I realised recently that my level of anxiety about Anthony was very high when I was home and unable to visit (due to flu or whatever). I was anxious about everything from him being cold (because his internal thermostat is wonky) to his confusion about why I wasn’t there.
Today, as soon as I entered his room, my anxiety dissipated. He was in sleepy mode and couldn’t remember how to eat his lunch, but he was still there – my husband, my rock.
As Anthony slept, and I watched re-runs of “Neighours” (because I forgot to bring my box of paperwork in), I kept my hand on his shoulder or head, as I usually do, and, gradually, his easy breathing gave me a sense of peace.
Sometimes I cry and cry into Anthony’s shoulder and he gives me comfort just by whispering, “Jules, Jules?”
We are now into our fifth year of Anthony being in a home away from home so he has outlived predictions that he would die either of prostate cancer or Parkinson’s disease by now. His dementia is an offshoot of PD and getting worse but he still knows who I am, who Ming is, and who most family members are.
And, out of all of my friends, family, staff, guess who gives me the most comfort?
It was hilarious the other day when Anthony’s favourite nurse was teasing him about something and, all of a sudden, he surprised us both by growling at her! He launched himself out of his usual slump, met her nose with his, and said, very clearly “GRRR!” This resulted in all three of us laughing.
This kind of banter is, I think, what keeps Anthony on an even keel, emotionally. And the fact that this particular nurse is familiar to him is vitally important in terms of his health and well-being.
Oh how much I hope that this nurse doesn’t leave! If she even hints at that possibility, I may have to send her a “GRRR” of my own!
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.