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.
I enjoy writing into oblivion. Imagine how many real therapy hours have been saved by this narcisstic activity of getting my mundane words fixed on a page. I love the challenge of introspection, that wormlike activity of the brain that starts with a thought, more analysis, no insight, just another worm. Playing with the fantasies that have no hope of realisation.
I used to have a sense of stuckness but now there are so many activities. I attempt to limit my time to activities because I’m still ‘on the clock’. Still watching for 11 a.m., that time to get a move on and head for another parental adventure down the yellow brick road. My activities are stunted; an hour catching up with the news, FB, getting tempted to read excepts from books that it takes every effort not to buy, particularly now I have memorised my credit card number. An hour reading; an hour or so in the garden, not too much because the knees are starting to grate and the back is not as strong as it was a while ago. The smell of the tea tree mulch fills the house. I should vacuum, but don’t. The little black and white shadow that has become so much a part of my waking and sleeping leaves her short, prickly hairs everywhere. Vacuuming is a pre-visitor thing to do these days.
It’s school holidays. I hate them. Annoying, noisy kids riding their bikes and skateboard up the street and drawing phallic symbols and “fuck” all over the road in four different colours of chalk. There are cars parked in every available spot and people dressed in black coming and going. Someone else has gone. Who? This small cul de sac with 13 houses, all known by sight, few by name and none in person.
It’s nearly 11.
Wally walked in. He visits the nursing home community most days. He’s tall, gawky in fact and reminicent of a man who has spent most of his life bending over to counteract his height. His hair is a greyish blonde, uncombed and in need of a wash. His clothes are misshapen, fresh from the washing line. He wears shorts in the most inappropriate weather and a pair of rubber thongs. He looks the same every day.
Today is special. It’s his wifes’ birthday. He holds a bunch of dark red roses which are well past their use by date. On the wrapper is a sticker: “reduced for quick sale”. Wally smiles in my direction, acknowledging my presence. We have spoken about her birthday and his plans. Wally proudly leads his wife by the hand to find a vase and emerges all smiles. They sit on the lounge where she attempts to unwrap a turkish delight he has bought for her. Sometimes he talks to her quietly but mostly few words are spoken. Today he just holds her hand while she dozes. After an hour or so he kisses her on top of the head and leaves through the door his wife has not seen the other side of for a year or more.
It’s only been a couple of weeks of volunteering in the nursing home and already a new understanding of aged people has occurred. When the gradual loss of self comes with Alzheimers, as a daughter it’s difficult to determine where the healthy, fully functioning person became just that little bit more eroded, a little more dependent, a little less individual. The greyness takes over and you don’t even notice except in the need to be closer, more available and then to a point where it’s impossible to move away and their life takes over your life and you both get lost.
I think back to my days in child protection when the ability to just live life was often shadowed by “a bad case”, my next court appearance, the report that had to be written and more tragically the perception that ‘out there’ were so many victims and equally so many perpetrators. The role becomes the reality and along with it the politics, the attitudes and a lessening ability to just be self. So it is with Alzheimers.
I’ve done the fire walk, a speeded up version of manual handling and this week I’m learning how to wash my hands. All valuable lessons! I’ve called bingo, hoy, refereed bowling conflicts, mistakenly bestowed a birthday on the undeserving and pushed numerous wheelchairs into solid objects. I’ve listened to big hearted performers sing war songs with voices that are probably best suited to the shower but appreciated nonetheless.
Initially a little nervous of “one on one” activities I quickly discovered this can prove to be my highlight of the day. The person and their story is almost always reflected in numerous photographs, cards, books, a mobile phone or the wedding photos pictured in a handmade quilt. The women who have the ability to be social and joke around are fun to be with but the one’s who are now relatively isolated by disability or pain almost without exception will talk about her family. She will tell me all about the son or daughter who visits every week, the one who “can’t make it as much because she is so busy” and the friends who still occasionally drop by to catch up. The lucky ones go out for coffee or lunch and the lonely ones sleep. Some will tell me how grateful they are to have a failing body instead of a failing mind but some will say they are still not sure.
Back in the locked ward where Dorey and the Off-sider talk about what day it is, why time goes so slowly and where the latest bag of licorice allsorts came from conversations don’t happen because the ability is gone. What does happen is the daily appearance of wives and husbands who come to feed their partner, sit and hold their hand for a while and talk to each other about how life used to be.
Today I start my newest adventure.
