Weekend With An M.S.A. Patient, My Brother


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Al has definitely not been himself yesterday and today. After the nurse came Friday night and did her thing with helping Al use the bathroom he has changed. He can’t stand at all. He stayed in bed all day yesterday, … Continue reading

Blood Everywhere

When I got Al off the bus I saw blood on his fingers. The driver said he must have done it while she was driving. When I got him in the sunlight I could see he had done some heavy-duty picking to his forehead.

I took him inside and cleaned him up and finished preparing dinner. When I glanced back at him there was blood pouring down his glasses and side of his face. He had put his hands in it so I had mess number two to clean up.

This time I put a piece of gauze and a band-aid over the injured area and went back to wash my hands and continue with supper. Thank goodness it was an easy supper tonight. Baked fish with baked french fries, cottage cheese topped with pineapple. Dessert was already made as you saw from my prior post.

I turned to look at him to make sure all was well and the gauze and band aid was soaked. Now it has been an hour since he got off the bus. I felt I had no choice but to call Hospice. Upon the call I was told she was with another patient and would call me on her way up.

The office is an hour from our house. I knew it wasn’t an emergency but still he had been bleeding for some time now. Due to the fact he takes blood thinners and can’t hold his head up were making things worse.

We went ahead and ate supper between me changing out covered ice-cube patches and then the phone rang. The nurse who was to come had to go to an emergency on another patient that was struggling with breathing.

Of course go to them, this is not an emergency. Hopefully this will subside on its own. I ask the triage nurse if I could lay him down and she said yes. I changed his brief and the entire time I have him in his room he is yelling, ” I am stupid, I am a failure, you may as well toss me in the trash.”

I told him to stop. I told him that was foolish talk and it upsets me when he talks this way. He kept on going. I was forced to give him one of his emergency pills. It still hasn’t taken effect but his room is quiet.

I am going to go back and check the bleeding spot. Maybe I can tell the nurse she doesn’t need to come. Maybe the bleeding has stopped.nurse

I Can’t Get Through This Without Your Support

This morning I met the Hospice nurse at Al’s Day Program. He was not a happy camper. butterfliesHe had wet through his clothes and he was highly embarrassed about this. The nurse checked his vitals and his blood pressure was quite high.

We left him crying. I felt terrible but I knew that the nurse and I were a reminder of what illness was doing to him.

When he got off the bus tonight we ate. Once again he didn’t eat all of his supper. I believe that three times including the weekend he ate about half of his meals. After supper and stripping his shirt off, brushing his teeth and taking him to his room, I took off his shoes and socks because he wanted to nap.

When his feet were exposed I looked at them, ready to help him get in bed, and I saw something that made me tell him to hold on. I went to my own bathroom and threw up. beating heart

It isn’t that I am sick but instead sick at what I saw. I remembered back to the visit with hospice this morning and her telling me Al’s heart is so weak. He could go at any moment or hold on for several more weeks.

When I had looked at his toes each of the nails were dark gray and the foot was total purple. His nails at supper I had noticed were grayer than usual but I said nothing. I don’t speak to him about my observations unless he brings it up himself.

When I came back he was already asleep. I woke him and helped him get in bed. I took his hand and squeezed it firmly. I looked him straight in the eyes and said, “bud I just want you to always remember one thing.”flashing star

He asked, “what?”

” Always remember that I love you so very much. You are my baby brother.”

He said, ” I know.”

Then I rolled him on his back and he drifted back off to sleep.animated-candles1.gif


Al or Ghost in His Seat

When Al got off the bus tonight I wasn’t greeted with the usual smiles. The hand that is common to see raising half-way to wave to me was resting in his lap.

As the bus driver was lifting him down the ramp, she had to remind him to lift his feet, which he did with great effort.

Once I got him inside I took him to his usual spot. I sat him at the head of the table and told him this was the king’s seat. No smile for that funny comment either. I read the communication book from Day Program. It stated that Al was very tired today and didn’t participate like he usually does.

There was a knock at the door and I was right in the middle of preparing our supper. Al did manage to get out a soft word, knock. I went to the door and it was the Medical Supplier. He was delivering briefs, liners and pads for Al.

I always have to sign that I received them and while I had the pen in hand, the gentleman glanced in Al’s direction. He then commented, ” I see he is napping.”

I sort of chuckled but there is always this tiny part of me inside that wants to become a smart-ass, but I bite my tongue.biting tongue I have no reason at all to be a snippy gal. I get on the defense I think and it is wrong.  I wanted to say, “hey dummy, you work for a company delivering for the sick and dying. What’s wrong with you, can’t you see he is sick?” But instead said, “no, he is sick. He struggles to hold his head up.”

