Win-Win Situation For Al

Today it seemed like a chilly Spring day. The temperatures were in the thirties. A much higher temp than thirty-five below zero. I went outside our front door. It felt good to get out.

I drove to Wal-Mart to get Al a new baby monitor. One of those that you can carry with you. With his new air bed motor being noisy  and the fact the caregiver has hearing issues, I felt like I was a big, old nag continually letting her know Al was calling her name.

She didn’t mind me telling her, but I minded it and with Al’s bitter soft voice, I admit he is very hard to hear. I got Al a new box of ice-cream and some popsicles. The nurse thought the treat would feel good on his lips.

I couldn’t get the ice-cream without the chocolate syrup of course. That is the way he likes it. For several days this has been all Al will eat. He eats very little but at least he will eat that. Along with some other groceries I wanted to look around for clearance items too, but started feeling a little ill.

I tried hard to fight it but it continued to get worse so I stopped at the Sub-Way inside the store and picked up two sandwiches, one for the caregiver and of course me. Both Chicken, Bacon Ranch on flat bread. I like to do nice things for Stacy if I can, because she is so caring and good with Al.

Once I got back into my car to leave for home I instantly felt better. I knew then that it was me that was causing the ill feelings. I was out of my comfort zone. I was in a place where many people were and I was uncomfortable.

I started the car and waiting for it to warm up again, I questioned myself on how long I had actually been in the house. I couldn’t remember. I knew that I went down to the grocery store before the blizzard and got some emergency foods so I didn’t run out. I also remembered going to the big grocery store the week before Christmas.

Other than that the bad weather and Al’s health have  held me inside our home. I can’t let myself become a hermit. I can’t believe I didn’t really enjoy being out and on top of that almost made myself sick.

All the time I was out I thought of Al and hoped he was alright. I checked my cell a couple of times to see if Stacy had called, needing me. Being a caregiver involves so much more than just the physical care of a patient. I believe it takes hold of every fiber of our being when it is a full-time job.

I made up my mind that when I can, I will get out for a bit. I can’t control the weather, and I can’t fix how light-weight my car is, but I can get outside for a breath of fresh air more often. I need to push myself harder and realize I am not the one who is lying in the bed sick. I have two feet that work and I do not have to be glued to the four walls.

I will be glad when Spring is here and I can get back outside again. Maybe sit in the swing, or watch the birds. If Al is still here, I can carry the portable monitor with me or just hand it to the caregiver and let her be doing the job she was hired for.

Al loves his new air bed and this is nice. But I think with having to get him out of bed yesterday for the transfer of beds was hard on him. His vitals have changed and haven’t returned back to his normal. He has slept around the clock since yesterday, only waking up to eat some ice-cream. I am thinking part of it is the comfy bed and part of it is the illness. I have been told by many that in the ending days Al will sleep almost all the time. Either way, God is in control.

So many have been praying for Al’s release of this body into a new heavenly body. Maybe God used that new mattress as a way to speed up the process, and maybe not. All I know is Al is very calm, very peaceful, and sleeping 22 hours out of 24. If this is the way Al will enter into his new life, then it is a good thing, and if this is the way his body is going to react to the new bed, then that is also a good thing. Either way, it is a win-win situation for Al.

blue scene

O Happy Day

Oh happy day, it is Monday. Freedom, I get out of the house. Now don’t think I am a nut case, but being in the house for 48 hours with no fresh air, I feel like a baby chick bursting out of my shell.

Even Al woke up with a smile this morning. It sort of…

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O Happy Day

Oh happy day, it is Monday. Freedom, I get out of the house. Now don’t think I am a nut case, but being in the house for 48 hours with no fresh air, I feel like a baby chick bursting out of my shell.

Even Al woke up with a smile this morning. It sort of rubs me the wrong way because he doesn’t smile for me usually, and I am the one who works so hard to get one smile. I can understand on the other hand though. Hey, he gets a way from me for a while. Although he ask to be in his bed, he breaks apart from it too.

