Today is a bad day at the” zoo.” There have been numerous phone calls from medical centres, hospital, pacemaker makers, surgeons rooms and our family member who lives with dementia. He’s due to have surgery next week and in the background there’s a flurry of activity to organise paper work, carers, meet medical protocols and make sure things run smoothly. At last count there have been 16 people involved in making this one hour day procedure happen on Monday. Administrative staff, kind and well trained with warm honey voices call me to request some change in the already agreed process. My family member, let’s call him John, calls me again to check if I called him because his phone may not be working. It is. I haven’t. I’m terse and grumpy. Not my best self.
After the last phone call I wonder if its too early to have a glass of something strong but I settle for tea and affirmations. Carer resentment I think it’s called and then I feel guilty and remind myself that I’m the lucky one. I know what day it is. I can look after myself. My feisty, controlling spirit can fly free because I don’t have Dementia. If it’s all too much I can hop in the car and chill out with friends or indulge in retail therapy.
John just knows his well worn path to the local shops where he buys coffee and cake and the locals look out for him. At the age of 82 and with a number of medical problems, that’s the boundary of his world. A man, who in his younger years traveled the hippie trail through India and spent time in Africa and South America now explores his backyard.
We have a team of people who support John to stay in his home where he has lived for 40 years. A nurse and carers, friends and family all have roles to play in making his life as comfortable and organised as possible. There are days he is agitated, angry and hard to be with. He verbally lashes out at those around him and nothing in the world can be made right for him. There are other days when he is sweet and kind and we can enjoy sharing memories and ice-cream, which he gobbles down with the inevitable commentary….“Its boarding school that did it.. I never had enough ice-cream! ” He has a repertoire of about 5 stories now which he retells each time I see him. John rummages through the tatters of memory to make a connection but this process leaves him exhausted and in eventual retreat. He closes down.
After 2 years of wandering in the territory of aged care, navigating agencies and protocols, asserting access to information and elbowing my way into conversations with medical staff concerning John’s care, I have learned so much. I’ve learned to ask lots of questions and hone my negotiation and assertiveness skills. I’ve learned to nudge boundaries if I think John’s needs will be better served. I’ve learned to smile and ask why at the same time. I don’t know how people with different language skills or less swagger can navigate the confusing, rigid and uncoordinated systems that operate in aged care and health.
At times my role in John’s care is overwhelming and depressing. I know that no matter how many hours I spend, how many meals I cook or how many agencies I navigate he is not going to get better. It’s a holding pattern at best until the next downward shift.
I know there are many people who are full-time carers. Grandparents who are parenting, not grandparenting. Partners who are suddenly faced with a health episode of a loved one and enter the world of full time carer. There is a whole world out there of dedicated, loving people who are full time carers and whose lives have changed overnight.
I am so lucky. Yes, there are days of high jinks with bureaucracy, frustration and sadness but I am well. I’m surrounded by a loving family and caring professional people who work hard to give John quality of life. I have been given the gift of opportunity. I can be a better self. I have the privilege of spending time with John and making his day a good one as much as I can. I’m no Mother Theresa and there are days when he drives me nuts. But I’m in a unique position to learn compassion and patience (not my strong suit) and travel with a fellow human being through the jungle that is Dementia.
You are right It is our privilege.. we have stood up and taken responsibility and gone beyond because of love. We just can’t set and forget just because of Illness or age. We choose to be part of the carers team because we care.
All the best for Johns surgery.
Love your writing Nora! Keep going.
Thanks Evy……Your support is lovely. The carer journey is not easy. When John grabbed my hand at the hospital and said ” You know, I couldn’t do this without you…I just wouldn’t know where to start.. you’re my life saver.” That was all I needed to keep me going for years to come….
Thinking of you, and hope all goes well for’John’ next week. Watching Louis Theroux’s recent Dementia documentary helped me see the humorous side of this awful disease. Big hugs, you are doing a wonderful job x