The delivery man looked at me, and then a way. I signed and he disappeared to his next house.

Al had trouble eating. He couldn’t hold his silver ware, and he was taking more than one bite at a time. I helped him eat because he was saying, “stupid tremors, stupid being sick. I don’t know why it has to try to destroy me.”

I wanted to rescue him before he got to the point of tears. I remembered back when my children were small and sad. I offered them the good stuff. Ice-cream with chocolate syrup. It did work. he ate that right up and even tried licking the bowl.licking the bowl

It seems that our Mother’s great efforts to teach us good table manners has pretty well left Al’s mind. He eats with his fingers or how ever he can get the bites of food into his mouth. Tonight I had to wash his hair after supper. He had mashed potatoes in it. I think they must have been flipped by the tremoring hands.

I tried several times  to start a conversation, but the ghost remained seated in Al’s seat. He has not really said anything to me thus far except,”I want to take a nap.”

He is now in bed and I am hoping for the ghost to disappear and Al to come back after he is rested.ghost


Chapter 2

English: A bowl of Raisin Bran cereal shown in...

Jane tried to get up again, and ended up running to the bathroom and throwing up in the toilet. She sat down on the cold floor after finishing and sat there, her mind whirling, as she had heard that this could be the signs of being knocked up.

Her mom was going to kill her if she was, so she kept it a secret, that she had just puked. After sitting there for a bit, she staggered up and washed her face in cold water, ran a brush through her hair, and brushed the nasty taste out of her mouth.

She walked back into her room, and sat on the bed. Was she pregnant, oh God, she couldn’t be pregnant. They had only fooled around one time, and you couldn’t get pregnant after only one time, could you?

She laid back down on her bed again, and pulled her covers up, telling herself she would just lay here until everything on the inside was nice and calm again. When she woke up it was an hour later. She sat up and felt fine, no bad or sick feelings, so she figured it must have been something she had eaten last night. Nope, she wasn’t pregnant. Wow, what a relief that was.

She got up and got dressed and went into the kitchen and poured herself a bowl of Raisin Bran, and dumping some sugar and milk over it, she took the bowl and went over to the table and sat down to eat. As she was eating her mom walked into the kitchen and started the coffee maker.

Lighting a cigarette, she went over and sat down beside Jane and asked her if she had a good time last night with that guy named Henry. Between bites, Jane mumbled yes, it was alright. Her mom asked when she got home, and Jane said around ten, and with that the conversation ended, and her mom went and poured herself a cup of coffee.

Jane got up and took her bowl to the sink, and ran some water inside of it and then left the kitchen and went back to her room. She turned on her record player, playing her forty-fives and sat down at her vanity and put her make-up on and tried experimenting with her hair.

In the end, she didn’t like anything she had done with her hair, so she pulled it up and put a rubber band in it, forming a pony tail, and with that she walked over and flipped the record player off, and went outside.

She went down to the lake to see if there was anyone there she knew, and seeing a couple of girls, she went over and joined the group. They hung out for a while, and then Jane saw Henry and left the two saying she had a good time, see you later.

Henry gave her a good squeeze and asked her what she wanted do today, and Jane came back with she didn’t care, whatever he wanted to do. He grabbed her hand and the two walked the beach, kicking their feet in the sand, stopping every once in a while, to hug and kiss. They walked and then found a grassy area, hidden behind a bunch of rocks.

The two sat down on the grass and looked out over the lake and then they looked at each other, and then they found themselves lying in the grass, touching and feeling each other, kissing and hugging. Not being able to stand the inner crying anymore, they got up and walked back to his car, and he drove them to a quiet spot on the other side of the lake and the two had sex.

Afterwards, they both realized they were hungry, so he drove them to a fast diner, and pulled up and parked. The two walked in and ordered a burger, fries and shake. They sat down and waited for their order, and then began eating like they had never eaten before. The food was so good, that conversation was small and soon they were finished eating, and they got back in his car and went back to the lake.

They ran into the crowd that they hung out with and they all played frisbee, and swam, and just had a fun day with no thoughts for tomorrow. Before anyone realized it, it was getting supper time, so they said their see you later, and they all drifted off in their own direction.

Henry drove Jane home and dropped her off in front of her house, and giving her a kiss, he watched her go to the door and then he drove off. Jane walked in and sat down in the living room. Jane,  her mom, was sitting there  watching the television, and Dave, her dad was nowhere to be seen.

