I spend a lot of time with the infirm and the unintelligible yet still grapple with the conflict of psychological -v- physical deterioration in my old age. Given the choice, which would I prefer? Whatever happens, loss of the ability to care for oneself marks the beginnings of forced dependence. Those simple words: “Sorry Mr B, according to our assessment you are no longer able to care for yourself”. The world turns and nothing will ever be the same again.
There are some things I could have lived quite happily without, one is an A4 coloured photo of my dads bum, scarily close to all the surrounding bits with an ever so colourful pressure sore, about five months in the making before detection. Enter the cavalry.
There is a cast of tens involved in this one. They all have a form to fill out, privacy things to discuss, another assessment, a care plan and extra things to buy.
Not only does a very damaged bum cause medical intervention, it opens up a whole new world. There are now special foods, special dressings, special bed coverings and cushions. The highlight is four times a week in-home nursing care and dad’s absolute joy of standing naked in the shower with a vast array of nursing staff for the minimal cost of $10 a day.
By virtue of dads sore bum, I’ve also gained involuntary entry into the aged care health system. I get phone calls from some very well meaning people. They want to give me advice about respite care, dietary needs, shower stools, carpet placement, bowel habits and overall general welfare. I can be perceived as a perpetrator or martyr all in one day, depending on which agency I’m talking to. Bureacracy is fascinating.
Old age is where things are ‘done to’ one, particularly if you don’t have the capacity to stand firm and verbalise needs. It’s not as simple as a form, it’s more about understanding that the person you are caring for will agree with anything because he is deaf and his first response is always “yes”. It’s like watching someone being woken up for the purpose of taking them to the toilet. It’s nearly mealtime so it has to be done. It’s all for your own good!
The Off-sider, generally known as Dad, sits with Dorey, holding her hand and sometimes singing. Since Dorey fell, was hospitalised and then moved into care seven months ago the song has always been “How much do I love you, I’ll tell you know lies, How deep is the ocean, How high is the sky, How far would I travel to be there where you are…..” and so it goes. He feels no embarrassment and frankly, by now, I’m over it too.
Each day he struggles to get dressed, to put on his braces, bend over to put on his socks and a special effort to tie up his laces. His breath is fast and shallow, his skin is pale, blue at the toes, puffy hands. Every step is a challenge as he leans into the wheelie-walker to make the daily trip to see the love of his life.
The Off-sider is cleaning out his stuff. He has cut a bit out of the local paper to let me know where he wants the furniture to go. He is sorting through the old photographs, throwing away bits that no longer have meaning, tearing up diaries and for all intents and purposes getting ready to die. He tells Dorey he has been talking to my deceased brother in his dreams and that Dave is asking how she is. He is reading the stories in the Watchtower that two dedicated women have left for him every month for the past 11 years. He has no religion, no hope of eternity or idea of any form of hereafter. The Off-sider has been living with kidney failure for about 15 years. Every report says it is just amazing he has survived this long. His focus to survive has been Dorey.
To the exclusion of all else this has been an amazing love.
Years ago when work was the focus and for ten other reasons I had no life, I worked in a men’s prison. Committing a crime was possibly the quickest way of getting in because going through the multi level gates was arduous and occasionally damn demeaning. The alarms controlled your thoughts 24 hours a day from waking (don’t wear an underwire bra) to the very essence of people you spent your time with socially. The front gate was sometimes where officers ended up for their sins and where others attempted and sometimes succeeded in exerting what was left of their career power. Few jokes were shared in the room of x-rays, beeps, sign-ins, drug rota testing, buttons, doors opening and slammed shut. 250 metres, press another button and wait…….
Institutionalisation and its impact on behaviour has always fascinated me. What makes a person become so identifiably moulded into an environment that at its most basic level has taken control of attitudes, social construct and personal identification? I had already worked in the “system” for a few years before being drafted into the new prison for six months. Almost all the trainees were new. They had given up their past employment to become prison officers. A lot never made it through the 85% pass mark required in the twice weekly exams but those that did sprouted justice, humaneness, safety, care, equality and all the other theoretical requirements that would get them to the finish line. They made friendships and alliances which would become important to their survival, quite literally.
Into the mix of these trained officers came a uniform and 600 males prisoners. It was no longer about exerting ones testosterone among peers. The point where theory and philosophy became the tool of aspiring senior management and humaness is defined by the rest on a day to day basis. The sheep from the goats. Them and us. Unions. Inappropriate friendships. Collusion, anger, threats and a hundred other most basic human reactions in an inhuman world.
For the prisoner it’s about survival, counting days, months or years, choosing the right contacts, jumping through hoops (or not) and making a decision about whether to return.
For the officers it’s…………………………….what?
The cycle of the so called “memory unit” is now easily identified and each cycle has it’s own liabilities and assets depending on whether you are a visitor or a carer. None of the cycles are long lasting, thankfully, so when The Book Keeper attempts to make his escape via the kitchen window encouraged by The Builder and counselled “not to be so bloody stupid” by The Car Salesman. visitors can chuckle, walk away and write blogs but carers are left to deal with freyed emotions and counting down the hours until bed time. Tomorrow they will all be back to their pacing reminiscent of scenes, minus the blood, of a well known television series and the next all geared up to challenge each other in a rafferty’s rules bowls game.
