. I think it is because I spend ninety percent of my time inside our home. After leaving the grocery store I am meeting a lady to pick up an item I purchased.
Driving home, getting the mail, carrying the groceries in and putting them a way, I will look at the clock and take notice of how much free time I have left. I will let out a sigh and grab one last cup of coffee before the glimmer of silence is gone until bedtime. You have to love Mondays. Although weekends are the same to me as most of the week days, I hear no doctors or have any meetings or big routines on the weekends. I kind of like that.
This will be a busy week for anyone celebrating Thanksgiving with families. I want to wish all of you that will be traveling a safe trip, yummy food, good conversation and a happy Thanksgiving.
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.
Well, well, well, Friday, Saturday, Sunday, Monday and today is improving Tuesday. Yes, Al is more aware and awake. He has eaten for me all day. He plans on going to Day Program tomorrow which means I can get some fresh air and go to the grocery store.
He is still very weak, he continues to have his treacherous tremors but his spirit is brighter. He has sat in his recliner two different times for short periods.
I am sighing a long breath of stale air where I had been hanging on to every breath I took wondering what was coming next.
It looks like we are on an up swing and I don’t care how long it last as long as he is content each moment. When the bad day comes again, I can look back at Improving Tuesday.
We do have a bigger problem though since he is definitely weaker. This is not a temporary thing. The new weakness is here to stay, partly due to the illness, and partly due to the increase of pain medications.
Come here, come real close, I want to ask you a gentle question. Do you have a weak stomach? If you do you may not want to read further, but if you can take it can I discuss the word POOP with you?
I have your permission? You can handle it? Alright then, here is the situation. Have you ever sat for minutes waiting, reading your magazines, smoking a cigarette, more waiting and nothing happens on the Big John?
You read some more, you relax, you push until your eyes bug out and your face looks sunburned. Eventually you score, victory is yours. You smile, you won, another battle is over.
Well for Al those muscles that you and I use don’t work anymore. He takes all sorts of medicines to help but help doesn’t come.
Now that he is weaker those muscles are weaker also. He is also hard to stand for the Day Program people too because of his weakness.
The terrible thing about M.S.A. is that his mind is in tact. He knows it is wrong to do the deed in his brief so he is fighting it. I have been speaking to him on and off all day about how it may be time for him to go in his brief because his body can’t make the trip to the toilet.
He cries and says he will stink. Of course I pipe up and say absolutely not. You just say that you need to be changed right now and who ever is with you will run to the bathroom faster than you can say Monkey’s Uncle.
He didn’t think that was funny, but seriously friends, his body can’t get to the bathroom. It is a transfer from bed to wheelchair to toilet to a sitting down position. Then the physical work of making pudding pops, then standing back up transferring to his wheelchair and back into bed.
For a tired body and a weak heart that is a lot of work. Even today Al sitting in his recliner twice for short periods you would have thought he had just carried a bundle of firewood, he was breathing that heavy.
This is one battle that I and the nurses and Day Program have to win in order for Al not to have another big heart attack.
Alright, that wasn’t too bad of talk was it? Are you sick to your stomach? Should I excuse you so you can leave?
On the bright side a friend of mine sent me the Teddy Bear today. It is the M.S.A. bear that I put on my blogs a lot. It is a sign of hope for a cure so people don’t have to suffer like Al does.
Pissed Off Over Bread? You Betcha!
Of all the post I have written over the past year and a half, I doubt if I have ever written a…
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.