Dealing with Dementia

I very much enjoy talking to older people about their lives, but the problems with their health fill me with anxiety and despair. I didn’t know this was going to happen when I decided to study medicine, but it has. Let me explain why.

My experience

I was 17 and in year 12 when my mother died. Although she was only 61 she was what some might call an “old 61” with severe cardiovascular disease. She had a first “event” (a stroke) at 51 when I was 10. At about the same time as my mother’s cardiovascular disease began to rear its ugly head, my father, who was 5 years older than my mother, developed the first signs of dementia. I spent my high school years in a household that consisted of a mother whose physical health was poor, a father whose dementia and depression were untreated and progressing and a paternal grandmother who revelled in her illnesses and hated me. It was not a happy place.

My mother’s death was unexpected (for me anyway) and it propelled me towards a career in medicine. I had the idea that maybe I would be able to do a better job than the people who had failed to keep her alive. With the power of maturity and hindsight I think they were probably doing as good a job as possible given that the 1970s was a totally different time in terms of health care.

After my mother died, there was no one able to look after my father and my grandmother, so they both went to nursing homes. I finished high school, boarding with a very kind but elderly neighbour.

What I didn’t realise until my clinical years was that every elderly person that I saw was going to bring back the difficult emotional experiences of my childhood.

Avoidance is the key!

I found a way to solve the problem. I forged a path where I seldom had to see old people at all. I worked in places where the patient population consisted overwhelmingly of young adults – a CBD practice, a University health service. It kept me safe and also led to my interest in mental health.

I know, I could have done lots of other things, including had some therapy to improve my own mental health, but avoidance was the path I chose, and I didn’t think it was doing me any harm.

Recently I’ve found the fly in the ointment. The problem is I’m getting old and my friends and family are coming along with me for the ride. How can I now avoid the issues of aging when it’s what almost everybody I know is experiencing?

There’s more….

Just recently my oldest sister was diagnosed with dementia. The close-up view I have of her deterioration is confronting and disturbing. I was too young to have a sense of what it was like for my father, but I can see all too clearly the distress my sister is in. That long-held desire to help in a hopeless situation is catching up with me. I can no longer keep it at arm’s length or avoid it entirely.

I am very lucky. My sister has a wonderful daughter who has taken her mother’s care on her shoulders – a considerable load as she has also been looking after her dementing father for the last few years. Because my sister has such a daughter, I do not have to fully participate in the situation but I am still seriously rattled by it.

Trying another approach

I’m so disturbed by this problem that won’t go away, that I’ve decided the only way forward is to make it my business to find out more about dementia. I’ve just done a GP learning module about it. I’m going to watch some of the movies and read some of the books I know are out there. I agree, it’s probably a slightly more mature response!

My search has so far turned up a range of great resources - from information and handouts for sufferers and their carers, to the RACGP’s “Silver Book”, a guide to dementia care in general practice.  What you need is out there, you just have to have the courage to look it in the eye.

Resources:

Dementia Australia https://www.dementia.org.au/?gclid=Cj0KCQjwqoibBhDUARIsAH2OpWiOspnPTB1_8Kng2zJQV5oMqIK_CFihldv-dn_PSf54XhnakwgtsHoaAgDBEALw_wcB

Alzheimer’s Association https://www.alz.org/help-support/resources

RACGP Silver Book https://www.racgp.org.au/silverbook

Clinical Practice Guidelines and Principles of Care for People with Dementia  https://cdpc.sydney.edu.au/wp-content/uploads/2019/06/CDPC-Dementia-Guidelines_WEB.pdf

Managing psychological and behavioural symptoms in dementia (NPS Medicinewise) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4993708/