Grandkids and Pizza Hut


Well I am back from the Pizza Hut. I ate with my son, his woman and the three kids. It did me a world of good. I tend to forget my aches when I see how my grandkids love me. I still felt dizzy at times. I don’t know why this happens. My blood pressure is alright, so I blame it on the gait problems of Parkinson’s Disease until I am told different.

There is nothing better than seeing those big smiles when they see me coming and the two older ones yelling, hi grandma! The baby just grins and starts clapping his hands. I had the buffet which is much nicer than I remember. It not only had all the good salad fixins but had pizza varieties and wings.

I did pretty good too. I had thin crust and ate only the crust of one of the slices. Two wings and a big salad and lemon water. Not bad at all and I pat myself on the back for restraining my fingers on the extra carbs.

After we left they wanted to go to Meijer. I drove out there too and got some DiaDerm cream for my feet. With my neuropathy, this cream works so good at keeping my feet from drying out too bad. I have to use it daily, but oh well, I do what I can to save my feet.

I also bought some Yankee Candle Clean Air. It comes in a spray, bead and candle form. Meijer is the only place I seem to be able to find it in the beads. It is a great accent to the kitchen and bathroom, always smelling fresh and not covered-up.

They bought different things including bundles of wood. Although it is warm, they invited me over at dark to have a fire in the pit outdoors. I am going, so I can visit with them more. I better change from shorts to pants because of the  nasty mosquitos.

Here are photos of the 3 grandkids I was with tonight.

Easton 6 3Easton 6 2Easton 6

The Talk and Tricks of the Mind


I don’t know what started it this morning, the talk. Nothing was different. I walked into the same picture I always do, but for some reason I couldn’t let things go unsaid.

Let me back up a few years to the point where Dad and Al were still living together. I would say the words that described most of Al’s life from a teen on are; anger, fear, hatred. A pretty sad way for a teen to live when this is supposed to be some of the most fun years ever.

Dad never accepted that Al was different. Dad had his own issues and the only way he felt he knew how to deal with his insecurities was to take it out on Al. I have seen Dad yell, walk a way, shake his head, talk badly about us kids. I have seen Al red-faced, fists drawn, tears flowing, fear in his face. I have seen all I care to see.

There was a golden or rotten rule as I call it in our home. Mom and Dad were the boss. I could argue or try to but I could guarantee a slap in the mouth for sassing. My opinions really didn’t matter to them, they were in charge. As Dad said, he paid the bills, it was his house.

Now move forward to when Dad died and Al had his heart attack. Our sister is from another planet I will say because God would not like if I said what I really thought. Family turned their backs on us because of money. I ended up taking care of Al from the day he had heart surgery.

Now today, six years later, I have carried so much sadness because I am the one who sees the depressed face. I am the one who is not spoken too. I am the one who can’t fix what Dad did.

So day after day all these years I have walked into his bedroom with a smile on my face and a good morning to you when I get Al up. When the time was that Al could walk and M.S.A. was not even heard of, I made very sure Al got to experience life as he should have as a teen.

I did so many things for him. Now wait a minute, don’t think I want a pat on the back because I don’t. I did and do what I do for Al because he is my brother, I love him. I am not going to say there is a kindred bond between us. That was never allowed. Al and I spent our bonding days sitting on straight chairs with one toy and not allowed to speak. How could we bond, but I do love my brother.

I would and will do anything for him possible but sometimes, such as today, it just gets to me too much. The understanding side of me that tries so hard to over-look the lack of any feelings towards me just surfaced and boiled over like hot water on the stove.

At least once a month I give in and let my feelings be known to who ever will listen. I hear the same thing over and over. You are his sister, you are not his friend. He isn’t going to treat you like he does his friends. You won’t get the smiles or conversations.

OK, I get it but I don’t like it. It hurts, I am not going to lie. Although I do everything in my power to make him realize I love him it doesn’t work. I will go for weeks trying to push aside the hurt, then it comes out again.

