End of life in Dementia: The end of me?

I speak to patients and families every day who share some of the most intimate and difficult parts of their experience living with Dementia with me.

A son might tell me about his father who has historically been a “proud man” who is mortified having strangers wash and dress him and who would under no circumstances have a child of his attend to him when he has been incontinent.

A patient might tell me about his experience as a businessman in his younger days and can recall in detail his workflow processes around billing, getting clients and managing his staff but now he cannot remember what he had for breakfast. He might tell me how his work was his life and that now he cannot see a future for himself now that things are so different.

A daughter might tell me about how she has almost entirely lost her sense of self between caring for her young children and an older parent with increasing needs.

Losing a sense of identity is not an uncommon experience for people living with Dementia and their families. From the point of view of the person living with the disease, they might feel a sense of loss by becoming more and more detached from their surroundings and losing track of events. During more lucid periods, they might tell me how devastating becoming aware of this can be.

Family members can experience anticipatory grief: losing the person slowly over time before they lose them physically at the point of death. It can be wearying to constantly face the reality of slowly losing a loved one combined with uncertainty approaching an inevitable end. They might speak of the person losing the light behind their eyes, their sense of humour becoming dulled over time and finding the grooves of their deep familial connection with the person being eroded with time. In addition, the role of being a carer comes with significant responsibility, new anxieties and never ending administrative tasks. When will you get the chance to be a daughter, a son, a husband, a wife again?

Acknowledging these feelings does not make them go away but it can help you make sense of your experience. I will leave you with this one question: If you could describe your experience of living with or caring for someone living with Dementia in one word, what would it be?

Who can you share that with today?