What Nobody Tells You About Caring for a Parent with Dementia

If you’ve never cared for someone with dementia, I need you to understand it’s not like caring for someone with any other illness. It feels like being held to ransom by the disease. The grief doesn’t wait for the end — it starts at diagnosis and never really lets up, not during the illness, and not even after they die. I believe that the grief starts when the symptoms emerge and there is a feeling of both helplessness and hopelessness but at this stage it is not always possible to pin-point it.  It is the acceptance that things are not the same and never will be.  Furthermore, the decline isn’t a straight line either. Some days my mother would seem almost like herself again, remembering something small, and that would lead to me feeling hopeful. Then the next day another piece of her would be gone. You live on a rollercoaster, permanently braced for the next drop. In my case, every memory that faded felt like a small death, and I had to grieve it all over again.

I found it hard to explain to others who had only met her post diagnosis as to what she was like before.  She was soft-spoken but so strong-minded, purposeful in everything she did. By the time the disease had really taken hold, she was fragile, argumentative and suspicious of the people around her. I still wonder, sometimes, whether those traits were always in her somewhere and the dementia just pulled them to the surface. That’s a question for another day.

What I missed most was my old mum — the one who taught me to bake, to crochet, to sew, who sat with me patiently while I got things wrong and gently put them right. The grief with dementia, like the disease itself, doesn’t move in a straight line either. It starts and stops. Small things would set me off, and they still do. She used to cook and bake all the time, for every occasion, and I was her sous-chef. Later, when I would ask her for a recipe, she would just say she couldn’t remember.  Another cell gone.  Another memory that only I carried now. That’s what the grief is like — it is broken but also continuous. Every small loss lodges itself somewhere and stays. You lose the person repeatedly in pieces, so that when the final loss comes, there’s sadness, yes, but also an element of relief that they are no longer trapped inside a body and mind that has stopped cooperating with them. I found real comfort in a term coined by researcher Pauline Boss — “ambiguous loss,” the psychological absence of someone who is still physically there. That’s exactly what it is.