wings and things


on October 25, 2012

King: Julie hasn’t been as attentive to us as usual. Have you noticed?
Prince: Yes I have noticed!

Frosta: Yes, I’ve noticed it too, guys, and I’m a bit hurt too, but from a female perspective, I understand that she is simply going through a blue wren phase.
Prince: What’s a blue wren?
King: Those stupid little birds that flit around our heads all day.

Parkinson’s disease, in its final stages, can lead to confusion, depression, hallucinations, delusions, moodiness, dementia, and paranoia. Ironically, some Parkinson’s medications can also have these kinds of side effects which is why it is such a difficult disease to treat. Until recently, it was Anthony’s physical debilitation that was the primary concern. Yes, hallucinations were a big problem but that was eventually improved by some changes in medication.

So the nursing lodge decision was made on the basis of his physical disabilities – immobility and incontinence (and other factors). But lately, there have been some signs of psychological problems. His confusion in the evenings has become a constant and his depression too, and  last week I blogged about his uncharacteristic anger with me. Today, when Ming and I visited, he was different again. He had a strange, suspicious expression in eyes (eyes which are so difficult to read now) and he began a mumbled diatribe about the nurse who had showered him this morning, saying that she had kicked his foot and hurt him. He even used a few insulting expletives so I left Ming with him out in the sunshine and went in to talk to the head nurse.

This is only the second time I have raised an issue. The first was last week when I told her that his anger with me was a new thing, and today, without going into exactly what he had said, I mentioned that he seemed to have something against the nurse who showered him this morning. I admitted that I didn’t know if he was delusional or if she had actually been a bit ungentle with him and emphasized that his complaining was, like this new anger, uncharacteristic. She said she would look into things tactfully and we both agreed that it may be a new symptom of his PDD. I said I would see his doctor asap to see if his meds. could be altered (for the millionth time) to address this new out-of-character behaviour.

She said that he was occasionally a bit rude and nasty to staff, especially if their ethnicity didn’t match his and I was a bit shocked and reassured her that this, too, was completely out of character. She patted me on the back and Ming and I came home a little stunned by this rather rapid change in Anthony’s personality. The other thing that has been happening lately is that he has begun accusing me of having a boyfriend (which, of course, I don’t!) and previously he was never the jealous type.

I hope we can do something about this because it is very worrying. I mean if he is nasty to the staff they are hardly going to love him are they. So this is a real dilemma in terms of his care.

36 responses to “Paranoia

  1. Oh goodness, this must be so hard. Have faith in the nursing home staff though, they know it’s the illness and will have seen it many times before.

  2. tersiaburger says:

    What can I say dear Julie? Your photos and captions are exquisite and your journey a very hard one? Paranoia and personality changes is a part of dementia as you know. It is sad that Ming has to witness this at his tender age but then it is part of his life that will mold him into the man he will become. Seeing Vic suffer and her steady mental and physical decline has allowed her boys to develop into beautiful compassionate young men. The staff know the symptoms and are trained to handle difficult patients and situations. They do not take it personally. Vic’s nurse and I discussed it last night as a matter of fact. Gee I am rambling. Wish we could actually sit and have a cup of tea and just chat!

  3. the staff should be professional about the whole thing, and understand that it is the disease talking and not the man — seriously, I know they are people with feelings, but they should also be aware that they are caregivers and not take things personally
    so sorry you are going through this – it must be tough to see the man you used to know disappearing

  4. bulldogsturf says:

    Julie after my Dad’s stroke and I call it forced entry into a full time care center he came up with all sorts of horrifying stories… we learnt to deal with them as delusional as we personally knew all the staff and realised this was just part of the degeneration of the brain…
    He was requesting me to deal with the German tanks hiding in the bushes outside (he was in the tank corp in the second world war) and all such strange things…
    He loved my wife and she got all the glory on a daily basis and my poor Mom got it in the neck nearly every day…
    It is so difficult to know what is going on in the mind of others when half the time we actually don’t know whats going on in our own…
    You have to keep a good look out for mistreatment as it might not be a figure of his imagination, but it is not easy and not one of us can give you advise as to how to handle your situation…
    but one thing you can count on is we are here for you, to listen and sympathize and where we can, to tell you of how we feel for you… Hugs Julie it’s not easy and none of us know exactly what you are going through… but telling us in words may just help you to express the frustrations so don’t stop…

    • jmgoyder says:

      That must have been very disturbing with your dad. Ants hasn’t been saying anything too bizarre yet but I am now getting prepared for it as his mind falters. I really appreciate your generosity of spirit so much – thank you Bulldog!

