One of the things I’ve been most grateful for over the last few years of Anthony’s dementia is that his personality hasn’t changed. He is still easy-going, gregarious, humorous, accepting and gentle. Like Alice in Lisa Genova’s book, Still Alice, Anthony is still Anthony.
Or he was.
The other day, about an hour before Ming and I were due to give a talk to a group of Dementia Practice students, he rang me from the nursing home to say that Anthony had broken a staff member’s hand.
What?
Apparently Anthony has been exhibiting out-of-character behaviours recently, partly due to a urinary tract infection. He is antagonistic and physically resists being put to bed etc. It is painful for me to imagine such scenes as Anthony doesn’t behave like this when I am there so this has come as a shock to Ming and to me. I also feel terrible that someone was injured.
But, picture this:
You have no idea where you are. It’s 4pm but you don’t know that. Two women in uniform approach you with a big piece of machinery [hoist].They are trying to explain something to you but you don’t understand – something about a bed. As they begin to undress you, you try to say no, that you are cold, but you can’t remember the words so you lash out. You are so terrified that the adrenaline kicks in and you fight. If you could flee, you would, but your legs won’t work. You wonder where Julie is and why she’s not there. Who are these women, with their gentle voices and strong arms and why are they putting you into the machine?
Anthony is scared.
In one of the support groups I attend, a woman recently described how her husband’s gentle personality switched overnight; he became angry, jealous and threatening. She said, “I didn’t recognise him. He was a different person.” At the time I thought how lucky we were that this hadn’t happened to Anthony.
Ming and I admitted to the Dementia Practice students that the possibility of Anthony’s personality changing was a brand new challenge. Perhaps I should visit later in the day than earlier so that I can calm Anthony down. I know I thought of this idea ages ago, for different reasons. I’ll ask the staff what they think when I go in today.
I have been preparing myself for the possibility that one day Anthony might not recognise who I am.
It never occurred to me until now that one day I might not recognise who he is.
jmgoyder 
A like to show you I was here…I don’t always like what you’re all going through of course!
I hope I didn’t sound whiny – just the opposite, in fact and Anthony is well cared for.
Not at all Jules. I know from your posts that he’s well cared for, and how much you love him xx
Very difficult time Julie… just one more change in this dreaded disease….. Diane
Every time I think I have a positive spin on dementia something different happens and I am back to the beginning.
I know and each step of the way, it seems you have a different way of handling each change… Diane ❤
My heart cries for you. I am so very glad that you have found such a helpful outlet in talking to other people and writing about Parkinson’s. You never cease to amaze.
I have a ‘ditto’ response to your situation!
Julie, even though I have “seen” this before because of my work, but I have not “felt” this like I did until today when I read this. I don’t want to sound like I know anything, but I do suspect that you will always see your Anthony. ❤
I hope so and thank you so much for this perspective!
And your attitude and understanding from all sides will make the caregivers jobs so much easier. Can be hard dealing with patients with difficulties but when their families don’t understand and don’t want to accept the changes that come about it makes it very difficult. Can’t do the right thing with your patient|resident if the family insist you deal with the person they were rather than the person they are now.Kind of miss Tony and his sense of humour and his stories.
Thanks so much for this perspective, Debbie. I am learning as I go and your comments always help because they kind of slice to the heart of the matter.
I can think of nothing to say except heaps of sympathy for the awful period you are all going through. Poor frightened Anthony and poor you and Ming having to stand by helplessly.
Thanks, Susan and I am sorry for having sounded so negative. Ming and I are getting pretty good at figuring out how to deal with the status quo (which of course won’t keep still!) We still have humour and hope x
❤
Oh, Julie — that’s so hard, and yet you’re dealing with it all so amazingly. You are always an inspiration to me, your willingness to adjust to meet Anthony’s ever-changing needs helps me also be willing to adjust. I’m thinking of all of you every day!
When I worked in a retirement home as a young woman I encountered patients like this – they were so hard to deal with – because the best way was to wait until they calmed down and that might take hours and the nursing staff does not have hours. Hopefully this will not happen too often – but with all your heads put together I bet you come up with a solution – or series of movements that enable you all to get him to bed without him getting a fright. c
I understand the change in personality oh so well, my nan was the most loving caring person she never swore but because of the Alzheimer’s there were times when she used the “F” word it was a shock to hear her use it.
A frightening situation for you all. I hope that all the sympathy and love that your readers send to you can help a little bit.
Change is ever present no matter who we are or what we are experiencing. I like to think that recognising the physical shape is akin to recognising the mind shape (no matter how it appears).
I found Acceptance is one of the hardest phases to go through when experiencing Chronic illness and Change. But is IS all in the Mind. Say to yourself every morning….”This is Anthony the man I love. The essence of him is still the same. He is (who he is). The Love is everlasting and will never die, not matter how it presents itself. Love is love and I am the luckiest person in the world as many people never get so experience such a pure state of this condition.”
Emotions and reality wax and wane through the seasons of your life, but it doesn’t change your Love (if its pure and true).
You will always ‘recognise’ Anthony to the end of your days.
I can only imagine your heart jumping into your throat when you heard this news. I’m so sorry. My thoughts and prayers are with you.
You are amazing! Hugs