Today, I was bathing Al and I just had this sick feeling. Inside I was bubbling over with thoughts of I do everything for you and all I get in return is tears, snotty nose, anger, no smiles.

Should I go on? No, because then it once again sounds like I am doing something for a reward. The only thing I ever have asked from Al is that he just lets me know in his own way that he loves me too.

I had him almost completely washed and I just put down the wash cloth and sank on his bed. I looked at him but he didn’t look at me, he never does. He has never looked at me when I speak to him. He will smile at me big if he knew I was taking him to an antique store or to Wal-Mart to get a new car.

It always reminds me of when I was young and I was a good girl. I would get rewarded for being quiet by getting a sucker. So this morning I just told him flat-out I wanted a smile. He ignored me. I asked him if he was having pain, he said no.I asked him if he got enough to eat, he said yes.

So I fell into my familiar trap. “Why are you so depressed-looking then. Why no smile? No pain, belly filled, cleaned up and clean clothes.” He responded with ” I don’t know.”

I edged further, my deep questions. ” Why don’t I get a smile, just one like your friends do? Why don’t you chat with me like you do everyone else?”

His response was tears and runny nose and then finally he said, ” Because you and I don’t get along, just like Dad.”

Well that was sort of a big deep void for me because I couldn’t fix what Dad had done. I was not allowed into family issues until after Dad died. I have explained to Al for six years that I am not Dad, that I loved him. I have told him numerous times I take care of him because I love him. I told him that no sister/brothers get along all the time. I told him that I get tired just like he does. That it makes me sad just like he does to see this illness doing what it does.

It didn’t matter. He sees me as Dad. He and Dad didn’t get along at all. His life was hell in his eyes, so the times that Al and I disagree, Al carries it for life. It is me, Dad and me, me all the same person.

He cried harder knowing he didn’t really understand why he feels the way he does. I think his mentality challenges doesn’t help separate the truth from the actions. So I am still back at square one. Nothing will change. I get a little hard inside, telling myself not to get so involved. Just take care of him, do the best I can and be done with it. I tell myself to quit going out of your way because you are never going to get it through his head that a sister and brother can argue but that doesn’t mean that I am Dad.

I know this is personal, I know you, my friends can’t fix it, but I swear on my grave, I am having pain in my hands today from Diabetic Neuropathy, my body aches from tugging to roll Al over and I just don’t need a headache on top from crying, so I wrote.

Al when he was little

 

Mom Is In Heaven, But She Was Here Tonight


Today was not really too bad a day until this evening.

Al had his shower by the Hospice aide, then he laid down for a nap. He knew that I was going to take him to the fair today since it was free day. I told him we would eat supper there as a treat, even though I know how darn expensive fair food is.

To get Al ready to go somewhere it takes a lot of physical effort from myself. I have to take his wheelchair and him out to the car. Place him in the car, buckle him up. Place the folded wheelchair in the trunk. For me this is quite an effort as I have to lift it to trunk level and then push it inside. You also have the foot pedals and the cushion that he sits on.

For today I also had empty boxes from his briefs and liners and pads to throw a way. I had three bags of trash to take out to the trash. I had to get his and my medications for supper. I had to remember to take an individual size container of applesauce so he can take his pills.

It really puts my body through the wringer, especially my feet as they have Diabetic Neuropathy. Any time I lift or walk much they ache and burn, but I look at it as not for me, this is a treat for Al.

So we get to the fair grounds and it is packed for Free Day. There is no place to park that I won’t have to push his chair through gravel. I end up driving straight through to the actual fair and  park beside the radio bus. I leave Al buckled in and hunt down someone who works for the fair board.

I have to know if I can park inside the perimeters of the fair and I have to admit to these men that I can’t push the wheelchair through gravel and stones. They were very nice and said that today was open day and they would allow it but after today when everyone had to pay I could no longer do it. I told them that this was the only day I was coming and they stayed near by to make sure I got Al out.