Dorey, who has now been resident for six months, is progressing in her alzheimers symptoms. She is losing the ability for animation. As she loses her identity more and more her joy is disappearing as she becomes critically hurtful in her comments, unable to empathise and much less responsive to hugs. In this unit there are no two-way conversations of any substance. It is becoming less so between Dorey, the Off-sider and I. Personally I stopped sharing anything with both Dorey and the Off-sider years ago due to their deafness and unwillingness to venture down the hearing aide road. My attempts to be heard were seen as anger so I stopped initiating conversations. The Off-siders racist, sexist and belittling comments are made at a volume matching his own deafness and while shouting is secondary to being lynched it all makes for an episode of Grumpy Old Men. He has a tendency to quote headlines in the pretence he is knowledgeable about current affairs. He asks questions like “how many dead bodies do you think are on Mount Everest? Go on guess, bet you don’t know”. Carers stand with baited breath for my response and success comes in the ability to do a quick Google search, unnoticed by his blindness on his right side.
So I’ll take the Off-sider home after a couple of hours, assisted by the carers who take Dorey down to her room to “do secret women’s business”. We will do it all again tomorrow. Such is life, someone once said.
On the way home from my last day of work, about four years ago now, I called in to collect Daisy. She was sitting on her foster mothers knee, visibly shaking and clearly wondering what the fuss was all about. I had never really imagined myself with a foxy cross, already 7 years old, timid and with a few foibles that “were best dealt with by an older woman who will be at home most of the time”. So there it began. We settled into a routine of walking, eating and sleeping that you could set your clock by. She became my mate, the keeper of my darkest moments and greatest joys. She became the untidiness in the lounge, the constant tap-tap of claws on the lino, the centre of conversations with strangers who became friends, the warmth on the bed and the tail wag that greeted me on coming home.
It seems October so far has been a month of endings. Friends losing friends; a nursing home resident, who despite not being able to speak could sing the most tuneful song from beginning to end; a friend given a “best before” date. My lesson in all of this is that despite the sadness what is most important is the time we spend with those we love while they are with us. The statement is trite, I know, but for me I need to keep being reminded because I’m not always the best friend, the best carer or even the best person. It takes beginnings and endings to put into greater perspective the importance of the now.
Rest well my Daisy.
Most of the things I do along the technological line occur by accident. I’m the bell curves extreme to the left of the graph and hiding in the corner sort of gal when it comes to nerd potential. My nerdism (just invested a new word according to the little red squiggly line) lies in people, institutionalisation and all the weird behaviours that result. Aged care I have discovered is the end of the line example of all the systems established to protect and “help”. Sometimes the roles get confused and even those working within them have difficulties justifying their actions. God help those of use who sit on the sidelines and watch the confusion.
The person I aspired to be is not the person I became. I’ve almost given up struggling with the guilt of not loving/caring/giving/sacrificing/having time/being selfish/not skilled and a million other labels that drift into my everyday self talk. I say “almost” but not fully because deep inside me there is the dutiful daughter who is still solidly locked into the “should” of her generation and the expectations of earlier generations. I have no reason to abandon the daily ritual because I have no other activities planned or demands on my time important enough to stand in the way – I’ve not had time to develop them. I aspired to be strong, independent and all the other good words our feminist gurus told us were out there for us. My strength and independence these days sits on the back burner – waiting.
Caring has become about money, investments, profits, cutting corners, covering their backsides and covering up the smell of urine with polish and floral sprays. Caring is about looking good, meeting the yearly assessment criteria, filling in the ever expanding mountain of paperwork or dealing with new computerised records while I receive a call to say my mother has just been involved in an altercation with another resident “but she’s o.k. I just had to let you know”.
I feel so much better now.
Stress is just a state of being, whether identified or whether it so subtly sneaks into every portion of your being and realigns your muscles, thoughts and sleep patterns into a new norm without even your slightest acknowledgement. It grows into the trivial annoyances, the frustrated tear, periods of self doubt, self medication, occasional to more frequent down days. Eventually it becomes anger, avoidance, bargaining, escapism, depression, hopelessness and guilt.
About mid stage through Dorey’s alzheimers descent I found Dementia caregivers support group and Carers UK. Real people on the same road, sharing their devotion, joys, pain, grief and dedication to fellow travellers. Answering questions, offering tips and available every hour of every day, no holidays, time off or closure for public holidays because that’s what caring is all about. Isn’t it? What has started with the helping hand and ended up with every hour devoted to a failing loved one has taken over a sense of self.
I’m eternally grateful to the specialists, scientists, universities and mice who are giving their time to finding an ease or a cure to the many forms of dementia; I’m grateful to the service providers, the stream of associated professionals who have dedicated their career to the care of our loved ones but more than anything I’m in awe of the ones who are there every day, who wipe up the messes, clear the confusion and hug when it hurts, not just for their loved ones but for each other.