Well I was wrong about Anthony not remembering last night’s incident. I just spoke to him on the phone earlier this morning and he said ‘they’ are doing terrible things to him and that last night he decided to fight back. “I wanted you to come in and see they are testing me.”
I tried to explain that the staff were just trying to put him to bed, but he wouldn’t accept that and so I said Ming and I would be in this afternoon. He said okay in a tired, defeated voice.
Since then I’ve been looking at various articles about Parkinson’s disease (PD) and Parkinson’s disease dementia (PDD) that discuss paranoia and psychosis in the latter stages of the disease. The fact that Anthony remembers last night, and still maintains that he is somehow under attack, indicates that paranoia has well and truly landed on our doorstep.
In the literature about PD that I’ve read over the years, it is stated by many that symptoms like hallucinations and paranoia are not only symptoms of the disease but may also be side-effects of the medications. What a dilemma! Ants has had hallucinations for years and lately I have noticed them getting worse (not in a disturbing way – it’s usually just dogs in the room) but in terms of frequency.
The increase in hallucinations exacerbates the paranoia because if Anthony thinks a tablecloth is his dessert, or that a dog is sitting on top of his television, or that Ming is sitting in an empty chair, or that a spoon is a lizard or that the polka-dots on my shirt are flies, then it stands to reason that he might also see a nurse as a torturer. Especially if it is late in the evening and he is already tired and confused.
It probably seems harsh that I yelled at Anthony on the phone last night but I have found this to be quite effective in the past when gentle words don’t work. Cruel to be kind I guess and it kind of shocks him into a tentative acceptance of what is going on. Last night he didn’t believe me that the nurses were nurses until I yelled at him. Obviously, if I lived closer than a half hour drive I would have gone into the nursing home, and maybe I should have gone in anyway, but the nurses reassured me on the phone that Anthony had calmed down a bit, so I let them handle the situation and I hoped for the best.
In the past, it has helped Anthony a lot when I have explained the link between PD and hallucinations so this afternoon, when Ming and I see him, I am also going to tell him about how paranoia is also part of his condition. I think if he knows this it will help him cope better with the night time ritual of being put to bed by the nurses.
Time will tell.
The photo is from two years ago with ‘Doc’ (now deceased) on Anthony’s lap, and ‘Jack’ the Irish terrier we got Anthony as a surprise birthday present when he still lived here at home.
jmgoyder 
This is so sad to read, Julie. I’m hearing similar stories from my sister, about my mom in South Africa. It sounds as though her condition has gone downhill since I last saw her in August. Lovely pic of Anthony and the dogs.
Oh, Julie, that’s so difficult. It was hard enough on me when my grandfather slipped into a paranoid kind of hallucinatory state, with confusion and anger–and frequently he didn’t recognize any of us, not my grandmother or mother, and definitely not me. We felt so helpless. I can’t imagine how terrified I’d feel if it was my husband going through that.
Can I encourage you not to torment yourself with second thoughts and wondering whether you did the right thing? Just trust that you are doing the best you can do in the moment, and then move on to the next thing. It’s such a drain of energy and confidence to wonder “should I have done this or that?” when you need all the energy and confidence you can muster to deal with all the new developments as they arise. Be as kind to yourself as you are to Anthony and Ming; you’re only human.
I couldn’t have said it any better…what Tracy said. HUGS to you Julie!
This has got to be one of the toughest aspects of Parkinson’s…. my brother-in-law had it and while I didn’t see the worst of it… I know how hard it was for my sister… He only related to her towards and at the end… and she willed herself to stay well until he passed because of that… she wasn’t well herself….. I’ll pray Julie….. Diane
The ultimate Rock and Hardplace. Without the drugs? With the drugs? It sucks either way. I’m sorry Jules, there is just no easy way is there? Hugs my friend, lots and lots of hugs…xo
Oh I hope this doesn’t get worse for you and Ants, but be prepared my dearest friend. Ants could forget who you are and Ming too. It is a terrible disease at this stage. Big hugs. Don’t feel guilty because you didn’t go in today. It is almost impossible to live life and live for him too. I was just letting you know in prior post that a routine not followed can easily set him off.