After Al was out of the car, the men pushed him up the small slant so I could have it a little easier. I thanked them generously for their help in all they did.

I took Al to one of the food stands and found two empty seats. We were under a roof so he didn’t get too much sun. I ordered and paid for our food and then we ate. I knew it had been a couple of hours by now since I had changed him so after we ate we headed to the Arts building where I knew there were restrooms.

What I didn’t count on was that the bathroom doors of both gents and ladies doors were too small to get the wheelchair in. I started freaking out inside wondering how I was going to change him in private.

I am standing there going over ideas when I spot a lady that used to be Mom and Dad‘s old neighbor. I go up to her and explain that I could use her help. She sort of hesitated, which I guess this is normal. She did help. We got Al as far in the bathroom as the chair would go and then I stood him up and she and I walked him to the sink so he could hold on.

All of a sudden he starts crying and he never stops. She and I try to get him to stop but he is embarrassed that he needs help and more so because he and I knew her. But I did what I had to do, other wise we would have had to go home.

We got him changed and she washed her hands and then my turn came. We got back out in the main part and he is still crying. Then he starts his ranting about his disease. Going on and on about how it is taking over his life. He did something wrong to have it. It is taking over his whole body. He is going to die.

People were staring. The lady that helped disappeared. I tried to calm him down but it didn’t work. After all the physical work and the big dollars for the meal I had no choice but to bring him home.

I felt cheated, I am not going to lie. I had to dig down the fair people in order to park. My feet were burning from trying to push him in gravel. I begged for help to change him and now we were going  home.

On the way home he was still crying and feeling sorry for himself. I have so had it with his feelings of self-pity. I am sorry, I don’t mean to be a meanie, but I have told him so many times he could be so much worse off, but he is all about him and it will most likely remain that way.

After getting home I unload the wheelchair, put it back in a sitting position. Put the pad in it. Help Al get out of the car. Lug him up the ramp, open the door, pull as  hard as I can to get him over the bump from the ramp into the house, and finally get him seated in his lift chair, safe and sound.

My back is hurting, my feet are burning, and my fingers are kind of numb from hanging on to the chair to pull him. Still he is going on and on about his illness. I finally looked at him and said,STOP, I can’t take your pity talk anymore.

I explained what I went through out of my love for him and how I was disappointed that I didn’t get my ice-cream from the Dairy Barn at the fair, and now I would have to wait a whole other year.

He is not listening. I should have just shut my mouth. He is telling me how his body is sick all over and I am agreeing with him. He is telling me that it is probably going to kill him and I once again agree.  He started to say something else and I stood up from his bed and walked out of his room. He sat there in silence and just now turned his TV on. I bet he sat there for half an hour in silence. Maybe he was digesting our conversation.

I was pooped and sore. I came out to the computer and plopped my rear end down and lit up a cigarette. I knew in my heart that outings with Al were officially over. There would be no more pleasure trips unless I had guaranteed help, and I find that hard to believe it will ever happen. Everyone I know runs the other way when I ask for help.

When I took out all the trash I had laid clean bags inside of the cans. When I finished my cigarette I leaned down to pick up the bag. I felt something brush my arm. I thought it was a fly but it wasn’t. I turned around to see what it was and right here in the middle of my computer desk laid this. I instantly felt or heard something tell me, it’s alright, I am here with you. I didn’t get scared, instead I felt comfort as I knew in my gut and heart it was Mom. Threads that she used to sew with and the wads of thread she left behind were exactly like this one. This is in the same color as the feather I found on my bathroom floor a few days ago.

Thanks Mom, it brings me comfort that you are here and you understand……………………

my mom and dadMom and Dad

stringThe wad of string she left me on my computer desk. I love you Mom and miss you. Al is asking for you, he misses you too. I love you Dad and so does Al in his own special way.

