a care-giving journey – part 1

Tom and Karen Brenner, authors of You say goodbye and we say hello: the Montessori method for positive dementia care, interviewed me recently about the experience of my mother’s dementia journey. Their questions enabled me to reflect on our experiences as a family, from the early stages of the condition to mum’s passing early this year.

Here is the first of three extracts from the interview, which was published in two parts on Bob de Marco’s wonderful Alzheimer’s Reading Room blog:

http://www.alzheimersreadingroom.com/2016/09/can-you-tell-us-about-your-caregiving.html

http://www.alzheimersreadingroom.com/2016/09/dementia-care-lessons-as-blessings.html

a care-giving journey – part 1

This post shares some of the things that helped mum to remain in her own flat at the retirement village, and to avoid being moved into a frail care facility, for as long as possible.

Can you tell us about your care-giving 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, overnighting 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 marvelling 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 recognising 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 favourite 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 piano recital programmes, 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.

For years one of mum’s 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 specialised care facility for the last four years of her life). 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!