People with dementia need to create a new image of who they are and who they are becoming, and how they do this depends very much on their personality, life story, general health, spirituality, and social environment. This can impact significantly on how others treat them as life is about belonging, and when you no longer belong in one club or organisation (or friendship), then you have to find a new one. For example, people who own Holden cars don’t belong to the Jaguar club. People with dementia have to choose their attitude about how relationships change, and, like Viktor Frankl, look for meaning in their lives through the attitude taken towards the disabilities and changes brought on by dementia.

Determination is about getting back into the driving seat of life. People with dementia can relate to what Nelson Mandela said in his inaugural speech: As we let our own light shine, we unconsciously give other people permission to do the same. As we are liberated from our own fear, our presence automatically liberates others! To live with the fear of ceasing to be takes enormous courage. The precious string of memories, that is our life, is breaking, and being lost. But by finding new lives created in the struggle with dementia, there can be hope for a future, to seek a new paradigm of dementia survival with dignity walking with others on that journey from diagnosis to death.

Relationships with others change as the symptoms of dementia appear. Coming out about a diagnosis often means many friends and family retreat from their friendship and support, not from mal intent, but because of the myths and lack of awareness about dementia, and their own fears. In the face of dementia, people just don’t know what to do (or say), which is why they ‘disappear’; not because they are bad people or don’t love you. Dementia changes intimate relationships and friendships, as the symptoms get in the way of the normal exchanges between husband and wife, or mother and child, or child and parent, and so on.

For many adult children, it may seem as if they have to take on the role of parenting their parent. It will be more helpful if a child assists alongside their parent with dementia, rather than as a parent taking control of things. Whilst it may be necessary to take over a number of tasks, or help with many things your parent has done all of their lives, taking on the persona of a parent is unhelpful. It is also important to slow down and remember the changes to your loved one are part of the disease, not simply them becoming difficult or cunning or deceitful or resentful. They are grieving for their old selves too, just as you may be grieving for the loving caring parents they once were to you. That person is still in there, but the symptoms of dementia, and more importantly, your reactions to the symptoms of dementia, is making it harder for you to find.

In a wonderful article A Care-givers Resolution: No push-no push written by Pamela R. Kelley and posted n the Alzheimer’s Reading Room, two quotes got my attention, as below. The whole article is well worth a read if you are caring for someone you love with dementia.

“For most of my adult life, I’ve been conditioned to multi-task, to think ahead, to embrace complexity and use it to my advantage. But none of that really works  to our mutual advantage as I provide care to my mother as Alzheimer’s exacts its costs. This was the year that I learned to quiet my overactive mind and concentrate on being fully present in the time I’m honored to spend with my mother.”

“Here’s the trick of it: if I remind myself what a generous, kind-hearted woman my mother has been throughout our lives together, I cannot resist infusing my smile with deep affection. This has led me to the habit of composing my face more deliberately when I look upon my mom. No empty smiles. If the eyes aren’t in it, it’s not a smile that works. Such a small thing, but it makes a difference to my mom”

I live with the diagnosis of dementia, and the symptoms are constantly changing, just like the winds and currents when you are on a boat at sea. I have little or no control about them increasing or appearing as that is part of the disease of dementia, even though I can manage how I work with them at least for now, and do work very hard on creating new pathways in my brain. The literature tells me one day this will change and I will have NO CONTROL, which is extremely daunting. My husband and close family and friends who do not have the diagnosis of or symptoms of dementia, CAN CONTROL how they react and respond to the ever changing Kate. Thankfully, they do.