She Says, He Cries, I Think

US Navy 100607-N-6410J-036 Physical therapist ...

I hear my voice saying calmly, it is alright, we will blame it on the dementia. You didn’t mean to, it is not your fault, but on the inside I am yelling at this PD. Two good days in a row, hardly any tremors, and this is including the day today.

The therapist comes and gives Al exercises to be able to strengthen his arms, so the goal of lifting the full glass up to his lips, instead of lowering his head to the glass, might be accomplished. While the therapist was here, she was telling me that Al is improving, that he has made progress in this one week they have been here.

Inside of me, I am saying show me where? Show me where the tremors are laid back for days. Show me where he did quit soaking the bed? Tell me that now I will not have to cut food up nor feed him. Tell me he can walk better than yesterday.

As the therapist was using plastic, empty cones, laying them on the floor and asking Al to pick them up, which he did, she looks at me with a big smile, and says see? he can do it. I said, yes, he can, the glass is empty. She looked at me and said nothing.

The therapist also said that he had a low-grade fever, and I have  heard Al complain the past two days of having a dry mouth, even though he is a huge drinker of water. I told the nurse who came this afternoon what the therapist had said, so she listened to his lungs and took his temperature. Now the lungs are clear, and the temperature is only 97. I see nothing wrong, she says. I mentioned that all morning Al’s voice was raspy and I could hear something rattling when he talked. She advised me to keep an eye on it, but she thought nothing was wrong.

My coffee pot went on the blink this morning right after making me my coffee, so I have to consider this an emergency, and with the therapist suggesting to buy Al a two-handled cup, I said we will get it today, because I must have my coffee.

We go to Wal-Mart and I buy us some lunch at the inside restaurant, Sub-Way, then after done, we go to the grocery aisles and get him some orange juice for breakfast, since he was out. Next, we went to the small appliance department  and I saw the coffee maker that I had at home, but guess what, the only coffee makers they had on the shelves were the expensive ones. I glanced around to see if there were any employees around, and as usual, there was not.

I asked Al if he would like to go over to the toy aisle and pick out a cheap car, that cheap is what he could afford this week after buying an expensive car last week. I asked him if he remembered how to get to that department, and he nodded yes to both questions.

He left on his scooter and I grabbed the first employee walking by, and I guess I was not very nice, because I asked her why is it every time I come here to get something much-needed, all the shelves are empty except the expensive ones. I reminded her that with the economy being so bad, they needed to keep the shelves stocked with the common priced ones. She didn’t deserve it, and why I acted that way, I am not sure, but she did go back to the back and look but came out empty-handed.

I did not want to tackle getting Al in and out of the car more than I had to, so I picked out one of the brands I like that was common priced, but it had no timer on it, so now I have to start it in the morning instead of waking up to heavenly coffee. Oh well, it won’t kill me, but it was a nice luxury for me.

I then went over to where Al was and he had a pile of cheap cars in his cart. I think my eyes bugged out, there were so many. I explained that we could not have more than one today, and he said he didn’t know that, that he had heard me say cheap, which each one was $3.59, not bad price, but over $.99, but when you add up several, it cost a lot! He started crying saying he had messed up again,and that his brain is so confused. I told him to pick out the coolest one of all, and he could have that one, but needed to put the rest back, which he did, with no fuss. He kept telling me he just didn’t understand, and I believe him, other wise he would have been throwing a fit to keep all of them, but he did not do that.

So tonight during supper, we were both eating and he tells me the bucket is missing. I ask him what bucket and he says the grey bucket. My mind is going to the movie I just watched yesterday, the Bucket List, and he says it is missing. I question him some more, and then I got it. He was saying to me that the bucket for the commode was missing.

All of a sudden I put my fork down, as I was no longer hungry, because my mind was picturing the mess I was in for when I went in to his bedroom. I went in there and saw no urine on the floor and sighed a sigh of relief. I lifted up the lid, and the lid was on the bucket, but the lid was full of pee. He had peed on the lid thinking it was the bucket.

When he finished his last bite, I told him the bucket was there, and he argued no it was not, and so I took him in and showed him the urine on the lid, and he said that I had placed the bucket back for him,and asked who’s pee was that. I told him that the lid was on top of the bucket and he had accidentally peed on the lid instead of taking the lid off peeing in the bucket. He cried again, and asked me what is wrong with his brain, that it is all messed up. I told him not to worry, that it was an accident, and I would clean it up. He walked out of his room crying and asking himself why he can’t remember things and why he screws up all the time, and then he looked back at me with big tears, and said, I really try Terry, I really do try.

I started crying immediately. My heart was breaking. I felt his pain and embarrassment. On one hand you have therapists and nurses saying he is improving, but in other areas they are deteriorating. Dementia is moving in faster and faster, he could pick up an empty, plastic cone with the therapist, but at supper he could not pick up a plastic half-filled glass. He cries wanting to know why he is messed up, and he didn’t realize prices at the stores.

