Even with severe dementia emotional memories remain

Carole talks about the last few years caring for her mother as her dementia got worse. Carole believes we all need to find the courage to discuss concerns with our older relatives about their health, in spite of what can be rather fierce independence and the ongoing parent-child relationship. 

Our story

In the late summer of 2015, my sister Jane and I discussed how once her holiday was over, we should try to raise the subject of extra care with our mother.  Before Jane came back from her trip, our mother Betty had forgotten how to use her washing machine then how to have a shower and quickly after, was emptying the contents of the fridge into a cupboard and was unable to remember the names of foods, grapes became ‘the green’; she couldn’t recognise a sandwich.

Social services were great, and quick to offer help, but in spite of two carer visits per day and  frequent visits from Jane and I, Betty’s speed of descent into dementia outstripped the rate at which support could be arranged to meet her needs in her own home.

Betty no longer knew what the telephone was and said she only felt safe in bed, but she was scared of the bedroom TV and also of her bedroom furniture. When carers came in for the first of what had been increased to four daily visits, they would find her trapped under the bed – with no idea how she managed to get there with her level of ability. Betty began to forget how to eat and couldn’t express her needs because the words had gone. We got frequent calls from social services when she had falls, ‘hard hit’ according to Betty.

Into hospital

Betty was admitted to hospital following a nasty fall in late November 2015.  Doctors were unable to deliver a diagnosis of dementia because blood test and scan results were negative. As a result, and after three months in hospital, (she thought it was a hotel much of the time) she said “We’ve all had a lovely time here with the family, but I think we’ll go home now”. The various care agencies had no choice but to discharge her home, even though she failed all of the cognitive tests.  It was like sending a toddler to live alone.

Into a care home

Luckily [?] Betty had a severe episode of desperate fear, confusion and extreme distress on the day that the mental health team came to visit in January 2016.  We were greatly relieved that she was admitted to a care home where she received a diagnosis of Alzheimer’s disease based on the family’s reports of the changes in her behaviours and ability.

Betty died in January 2018 after spending two years in a lovely care home.  Lovely, but very scary to us and Betty in the first months, until we got used to it and Betty became less able to understand her surroundings.

What my sister and I learned

We all need to find the courage to discuss concerns with our older relatives about their health, in spite of what can be rather fierce independence and the ongoing parent-child relationship.  My sister and I reassured Betty on many occasions that she was ‘just getting a bit older’; with hindsight she was raising her own concerns about her mental state and we were unwilling or afraid to acknowledge them.

We can be more prepared by actively seeking information about how dementia affects people.  It’s not as easy to recognise as you’d think, and Betty clearly used coping strategies to hide the issue from family and health professionals.  So engage with all agencies including health and social care and charitable organisations such as Age UK.  Read whatever you can get access to, particularly others’ experiences.

Fears and concerns

The two most important things I learned were to never dismiss the fears and concerns of someone suffering from Alzheimer’s – they are all too real for them even if we know them to be unfounded. Also the ‘photograph’ analogy.  Normally we create memories with a visual and emotional component as well as being able to grasp time, place, who was there, context etc. Someone with advanced Alzheimer’s disease loses all but the emotional part of new memories – the ‘picture’ element is gone.  So when we visited Betty she had forgotten we were there even before we walked away.  We aimed to create a warm, ‘feel-good’ experience during the visit that would last for a little while after, helping to create calm and reduce fear and anxiety.

Jane and I spent a lot of energy trying to ‘fix’ what we saw as new problems, getting upset and frustrated.  We now realise that we couldn’t have won the battle to save Betty from the increasing impact of dementia. The amazing GP looking after Betty gently explained how things would happen over a period of months, and that’s pretty much how it went.

Our coping strategies

The strain of visiting Betty was tremendous and Jane and I had our own coping strategies.  Jane visited the nearest petrol station after visiting, to access her favourite snacks and sandwiches, eaten hastily in the car.  I spent time driving around needlessly before going to visit, and browsed for an hour in the nearest supermarket afterwards.  Small treats helped us to get by.

Even though Betty didn’t really know who Jane and I were in the last few months, she always knew her grown-up grandchildren when they visited – quite amazing.

Some helpful reading

Dementia: The One-Stop Guide: Practical advice for families, professionals, and people living with dementia and Alzheimer's Disease June Andrews

Keeper: A Book About Memory, Identity, Isolation, Wordsworth and Cake Andrea Gillies

Contented Dementia: A Revolutionary New Way of Treating Dementia : 24-hour Wraparound Care for Lifelong Well-being Oliver James

Somebody I used to know Wendy Mitchell

The BBC reports that dementia risk factors are not known by half of the population https://www.bbc.com/news/health-47116845

Where memories go: why dementia changes everything https://www.bbc.co.uk/programmes/b006qftk/topics/Dementia