Dementia - a personal perspective

Inspired by a recent article in Practice Nurse on dementia, Katherine Hunt decided - courageously - to share her own experience of this difficult and distressing condition. We hope you will be moved by her account and be equally inspired

It was with a sense of relief that I read the article 'A guide to vascular dementia'.¹ Relief that such articles are there, in print, reaching out to our profession to give more understanding about dementia.

As I read the words 'our ageing population means that most practice nurses are likely to encounter patients with dementia' I also wondered how many practice nurses are also experiencing dementia on a very personal level and coping with the impact of what dementia brings to their own family life.

My father, who died last year aged 83, had vascular dementia and my mother was diagnosed this year with a mixed pattern of Alzheimer's disease and vascular dementia. I have no doubt that there are many other practice nurses who are facing the same challenges, faced with bringing up their own family and caring for elderly relatives, in addition to striving to maintain a professional path.

It was 8 July 1995, the day of my wedding. My father was giving his speech and I became aware that he appeared to be going 'off piste' and stumbling over the odd word or two. It wasn't like him, he was used to public speaking, but I brushed it aside putting it down to nerves or maybe one glass of wine too many. It was a wedding after all. Then over the years, he struggled more and more with finding words and finishing sentences and I looked back to that joyous day in July and I knew that the first signs of dementia had been staring me in the face.

My father was a fit man, admittedly having a history of angina from an early age with a coronary artery bypass graft in his late 50s, but he wasn't overweight, never smoked and was a successful athlete in his day. He retired as an accountant in his early 60s and went on to do voluntary work for the Citizens Advice Bureau for several years but, realising he was losing his grasp for figures, decided it was time to stop.

The day he gave up his season ticket to Portman Road was an acknowledgement of his own realisation of what was happening, not the fact that the football had become so dire! He had insight into his struggle for recalling words, occasionally showing frustration but never anger. He did however, become excessively worried about his own finances and had a sense of 'doom' that something bad would happen, quite unfounded, in a monetary sense.

Performing his Mini Mental State Examination with him was so distressing - to see my father, whose mental arithmetic had been second to none unable to subtract simple sums - was so humiliating for him.

Physically, he remained relatively well for a long time, although he did develop a staggering gait, but he eventually lost the ability to communicate verbally. His eyes, however, spoke volumes. He used to love to take himself for walks, always maintaining an excellent sense of direction, but I feared that if he was alone, he might be mistaken for someone under the influence of alcohol if he ever spoke to anyone who didn't know him, as he was unable to make himself clear.

Thankfully, my parents lived (and my mother still lives) in a small market town with a very strong sense of community and were therefore surrounded by people who knew my father professionally and personally. Latterly, we had a carer to accompany him on his walks when we couldn't go with him.

I have been fortunate enough to look after my parents as we are the traditional extended family group, with my parents living in an adjoining annexe to our house. My mother was my father's main carer and she was totally devoted to him to the point where it was quite difficult for her to accept external care in the last couple of years of my father's life.

There was plenty of care and support available to us from Alzheimer's UK, Age Concern and the local respite carers' organisation but she felt that he was her responsibility - she had done it for the past 59 years and she wasn't going to stop now. He did go to a local day facility care once a week, primarily for my mother's benefit and I will never forget the kindness and care the carers showed my father. We were able to arrange for my father to have a week in a local care home, primarily for my mother's respite, but I have to say, she was so miserable with him not being there I often wonder if it was counterproductive.

It was shortly after that that my father started to deteriorate quite significantly. He began to fall frequently and to lose control of his continence. One Sunday morning he fell and broke his hip. It was the beginning of the end. I am still haunted by the 'care' he received in hospital, and it saddens me greatly to say it. My father spent his last six weeks in a nursing home, only five minutes drive away, where he was given the respect, care and dignity he deserved. My mother spent his last six weeks, sitting by his bed holding his hand and was with him when he died, just six months short of their 60th wedding anniversary.

THE PRESENT DAY

As I write, it is now September 2012, my mother has been diagnosed with Alzheimer's disease and vascular dementia. I guess we never really accepted it earlier as we were so absorbed with my father. She struggles enormously with her memory, and where my father couldn't speak, she can't stop! There is constant repetition and she needs never-ending reassurance about time and place.

As a family we are presented with very different challenges and sometimes you need the patience of a saint and, at times, I do have to remind myself, that this is a disease process.

My teenage children have grown up with dementia and they amaze me how accepting, caring and tolerant they are. Rightly or wrongly, I know they play the occasional game of 'Grandma bingo' where they mentally have a score card for the number of repetitions from my mother at meal times. It's their coping mechanism.

We are surrounded by the availability of support as I am lucky to have a large family, although not all of them live close by, and my mother has many friends who pop in. Wilshire Farm foods have been a godsend! She now needs enormous encouragement to go out, indeed to get her out of her bed in the mornings, but when she does she thrives off the social interaction, even if it's just taking her to the shops.

Again, since her diagnosis Age UK and Alzheimer's UK have been in contact and I am in the process of organising additional support as at the moment I am my mother's sole carer. I must also learn to accept support for both myself and my mother as I have witnessed first hand how easy it is to believe, or feel you must, do it all yourself and the detrimental effect that can have on your own wellbeing not to mention the impact it has on your own family life.

I cannot deny there have been very dark moments, feelings of frustration and being overwhelmed. Equally, I am very privileged to have the opportunity to care for my parents and that it is a completion of the cycle of life. However, I must not ignore the help that is out there for carers.

There is still a lot of ignorance about dementia, even within our own profession, but it is something we will all have to deal with either professionally or personally and the more we understand, the more we can help our patients and their carers. Articles like the one in Practice Nurse can help to inform and enlighten us all.

REFERENCE

1. Perry M. A guide to vascular dementia. Practice Nurse 21 September 2012;42(14):25-29