‘We noticed the dementia about six years ago’

Pippa from our Education team reflects on her own mother's Alzheimer's as we prepare to organise another dementia course for professionals.

I’m an Education Support Officer at St Christopher’s CARE, supporting the training we do here and I was particularly delighted to support our recent study day on ‘End of Life Care for people living with advanced dementia’.

This was the first study day in a group of three for health or social care professionals supporting people at the end of life, helping them feel confident and competent when working with people with advanced dementia.

My mother, 73, has advanced dementia – Alzheimer’s. She was a very successful businesswoman, often giving speeches in London and more recently at the age of 66 became an ordained priest holding services in a central London church.  A big networker!

We noticed the dementia about six years ago – small things like when we started getting two or more cards for a birthday, a phone call just after a phone call with no recall we’d just spoken, and bigger things when she started not getting to meetings on time, or being late to church as she’d got lost getting around London. And a year on from that when London visits had stopped and she started putting underwear on over her trousers, thinking nothing of it.

“As a family, of course it’s been very difficult to see my Dad losing his partner of 50 years.”

This course, while covering important topics such as symptom management, nutrition and advance care planning, also had a section about family caregivers and the emotional labour of caring for a loved one with dementia. I offered to tell my story in this section of the course.

Mum was living at home with my Dad until November last year. She had a carer come to the house most mornings but my Dad was struggling with the double incontinence. We could see the immense strain on him – definitely emotional and physical labour – so we decided to move her to a care home local to him specialising in dementia. Fortunately she took the move very well and I do feel this is down largely to the good care she is getting there.

She is totally ‘in the moment’ and possesses no real memory of the past now. She’s left with her core essence of being a gentle, laughing, friendly lady, capable of making those around her smile. Even without being able to initiate a conversation, she joins us in a song and laughs at my jokes. I know the carers at the home enjoy her sunny disposition.

As a family, of course it’s been very difficult to see my Dad losing his partner of 50 years when they should be having a fantastic retirement. Knowing how hard it was for him (and us when we stepped in to help) to care for Mum, manage the house, and the constant washing and cleaning. Not leaving her too long. Losing his freedom. Finding she’d wandered off or fallen over. Not being able to hold a rewarding conversation when they used to discuss everything.

The guilt we all feel is hard – we’ve had to persuade Dad not to bust her out the care home when he decides she’s incarcerated! Their COVID restrictions have been above government guidelines – as a family we know they care about their residents’ health but we’ve found it tough – we haven’t even seen her room. There’s a slight friction there – is she ours or theirs?

I was glad on this course to hear mention of the value of music – we know that works!

It was emotional this summer – my brother came over from Australia with his baby that we hadn’t yet met. He hadn’t seen Mum since December 2019 except on video calls. We had briefed him on what to expect. Mum didn’t reach out for the baby as ‘old Mum’ would have done but on the second visit she did amazingly refer to him as her ‘newest grandson’ which was so lovely to hear.

The care home have done some wonderful things – we can visit on a time slot (and they give us great refreshments!), video call at very short notice, and when we asked, they arranged a big family picnic there this July – it’s so rare we can be all together with my brother living abroad. It was a special effort with tables set up in the stunning grounds. We took lots of photos we know we will treasure.

One carer told me the other day ‘Sally is always giggling’ and I know they are fond of her. These little insights in to how she is when we are not there are so important. We also like that they get her up and out her room everyday – I couldn’t bear to think of her stuck in a room, she was so social.

We also bring her dog Monty to visit and there’s no problem doing this – she always remembers his name!

I was glad on this course to hear mention of the value of music – we know that works! My brother, like me, resorted to music – and nursery rhymes – all words perfectly remembered by Mum. Music brings her alive – feet tap, arms wave around, a beautiful tuneful voice. We can all continue to connect with her this way.

We know she doesn’t know our names, but we know she’ll love anyone who gives her attention and shows her their care and in return she’ll smile her beautiful smile that hasn’t changed one jot when everything else has.

If you are a health or social care professional supporting people at the end of life, do you feel confident and competent to support and care for people with advanced dementia and their carers?

There are two more study days coming up – you’ll meet me if you attend as I will be supporting in my role as Education Support Officer.

The dates are 23 November 2022 and 2 February 2023 and full information and the programme can be found here.