I Am Sore

When there is a Parkinson’s patient in the house, it is not a good idea to plan many things

Audio baby monitor

Audio baby monitor (Photo credit: Wikipedia)

in advance. I have never been this way. I like knowing what tomorrow holds, and maybe the next week also.

Today, I have not been on the computer much, not because I don’t want to, but because I am so sore. I don’t get too much sleep anymore, because Al stays awake until wee hours in the mornings. Last night was no exception to this now familiar routine. I think I went to sleep about 2am and at 5am, I heard the music of his voice coming through the baby monitor that sits by my head on the night stand.

It is a good thing I am a light sleeper, because I heard a soft voice saying help me, help me. I jumped up like there was a fire, and walked quickly to his bedroom, and there he stood in a half-bent position, clinging to the corner of his dresser with both hands. His knees were bent in half from waiting for me to arrive and from however long he had tried on his own to make it to the bed.

He had to use the restroom, and he is trying so hard not to wet his briefs, that he helps himself to the floor and off he trods to the bathroom, and I keep telling him, please call me when you need to get up, but he does not want to give up his independence.

So, I look quickly around, and there is nothing anywhere to help me. I hold him up with all of my sleep power, while I watch his body tremor, and  his legs will not move. His body is frozen, a part that goes with PD. The mind is not connecting with the legs so when he tries to move, the legs don’t follow, and this is a big reason there are so many falls with these patients. I have seen him rock back and forth on his top half, but the bottom half are frozen to the floor.

I am not kidding, I told the legs to move, I marched in place, trying to get his legs to follow my actions. This went on for about five or six minutes, until finally movement was seen, but it was a battle to walk him to the bed. Now my back and shoulders and neck are throbbing from trying to hold him up.

I called the home health care nurse and told her what had happened and she said it was time to get a hospital bed and a bedside commode. We just happened to have a doctor’s appointment today with his neurologist, so I relayed the message to him.

He had not seen Al since February as he is pretty much a PRN doctor now to Al. He was surprised at the changes that have progressed in him. He spent quite a bit of time talking to me about the different areas of PD and he said that this was a bad case.

He said that the complete brain was being affected by the disease, and that Al could not help talking about death, as this is what Al’s body felt like to him. When the doctor mentioned a sunny day, Al said it was gloomy in his head. The doctor explained that Al was in the fifth and final stage of the nasty disease, and he was more concerned now with what he called , supportive care.

In other words, making sure that what ever Al needs to make him more comfortable, if I can pull it off do it. No more medications can be given for pain, so now two doctors have said no more pain med trial and errors, I am forced to believe it.

He wrote a prescription out for the commode and hospital bed, and it will be delivered here tomorrow at noon. It is sad for me, I have had too much information given to me, although, I need to know what is happening in our lives.

Remember the lady who sent Al the two boxes? Well, she and her husband drove four hours to meet Al and me today. We met up at Al’s favorite restaurant, the soda fountain. It was wonderful to meet them both. God picked the perfect timing for this, as for an hour it got my mind off of Al and onto other things, and she spent a lot of time talking to Al about coca cola. He loved it, but as he tired out, he started crying, and it didn’t stop, so we all hugged and said our good byes, and maybe one day we shall meet again.

We came home and I helped Al get undressed from the warmer clothes I had dressed him in the morning when it was chilly, to his favorite outfit, just his brief. He gets so hot and sweats so easy from the PD.

Tomorrow is a new day and it will be a big day more for Al than me, although, I will have to make sure my house remains straightened up. One therapist will be here at 8:45am, his shower girl will be here at 10:30am. The bed and commode will arrive at noon with complete set up done by them. Another therapist will be showing up sometime during the afternoon, and the home health care nurse will be here at 4:15.

I am not looking forward to all of activities. No nap for Al and no nap for me! LOL

Three Strikes, Almost Out!

This morning started off bad again. Please do not say I have no patience, I do, and besides, many of you say I have a lot of patience, but this full-circle talk is starting to test my patience.

Al was quiet this morning when he got up, which is a bad sign to me in the first place. No wave of the hand and no smile. I think maybe his tremors have kept him up too late again, as I snuck in and checked on him at three am and he was still up. He is taking prescription sleeping aids to help him sleep past the tremors, but obviously, they do not work.

After his breakfast was over he came over and sat on the couch near me. He began by showing me a new bruise he had on his leg. Actually, I could not see it, even when he pointed to it. I had to get up, turn the over head lights on and then I saw a new bruise the size of a pea.

This went from the bruise to two hours of crying and the negativity of his life. I heard that I want him out of the house. I want to live here alone. I don’t care about why he has Parkinson’s. I won’t make the doctors fix it. He can’t do anything anymore. He can’t make his bed. He can barely walk. This list was so long, I don’t have enough fingers to count the remarks he made.

I once again, and I don’t know how many conversations we have shared, told him all the good things that he should be thankful for. He can walk, he says not good. He can feed himself, he says too slow. He can still use the bathroom, he says he struggles. No matter what positive thing I said, he found a way to throw it back at me. I couldn’t take it anymore, and went to my bedroom, and this one time I slammed the door. Yes, it is still on its hinges! It gave me a release. It freed me of my wanting to go out and slash my worst enemies tires! It saved me from digging in the winter garments for my old set of ear-muffs. It felt so good. As I slammed my door, I heard him exclaim, see, you don’t care about me, you left me sitting here alone. I ignored it and laid my head down on my pillow. I knew that it would welcome my company and wrap itself around me.

It became lunch time, and I had to pick-up medications again at the pharmacy. Since this is Al’s favorite place to eat, I planned on eating here also. Here is a photo shot I took today while we were eating. I mention this place so much, I thought maybe you wanted to see what it was like.

As we were walking back to the lunch counter, Al was pretty buckled at the knee. I reminded him to stand as tall as he can so he won’t fall, and this brought more tears, and a loud what did I do now? I didn’t do anything? I asked him to lower his voice, and we did make it back to our seats.

I told my son about it earlier this evening, and he said as long as Al can do it, let him be. I got on the defense immediately, explaining I didn’t want for Al to fall and I felt I needed to remind him. Son says, I am taking away his manhood, that Al feels like I am bossing him. I have thought this over tonight, and can’t decide if I am right, or son is. I hate to see Al fall, and if I don’t say anything and he does fall, will I feel guilty? Should I just let him live his illness in peace, and stay out of the voicing concern areas? I don’t know yet. What do you think? I understand my son’s view, and I get mine also.

So, my son and family came down to grill out. Everything went well. Al didn’t want to eat outside. He prefers the table, because his nose is an inch from his plate now, which makes it easier for him not to spill food, so I let him eat alone, but turned the TV on for his company. They stayed for a short time afterwards, and then decided to head for home. As they were gathering left overs and children, Al was already struggling to get up off of the couch, and before they were all out of the door, he was gone, back to his room.

Do you have any idea how this makes me feel when he does this? I have had to deal with this now for almost five years. I know what all the doctors have said. He has transferred his feelings for dad straight to me, so he doesn’t see me as a friend, more of a boss, even though I try hard to guide gently, and not sound bossy. The way he makes me feel though, is that I am not worthy, period. Only others are worthy of his time. I have been working on getting rid of this attitude of him not wanting to be around me, and actually, I am not too much better at it than I was five years ago. I still have room for growth so maybe one day I will finally accept this for what it is.

So this was our day. Looking forward to meeting my pillow once again, and starting everything all over again tomorrow.