Me: Ants, is it okay if I write your life story?
Anthony: No.
Me: Why?
Anthony: Because I don’t exist.
[This is an exact rendition of our conversation yesterday.]
Day by day
Today, Anthony ate his vitamised food well, was able to speak a bit, and smiled at my mother, who has recently returned from a wedding in Melbourne. It was while she was away that he had the TIA (mini-stroke) that really freaked me out and catapulted me into making funeral arrangements – mainly because he’d had another of these two days prior.
Even before the nursing home, Ants had had these mini-strokes and twice I called the ambulance and he was hospitalised. Both of these experiences were dreadful because he became so disorientated and anxious but at the time I didn’t know what a TIA was.
Today I spoke to one of the many lovely nurses at the nursing home to check with her if I’d signed the ‘not for resuscitation’ form. That was a yes. But I also wanted to check that I had signed off on the end-of-life form, so we are going to discuss/check this tomorrow because I don’t want Anthony hospitalised, or given a feeding tube, or any interventions that might prolong suffering.
Anthony doesn’t appear to be suffering but his feeling intensely cold during the day, and hot during the night (and I remember this from when he was still home), may actually be physical pain? I don’t know because he rarely complains. And even if he wanted to say he is thirsty – and he is suddenly thirsty constantly – his ability to speak is too diminished to express anything coherent to the carers.
He was always a larger-than-life person – loud, boisterous, the life of the party, and Ming (Menzies Goyder) is such a clone of Anthony. I love this!
And now, this evening, as I reflect on today, I realise that Anthony is also a larger-than-death person. Yes, he will probably die in the next few months or weeks but he will live on in so many hearts because he is so loved, by so many – not just Ming and me.
Planning a funeral
Anthony isn’t dead yet, and we have never discussed things like burial versus cremation, so I guess those decisions will be up to me, and Ming.
Today, I fed him his vitamised lunch, but he wasn’t particularly interested in the food; he was, as usual (as in the last week or so), very thirsty, so the drinks were a success. Conversation was close to nil and then he went to sleep while I watched television blankly.
I soon realised that he must have had one of those TIAs (mini-strokes) because he was unwakeable. But, as I’d already signed the forms indicating that Anthony was not a candidate for hospitalisation, resuscitation, a feeding tube, or any intervention, I didn’t alert the staff. In all honesty, having seen him diminish so rapidly over recent days, I rather hoped he would die with my warm thumb on his cold wrist.
All afternoon, I kept checking his pulse, hoping for two opposite things! I wanted him to die, for his sake; I wanted him to live, for my sake, and for Ming’s.
Death is definitely on its way for Anthony. Strangely, I didn’t see it coming but now I do. Accepting that has helped me, tonight, to make funeral arrangement decisions. If I make those decisions now, and pre-pay for his funeral, we will at least be able to grieve without so much red tape.
Last week, Ants and I would have been able to joke about funeral caskets; last week, Ming and I would have been able to discuss the future with Anthony in it; this week the whole story has changed.
Dysphagia and dying
Over the last few days, Anthony has been unable to swallow food in the usual way and has been spitting it out. I knew that one day this might happen; I knew that dysphagia (difficulty in swallowing) was a symptom of advanced Parkinson’s disease but I didn’t know it could happen so suddenly.
How can it be that last week he could eat a whole block of chocolate and this week he is spitting it out? Anthony loves food! I thought/hoped that it was just about him forgetting how to eat but, since seeing the speech pathologist today, we now know that dysphagia has arrived. From now on, his food will have to be semi-vitamised; otherwise he will choke or aspirate food/drinks.
So I guess we have now entered yet another new phase. No more tasty treats of the usual kind. It’s the food thing that makes me so sad but, as usual, Ants has accepted that this is the best idea.
Anthony has been so sleepy over the last few days that I keep feeling his pulse to see if he is still alive! I am in a constant state of high-alert in case he dies outside my watch; terrified but also prepared for his death.
At the same time, I am also prepared for a prolonged period of his suffering that I will have to witness. Anthony has already lost his ability to speak coherently, or above a whisper, and I hate that I have to speak on his behalf, but what else can I do?
Our chocolate days are over.
Nothing/everything has changed
I feel a sense of trepidation, re-entering the blog world after what seems a very long time to me, but is actually only a month. It has been wonderful to be free of the compulsion to both write and read but it’s also very difficult to avoid the guilt; after all, blogging is a reciprocal activity.
Some of my blog friends are also Facebook friends so, to the latter, I apologise for any future repetition but I have been trying to write 500-word column-type articles about Dementia. The reason for this is that I’ve begun volunteering for various organisations that work hard to ensure the ongoing improvement of Dementia care in Western Australia.
The fact that these organisations have welcomed my input so warmly has motivated me to write, network, and speak much more vociferously, about Dementia care, and the opportunities are opening up! This is very exciting for me as I have been a fairly silent, but passionate, advocate for many years. There is a strange, yet wonderful, serendipity in the fact that I was completing my PhD about Alzheimer’s Disease and storytelling during my newlywed years. I had no idea then, of course, that Anthony would one day succumb to PDD (Parkinson’s Disease Dementia).
One of the most delightful things that has happened over this last month is that Ming, our 22-year-old son, also wants to share our story from his perspective. And I don’t think our story would have the same oomph without his input. Ming has, many times, saved me from despair, and vice versa; Anthony and I have the most incredible son with a capacity for empathy that beats the hell out of mine!
Anyway, this post is a rather clumsy re-launch of my blog. I am not going to try to catch up with others’ blogs for the time being, but will certainly keep in touch one way or another. I really just want to focus on Dementia for the time being.
To my son, on Mothers’ Day
Tomorrow I will pretend to hold your miniature, wrinkled toes inside my swollen, postnatal fingers in the whiplash of a memory of pain and joy in equal amounts: your birth.
You, like many other babies, wanted to stay safely within the parameters of life and death/inside and outside, but you eventually emerged. After too many hours, you were inducted out of your cubbyhole and splashed into the too-bright-light of a bassinet.
I have never loved anyone as much as you, my wonderful, winged son. Yes, we argue and disagree; yes, we agree and philosophise; yes we occasionally look for walls to punch, shoulders to cry into: yes.
Nothing can ever change the gift of you to us – to Anthony, to me, to the extended family. Thanks for being this gift, for being exactly who you are. We are so proud that you are our son, Ming!
Tomorrow I will pretend to hold your miniature, wrinkled toes inside my swollen, postnatal fingers in the whiplash of a memory of pain and joy in equal amounts: your life.
jmgoyder 