I Really Didn’t Fall off the Earth

I didn’t want you, my friends to think I fell off the earth, I haven’t, but I admit, I haven’t been on the computer too much. I have a tablet I read and play on when I am in bed, but it is very difficult to write a post on it with a smaller keyboard.

I have thought of you so much, but I just haven’t felt well the past few days. I think Parkinson’s has something to do with it and the fact that I have been trying to keep the thermostat down in my house. I am finding out quick that this little house is quite expensive to heat.

The pay-off wasn’t good though. I was freezing. Every piece of my body was freezing. I did learn through the Parkinson’s web sites that being cold is a symptom, so this was easy to understand, but my blood pressure went up too.

At first I was taking my BP too often and I knew I was; but I was worried. It was running high, not  high enough to cause me danger, but much higher than my usual. This in turn caused me to stress more. Finally I made myself just check it in the am and pm. I also made me an appointment for the doctor right after the new year, when my insurance will kick in.

I learned that if our bodies get too cold along with my age the cold bothers us more and therefore our BP goes up. So I gave in and turned the thermostat up a little but will turn it down at bedtime and keep it low through the day, using my electric fireplace, then back up over the supper hour.

I already feel better. I still have a dull headache around the temple but I feel better emotionally after talking to the nurse at my new doctor that I wasn’t in a danger zone. I feel even better than that knowing I now have an appointment.

I am not interested in getting a neurologist for my Parkinson’s. I know too much about it after my dad, his mom and her sister and my brother Al, all had it. I can get an official diagnosis on paper but what good will it do me? I already know about all the PD medications and the big side-effects. I know there is no cure too. Unless my new doctor strongly advises me I won’t deal with a specialist at this point.

But the doctor can help me get new prescriptions for my blood pressure and check it instead of me doing it. He can also check my sugars, so it will feel good to be back in a doctor’s care.

When I moved to Kentucky, my health insurance was no good here. I think I told you that already. I am on straight Medicare right now, so going to a new doctor will be quite expensive for the first visit, so I wanted to wait until Jan 1, plus I had enough refills of my medications to get me to that point of my appointment.

So, I jabbered enough. Time to take a shower, turn the heat back down and climb into my bed layered with lots of blankets. I will talk to you all very soon. Love and hugsindex

I Wish I Was A Robot

As you know from my post this morning today has not been one of Al’s good days. Moving to the noon hour I met the Hospice nurse at Al’s Day Program and we both went to see Al. He was no better. I would say he was worse because he was crying.

The nurse tried to talk to him but he could not be understood. His blood pressure was on the high side but this was attributed to his being so emotional.

He was on a high pain level and had already been given his pain medication. The nurse gave it to him again and an anxiety pill. I hope it worked because when she and I left he was still not good.

I tried to get him to stay home but he didn’t want to. The nurse told me it was time to start speaking for him. The Hospice doctor had previously stated that Al would go down faster if he remained going to the Day Program and Al was explained this.

He wants to socialize so bad he is willing to risk his life; but there is a part of me that wonders if he really understands what he is doing to himself being mentally challenged.

The nurse saw me holding back with my answer. I am sorry it is so hard to take a way from him what he wants so bad. This is all that he has left; his Day Program;  at least in his eyes.

I know that Al has bad and good days, and I see the bad days slipping in more and more. The nurse told me Al was about bed-bound ready. This threw me back. Am I that naive? Do I not want to recognize he is so ill? Maybe I carry more hope than I should.

To take a way from him made me start to cry. The nurse took over which I guess was a good thing. Starting next  Monday, Wednesday and Fridays Al will not be picked up until 10:40 am instead of 8:45 because of a new shower gal. So what the nurse did was decided for him to start staying home Tuesdays and Thursdays all together.

I think from what she said she is going to have the gentleman who is the Social Service worker with Hospice tell Al that he needs to cut his days down. She thinks him hearing the news from a guy will go over better.

I wish I was a robot, no heart, no feelings, no nothing. There are live people walking around like that but I am not one of them. To me, this is one more step towards Al’s end of life. I admit his body can’t take it. The bus ride, pretty much being awake all day, but the flip side is Al’s livelihood, what’s left, bed and TV and the rotten M.S.A.robotand a little bit of Day Program.

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 Fell

These past few days Al has been getting regular doses of pain medication. Along with his pain patch he has seemed to feel a bit better.

In fact his pain level is low enough, that he has become bold. His neck stays up a little longer. He reaches down to pick something up off the floor. He has tried letting loose of a stable object and try walking.

I have had many occasions with him where I have been able to talk to him about the dangers he is putting his body in. Bending over without the brakes on the wheelchair being locked is a big no-no and I have told him so.

Don’t get me wrong, I love seeing him in less pain. I love seeing him a bit more like his old self, but the fact is; he is still very sick. The illness hasn’t declined, it is only hidden by our infamous pharmacy companies help.

Al is blind sighted by this and it has scared me for a while now. This morning he slept in until I finally woke him because of medication times being very important. He ate good. I think his appetite has picked up some. I appreciate this although I hate to see him put any of his loss of weight back on.

After breakfast I washed him up and got him dressed. He brushed his teeth and I shaved him and trimmed up his mustache. He then wanted to sit in his lift chair. I got him located properly for transfer and locked his brake.

I stayed near him and watched carefully as he stood up and transferred the two steps needed to get in the chair. After the first step everything changed. He let loose of  his support and down he went.

He hit the floor with a big thud. I actually felt the floor shake under me. As he was falling my brain kicked in. I couldn’t stop the fall but I did reach out and grab his shirt and hung on for dear life.

I think it saved him from injuring himself on the container that holds his briefs, liners and pads. I hate myself when I can’t stop it from happening. I just couldn’t grab him fast enough. I checked him out and saw no blood or damages. I helped him back in the lift chair and I could see that he was very shaken up.

I didn’t want to cause more emotional damage but I had to throw in the remark that he needs to somehow come to terms with his illness. He has to admit it at least to himself that his body is sick and very weak.

He told me that he forgot, which maybe he did. I think our minds are used to doing what has come normal for many years. Walking, talking and breathing. When the body becomes sick and weak and these things we are used to doing without thinking become a struggle, maybe our minds don’t want to admit we are changing.

Maybe there is a part of Al which is desperately trying to prove the illness wrong. I don’t know. I know that I can convince my mind thoughts of things that aren’t quite as they seem, so I assume Al can too.

I had to call the Hospice nurse and she came and checked him out and made a report on him. His blood pressure was low she said. It was 85/58. When she told me this I knew that this could be a large tribute to why he may have fallen.

I will be watching more carefully when he rises from a sitting position, making sure he is steady before that first step. Al has been complaining periodically about blurred and double vision. I wonder if his low blood pressure has anything to do with it. Or maybe it is a side effect from his illness or the fact that he is taking one of the pain medications on a more regular basis.

Tonight after supper, which he ate really well, I washed him up and changed his brief. I helped him get in his lift chair and he seemed to be more careful and cautious. When he was seated and comfy he looked at me and asked, “I am so tired of being sick, when is God going to get me out of this and take me home?”

Al July 4th