Hope amid the hell of being a dementia caregiver | Letters

I found Fanny Johnstone’s article interesting because it highlighted the hope, as opposed to the despair so often associated with it, in caring for someone with dementia (‘I wouldn’t have missed it for the world’: 10 things I learned when my father had dementia, January 8). Still, I found the circumstances somewhat exceptional.

For most people, the upheaval caused by caring for someone with dementia can be extremely trying, time-consuming and very stressful. I cared for my own wife for eight years, who was diagnosed with dementia when she was just 56 years old, before being admitted to a nursing home. During that time I often felt very isolated, lonely, emotionally and physically exhausted and sometimes desperate. The whole experience ended up being life-changing.

Despite all the information and advice from various national charities and the NHS, you are largely left to fend for yourself. I have a filing cabinet full of pamphlets and leaflets, many of which remain unread. Family members and friends were not always available, while local healthcare facilities can be expensive and do not always provide the consistency and quality of care needed. Opportunities for necessary respite are difficult to find. Unfortunately, the British healthcare sector is fundamentally broken. It has insufficient resources and is unable to provide the necessary support.

Despite the challenges we face, as the article highlights, caring for someone with dementia can be rewarding. During the eight years I cared for my wife, I found new ways to relate and relate to her. I have developed new skills including sewing, piecing and quilting. I also learned to play the guitar, so that we could sing together every day. Even though our lives were turned upside down, we still managed to experience some wonderful moments of joy and laughter.
Barry Coleman
Tamworth, Staffordshire

I loved the article about caring for a father with dementia and agree with everything the author says. I care for my son, who has a severe disability, and like the author, I wouldn’t have missed this for a lot of surprising reasons. However, her experience lasted eighteen months, while mine lasted thirty years.

If only social services could have an ounce of empathy and understanding – they have been our worst enemy and simply provide extremely conditional funding. I am not considered the best judge of my son’s needs and, like other parents in my situation, I have to fight all the way. There is very little suitable respite available and trying care homes has been a nightmare. Nothing is properly managed or funded, and he is safest at home with me and a small team of carefully chosen caregivers who often feel like family. But I’m almost seventy and like many others I know, I’m worried. This is the state of affairs for long-term unpaid carers and their dependents in this country.
Name and address provided

During my mother’s dementia and my father’s ill health, I decided early on to record my conversations with them. This involved them simply chatting about their lives, ambitions and what was bothering them that day. Since they are both deceased, I find that I can remember what they looked like, but not what they sounded like. To this day I appreciate hearing their voices; the sound of my mother singing Limerick You’re a Lady is a heartwarming evocation of two wonderful parents.
Rory Murphy
London