Relationships with others change after a diagnosis of dementia, especially with those very close to us. Some become stronger, but many disappear. Our children have mostly acted as if nothing is wrong, and manage any obvious changes as best they can. Our way of coping is to use humour; for example initially they used to introduce me to their friends as the Dementor in the family (from the Harry Potter books). In fact if you have seen those movies, the Dementors represent perfectly in a visual way how it feels inside, as if the dementia is sucking the life and goodness out of my soul. I have used that analogy almost since initial diagnosis, so when working on a presentation last year I decided to look up what the Harry Potter wikia site says of the Dementors; A Dementor is a Dark creature, considered one of the foulest to inhabit the world. Dementors feed off human happiness, and thus cause depression and despair to anyone near them. They can also consume, leaving their victims in a permanent vegetative, and thus are often referred to as “soul-sucking fiends” and are known to leave a person as an “empty-shell”. For me, this says it all. Writing and blogging is helping to restore that empty shell, as my written words are not only a record of my life and a window into my soul, they are a way of restoring and refilling the emptying shell. Relationships change after a diagnosis of dementia because of the stigma, and because most people have this notion that people with dementia are older, and more likely to be infirmed and/or in the later stages of the disease. More like the empty shell of the Dementor. The friends who do not keep in touch with us now, some who have candidly told us it is because of the dementia, must simply have their own demons to face and it is too hard to face ours with us. Who knows, but like the symptoms of dementia, we can’t change what others feel or how they behave. My relationship with my parents has changed, as has theirs with others; mum especially is distressed with the possibility of me entering aged care, and also because many of her friends refuse to engage in this part of her world. Having dementia in our life is a lonely and incredibly isolating experience, although blogging has certainly helped fill this void for me. Humour is our most productive mechanism for coping with the Dementors and other symptoms of dementia, along with all of the PERMA principles and other positive psychosocial strategies we use, including denial! Working on having happy and healthy relationships with family and friends is imperative for people living with the symptoms of dementia, almost as important as using humour, and helping others, to keep your own life in perspective!!
Ps about Dementors: there are people in the world who are negative or abusive, and where it can feel like they are sucking the goodness out of one’s soul too; with the symptoms of dementia in the picture, it becomes imperative to stay away from people like this. Remember, even if they are family or friends, if they suck out more than is good for your emotional or physical health, you might need to rethink the relationship… just a thought.