I don’t know how to feel anymore, I feel confused. I tell myself to get hard-hearted, but I struggle with that. Nurses and doctors say he is in the beginning stages of five, the final stage. The nurse tells me today, to expect things to move quicker now, and that tremors can almost disappear in the fifth stage. All I know is Al is sick, and his body is changing and so is his mind, and as bad as I want to believe that he is improving, I only see him getting worse, when you look at the whole picture.

33 thoughts on “She Says, He Cries, I Think

  1. Hey Terry<3<3<3 You sound so down and saddened right now. I wish I could reach across and give you a really tight hug right now 😦 You're both trying so hard, and you're both fighting against this so strongly each day. I can't begin to understand how rough or difficult things are for you right now, but please know that I'm here loving, praying for and thinking of you<3<3<3 Remember that while we are all in different places, and that although God might not be sitting right there infront of you, you're not alone in this. Consider the fact that you have followers/readers from around the globe, that means that somewhere in the world, at some time of the day, there is always someone praying that you and Al make it through each day.


    • i just get confused Kadeen. How can the medical professionals say he is improving, when in other areas he is downsizing. it is hard, but i know that the many prayers from everyone all over the world are what keeps him and i going. love and hugs to you my friend…………..


      • Well, I can’t say what the medical professionals are looking for in terms of improvement, but there must be something to their words. Maybe they’re comparing him to the average PD patient, or maybe they’re separating the dementia, mental abilities and physical effects from each other rather than combining them. I wish I knew the answers……The only things I’m always certain about are prayer and God<3<3<3


      • you have a point here, Kadeen. with so many departments coming and going here, i bet they are looking only at that department and not the whole picture. this makes sense to me and helps me to understand what they mean when they say he is improving………….thank u my friend


    • i just want some stability in the rat race called Parkinson’s. It keeps us jumping so much, I don’t know where we are at times………………….I will try not to feel bad, but it is hard when i see his tears, i feel bad for him, usually not for me. thank you Diane, so much for your comment…………….you help me to feel stronger and to not give up


  2. Love and hugs, dear Terry. I’m so sorry for the heartache and the tears. The wonderful people that come in . . .they don’t know Al like you do. I am praying that they don’t use words like “he’s improving”. Maybe when they say that . .. you can just think, he did good for this time, at this task, thank You Lord. God bless you big and know we are praying.


    • thank you Debbie, yes, i think I would like to look at words in the way you have described them. i tend to want to get my hopes up that this thing can be cured or at least fixed………….


  3. It’s been a hard day for you today Terry. I wish I could say tomorrow will be better. It probably will be actually! But it will be hard again. There are no easy answers here and I don’t know why the professionals have not been helpful to you. I do know that you unfailingly show incredible courage even when you are down and feeling defeated. You do yourself great credit and you are much loved for it. Blessings. K.


    • thank u so much for this kind comment. i am better today, but Al is dragging. lol. I had to have labs early this morning, and so had to wake him up pretty early. He was so tired he didn’t even want to go thru a drive thru and pick up breakfast. he came back home and went straight to bed for a half an hour then the shower girl showed. she is now gone and he is snoozing on the couch……sometimes he seems so innocent………like a child…………know what i mean????


  4. OK… I wish I was there to have a real conversation with you…NO, Al is not going to get better like you and all of us who love you…would want…BUt, the therapy is more help than you realize…It gives Al hope…
    I used to say at school about one of our Special Ed kids…”He’s so smart!”… and the teacher who had a dry sense of humor…would say, “Compared to who?”…I would give him “my look”…
    knowing he was kidding…He loved those kids beyond belief…I would answer with…”Compared to what I saw yesterday…” …I have always loved the comedy…”What About Bob?”…Look it up sometime…
    The main thing that stuck with me is…You just have to look at the baby steps…Baby steps meaning… a slow process… but, in the end…and looking hard…you will see improvement…I watched my own son
    struggling with his bi-polar disorder…Going through the same conflicts you are going through but, in a different way…Oh, the improvements that have been acheived… Yes, sometimes small…
    but, so wonderful for him and me…Just love him Terry now…as much as can…I hear your words that he expresses…He loves you so…and doesn’t want to be a burden… A smart guy!…Love to you!…
    hope you can decipher my rambling thoughts…mkg


  5. Whenever I read one of your postings like this one i am constantly reminded of how much Al NEEDS you and what his life would be like without you. You are a constant blessing to me a I read about your love for Al that is clearly seen in your care and effort that you give Him. In the midst of this whole “mess”, you are still trying to think about Al and the things he enjoys (coke stuff, cars, etc. May the Lord continue to bless you as you sacrifce for the sake fo your beloved brother.


  6. This is so heartbreaking to take part .. of – feel so deeply for you both.
    You understand everything, Terry … you wrote it yourself “All I know is Al is sick, and his body is changing and so is his mind, and as bad as I want to believe that he is improving, I only see him getting worse, when you look at the whole picture” – and you can’t stress yourself over this – things will not going to be any better .. only worst – so take it as it comes and you can’t change anything … accept it and don’t worry – remember the days when Al was Al. This have to have it’s own flow. Easy for me to say .. that sits here – I know.


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