We know that dementia affects different people differently. On Day 10 of our series of ‘walk in my shoes’ blogposts, looking at dementia from different perspectives, Chris Moon-Willems describes vividly how it can affect the same person very differently on different days. Thank you Chris for sharing your insightful family story…
The Roller Coaster Ride of Alzheimer’s
My story highlights the fact that Alzheimer’s can affect people differently and change from day to day like a roller coaster. Mum was diagnosed as having dementia by a London hospital over 20 years ago. She was never told what kind of dementia she had, just that “it wasn’t the big baddie”. Presumably they were referring to Alzheimers.
Over the years Mum’s deteriorating memory affected her ability to undertake daily living tasks and my father gradually took over cooking, shopping and managing their accounts. Physically she became less active and prone to falls but her biggest challenge by far was the constant need for reassurance from my father. The same thing being repeated over and over as she was unable to recall our reassuring answer to whatever she was worried about at the time. Mum refused to go anywhere without my father or even to watch a TV programme without him watching it with her.
Mum was eventually diagnosed with Alzheimer’s and my father’s sight and general health deteriorated to the point that we could not continue to care for Mum at home. Despite my best efforts to avoid it, Mum was eventually admitted to a residential care home for people with dementia, after 64 years of marriage and never having been separated, other than for my mother’s hospital admissions.
The days and weeks after Mum went into the care home were difficult and over a year later this is still the case. She has an unrealistic perception of her abilities and thinks she can do much more for herself than she can. She also has no awareness whatsoever of the effect her mental state has on people.
As a result she is unable to understand why she had to move into a care home and believes it is because my father, siblings and I no longer love her.
One day Mum appears absolutely normal. Intelligent, articulate and reasonable and on others, she is belligerent, angry, confused and hurt at being ‘abandoned’ by my father. The emotional roller coaster I found myself on came as a complete surprise to me.
My father passed away three months ago and I have been astonished at how well Mum has coped. She was understandably tearful and sad at first and still breaks down from time to time. One of the biggest changes has been that her periods of normality have increased significantly. She continues to take a pride in her appearance and is undoubtedly the most mentally alert resident in the care home. However, there are still times when she becomes confused, paranoid and difficult to manage. Physically she cannot walk unaided and requires help to empty her catheter, which she has to manage frequent urinary tract infections.
There are now more ‘good’ days than ‘bad’ days and I never know from one day to another what to expect. The emotional roller coaster has thus become ever more challenging.Chris Moon-Willems is the author of Relative Matters – The essential guide to finding your way around the elderly care system for older people and founder and owner of a dynamic care consultancy for older people. Chris also cared for her elderly parents who were two of the first older people in the country to have a personal budget. http://www.relativematters.org