Just Call Me Ms. Detective


English: Half a dozen home-made cookies. Ingre...

English: Half a dozen home-made cookies. Ingredients: butter, flour, white sugar, brown sugar, eggs, vanilla, soda, salt, and chocolate chips. Français : Demie-douzaine de cookies fait-maison. Ingrédients: beurre, farine, sucre en poudre, œufs, vanille, soda, sel et grain de chocolat. (Photo credit: Wikipedia)

My feet are on fire!!!! I have Diabetic Neuropathy. I have been taking so much stuff out of my brother’s room. We are switching rooms and bathrooms. His wheel chair will not be able to get into the hall way to his old bedroom and bathroom.

This is very hard work when there is a lot of walking for me. The nerves in my feet become  fire bugs. I have photos I am going to show you of his stuff and his and my rooms. I am waiting on my son to get here. He is going to help move the beds etc from room to room.

I don’t have proof but I think I put all the pieces together about Al not feeling well. I went out to see him. He was just trying to rise from napping. I asked him some questions while trying to get his shoes on. You know Ms. Detective here. I went to raise his leg so I could put the first shoe on and his legs were so stiff when I moved them they didn’t budge.

I am always amazed at how PD(Parkinson’s Disease) works from the inside of Al’s body. You don’t see the damage it is creating. After getting his shoes on he could not stand. I had to get help. I have to admit this worries me some with him coming home. I am hoping that moving more by going to the Day Program will help grease his body a little and loosen it up. If not, I will have to go to plan C, D or E.

Al had fibbed in my opinion. After I wrote you about him not going out because he was sick I thought instantly to a bag of cookies I had baked and taken to him. The detective in me targeted those cookies. Where were they? Where was the bag? How many have you eaten out of the three dozen I brought you? You know they type of questions……..

His reply was that they were lying on top of the trash can and the housekeeper had just came in to clean and picked them up and tossed them in the big trash can. I asked him why he didn’t say anything to her and he said, ” I don’t know.”

I searched the room upside and  under in and out but nothing. I went to the nurse because at that time I had no solid reason not to believe Al. I told her about the cookie deal and that I had actually seen the housekeeper outside Al’s room only minutes earlier.

She hunted the lady down and with gloved hands dug through the trash. She came back with there were no cookies in the trash but there were empty bags. I interrogated Al once again.

I made up a little story to get the truth out. I told him that they may have to take him to the doctor and do tests to see why his stomach is so sore and sick. I said,”If you tell me the truth that you ate all those cookies it will end the search and concerns. You won’t have to go to the doctor then.”

He said “Well maybe I did eat them in the past two days, I don’t really know.” The nurse was standing there and she looked at Al and said,” You made me dig through that trash when you are sitting here lying?” I shot her a dirty look.

I know lying is wrong. I also know that too many professionals have said Al is eating left and right because he is so depressed. So on one hand I hated to bitch at him because of is over eating due to depression.  On the other hand lying is lying.

I explained to him that lying is wrong. I told him to always tell me the truth no matter what, I will understand. He said, “Sorry sis, you make good cookies.”

Oh brother, use that soft crap on me now will you I was thinking. I had him apologize to the nurse. He was in bad shape today not only from the cookie party but his body was in so much pain.

I wheeled him down to the dining room but I don’t think he was going to eat or at least not much. He will feel better after he goes, shall we say number 2? Now if the cookies were borrowed or dumped or eaten or given a way and he is still ill tomorrow, I will investigate further on his health. I am pretty sure that the reason Al felt sick and could not go out is too many cookies.

I imagine he ate them between you and me, but I can’t brow beat him when I have no proof. After all look at all his other things that have been five finger lifted since he has been there.

I will be so glad to get him out of there. The depression does affect his ability to remain strong. Seeing and socializing through day care will do him wonders, if I can just get his room and mine done.

Al's room movingAl's room moving 2Al's room moving 3Al's room moving 4my room movingmy room moving 2