Life with dementia: my family’s experience

My grandmother, Dorothy Pye, succumbed to Alzheimer’s disease in her later years. We saw signs of forgetfulness from her late seventies onwards, but it wasn’t until she was in her early eighties that she was diagnosed with Alzheimer’s. She was moved into full time care shortly after that. With Alzheimer’s Research UK now in the running to be charity partner at my workplace, Mace, my family’s experience has made me determined to do all I can to support the charity.

We had a ‘Granny annex’ in our home, where Nan had lived for several years. It was a place that kept her near the family but gave her some independence.  After my brothers and I had all left home there were just my parents and Nan left. Then Dad developed Motor Neurone Disease (MND) and suddenly the focus was on his care. What was happening with my Grandmother in the background wasn’t necessarily fully understood by any of us, as it crept up a lot slower than the MND.

My mother was left trying to hold down a job and care for two people at home, both of whom were deteriorating at different rates. Mum managed to arrange visiting care for both of them, but it wasn’t enough. Eventually the community nurses spotted that Nan was actually a lot worse off than we had thought. That was the point at which more intensive assistance was offered to deal with the increasingly more demanding care issues of dementia.

“The person with dementia feels in some way violated but can’t describe either reason or cause”

Caring for someone at home is difficult and exhausting. The forgetfulness is initially a bit ‘quirky’ but develops into something which becomes a lot more emotionally entangled. Things which have been misplaced moved from ‘lost’ to ‘stolen’ and accusations were made which were hurtful when you were only trying to help. The person with dementia feels in some way violated but can’t describe either reason or cause. People and places from forty, fifty and sixty years ago become real and present again whilst the events of yesterday are forgotten. You are no longer recognised as a family member and any sense of gratitude is lost. We found that getting Power of Attorney over Nan’s affairs was a must.

The physical invasiveness was also an issue. Getting dressed became a problem for Nan.  Items of clothing were put on in a different sequence from what you would normally expect. Some things were not put on at all. Other things were kept on for days without changing. The intimate and personal functions of normal daily life eventually had to be shared with a carer, which was awkward for all. Incontinence became a relentless battle. Infections became commonplace which complicated things further and added to the discomfort. Eventually the constant use of antibiotics meant they became less effective and hospital admissions for physical complaints started to creep in to the routine.

“The carers in these institutions are the unsung and underpaid heroes of our society”

Nan’s eventual admission to full time residential care brought some relief, but came with its own demands. Suddenly we faced issues with the stability of the care home system and allocation of local authority funding. The carers in these institutions are the unsung and underpaid heroes of our society, where the increasing number of older people requires ever increasing numbers of carers.

Eventually a pattern emerged. The doctors patched up various physical failures in the body and some quality of life was restored. There was enough left of the person to raise a smile, remember a happy day, enjoy something tasty for tea or hum along to a tune on the radio. Slowly the activity level reduced, the physical issues became more frequent and diagnoses from the doctors were less clear. The organs still appeared to function but the signals and messages controlling them were weaker and more confused. Eventually the body closed down, the vital signs disappeared and a curtain was drawn around Nan’s bed.

My Nan would never have shared any of this detail, it would have challenged her ‘stiff upper lip’ values. What she did hold dear was the concept of goodwill and charitable spirit and she would have encouraged me to do something good for others.

Dementia leaves a person so reliant on so many other people that one person’s illness becomes the story of several others. From the experience my family have had of seeing a loved one with dementia, one of the most difficult things was not having a treatment that could help my Nan. It is amazing that medical science knows so much about the physical function of so many bodily organs, but can do so little for the brain when it is attacked by disease. With our support and donations I hope that Alzheimer’s Research UK can do something to change that – that’s why I’ll be voting for them to be our next charity partner at Mace, and I hope many of my colleagues will too.