My Christmas tree took a dump on me. The lights have trickled out over the weekend until I have one little place lit, so off to Wal-Mart for new lights.

So as I say Oh happy day!

Three Good Days, M.S.A.

Al has had three good days, but as usual it comes to a halt. I have to believe it is the M.S.A. that causes this. Human minds are doing all possible to slow this terrible illness down. There ideas work for a few days and then it stops.

Last night when he came home from Day Program his communication book said that he had tremors most of the afternoon and had napped. The tremors continued throughout the evening.

He ate 50% of his supper. When I put him to bed his legs were frozen bad. He could not move his legs at all. I sort of had to tug and pull to get him into bed. I noticed he was slightly tipsy when I stood him up.

This morning he was tipsy too. Not like drunk but definitely not steady. He swayed to the side some. I noticed labored breathing from him no matter what he was doing. Just to move was a chore for his weak body.

During breakfast he did eat 100% but he stared quite a bit. At first I thought he was having another seizure, but it wasn’t exactly like a seizure. He would hold a piece of egg in his hand for at least a minute staring straight ahead, doing nothing. Eventually he would eat it.

I would say it was more like the body had lost touch with all thought process and Al was patiently or maybe even unaware of what was happening. It took a while but he did finish. After breakfast I washed him up and once again heard the labored breathing as I got him dressed and his brief changed.

He wanted to sit in the living room in  his wheelchair. He knew that the Hospice nurse would be coming soon. When she arrived, Al’s arms were dangling over the side of his chair. His voice had become terribly soft and quiet. The staring or non-movement was there for her to see.

She checked his vitals as usual. She said his blood pressure was low, at least for his normal readings. She asked him questions, but when she was listening to his heart, she kept at it for a few minutes. Usually she listens and says everything is alright. I felt anxious and nervous. She was taking too long.

I grabbed my camera and went out on the ramp. I had to get my mind on something other than what it was thinking. I found this bug, so although it is not a beauty, it  is was alive and posing for bug 3

Afterwards I went back inside and she was typing on her computer. She looked at me and mouthed something, but I couldn’t understand her. She then came to me and told me to keep an eye on Al today. She didn’t think he should be going out of the house.

My breathing became a little heavier as I asked her, ” What is it?”

She said that his heart is stopping off and on. That I should watch for his breathing as his heart was stopping for about 15 seconds. Of course this scared me. Al didn’t understand at all. He knew we were going to Wal-Mart today. I told him maybe we would go later depending on how he felt.

It is weird that Al doesn’t notice much about what his body is or isn’t doing. He is evidently used to what is going on in the inside. The nurse said it wasn’t bad as far as how long it is stopping but to me this is just another slap that things are continuing to move downward, even though on the outside he had three good days.

I thought of how my sick brother seemed so good and the green bug I had just photoed outside. Life is still moving all around us, but you have to look deep inside to see what is truly happening.

Big Bitch Session I Have Given

This morning Al was teary-eyed again. I couldn’t take it. A Saturday when I knew he would do this off and on all day. I didn’t want to be sad, so I got to thinking, what can we do.

Bingo, not too much pain so let’s go out. I asked him if he wanted to eat lunch out and he didn’t say anything. I ask him if he wanted to go to Wal-Mart after we ate lunch and look at cars and then he said yes and smiled at me.

So clean face and hands, clean brief, placed him in his wheelchair, got my basket of needed supplies and off we went, just like Little Red Riding Hood.

We ate at a burger joint that Al picked out. He did real good, considering, but he was more worried about people seeing him spill food and his tremors. I told him to forget them and just keep his eyes on me. I would make him forget the strangers.

We ate, by now no matter what we eat or where we eat, it takes Al about forty-five minutes to eat. After I was done I people-watched. Cleaning him up and loading him and the wheelchair back in-car we headed for the junk store, Wal-Mart. Well I guess not junk store, that is sort of crappy term, but this store has changed. They took out American products and brought cheap stuff in for same prices.

