I have personal experience with dementia. My Nanna died with the condition when I was in my mid twenty’s. In her more advanced stages she no longer recognized her children let alone her grandchildren. I visited her less and less in the nursing home as it was a painful experience. I believed there was no point as she was already “lost” and didn’t know me anyway. Perhaps making The Long Goodbye was a subconscious effort to understand what was going on for my Nanna in those latter years?
When I began researching the topic, I came across Christine Bryden’s (Boden) book “Who Will I Be When I Die?” I had only ever associated dementia with the elderly. My misconception was blown away when I discovered Christine was a high achieving 46 year old when diagnosed with Alzheimer’s disease. Her book took me right inside the disease and I was particularly intrigued by her exploration of identity; if our memories make us who we are then who do we become when we lose our memories?
I wanted to challenge the stereotype commonly associated with the condition so I set out to find an early onset participant. They also needed to be in the early stages as I wanted to capture that intriguing insight from within the disease. When I met Michael, I knew he was the perfect participant for my documentary. He was articulate, funny and completely free of self pity. The fact that he had four children still living at home and was a retired criminal barrister just made his story all the more tragic. He had already lost so much and had so much more to lose in the future.
I developed quite a close relationship with Michael. Even though he wouldn’t be able to recall anything we have discussed and shared in the making of this film, he has trusted me enough to share his story. He is the only character in the film with dementia who remembers me and I think that’s why our relationship has a different feel about it. Witnessing his deterioration and the impact on his family has been difficult and at times very painful. The second visit to the doctors where it was obvious he had deteriorated significantly was quite traumatic for us all. It is very rare to see Michael upset and he was totally devastated during that visit. The only positive that came out of it was that half an hour later he had forgotten about it all. Poor Jane was left with the lingering sadness.
One thing I have learnt from making this film is that it is possible to protect those with dementia by not reminding them when they have forgotten something. It’s surprising how often you tend to raise a subject by saying “do you remember….?” Of course this is the last thing you want to do as no, they probably won’t remember and you have just inadvertently reminded them of their deficit. It is also pointless to constantly correct someone who has dementia as once again this rubs it in their face. What is right and what is wrong gradually becomes a lower priority. I think it shows true love and compassion on the part of a carer, family or friend to subvert ones own ego, to let their loved one be right, to let them save face and to gently steer them away from painful insights.
Filming with the Myrle & Ken was an absolute delight. Ken is such a cheeky and lovable character and the banter between them continues whether the camera is running or not. Over the three years of filming I developed a very close relationship with Myrle. I think she really enjoyed the visits and found it cathartic. It was an opportunity for her to get some things off her chest without having to burden her family. It would have been easy for me to judge Myrle’s devotion and refusal of help as that of a martyr. However Myrle was raised at a different time when there was a greater emphasis on values and duty in a relationship. I learnt to accept that it would be very difficult for an 80 year old woman who is very strong and independent to suddenly change her behaviour, despite its obvious flaws. Myrle’s illness was the trigger. It was heart breaking to see her so beaten by the illness and so anxious about Ken’s welfare. For the first time in her life she seriously contemplated that she might pass away first. Although it took a fright to change her attitude, I do feel great admiration for Myrle. Very humbly she was able to let go of the reigns a little bit and accept some help. I think it was only her love for Ken that gave her the strength to take those first brave steps. I can only hope that when I am her age I have the capacity to show such love and devotion to my man!
Filming with Tom & Brenda was an intensely emotional journey. I was so moved by the tender care that Tom showed his wife and how devastated he was by their eventual separation. I had to carefully judge when I really needed to film certain moments in order to faithfully document the journey but at the same time be very careful to not over do it and become intrusive. It was a constant balancing act which required a lot of mixed emotions on my part. My natural inclination is to let people be and respect their privacy when they are experiencing such pain, however to withdraw at this point would have seriously undermined our shared objectives for the film. I wouldn’t have documented their journey honestly and to the best of my ability.
The decision to put a loved one in fulltime residential care could be the toughest decision that a person ever has to make in their life. Tom’s story powerfully conveys the guilt and anguish leading up to that decision. I am hopeful that those watching who are quick to judge others who make that same decision will feel greater empathy for carers. I am also hopeful that those who have or are about to make that decision and are experiencing similar guilt will feel some sort of validation and support.
I stopped visiting my Nanna in the nursing home as I believed she was already “lost” and didn’t know me anyway. Through the making of this film, I now think that my view was fairly selfish and misguided. I have seen how people living with dementia can be reached, that a connection can be made even if they don’t know who you are. Family and friends experience the pain of being forgotten and the tragedy of seeing their loved one become a shadow of their former self. However, I hope people will find some comfort when they witness the ongoing connection between Tom and Brenda. Despite the advanced nature of her dementia she was not “totally lost”. Love can be given to those living with dementia and in most cases they will be comforted by this. I wish I had have known this when my Nanna was deteriorating with the condition.