I’ve been visiting Dorey at the nursing home daily for the past five months, spending countless hours watching her sort through her purse looking for the last fake $50 note issued on “pension day” each Thursday. Occasionally I get the chance to take a couple out to recycle but that in itself is a major task. She hangs on to that bag like it was her life buoy on a sinking ship. The Off-sider always says she would be a first class bag tester in China. The visits are coloured by the antics of others, interaction with staff and always doing that quick survey in the morning to see if anyone is missing.
Today I broaden my horizons to the other “communities” as a volunteer. The paperwork submitted, the police check done and something resembling fire safety training completed. Already for the big interview, signing of documents, discussion about confidentiality, personal safety and ……. Well none of that happened. Today I jump the “us and them” fence and get to play numerous games of bingo, hoy (whatever that is), go for walks around the block and maybe get to have have coffee with that person I have been attempting to (unsuccessfully) chat up – see, there are benefits to being one of “us”.
Just earning Brownie points for my room with a view.
It’s probably impossible to fall off your seat while you are driving but if I could have I would have. The Off-sider, colloquially known as dad, in a tone much more serious than it deserved said “It’s hard for me to cope with all this because I’m much more emotional than your mother’. Firstly, this was one of the longest sentences he had spoken to me for well….. can’t remember … and secondly, it proves, without a shadow of doubt that perceptions are staggeringly deceptive at times. Thank god the uni’s were closed over the weekend making it impossible for me to take back my qualifications in welfare, sociology and counselling. Had I really just wasted my lifelong career under some magnificent illusion?
The Off-siders devotion has always unquestionably been for one woman. In their 61 years of marriage I never heard an argument. It was clear: he did as he was told and there were no problem! He has never been inside a grocery shop, bought clothes, presents, cards or anything really. He has no knowledge at all about banking, paying bills or using a phone. His grief when Dorey was admitted to the nursing home was very private, evidenced by the trail of tissues between the bedroom and the lounge room, despite his claim of having “a bit of a cold”. He is told off daily about his wrong coloured shoes with his trousers and wearing one t-shirt on top of the other. He laughs and says he will try harder tomorrow.
Someone once said the opposite of love is not hate but apathy. Efforts to consolidate the devoted husband and the apathetic father during my uni years led to my psychoanalysis lecturer labelling me “dissociative”. The Off-sider never shared in the emotion of births, deaths, achievement, birthdays or Christmas. I stopped struggling when I was no longer able to describe him as the “strong silent type” because I realised he had nothing to say.
So today when I prepare his meals, clean his house and wipe bodily fluids from the floors and walls and then worry he will fall while I’m away it really hurts when he says “I’m sorry, but I don’t like you very much”.
I have a personal distaste of aspiring blog writers who write with intensity for the first few weeks and then stop. The well of ideas seemingly dries up having verbalised all the frustrations which caused the blog to be created in the first place or something else happens to take the time the blog creation previously used. Pleading guilty to the above I have again become inspired.
Brief catch up: Dorey is now in a nursing home for the past four months having had a fall at home. Encouraged by hospital staff to consider nursing home care. a place for her became available in the same retirement complex she and the Off-sider have lived in for several years. After the initial placement and several attempts to escape she was moved to “the lock up ward” where she now shares her day with twelve or so others in varying states of mobility, communication ability and progress along the dementia road. Dorey is the only one who can relatively share a conversation with carers and still has the ability to give cheek when necessary, endearing her to her carers and other staff. She is also cheap labour in wiping down tables, folding serviettes and sweeping up.
The Off-sider has progressed through some stages of grief and is learning to manage his own time at home. He has found the kettle and understands the function of the microwave. Now 91 his safety is precarious but he adamantly rejects any other assistance and considers himself “too young” to go into care. I cringe when I see him shuffling around the place and daily have fears of what I will find when I arrive to make our daily visit to Dorey. Care for the Off-sider is much more practical. Our father/daughter relationship never progressed to the point of mutual adoration beyond adolescence so caring for him has raised some emotional challenges. He is currently drinking his way through the remaining bottles of alcohol and sorting out his paperwork. He is destroying his old diaries so I can’t read them, although why the devil I would want to know what dates his catheter was changed or the cleaner came is beyond me.
I am about to start volunteering at the nursing home on the “lifestyle” team. I figure I spend so much time there I might as well make it official. Never in my wildest imagination would I have seen myself doing anything like that but I have become passionate about providing more activities for those who still have the ability to throw a hoop, listen to music or even make music.