So I got my bag of wintergreen lifesavers. I am so addicted to them. I must have one for each cup of coffee I drink. I just love the combo. Then we went to the toy section. Al picked out a new police car. It is pretty cool if I do say so myself. Oh he was so proud. He held it like a new-born baby.

We left that department and went down to look at these razors I was told about. Someone had told me they sell battery operated disposable razors. I looked at them. They were a little pricy, but my friend said they last a long time and work well. I thought, what the heck, I can only be burnt once, so I bought one.

We were just getting ready to leave that aisle when we ran into an aunt we hadn’t seen for almost six years. She was on one of those electric scooters. I saw her coming and she nodded to Al and then went on by.

My body started shaking. This time I was not letting any of this family get by with their rude shit. I stood in my place and yelled at her as she was getting ready to turn the curve.

“Aren’t you even going to say hello to Al? When is the last time you saw or spoke to him, maybe six years ago?”

She said nothing and went on around the next aisle and then came back. She said, “Hi Al, I wish Jeff wasn’t asleep in the car while I am in here. He would probably want to say hi to Al.”

What? She is speaking to me? She is supposed to be speaking to Al. He is the sick one.

Then she says, “I saw a picture of you Al from Joan.”

Joan is our old neighbor that helped that day I took Al to the fair and needed help getting his brief changed because of small doorways. After she helped she wanted to take a photo of Al. She asked him and he said alright.

I asked,” Is that all you’re going to say to him? You may want to talk to him for more than a few seconds. Your chances are running pretty low.”

“Yes, I heard he is real sick.”

She turns her key back on and starts to leave. As she is moving a way, she says, “well, maybe”

That was it. She was gone out of sight. She didn’t even hang around to complete her sentence.

I was so pissed. I have every right to be upset. I give myself that pat on the back for not stomping my feet, crying and running up to her and shaking the hell out of her asking, “what the hell is wrong with you?”

Of course I know what is wrong. She is still friends with the mean woman who dated my Dad when he was dying. My aunt chose to believe anything or everything that this mean old bag chose to say over her very own family members.

If you have no clue as to what I am talking about, go to my Al’s Parkinson’s Journey and read the chapters. It will explain everything to date.

I thought I was being so cool but Al said, “it’s ok sis, at least she said hi” and then he started crying.

That aunt ruined our whole trip. I was even more fuming. How dare her ignore her sick family member. Forget me, although she has hurt me terribly as the aunt in Florida and the Aunt in Indiana, I will survive. I have been hurt plenty.

This whole things stems from one thing. My Dad told everyone in his family and friends circle that when he died the Will was set up a certain way. Well without going into legal and personal details, Dad didn’t word it correctly and there were a lot of gaps.

I wasn’t going to go explain personal business to anyone. The lawyer and the courts figured it all out and I have Al in my care. Enough said I guess, but what ever happened to support from families?

Is it wrong to accept that life is what it is and not everything turns out the way it was planned? For me, I was the biggest winner of all. I have Al in my care. He is not in a State confinement nor a nursing home. He is with me.

I guess I may or may not have made an ass of myself here at WP, but I get really sick of people, especially family, who think they know it all, and yet know nothing, and they ignore us, Dad’s children. Some day Al will be gone. And who ever shows up at his funeral will be the ones who cared. And who ever does not, the hell with them. I can totally understand why Al spends some evenings crying about no one being at his funeral.

The cards keep coming in for Al. He is being shown that people care. We don’t receive any cards from family, so I tell Al that these cards come from extended family, people who love and pray for him.

If anyone else wants to send a card to him, please email me at

for his address.

Al is in  pain now. I think the trip was a little long and the mishap with the Aunt upset him. We are home now naturally, and I gave him some pain medication for his legs. He is now napping. I hope he is having good dreams.Al in the morning