Debbie asked Jane if she had a good day, but didn’t look at her for an answer, but went back to her television program. Jane didn’t answer but instead went into the kitchen to see what was going to be for supper. Nothing was laid out on the kitchen counter, and so she opened the refrigerator door and looked at the half-gallon of milk, and some orange juice.

She went back into the living room and asked her mom what was for dinner, and Debbie replied that she hadn’t really thought about it. She looked up at the clock on the wall and asked Jane if she was hungry already, and Jane shrugged her shoulders. With her mom not making any move to fix food, she wandered back into the kitchen and looked in the cupboards, and grabbed some crackers and a Twinkie, and took this back to her bedroom. She guessed this would be her supper for the night.

What a mom she had, stuck in a television box and not caring about anything going on around her. Her dad was probably already at the local bar, getting drunk. This was a screwed up family, Jane thought to herself. She wished she had a different set of parents, someone who gave a crap about her.

After eating her supper, she went back into the living room and her mom was still sitting in the same spot. Jane sat down and tried to get interested in the dumb game show mom was watching, but grew bored quickly, so she got up and walked outside to sit on the porch steps.

She needed a new life, a new adventure. Why was she the only one on the block that had a boring life? Why couldn’t she live in the house across the street where those parents seemed involved with their own two kids. She always saw them getting in the car together and going places. Their lives had to be better than her own life.

Bored from sitting , she got up and walked back in the house, and went to her room, turned her radio on and changed into her night-gown and got into bed.

Parkinson’s Disease Grabs Everything It Can

Today, I took my brother to our favorite restaurant, Zales Pharmacy, to eat lunch, as we had to pick up a refill for him. He walked in like an old drunk, staggering and tipping to one way and then the other, but his smiles were on full force, and the hand was waving to all he saw. He had a great appetite, and told the waitress that he just knew his stomach wanted dessert today. She laughed with him. All the employees at Zales think Al is pretty terrific. They have known us since we were tiny tots and have followed Al all through his years and his PD.

On our way home Al was laughing at me because I was stopping anywhere my eyes could catch a photo to shoot with my new camera. He said geesh, Terry, do you have to stop in the middle of the street? What if a car comes? I told him, I will move on then, no biggie.

We stopped at the grocery store and I got just a few things to keep all in stock, which came to $56.00 for two bags! I need to go into production management, where the money is being made. LOL

Then we came home and he had a therapist that was to come at 3:00pm, and she ended up being fifteen minutes late, and that set him up for smiles be gone attitude, why? Because it was his nap time, and he likes to take his nap at the same time each day, so when she got here, he was not very happy.

She made him walk outside on the ramp to her car and back, and she noticed that he does not pick up his feet, that he shuffles them. She said this was from the PD and there was not much she could do about that. She made him use his cane for balance and then he had to move his arms, holding the cane for balance, back and forth, trying to move only from the waist, but then he could not do this and she said his body was too rigid and stiff, and that his head did not move with the waist.

I watched as Al struggled through this, and then had to turn my back to the two of them, because all it did to me was show me how stiff his body was becoming.

She tried to get him to do some dance steps, simple ones, but his legs did not want to move. Finally she could get nothing else out of the work out, and his face was moody and full of blank staring. She kept talking to him and he was not talking anymore.

I felt sort of bad, because I had worn him out taking him out, but I needed his medications, and also he was a little ruffled at the thought of his nap being late. She left and told him she would be back on Wednesday, and he got up and headed for his bed.

I was a little ashamed of him because he should not show this kind of behavior just because he is not getting his way, but I did not say anything to him because he is a child in a man’s body, and his body was sore and tired from being out and his work out.

When he got up from his nap, I fixed him bacon and eggs for supper, yes, it was an easy supper for me tonight. I just don’t enjoy cooking anymore, especially when I am not hungry. He said he did not want any pain pills and then after coming to the living room, he asked when he was going to take his medications. I said you just did bud, you took them with your supper. He said oh, I didn’t see them or remember taking them, and then he asked me when is he going to have supper.

I find this confusion happening more often than not. Not with any memories of the past, but with the present living. Just think one year ago, he did not use a cane, or a walker, and he did not have a scooter. One year ago, he was continent, and he used to fill his own medications for the week. Now I hide the medications because he doesn’t always believe that I gave them to him and will try to find them. One year ago, he could tell me what he read years ago, and what happened in a chapter. Now the only thing he reads is his big print bible, or he looks at his coco cola books or he watches  reruns, because he remembers them from before and does not have to figure out the plot.

I am so glad for the smiles for these two days, and since they are back, can we send the other things that are progressing to the returns department?

Roobarb smiles

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La Lunchonette


Photography Course - The Camera: Different kin...