I loved it that Alwas chatty today, but I hate what is happening inside. We are becoming quite…
I loved it that Al was chatty today, but I hate what is happening inside. We are becoming quite constricted on what Al can eat anymore. Solid foods are out. puree and mashed is in. Red sauces are out, causing him heartburn because he barely eats. Creamy foods, puddings and ice-cream and milk make his mucus worse, thus he chokes and coughs.
All I seem to be able to feed him is mashed potatoes. Tonight he ate about five bites of macaroni and cheese. He was able to eat it, but it was a bit of a struggle for him. He is so thirsty the past three days. He just can’t seem to get enough fluids.
I was explained to that at this time of his life thirst is a big issue. I am not sure why. If any of you know let me know please.
His arms are contracted so that they always look like he is praying. I keep putting them to the side of his body but they just creep back to the center of his trunk.
He didn’t do bad today. I didn’t hear much complaining. Mainly heartburn and his heels hurting. His heels are constantly on pillows but he is complaining of foot pain. I also was told that at this stage of a person’s life, with his oxygen level being now 74, that he will feel a tingle in his feet from lack of circulation.
What else will happen before he is out of pain? I don’t know, but I am hoping that some of you thinkers out there can help me with a more appealing menu for him. I will be going to the grocery store tomorrow or Sunday.
Thanks ahead of time. I know some of you will give me some great ideas.
How can someone, let’s say me, go from a woman who was thrilled only a night ago when Al said he loved his sister to the wicked witch of the west this morning.
This is the fourth night in a row I am not getting any quality of sleep. Quality, an interesting word, I think.
Quality of life, quality of living, quality of spending time together. Now suddenly this seven letter word can’t seem to release itself from my pointy tongue this morning.
I am not usually awake at 7am but here I am. Sitting here with a half-empty cup of coffee. A smoldering blue line of smoke rising from my ashtray. My pink long-sleeved nightgown with Christmas gifts for its scene. I think this is to remind me that it is truly the Christmas season we are about to enter into.
As I look out through half-slit blinds I see the first ray of daylight peeking through. Another night has come and gone. Al has just gone to sleep and I am sitting here bitchy inside. I know I am tired but I don’t know how to fix it.
Yesterday Al went to the Day Program. I had an appointment I had to attend to and then I scurried to the grocery store; like a squirrel going after nuts to store for the winter. Except I was replenishing our kitchen cupboards and refrigerator.
Grocery shopping has become a chore more than a pleasure. Maybe a lot of you don’t see pushing a noisy, wire, gum stuck on the wheeled cart down the aisles a pleasure, but I always did. It was a chance to look out for people I know, a chat here and there, looking for the bargains.
But anymore it is do I have everything I need for Al. Will he be able to eat this meat or not? Do I have the apple juice, prune juice, the kind of snacks he eats. Which by the way the latest rage in our house is Little Debbie Star Crunch or Kellogg’s Pop Tarts. Do I have his yogurt. I hope I have enough macaroni and cheese since he can eat this pretty easy. Do I have enough pancake batter? Oh that reminds me, do I have enough chocolate chips left at home for the week? We have to add the chips to the batter.
Ever since Al has become worse he extremely enjoys chocolate and sweets. Oh crap, I didn’t check the amount of chocolate ice-cream. I better pick up another box. Can you believe I take a list with me also?
This is how scatter brained I am it seems lately. In between the list I need to be home running the washer, which will be Al’s bedding. I really should be sweeping and dusting his room since he is gone right now.
Have I changed my own sheets this week? Oh forget that, change the sheet on the couch, because this is where I have laid my head this past week. A much shorter walk to Al’s bed then my bedroom.
I feel like my life is out of control. It is spinning but never stopping. I look at that empty couch and dream of my head on that pillow but also realize that the helper will be here in less than an hour and I am still not dressed. I haven’t touched my hair or brushed my teeth.
I did manage to give Rhino fresh food and water. Saving the cleaning of the cat box for when my eyes are more awake. That fat cat is in on my comfy bed, sleeping on my extra pillow. Al has finally drifted off to sleep, and so here I sit, the wicked witch of the west.
Feeling sorry for myself, pouring my tired thoughts out to you. Obviously looking for a pity party. It is funny as I look back at what I wrote. A grown woman, full of love and compassion. Empathy is my middle name and yet I am definitely green-faced and cat claws are showing, just like the photo above.
And all this is from a silly thing called lack of sleep. Do you think I will turn into Dorothy’s worst nightmare and remain this way? Lord I hope not. When the caregiver comes and breakfast and medications are over, I am going to find my pillow and we are going to meet somewhere in the middle. I don’t care if it is daylight or not.
Yesterday was Thanksgiving at our house. Like most Americans, we celebrated with a turkey, ham, and other goodies. There was a seven layer salad, deviled eggs, home-made macaroni and cheese, home-made dressing, green beans, corn, home-made yeast rolls, a relish tray, apple, cherry and pumpkin pie, and an old-time favorite chocolate dessert that all went with the meat.
We smoked the turkey for the first time, and I was in awe at how the outdoors smelled the whole day while the bird was cooking, and the taste, oh my gosh, it was divine!
I picked up my brother in the early afternoon. I walked in and he was sleeping. I called his name a few times and finally he woke up with a smile on his face when he saw me standing there. It was wonderful to see the smile. I just knew he was so happy to be coming home for the day.
He didn’t stand very well without help and he needed a little help getting in the car and out of the car. He went inside the house, and then immediately turned around and went outside. The fresh air had to feel awesome to him as he was inside a building most of the time.
He stayed outside, sitting on the picnic bench quite awhile, until he got chilled and wanted to come in. When he came in, he didn’t take his jacket off for a couple of hours, saying he was cold.
He didn’t produce the usual chatter he does when family is usually here. He watched cartoons and laughed along side of my three-year old grandchild. He took smaller portions of food, but did make sure he ate a piece of cherry pie and the chocolate dessert.
His tremors were pretty active, so after he left the kitchen, I went behind him and cleaned up the floor where he had been sitting. I got the kitchen all cleaned up, and then he asked to go back to his new home.
I asked why, aren’t you having a nice time here? He said that he wanted to come here, but he just was so tired. Sadly, I took him back, and found the nurse to let her know we were back and then told her I thought he had a good time but he was complaining of pain while he was with me and how tired Al was and wanted to come back early.
She said that the Parkinson’s is progressing in Al’s heart, so she finds Al asleep a lot more. She said she has to wake him up often, just to give him his medications.
She said the facility was considering pushing Al down to the socializing room in a wheelchair,, so that he would get more involved. I told her he had also told me, that his legs hurt so bad, that it was too long of a trip to the socializing room. She said that they would just start pushing him and the rest of the times he could use his walker.
I had sent him a goody gift bag with him and he made sure to tell the nurse to mark his things so no one would take them from him. He had rolls, cookies, sodas, and a new car, and more newspapers to read now.
When I left the facility, I got in my car, and before I turned the key over, I looked up to the skies and thanked God for this wonderful Thanksgiving day. Although, only one out of three children showed up for the dinner, Al, my baby brother, had made a sacrifice. He sacrificed his pain, in order to spend it with his big sister.
Thank you Lord, for giving me this day with him, and my little family that spent the entire day and evening with me. I feel truly blessed.