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.]
Going with the flow ….
Most Dementia care advocates/experts, and organisations, seem to agree now that ‘going with the flow’ is a better, kinder way of responding to people with Dementia. For example, when Anthony asks me to find the chainsaw so he can cut wood for the fireplace, I say yes, of course; and when Anthony asked Ming yesterday to move the calves to a different paddock, Ming said yes, of course.
I was really proud of Ming yesterday because when he came home (we’d just missed each other at the nursing home), he said that Anthony mistook him for a nephew and Ming had to say, “It’s me, Dad – Ming, your son.” I guess that’s an example of not going with the flow but Ming did it gently and acknowledged to me that he and his cousin do look alike. I was proud of him for not being upset and for being so gentle in reminding Anthony who he was. I was also proud of him for agreeing to move the imagined calves that Ants often sees in the grassed area outside his window.
Going with the flow in terms of what Anthony says, or tries to say, is easy for me. I am getting better at mind-reading when he is stumped for words, when sentences are impossible. I know him so well, who he was, and who he is now with the Dementia, so I know how to reassure him that his mother and deceased siblings are fine, that the dairy is functioning, that there is plenty of money in the bank, that Ming is growing up fast (Ants often thinks Ming is still an infant).
But going with the flow for me, personally, has recently become extremely difficult and traumatic due to Anthony’s sudden deterioration a couple of weeks ago with the dysphagia and TIAs. My grief was acute because I thought he was about to die. Then, when he didn’t die, my emotions became all mangled and I became consumed with anxiety and uncertainty.
I spoke with my fantastic psychologist this morning about how frustrated and exhausted I was with not knowing when Anthony would die. Of course I already realise that, despite him being in the last stages of everything now, it could still be a long time. She suggested just focussing on each day as it comes, not having any expectations, and re-finding my own identity, the latter of which was something my mother also said to me the other day.
As someone about to facilitate carer support groups, I felt the need to figure some of this stuff out but that’s where the ‘going with the flow’ idea caught me as I fell. There is no figuring it all out; every experience of Dementia, of caring, of loving, of being terrified, is individual and very, very personal.
I have been feeling so weak and distraught lately – even disorientated – but the volunteering jobs have been like a gift! Going with the flow….
Rollercoaster 2
I will soon be facilitating a carer support group so I guess the last couple of weeks will help. The trauma of seeing Anthony unconscious, then the joy of seeing him okay again, over and over again, especially lately, has absolutely done my head in.
Today, we had a multitude of visitors and it was wonderful – especially when my great-nephew sat on Anthony’s knee! And yet yesterday, Ants was in bed, sleepy-headed and not particularly responsive to visitors.
It is hard to admit these things, but I would like to be honest about how I feel, in the hope that others will be able to relate and not feel guilty. It would not be possible for me to admit these feelings if I didn’t love Anthony so the following observations and questions are addressed to him despite the fact that I can’t speak to him about these things:
- Ants, we have never talked about your death or made funeral arrangements, so Ming and I have no idea what you want. We are seeing funeral directors next week with our various questions.
- You were like a dead person yesterday, but today you were back! I know you don’t know you are dying and I know you don’t even know you have dementia, but I also know that you know me/us.
- Every time, especially lately, that I think you are nearly dead, I get panicky and grief-stricken; then you come good again.
- Anthony, the other day, when I had my finger on your pulse, I did actually want you to die. I’m sorry, but you were unconscious anyway and I thought it would be easier.
- You are 80, Ants. I know you keep telling me you are 16, and asking where you mum is, and seeing baby Ming in every corner of your room, but then, all of a sudden, you are back in the here-and-now.
There must be a better way of caring for carers and I am very interested in helping in any way I can.
I want Anthony to live.
I want Anthony to die.
Rollercoaster
I guess this is a ‘this-and-that’ post….
The other evening, one of our nephews rang to see how I was, and how Anthony was, and I got a bit weepy, so not long after, his beautiful wife arrived with a bottle of wine and she let me cry into her shoulder. Once I had recovered, we drank some of the wine and talked about what a wonderful man Anthony was/is etc., then she left.
Five minutes later, there was a knock on the door; her car was bogged on the driveway, so I went out to help but could NOT stop laughing and laughing, so I wasn’t of much use! In the end, my nephew had to come over with ropes to pull the car out of the bog. We’ve had a lot of rain and this farm is on the flats so what looks like steady ground isn’t.
When I told Anthony about this the next day, his placid face upturned into a smile – it was wonderful!
I quite like these rather bizarre incidents because humour is now crushing the sorrow out of the day-by-day experience of watching Anthony lose his bearings. Today, we had visits from other wonderful relatives but Ants was mostly sleeping and in bed, so I reassured the carers that him staying in bed was fine and probably much more comfortable at this stage. Today I also finalised the end-of-life documents, but it feels so surreal.
Ming has been writing an album of songs dedicated to Anthony but, this morning, he headed up to Perth for a two-day acting workshop. At 10am, he rang me to say he’d arrived safely and wanted to write a song for me – just me – called ‘Selfless’ and he told me that he thought I was the most selfless person he’d ever known. And then he said something about respecting me and it absolutely made my day! It is impossible to describe how much this kid/teen/man has helped out over the years; he is a legend.
Until now, I don’t think I have properly faced the death thing but, now that I have, I am more ready, I think!
Rollercoaster….
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.
jmgoyder 