Sep 12, 2016

Can you tell us about your caregiving journey with your mother?

One of my most special memories of mum is the last time I took her to a restaurant for afternoon tea ...

Dementia care, memory care and the piano.
By Tom and Karen Brenner
with Alice Ashwell
Alzheimer's Reading Room

The following it the first part of an interview that was conducted by Tom and Karen Brenner.

Alice Ashwell is a reader of the Alzheimer's Reading Room and lives in Cape Town, South Africa.

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Questions for Alice Ashwell

1. Could you tell us a little about Cape Town and your life there?

I love living in Cape Town. It truly is a city of contrasts. Famous with tourists for the iconic Table Mountain, Robben Island, Kirstenbosch Gardens, superb wines, and the best coffee in sub-Saharan Africa, it is also infamous for being one of the most dangerous cities in the world.

Extremes of wealth and poverty, the tenacious legacy of Apartheid spatial planning, and an entrenched gang culture are just some of the challenges that disallow complacency, and result in many ordinary citizens drawing on their creativity, courage and compassion to do extraordinary works of service. I am privileged to live in a place in which the worst of conditions bring out the best in people.

I was privileged to work at Kirstenbosch Gardens during the years of political transition in the 1990s, after which I started my own consultancy. Since then, I have become a life coach, and love to conduct coaching sessions in natural areas. Influenced by the experience of my mother’s journey with dementia, I hope to offer coaching services to the families and carers of people living with dementia.

2. Will you share some memories of your mother before she had dementia?

My mum Elizabeth was one of the kindest and most gracious people I have ever known. She loved God deeply and for many years spent the first hour of every day in prayer and reflection on his word.

She was a dedicated wife and mother, and I think one of her most stressful roles, which eroded her physical and emotional health, was protecting her young brood from their father’s criticism and anger.

While only my sister has gone on to make a career of music, mum bequeathed to all her children a love of music and rhythm. It was through music that she was able to express the full range of emotions that she felt but could not give voice to in her marriage. She coaxed tenderness and triumph from the keys, revealing the fullness of her soul.

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Mum was oblivious to race, rank and privilege and engaged all people with warmth and humility (except those whom she described as ‘bossy’!). Listening was one of her special gifts.

I remember her advising me (as a painfully shy teenager) not to worry about having nothing to say in company. Instead she encouraged me to hone my listening skills: “God gave us two ears and one mouth so that we can listen twice as much as we speak,” she would tell me. She listened long enough and deeply enough so that others could hear themselves think.

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3. Can you tell us about your caregiving journey with your mother?

By the time we realised that mum was living with dementia, she had moved into a retirement village down the road from her home. I live about 50 km from there, so for years I visited mum almost every weekend, spending Saturday with her, over nighting in her flat, and leaving after breakfast on Sunday when my sister fetched her for church.

In the early stages of her dementia journey, mum was physically capable, so I would take her on outings to the country, to restaurants and tearooms for lunch or tea, and for walks on the beach, in the nature reserve, or along the river.

Mum had been a keen walker in her youth and loved being outdoors where she could appreciate nature’s beauty and freshness. As she became more frail and incontinent, our horizons narrowed, but fortunately the retirement village had beautiful grounds, so we would take a tray of tea into the garden, have a slow walk greeting residents and admiring the flowers, and sit on the swing seat marveling at the mountains.

Mum was a great diary-keeper, which helped enormously in the early and middle stages of dementia. Initially she kept her own diary, which guided her days. In time, we filled it in and got visitors and carers to mark off the days, so she would have some sense of where she was in time.

We would record enjoyable things we had done together, adding lots of smiley faces. We also put signs up in her flat to remind her of where to find things. We were fortunate that the retirement village had carers on the staff who would dispense her medication and (as time went on) ensure that she went to meals, and help her to shower.

It was important to be aware of her increasing frailty, and to put things in place to keep her safe, like recognizing when it was becoming dangerous for her to bath (which she was used to), and encouraging her to start showering (which she had not done in the past).

For many everyday aspects of support like showering and shopping I am indebted to my sister who lived a few minutes’ drive from mum, and who looked after many practical details.

One of the things I loved to do when I stayed the night with mum was to wash her face and hands before bed. I would fill a basin with warm water, sit on the couch next to her, and gently give her a mini-facial. It was such a beautiful way to be close to her.

I also loved making her a light supper and eating it on her veranda by candle light, with one of her favorite CDs playing in the background. Even if we weren’t able to have a ‘conversation’, sensory stimulation like food, music, views, and beauty in general seemed to calm her and elicit appreciation.

Photographs were a mainstay. We organised photo albums, stuck named photos of family and friends on her cupboard doors, and often paged through albums with her. I gave mum an electronic frame so that she could view digital photos sent by her sons who lived overseas. Photos of people and places from her youth, as well as memorabilia like old recital programs, seemed to remind her of how she was connected to others for quite a while. Eventually they meant less and less, but we still felt it was important to surround her with family photos.

We created a roster to ensure that mum’s weeks included regular activities and visitors. We enlisted the help of a wonderful woman who would drive mum to her weekly hair appointment at the salon she had been going to for 40 years, where she was well loved and cared for. Twice a month she took mum to a young beautician who worked from home, and who had a baby whom mum just loved.

Friends also had regular tea dates with her in her flat, and for years one of her prayer partners picked her up once a week to join in the prayer circle.

After mum died, her friend told us that well into her dementia journey, mum would get into a ‘zone’ in which she could pray with depth and power, even though she could no longer follow a conversation.

I experienced times like this when mum would suddenly say something to me that was deeply wise and pertinent ... but afterwards she would become confused and not remember a thing about what she had just said. At times like these I came to appreciate what is meant by soul-to-soul communication.

When mum moved into her flat at the retirement village, the family bought her an upright piano. She continued playing the piano until she was bedridden just two weeks before she died. She even recorded her only CD (as a wedding present for my brother) early on in her dementia journey, including some of her really challenging concert pieces. It was so important that she never stopped sharing this gift of hers. Music continued to be a way in which she expressed herself emotionally, bonded with others, and received encouragement and validation.

One of my most special memories of mum is the last time I took her to a restaurant for afternoon tea (she collapsed a few weeks later, ended up in intensive care, and after that was admitted to a specialized care facility for the last four years of her life).

Good Alzheimer's care and dementia care leads to good things.
There was a beautiful grand piano in the restaurant, and a pianist was rehearsing for an evening event.

Mum was ‘playing’ the music on the tablecloth, and the pianist noticed that her fingering was accurate. She invited mum to come and play.

I mentioned quietly that mum was living with dementia, but I might as well have said nothing.

Mum sat down and played beautifully, quite surprised by the attention from the manager!

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