I’ve been going through my diary to see what I’ve been up to so far this week, and to see what is ahead of me. I am doing this more often now, to try and fill in the blanks, before the eraser gets to them. Sunday started at 10am with a meeting to discuss end of life issues for a very sick friend as there is no legal documentation in place. As you can imagine, it was a very difficult situation, trying to decide if someone would want their life prolonged when they can no longer make their own decisions, and especially difficult because his immediate family live overseas. We came to a consensus as we were able to place ourselves into his shoes, and a couple of us had previously been able to speak with him about it. A complex task and decision, but one as legal guardians we had to do. The rest of that day is blank in my diary, and unfortunately, blank in my mind.
Monday entailed a visit to the hospital to speak with doctors about this friend, on the issues we had discussed the day before and on how to formalise them, as well as if he was well enough to move into aged care, or if in fact his needs had changed to those of palliative care. Some 3-4 hours later, I had my answers. Then it was off to visit more nursing homes as I have also been trying to find a new one for my father in law due to his changed needs and he cannot stay where he currently lives. Then hydrotherapy rehab, a quick trip to my sons place to collect some chairs, drop them off, and home in time for dinner, or at least I think that is the case as after that the diary and my mind is blank again!
An early start yesterday to get the paperwork for two of the three admissions of friends into aged care facilities planned for later this week, which meant the day started with slight stress anyway as visiting the human cattle yards of dementia is never much fun. And it was three beds, in three private rooms, all in high care homes that I needed. We did it, I thought, the trifecta won! I am shocked to have momentarily thought this was a win, that the herding of my loved ones into nursing homes is a good thing, that the richest western country in the world has no other solution to caring for its sick or elderly. Such a tragedy, yet we constantly say that is the best we can do.
Then, I realised I had a new carer coming to collect me for a Christmas lunch. Talk about pre lunch nerves, not like a first date, but the sort that turns your stomach into liquid and makes your nerves jangle rather than jingle! Not that this carer wasn’t a nice person, but she was new. As it turned out, we had a lot to chat about as she is friends with my lovely Friday carer. But, it remains unsettling when I have to face yet one more stranger taking over another part of my life. And of course the uniform… nice, professional, neat, but it still makes me want to put a brown paper bag over my head, still makes me feel embarrassed and humiliated that I need such basic assistance. So off we go for Jazz and lunch, hardly a care in the world!
As we walked in all I could think was WTF, WTF, WTF, WTF… sitting in a room full of people with dementia and their carers, most looking older than me. I wanted to run away, off the pub to hide in a bar, perhaps even get drunk so I wouldn’t have to face up to it. Aarrgh… WTF am I doing here? Surely this is not for me? I tried desperately to pretend I was at a jazz lunch in Sydney with my friend Phil and Peter Paisley’s Washboards. I had walked into the room, and the only voice left in my head was saying run, run, run! It seems there is no bloody escaping this dementia. NO hiding from it any more. A slap in the face, at a daily rate! One person talked about her partner spending time in a respite house. She said he loved it, that he needed to socialise more, it’s good for him. His family has been taking him to events for over eight years, forcing him to socialise even as his dementia gets worse. I pondered this deeply, and wondered what he had been like as he had not spoken at all to me over lunch. I eventually asked, was he sociable and extroverted when he was young, did he always love going out? No she said, he has always been introverted and quiet, even when we first met. On this and on many other occasions I have seen people with dementia pushed into doing things because it will be good for them, with little regard to who they are and were as people. What has happened that our society needs to create events for the masses without regard to the individual?
On Tuesday afternoon, I then worked alongside a young schoolteacher friend on an Education Resource Kit to go with my 2012 Adelaide Fringe event, as I have registered it for the Youth Engagement Program. Our first task was to complete the Schools Media Release and, it seems my young friend Jess is as fussy as I am; we laughed… and fretted… over the spacing, fonts and alignment of this one page document! Then over a hundred emails to selected senior schools, filed away in the I’m not sure about this file of my event! In between I had a few stressed phone calls about another friend having trouble facing up to the human cattle yard for aged care and dementia her husband is going to live in as she can no longer care for him. This was followed by a yummy Thai dinner together, one I had promised my friend and husband, but alas, had forgotten to get anything in to cook for them!!
Today, I headed off at 8.30 am to volunteer for my favourite organisation The Big Issue (Helping those who help themselves) to assist with the preparation of the lunch for their Christmas Party in the south parklands. Two girlfriends (Thank you Deb and Karen) helped me slice and dice the salads and cut up the cake. The 5 kg of onions was left to me… no makeup left after the first 3 seconds, and no, not a TBI manager in sight! My car still stinks!! Then we headed over to the parklands where all The Big Issue SA staff, volunteers and vendors joined together to celebrate the successes of 2011. Some vendors were even discovered partying at some else’s event! Before the BBQ, The Big Issue street soccer tournament was from 1.30 to 2.30pm, put together today in a blow up soccer stadium. Then, a meeting at 4pm to fill out the paperwork for one friend’s transfer to a nursing home, and a few other decisions such as the purchase of a pressure area chair, picking up clothing and so on. I missed a Christmas event at Alzheimer’s Australia SA tonight for people with younger onset dementia and their families, but had no energy left for that at all. Right now, this week feels like a month and the contrast of emotions has been astonishing. It’s only Wednesday and OMG, I’m only half way through the week.