Parkinson’s Disease or Medicatons?

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English: a shell of an unidentified gastropod

I am being told by nurses at the Nursing Home and the pharmacy that Al‘s new Exelon Patch is not causing him to act so strange. Al reminds me of patients I used to be in charge over. He is dazed. He sleeps more often than not. His lips don’t move so I can’t understand him anymore. He cries all the time and he is confused.

The other day he asked me if I was going to come back for lunch. I was already there and we had just finished lunch. He is now confused about what day it is or sometimes what time of day.

Today when I walked in there he was very depressed looking. Come to find out he thought I was coming earlier. I told him that I don’t come earlier anymore because he is always napping. He apologized, and I didn’t want him to. It isn’t his fault he is napping.

I can’t totally trust the professionals. My gut tells me that part of this is Parkinson’s but another part are these darn medications. I have explained myself repeatedly that I never want Al doped up to the point he is not enjoying his life at all.

This is a drug world we live in. Not just the illegal ones, but the legal ones too. The pimp or supplier is often our physicians. I am upset. To spend the time and the money on gas to only see someone who is a shell really makes my skin crawl.

He has a plate guard that goes over his plate. Today at lunch he could barely lift his spoon up and over the guard. Of course he started crying then but he also wanted to do it himself. He refused any help.

Friday the kitchen was asked by the Nursing Supervisor to puree his meats for the entire weekend. I had been in on Sunday and had brought him a cheeseburger. It took him a half an hour to eat half of it. He finally told me to quit bringing him sandwiches. He refuses most of his meats at the facility.

I have been a licensed CNA for over 23 years. My charting for food intake has been the same no matter where I worked. Here at this facility they mark 50% above or below. There is no monitoring for proteins, sugars, or carbs.

I keep telling them since last week Al is not eating his meats. It has to be a texture thing I think. He chews it alright but then can’t swallow. He gets down applesauce, puddings and ice-creams very well. When I went in today I asked the nurse, the supervisor nurse, and the dietary manager all about the new experiment of puree meats for Al over the weekend.

I got the same response from everyone. I don’t know, I wasn’t here over the weekend.

Did they even try it? I don’t know. What will happen to Al if he gets too little protein? The Dietary Manager said she could substitute his meats for cottage cheese and yogurt. I didn’t realize yogurt was a protein. I guess I learn something new every day.

So what is going on? Is this Parkinson’s Disease causing him problems with swallowing? Is it the medications making the swallowing lazy? Or is he just too out of it to put any effort into swallowing?

When I got home from seeing Al there was a message for me. The facility has made a new appointment for him at a new neurologist. I don’t mind, but if they put him on more medications that freak him out or make him an empty shell, I swear I am going to scream.

I don’t want my brother to live like this. If he isn’t going to have any life at all, then why bother with anything. I don’t want an empty shell for a brother.

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17 thoughts on “Parkinson’s Disease or Medicatons?”

  2. Hard to comment when I have no experience of PD, but almost sounds like he is being over-medicated (to keep him quiet).

    There are heaps of other protein (or food combining that makes a complete protein with the 8 essential amino acids) besides meat…. from eggs, milk, cheese, lentils & rice (together make a complete protein), humus (pureed chick peas & tahini), fish, baked beans on toast (i.e. kidney beans & wheat make a complete protein), pasta & beans & so on…..

    Some nuts have a fair bit of protein – they couldn’t be ground up.

    I’m surprised the kitchen staff don’t just make a big pot of chicken & vegetable soup with some fresh herbs (or other flavouring) and puree it for some of the nursing home residents. Quiches (without the fattening pastry base) or egg based slices are also good ways to get manageable soft foot with extra nutrition. How about egg custards (eggs & milk).

    With a fairly sedentary lifestyle, Al needs the most variety of lean protein, fruit & vegetables he can get. It would also help if he did some regular movement (like raising arms & legs) to get his lymphatic system moving. People who are still – housebound, bed bound or spend alot of time sitting in a chair, need to move somehow to get their eliminative organs working.

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    • Everything but two things you mentioned they do not serve. They basically eat the same foods week after week. It will be different when he comes home but for now he is stuck. Everything they make comes frozen out of a box. No flavor, nothing

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      • How sad, Terri.

        My Mother worked for some years as a cook in a small nursing home and she was the favourite person on staff. She went out of her way to cook the best & most variety for all the meals and snacks. Her cakes and scones for morning and afternoon tea were amazing.

        Being from the country, she was a great cook – well up into her eighties, then she was just too tired & too unstable without her walking frame.

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      • yes I wish that if I am in a nursing home I have a cook in the kitchen like your Mother. Al’s meals are pretty drab

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  3. I think he’s getting to much of that medicine. The dosage is to high and his body can’t handle it, that can cause relaps and that a patient gets worse. Trust your feelings Terry! Big Hugs for you and Al 🙂

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  4. Terry, I think also that his medicine can effect his quality of life – have friends that became so strange from combination of medicine and when his wife looked into it had the doctor two medicines that never should have been taken together – so when they stopped one of them … he became back to his old self.
    Terribly that doctors are not more vigilant about what medicines their patients are taking. So I think you are on the right track … in Sweden we have an online service with all medicines we can buy with all details about what they are for, side effects and what medicines they can’t be taking together with. Brilliant service and all free.
    We should never be afraid to question doctors – because they are doctors doesn’t mean that they are right .. they are humans too and we all do mistakes.
    For my mum they merely wrote out larger and larger doses of diuretic medicine – in the end she got problems with her kidneys that she has to live with and had to have the catheter all the time. Instead, to really see what the problem was. So you just question them.

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  5. sometimes we have to accept there is a trade off of sorts. i know for my heart to have it’s life prolonged i must take several medications and they have side effects. in order to keep my heart beat and blood pressure low i have to deal with already low energy being even lower.

    of course you don’t want to see your brother this way and my heart goes out to you. in a perfect world al wouldn’t have pd at all. but he does and i wonder if you had to choose between your brother as he is and your brother suffering as he was before which would you choose? as you know julie is going through some of the similar situations you are. her husband would be so upset about her not coming, even though she just left, that he would be inconsolable. it would seem this is what the majority of pd patients go through.

    i hope that you can get some relief from all this grief soon. you deserve happiness.

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  7. Terry, this is such a sad story. I worked as a case manager in a nursing home for a while, and sometimes getting the primary care doctor to sit down and do a complete review of meds would make a huge difference for the patient. I’m sorry you’re having to watch this. Praying for you both.

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    • thank you so much my friend. I was able to get one doctor to take him off the new Parkinson’s medication. It among the others that have been tried do not work with Al. He is in a bit better humor now and a little more awake

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