I was on a residential course for my social work training over 30 years ago when I first heard my mother had been diagnosed with dementia. She has had chronic mental and physical health issues all her adult life including anxiety and depression for which she had electroconvulsive therapy (ECT) Talking therapies such as counselling and CBT were not used in those days and I believe that ECT was responsible for her memory loss in the early days.
Mum has always been reserved, strong willed and used to getting her own way. She has also had a low self esteem for as long as I can remember, the reason for which I have never been able to understand.
I have seen first hand from working with people living with dementia how dementia effects everyone differently and how big a part personality, character, life experience, past occupation and lifestyle play in shaping a person’s dementia journey.
Over the years Mum’s memory deteriorated. Making choices became difficult for her and she would avoid answering the phone, asking my father to take over calls. Dad has always been a source of reassurance for my mother. Just by being around he provided her with a sense of security.
As Mum’s faculties declined my father gradually assumed responsibility for the things she could no longer manage – cooking, cleaning, laundry, finances and arranging and escorting her to the many appointments she had.
The impact of dementia on relationships
My parents had been happily married for over 60 years when my father’s eyesight and health began to fail. His previously placid manner began to change as he increasingly became frustrated with my mother, constantly correcting her when she said or did something wrong. I repeatedly asked him not to give in to the urge to ‘put Mum right’ when he knew something she said was wrong but he was unable to stop doing it.
It was sad to see two people who loved each other struggling to cope, My mother’s cognitive decline and deteriorating memory on the one hand and my father’s failing health and ability to cope on the other, both unable to understand each others’ perspective. They were both experiencing emotional reactions to debilitating, frustrating and frightening changes to their inner world and increasing dependence.
Dementia affects the whole family especially those closest to the person living with dementia. The impact on my father was made worse by his own deteriorating health. He was overcome with guilt at no longer being able to care for my mother and the anger and frustration he felt towards her was a new experience for him. This happened alongside increasing exhaustion due to his illness and it was painful to watch this proud, competent and kind man fighting dependency.
The end of an era
Eventually Dad could no longer cope. Mum’s frequent need for reassurance (the result of anxiety and memory impairment) and her mental and physical dependency on my father got the better of him and my mother had to move into a care home, something I had always dreaded and done everything possible to avoid.
For a long time, my mother was even more anxious than usual. She refused to leave her room in the care home, refused to be compliant with staff (the only way she was able to maintain control) and talked of wanting to die. I think she was experiencing Separation Anxiety; a state of excessive anxiety when an individual is apart from a person (Dad) or place (her home) that makes them feel safe and secure. For people living with dementia, separation anxiety is one of the most common causes for wandering (or as I like to call it ‘wondering’ as there is always a reason) but as Mum was unable to walk unaided, she was unable to wander.
About a year after moving Mum into a care home, my father’s health deteriorated. I moved in to care for him at the end of his life and he passed away soon after. Mum eventually had to leave the care home due to her poor mobility, lack of compliance with staff and challenging behaviour. However, I will save that story for next time!