Such a heartbreaking situation and it must be so hard to deal with this new paranoia on top of everything else. I don’t think you’re terrible or harsh to yell at him. I used to have to yell at Daniel once in awhile to snap him out of these freak-outs he used to have. Sometimes it takes being a little harsh to get through to someone and it ultimately calmed Anthony down so it ended up being helpful.
Got to agree with Tracy Lee, Julie. (((Hugs)))
Julie, so sorry to hear of this development. My heart bleeds for you. Keep strong.
Thanks, Brenda – much better day today and I really appreciate your comment. Jx
My father in law had an incident where he tried to get onto bed with a poor non English speaking women thinking she was his dead wife. So sad we were called in to the hospice and I will never forget the pain when he lived through her death afresh. So sad, but chin up you do a marvelous job. You are such a wonderful person and I enjoy your posts.
Thanks so much, Julie!
i’m so sorry julie. how the social workers and docs explained it to me was, ‘she will be sailing along just fine, and then will make a sudden drop, a sudden change for the worse in her condition. there is not straight line in all of this. ‘ makes it easier to understand logically but not easier to deal with personally. hugs )
I have begun to wish I could just rent a flat nearby – not sure what to do anymore but we had a better day today. Thanks for your support so much!
I, too, agree with Tracy Lee–your love for Anthony is clear. Be equally loving with yourself. This is a dreadful road to walk, any way you slice it.
But there must be a better road (in the context of this disease). Surely! I am trying to find this road in order to help other people who are in our dilemma, but I feel to gutted at the moment to put the effort in – alas
Perhaps, but it seems like this disease is so mutable that it’s tough (if not impossible) to say, “This is what you need to do.” Seems like each person’s journey (or rather each family’s) has it’s own twists and turns, which I guess makes sense, as we are all individuals. I can only imagine how exhausting it must be….. Keeping a good thought for you over the miles….
I can’t believe how beautiful you are to me – thank you so much!
What a torment. To think that the medicines that may be helping Anthony in one area, may be causing some of the issues with the paranoia. I know when you get there he will be comforted by your presence and Ming’s. That seems to be part of his saving grace. And yours.
Such a difficult and unpredictable disease and so hard to get the meds ‘right’ because every single person afflicted is different. Thank you for mentioning the words ‘saving grace’ because that got straight to my heart!
🙂 I’m glad.
Me too!
I say it again… sterkte…
Love it even more now but how do I pronunciate it?
ster-k-te
Stir Katy?
Ster kter
Sorry – I was being cheeky!
I found a lovely definition of this beautiful and meaningful word. I had never heard of it before here in the US (obviously). I know you sent if for Julie, but I may find it useful over the next few months. Thank you, Bulldog.
Basically I love this definition… to wish someone the strength to persevere whatever hardship they are experiencing
Brilliant!
You are one amazing person Jules. 🙂
The side effects from the drugs can be a troublesome problem. Hard to deal with for the patient and those around him. Your yelling was appropriate and a reality check for Anthony. Sometimes nothing else gets through. Hope it all calms down. It can. Sweet photo.
Such sad events, Julie. I am so sorry that he is having such a hard time, and sad for you too.
(((O)))
Julie, You are the bravest person I know. Don’t even try to deny it. And within your brave soul, you have so much love. Ants is truly one of the luckiest people I could ever hope to meet and know. To have your love, your strength, and even your patience. at his fingertips at any moment for as long as needed, what a gift. I hope with all my heart that your conversations will help Ants, that in the future Ants will be less prone to fret, worry and be paranoid. But dear, I think every bit of your strength will be called upon, today, tomorrow and clearly into the future. I am here like so many of your other friends to help and lend support to you in any way. Please take care, and know I care. — Bill
I have a friend whose mother developed a form of dementia and she too found that she had to act “cruel to be kind”. As in the last post when I commented ‘it is the disease’, so too is the method of having to deal with it. By that I mean you having to act that way is only in response to the disease, not your response to him as a person.
Reading this took me back to when my pop was in hospital and then the nursing home, he had many times when he would think he was back in a Jap pow camp and the nurses were trying to harm him in some way. It took a lot to calm him and was hard to get him to understand he was in hospital and safe. I hope you do not have too many nights like that.
Oh that sounds terrible – that your pop would re-live such dreadful experiences. Ants has never been in any sort of war but he does get those night terrors sometimes and I feel so helpless to help.