Chris Moon-Willems, from Sussex, talks about her mum Beryl who lived with dementia for more than 30 years. 

How was your mum diagnosed?

Mum had chronic mental and physical health issues all her adult life including anxiety and depression for which she had electroconvulsive therapy (ECT). Talking therapies were not used in those days and I believe the ECT was initially responsible for her memory loss. A combination of memory and neurological problems resulted in her being referred to a London hospital more than 30 years ago. I remember the day well because she phoned me up afterwards to say she had dementia, but it wasn't the 'big baddie,' presumably referring to Alzheimer's.

After that her memory gradually got worse and she became more reliant on Dad. But it wasn't until much later – in 2011 – when her memory had deteriorated a lot and her behaviour was becoming very challenging that her psychiatrist told me she probably had Alzheimer's disease, although the only way he could be sure was if he looked at her brain after she died.

What happened after she was diagnosed with Alzheimer's Disease?

Mum was prescribed Donepezil (Aricept) which didn't seem to make any difference and caused nausea.  She was taken off it after two years. Dad continued to be a constant source of security and he assumed responsibility for cooking, cleaning, laundry, finances etc. Unfortunately, her physical health deteriorated as well, until she became dependent on a wheelchair.

How did you tell other people and what was their reaction?

Mum had a myriad of mental and physical health issues and people were generally sympathetic. My father was so used to Mum being diagnosed with different things, that it didn't have much of an impact on him.

What were the main challenges you faced and when did they happen?

My parents had been happily married for over 60 years, rarely spending a night apart, so it was sad to watch two people who loved each other so much struggling to cope physically and emotionally. Dad's previously placid manner began to change as he became frustrated with Mum and constantly felt the need to 'put her right.' He was frequently exhausted and then overcome with guilt at not being able to care for her the way he wanted. He was a kind, proud and competent man and it was painful to watch.

Eventually Mum’s complex needs got the better of him and Mum had to move into a care home, it was something we had always dreaded and done everything possible to avoid.

Once in the care home Mum became even more anxious than usual, refusing to leave her room, refusing to be compliant with staff (the only way she was able to maintain control) and talking of wanting to die. I think being apart from Dad, and being away from her home, was causing Separation Anxiety. I now know that Separation Anxiety is one of the most common causes for people with dementia to wander, but as Mum was unable to walk unaided, she was unable to wander.

Chris and her mum at an event for Chris' business
Chris and her mum at an event for Chris' business

Her frequent changes in behaviour were extremely challenging, and it felt like we were on a rollercoaster. When she began to phone the police we had to have the phone cut off, which she was not happy about.

Then she began writing copious horrible notes, some in shorthand as she was a secretary in her younger days. Many were directed at me who she blamed for ‘putting her in a home’. In the end we had to remove anything she could write on from her room as she would read her notes and think someone else had sent them and they were true.

But she could sometimes become so eloquent, loving and interesting that people questioned why she was in a care home. You can imagine how this made my dad feel!

I came to accept that there was little point in increasing her anxiety, and my own frustration, by trying to change her perception, even when she was convinced, for example, that Dad was having an affair. However, it wasn't easy to hear her agonizing about my father not loving her anymore.

Eventually we moved her to a different care home that specialised in dementia. In many ways, Mum was the most lucid resident. One day she would appear articulate and reasonable and on others, belligerent, angry, confused and hurt at being 'abandoned' by my father. Dad died in 2012 and I was astonished by how well Mum managed to cope. She passed away in March 2015, aged 89.

Did any services made a difference?

Yes, in 2005 my parents joined a national pilot to trial Personal Budgets when Mum was still living at home. A Personal Budget is when the local authority give you the money to buy or arrange goods and services to meet your needs rather than a professional deciding what you need and getting it for you. So for example,
* Instead of Mum having to go into a council care home when Dad needed a holiday, we arranged for them both to stay at a small hotel in Bournemouth near friends and a luxury home run by the RAF (my father was in the RAF).
* They didn't like Meals on Wheels so I arranged for a local pub to deliver their meals.
* Instead of having a series of different carers coming in, I was able to employ one carer for Mum five days a week (I took over at weekends) and a male carer once a week for Dad – someone who could take him out, give him a break from Mum and  provide much needed 'boys talk' while Mum went to a small club for older people. Having control of her budget meant we could be creative and meet her needs in a really personal way.

Did any particular products or gadgets make life a bit easier?

Yes, I've been particularly impressed by the way technology can help. Getting Mum an iPad for example enabled her, with support from carers, to keep in touch with us, sending texts, picture messages and emails. Other products that helped included:

- A Day clock showing only the day and time

- An emergency alarm to call for help, linked to a personal response service as I was at work and had my mobile switched off most of the time.

- A motion sensor light I purchased in a supermarket to go over her bed. This went on when she got up and reduced the falls she was having at night due to forgetting to put the light on.

- When Mum complained of missing Dad, my son recorded videos of him talking to her about a range of subjects on his mobile phone. These were transferred to a disc to play on a DVD recorder we got for her.

Has your experience of living with someone with dementia changed your perception of it?

Yes, on reflection I realise that everyone’s dementia journey really is unique and that we need to see the person rather than their dementia. Dementia affects everyone differently. Cause of dementia, personality, character, life experience, past occupation and lifestyle play a big part in shaping a person’s dementia journey.

What lessons have you learnt and what advice would you pass on to other families?

I found that simple pleasures can delight people with dementia. Watching birds on a bird table, going for a walk in the park or having a hand massage or manicure – Mum loved having her nails painted – can bring joy.

I'd also say:
* Think outside the box to resolve challenges and consider a Personal Budget if you can.
* Put together a life story book. We made one for Mum with carefully chosen photographs of family holidays, Christmas, birthdays and other significant events, in chronological order. Carers were encouraged to go through this with her when her mood was low, to help focus her mind on more positive memories.
* Slow down! People with dementia are generally very sensitive and can sense if we are in a rush – so stop trying to do too much and instead try to appreciate the moment!

Chris is the founder of relativematters.org a specialist that helps to support elderly people and those with dementia organise the best care for themselves.

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