wings and things

Still Anthony

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.


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.


Can dementia be a blessing in disguise?

Lately, I have caught myself (guiltily) wondering about this question and its many off-shoots. Nevertheless, it is probably a rather controversial question to ask, so I apologize if it offends anybody but I wanted to ‘put it out there’ to see what other people think.

A few weeks ago I discussed the hesitant beginnings of this question with Anthony who now knows that dementia is creeping up on him. He knows because it has been mentioned by various professionals in front of him; by me, carefully; and by Ming frankly (“Dad, you’re losing the plot!”)

PDD is an acronym for Parkinson’s Disease Dementia but this condition is not as well known as Alzheimer’s Disease despite the fact that its symptoms are so similar – ie. loss of short-term memory, loss of ability to remember how to do normal activities (walking, speaking, ablutions, eating etc.) In the final stages of Parkinson’s Disease, which is where Anthony is in this strange continuum, the dementia usually begins to kick in.

So far, the dementia has been gentle, but unpredictable and, as I said to Anthony yesterday, “Mostly you are lucid but sometimes you are gaga”, and he agreed. It reminded me of all those years ago when I was looking after his mother and her extreme distress at becoming forgetful and confused. I have never forgotten her tears that day because she was not the crying type; she was stoic. Anthony is like that too, but I have noticed that, when lucid, he is sad and, when gaga, he isn’t sad.

A few weeks ago, I wanted to find a miracle cure for the encroaching dementia but now (apart from the fact that there is no miracle cure), I wonder if the hastening of dementia would be a blessing in disguise.

I don’t know what to wish for anymore.

Any thoughts?