Yes, I am still working through past blog entries in order to formulate a book, but I keep getting distracted by the present.
I don’t think even the scientists know whether the hallucinations people with Dementia experience, especially those with Parkinson’s Disease Dementia, are part of the actual condition, or a side-effect of the medications.
Tractors pulling Anthony’s trees down; long-lost friends and family (some deceased) visiting; a multitude of strange children making mischief; a room full of calves and dogs; a pirate ship; the strange ‘teacher’; the terrifying kidnappers; the wondering where I am ….
….even when I am right there.
After the terrible fright of a few months ago, when I thought Anthony was going to die, he has resurrected and, in his own words, is “better now.”
This month marks five years that Anthony has been in the high care section of the nursing home. He has outlived all of his prognoses (advanced prostate cancer, advanced PD) by years; he has somehow survived liver disease and kidney cancer. The Dementia component has been there all along but has only become noticeable over the last couple of years.
Dementia is, of course, very confusing for the person who has it but it is also confusing for the person caring for the person with Dementia. Moments – even hours – of lucidity can sometimes be punctuated with such bizarre stories that the carers are at a loss as to how to respond.
Even me, who loves him so much. Even me.
Recently, I have become so tired: of pretending I have to go to work (as way of leaving); of missing him; of this never-ending grief; of wondering whether he is okay when I’m not there. I have had to let go of the latter for my own sanity but I still worry about whether he is too hot or too cold (these thermostatic problems were the bane of my life when Ants was still at home.)
And what about Ming – our now 23-year-old son? Anthony sometimes mistakes him for a nephew and doesn’t recognise him as his only child. I don’t know how this feels as Anthony always recognises me, even if he is confused.
Ming is often ‘seen’ by Anthony in the corner of his nursing home room – as a toddler – and this particular hallucination gives Anthony immense delight. So I go along with it; what else can I do?
Perhaps the trick with Dementia-induced hallucinations is to go with the flow unless the particular hallucination is troubling.
Me: Nobody is cutting your trees down, Ants!
Anthony: Yes, he is – just look!
Me: I think it might just be your imagination and the Parkinson’s Disease?
Anthony: You always say that.
Me: Do you want me to get Ming to check it out?
Anthony: He’s too little, Jules.
Me: No, he’s a man now, Ants, and he can fix everything!
It is perhaps the ongoing, repetitive loop of the same conversation that can sometimes exhaust the carer. On the other hand, it’s familiar territory and I love to insert a bit of humour into the same old conversation and can sometimes make Anthony smile by saying “Are you totally insane?”
Yeah, bleak humour can sometimes be useful when it comes to Dementia-induced hallucinations.
And I am, and will always be, grateful to Anthony for teaching me so much about this often misunderstood and complicated condition.
jmgoyder 
this is all so hard and you are right about all of it. hugs to all of you. write when you can about the past and do what you need to do in the present
And I am so grateful to you for teaching me so much about compassion, grace and Love.
❤
My MIL who had lost her sight, began to have hallucinations and would see galleons, a red indian chief in full head dress, little blonde haired children and the town hall clock. She didn’t mind these but she hated the red velvet curtains, When it first happened she thought her sight had returned but we knew it hadn’t. Then we realised that every time these occurred it was the start of a urinary tract infection. The body is a strange thing.
It is always interesting to read what you write, you use the words at your disposal to clarify the situation you are in with such skill.
It never gets easier, does it? I can understand your fatigue over the worry. I send you thoughts of strength.
I’m of the mind of going with the hallucinations. What would happen if you told Ants that since Ming was too little, you would get them to stop cutting down trees? Would that alleviate his distress? You certainly know mountains more than I about the subject, I’m just wondering.
Take care of yourself and stay strong! 🙂
Yeah going with the flow would be hard when the hallucination has made him distressed as you do not want him to be distressed and it must be so hard for Ming when his father doesn’t know who he is
A very hard lesson to have to learn.
You have the patience of a saint, Julie, but there’s no denying that you or Dementia Carers must get fatigued with the repetitive conversations.
I really feel for Ming now that his Father no longer recognises him. It must be very challenging for him to visit Anthony. All I can say is that this whole Father/Son relationship (or lack thereof) will make him a much wiser, more compassionate person throughout his life.
I imagine Ming has several older male family members to mentor him?
I can relate to the ’emotional exhaustion’… I remember it so well… Diane
When My husband was ill and dying he would hallucinate constantly. As he had neither parkensons or dementia we can safely say it was the drugs. In the end he had a walker and wheelchair but began shuffling and parking the walker in front of the chair he wanted to sit in and then try and climb over it to get into the seat as many dementia people do..He would imagine buglers, people waiting outside the door to ‘get him’. Shadowy shapes running through walls, a little girl who would sit in the lounge with him all night long playing with her dolls by the heater. She was quite good company. He realised the shapes running through walls were his imagination and the little girl took no notice, so obviously he didn’t realise she was a figment of his imagination as well . Another time he thought ladies from work had come to visit and forgotten to take their baby home when they left and was stumbling about the house frantically trying to find it in case boxes I already had packed about the place in preparation of our eventual move to OZ might tumble down on it as it crawled about the house. The worse was when he would take 2 hrs to change his colostomy bag [ wouldn’t let me help] and thought he had stomas all over his stomach and only one bag and of coarse could not come out in public like that.He was so glad when some of his family finally came to visit him. Unfortunately that was his imagination too.i would correct him but did play along with Tony as Tony’s imaginings were less serious [ No threat to life or safety] All in a days work lol but similarities between his behaviour and dementia were very interesting.
OMG you are such a legend, Deb. Thx so much for this wisdom xxx
When Mum was still on her own after Dad died, she hallucinated about people that came into her duplex. Not being in the close area, I felt I had to call my sisters to check things out because you don’t want to not believe her if it is real. It was hard for all concerned, but her fight is over now.
You are so brave. And so patient with your loved one. He is very lucky to have you.