  5. bluebee says:

    I imagine that the staff would be trained to deal with the personality changes that come with neurological diseases, Julie.

  6. The staff are professionals I’m sure they know the realities of Parkinson’s and act accordingly. What a rough journey you have Julie. (hugs)

  7. magzmama says:

    I really hope the meds can be modified and that it will help, but I have to echo all of the sentiments here – the people at the lodge are professionals, and sound like compassionate people who understand this horrible disease. Stay strong. Take care of YOU too.

  8. camsgranny says:

    With my experience with Momma, she “thinks” things have happened, while in reality they have not. The brain is faltering under PD, it is sometimes hard for them to realize “reality”. I echo the sentiments mentioned above, and I know about the med “switch” as well. Unfortunately for us, if we increase one, the hallucinations become greater. I hope y’all can find a good balance. Hugs

  9. Judith Post says:

    I hope this new turn is temporary. My mom can change personality when she watches a TV show or a movie because she thinks what she watched is real. The worst is when she gets a urinary tract infection, though–she turns nasty and suspicious. There are so many small triggers, it’s a full time job to figure them out.

  10. pixilated2 says:

    There are good days, better days, and not so good days, but it never seems to get easier does it? I understand your fear and frustration. Keep visiting often, keep an eye on Anthony’s physical condition and continue to let the staff know you are keeping an eye out for his well being. It does make a difference in the care he receives when they know you are active in his life. What happened may well have been accidental, but extra care should be made to prevent another incident. We had a few issues with Bob’s parents that needed sorting out when they were in care. The staff knew that between Bob, His sister, and me, that they were under the magnifying glass. We weren’t rude, but we were open and vocal about our concerns. I do hope that new meds will help to ease his fears.
    XO, Lynda

  11. artsifrtsy says:

    I know that my Gran developed these odd stories of mistreatment – and sometimes I just knew they were hallucinations – she told me that the nurses were too busy to help her because they were playing poker for stale bread in the hallway. She told me they took her away on a train car. All very fantastic stories and all a figment of her imagination – still she was very angry about the incidents. One time I took Grandpa to see her and she saw glaring at me for the whole visit. As we got up to leave she asked Grandpa why he had “that woman” with him, it became clear she didn’t know who I was that day and thought I was Grandpa’s new love interest – it was sad and unnerving, but I have heard from so many others that it is quite common. You are doing the best you can for him, even if he cannot understand that.

  12. You have to be so strong to deal with this and you know it’s only going to get worse. But knowing that you can expect this kind of thing helps at least a little bit. You’ll just have to imagine that you’re an elephant or a rhino and not let those incidents go through your thick skin. Just let it wash over you. My sister-in-law says, “Throw it over your shoulder and forget about it.” Then try to go on with your life and not let this stuff fester. It won’t do any good to let it upset you more and more.

  13. hugr5 says:

    Oh man, I am so sorry that you ALL are going through this! / hugr5

  14. terry1954 says:

    it is not a good thing if he is being nasty to the staff, but my bigger concern is how will he start treating you. accusing you of a boyfriend? could he end up hurting your with hateful words? i don’t want you to have to go through that at all my friend. you are already dealing with enough as it is

  15. viveka says:

    Julie, my best friends mum became very evil and difficult in the end of her life – plus she got such fault mouth. It was a nightmare at times for the staff on the caring home, but they still loved her for her great moments. They understood and I’m sure the staff on the caring lodge love Ant too, even if he has his moment … they know and if they don’t understand they shouldn’t be working there. So don’t worry, Julie
    Love your bird’s conversation.

  16. This is such a difficult side of the dementia. May you keep strong and brave to manage your pain over this. Thinking of you today 🙂

  17. sbcallahan says:

    ahh the racism card has been played. the nurses have dealt with this before so don’t worry. as a former nurse i can tell you this is pretty standard,as are the paranoia and accusations. it is sad but he is now becoming the after anthony. this is so difficult and if you weren’t so loving there are things that could make it easier for you. knowing the kind of woman you are i know that you are going to keep going and so i hope you are going to find a way to seperate this anthony ,and whatever comes now, from the anthony of your love stories. as you know this disease is not a kind and gentile disease.

    i think of you every day and send my affection and wishes for a peaceful weekend!

    • jmgoyder says:

      What really got to me about your comment is the phrase ‘the after Anthony’ – yes this is a perfect description. Thanks so much for your thoughts and they are reciprocated!

  18. niasunset says:

    I hope and wish everything to be fine. Love, nia

  19. eof737 says:

    So, so sorry and the staff ought to know that this is out of character for your hubby, and more a symptom of his condition… My heart goes out to all of you… Julie stay strong

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