A Personal Story ~ Part One
Dementia ~ Ages and Stages:
In some ways I want to apologise for not writing helpful articles and sharing carer tips from people across the North of England for carers and people living with dementia over the past twelve months. Having devoted much time to my mother over the years, particularly during the past year, has allowed me to experience caring at the very deepest physical and emotional levels.
Disorientation was the first sign mum presented which, looking back could have been a symptom of dementia. When I took her shopping, she became less confident, not leaving my side and engaging in conversation most of the time so I would always be close by. I soon realised she didn’t want to be left on her own. She became less clear of her whereabouts, asking about direction and eventually showing signs of panic if I suggested nipping back to the car with heavy shopping, or taking separate check-outs in the food store as we had always done. Dementia? Wouldn’t this symptom appear much later in the disease?
General forgetfulness and her lack of interest in reading followed some months later. I put this development down to her age. Wouldn’t we expect some form of memory loss from any person in their eighties? I organised an at-home eye test and bought some slimmer romance novels with large print. Besides, Mum could still answer crossword puzzles at great speed, enjoy newspaper headlines, television programmes and conversations. But quite soon, Mum was double checking everything; appointments, shopping requirements, birthdays. A behaviour pattern which clearly required extra patience. Mum didn’t ask for it of course, but I could see that my continued patience helped her to feel more confident about her home, when making choices and planning ahead. We carried on like this for some time. Keeping things simple. Maintaining routines. Reiterating details. Staying calm.
Mum was house-bound and appeared to be losing interest in everyday life. Surely, this was understandable for a lady of eighty-five? I would take objects for her to engage in: a grandchild’s story of achievement, a photograph, a small bunch of flowers, a cake, a magazine, gardening booklet, in fact anything I thought she may be able to find interest in to talk about. We would tidy out cupboards, one drawer each week, sorting, clearing and creating an environment where choices and selections would be easier. I was mindful that mum’s personal objects remained in the places she was used to. We just simplified everything – with Mum in charge of all decisions. These shared tasks created a sense of purpose and we enjoyed the time doing something useful – an activity which proved to be invaluable later on.
As my mother’s dementia developed I noticed that her confusion began to worsen at a much faster pace than I had expected. One week, Mum was reading regularly, the next, she couldn’t remember the characters or the storyline – yet she continued to race through crossword books at an academic pace.
My mother’s GP didn’t diagnose dementia in the early stages. My siblings and relations thought I was over-reacting. Mum was a proud woman and wouldn’t accept extra home or personal care and I carried on, taking on the developing stages as they occurred and helping mum as much as I could, keeping her company, shopping, organising house repairs, medications and more. I realised my daily visits had been increasing in time and I had added extra visits throughout the day and evening as a matter of course. I felt I couldn’t take regular breaks, slowed down my work load and missed out with social occasions. My mother was elderly, house-bound, confused, scared and needed help. I loved my mother and never thought to question the effect on my life, or more importantly, my health. When mum sadly passed away, I realised I had been caring for almost four years. Four years doubting dementia. Four years managing. Four years alone. Four years without a support team. And loving.
I found myself in situations I struggled to manage alone, physically and emotionally. I didn’t ask for help. No-one believed me. As the dementia symptoms changed with a sporadically, I felt I hadn’t the time to build a support team. I lost interest in my needs and socialised less. My eating habits had become irregular and unbalanced and loaded with comforting carbs. My sleep patterns were almost non-existant. So, over the next few months, I’ll share my findings, tell some sweet stories and share as many tips as I can recall to help others prepare and plan when caring for a loved one living with dementia.
So, please, if you recognise repeated signs of confusion, disorientation or forgetfulness, don’t think your partner, relative or friend is ‘having you on’ or a little over-tired – encourage the person to seek diagnosis so that you can build a support teams for the person living with dementia and the carer, make plans, prepare for changes and enjoy meaningful times together.
During workshops to help carers enrich social care for people living with dementia, I often talk about ages and stages. There are no set stages. Age has no real relevance. Each person’s dementia is different. My personal experience has proved this to be so true and I now realise even more, the importance of awareness. We not only need to help family carers to be more prepared, it’s vital that carers are able to maintain their own well-being.
Please note: If you or a relative are worried about memory loss, visit your doctor or memory clinic for a simple test[s]. Disorientation or confusion could also be a symptom of: Stress – Fatigue – Illness – Infection – Depression – Medication – Constipation.
Gillian Hesketh February 2015©
Part Two ~ Take Care of You ~ Please call back later in February for the continued personal story.