I wrote this letter in September 2016, for The Guardian’s ‘A letter to…’ section where readers are encouraged to submit a letter they ‘always wanted to write’. My letter doesn’t quite fit the format (and wasn’t published), but it appealed to me because it helped navigate my feelings about our situation

Dear mum

It’s a year since vascular dementia took hold of you. I was already deeply concerned following your mini-stroke and minor car accident in the days preceding my visit. Over the previous month it had became clear you could no longer manage everyday rituals like taking your medicines, or using the phone. You had also abandoned your morning prayers.

You were standing expectantly at the back door of your home when I arrived, as if you had been waiting there for hours. Our embrace acknowledged the difficult time you were going through, but we had no idea of the calamity to come. In Porthcawl, the following day you began to feel queasy, with what turned out to be another mini-stroke. After help from St Johns Ambulance, several days of visits to the local GP and hospital followed. Then on the fifth morning, you asked me if I was the ‘lady of the house’ betraying the fact you didn’t recognize your home of two decades. For a short while, I wasn’t even sure if you knew who I was.

Even at that alarming time, your greatest concern was for me. When I was fussing over you, you somehow remembered that I was meant to be working! Through my tears, I explained I was more concerned about you. Mum even now, you are still taking care of me, like you always did. You have always been compassionate, caring, putting others first and taking strangers under your wing.

Later that day you were admitted to hospital where you stayed in a secure ward for six weeks. Your fluctuating levels of confusion seemed to baffle the doctors. Sometimes you appeared quite lucid, at others you slipped into previous periods of your life, but the constant was that you had no idea where you were, or where your home was. You couldn’t find your way to the nearby toilet, and back to your bed, even after six weeks in the same ward. You were frightened. So was I.

In the hospital’s ‘Best Interests’ meeting we were told the only viable option for you, was a care home. It’s been a difficult year since then. You were so extremely anxious about being left on your own, amongst strangers. You were lonely.

I moved into your house to be near you, and between my sister and I, we visited every day. At Christmas you realized your husband of over fifty years, my father, was dead. You relived the grief, pain and hurt you had felt when he died in 2012, and were furious I hadn’t told you.

The home closed its doors to visitors for three weeks in February to contain an infection, and you thought we had abandoned you. It was around then you started talking of wanting to top yourself and shortly afterwards were diagnosed with depression.

You had an infection in March. I had just got back to my home in Brighton after an overseas work trip. Mandy who takes you to church, urged me to hurry back to Wales. I arrived later that day to find you in your room on your own, slipping in and out of consciousness. An ambulance had been called but you weren’t high priority. I manged to raise the urgency level and soon had a first responder, a volunteer, who stayed with us until the ambulance came. In hospital, back in the secure ward, you were put on suicide watch.

We (husband, sister and I) went on a Contented Dementia course and now feel much better equipped to support you, and to help carers and visitors support you too.

In the home you are constantly helping other residents, showing empathy to those who are distressed, or getting things for those less mobile. You think they are children most of the time, and that you are their carer. You believe the communal areas of the home are waiting lounges for trains, flights or boats, for journeys that you are perpetually on.

You are calmer now, less anxious about us leaving you, more able to enjoy the things you used to take pleasure from. Yesterday, we celebrated the flowers, trees and birds in the Bryngarw Country Park, as much as the tea and cake that followed.

Although parts of your brain have been affected by dementia you are still the warm, engaging woman you always were. You have a captivating and generous personality, that even dementia hasn’t diminished.

Yours

Julia

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