Dad, You’ve Got Dementia by Kristen Phillips

In this gentle, meditative book, Pōneke poet and author Kristen Phillips captures the conversations and experiences she shared with her beloved father Don who lived with dementia for the last eight years of his life.

Phillips’ writing is deliberate, compelling, concise. Some pages have minimal content – a quote or a short paragraph. Other sections are longer; all have thought-provoking narratives. The first part of the book (2011 – 2018) covers their conversations. The second part is set in 2019 – Don’s final year – and goes into greater detail, describing life events and milestones from the small to the significant. On every page Phillips’ love for her father is evident in her words and her actions.

When Don was first diagnosed, Phillips was living in England. Many of her initial conversations with her father were by phone. Don was always thrilled and grateful to get her calls, eager to hear her news, willing to share his wisdom and advice.  He wrote letters too, keeping Phillips and her partner Mia updated about local events and family matters, the incessant rain, concerts and other shared interests. He was aware that he was ‘slowing down’ and that his abilities were declining.

Life has slowed down for me in substantial ways. I’m obviously experiencing memory-loss ... [2015, while Don was still living at home].

And, a few years later:

                        I feel flattened out…

To Don’s delight, Phillips made annual trips home from London. These face-to-face visits brought much happiness to them both, with Phillips describing the trips as ‘intense, exhausting, and precious’. In 2019, Phillips and Mia took a one-year sabbatical and returned to Aotearoa for an extended visit. During this year her father moved into hospital-level care in a retirement village. Seeing her father in person brought home to Phillips how much slower his movements had become over the last 12 months. Now he also needed help to eat. Feeding her father one slow mouthful at a time evoked complex emotions.

                        I have a mixture of feelings: sadness, relief and gratitude at being able to do something practical.

When Don eventually lost his ability to express himself through words, he could still communicate through smiles and touches, including hugs and playful punches. Music continued to bring him joy, whether listening to Phillips’ piano-playing, nodding along to songs at church, or tapping to the beat of a blues CD.

Gradually, too, Phillips became more involved in the assisted living community that Don had moved into. She learned the rhythm of its daily life, and befriended other residents. Her descriptions will resonate with those of us who have had a loved one cared for in a similar place – the offbeat conversations with others who live there, the stories that the carers share, the opportunities to pitch in by making a bed, helping another resident, or simply making people laugh.

There is some country and western music playing. I dance in front of the rows of residents as if I am riding a horse, which makes them laugh – having visited the unit so often I feel very at home there.

Phillips also appreciated the support, respect and understanding shown to her father by people in the wider community: the patient audiologist who helped with a hearing aid fitting, the attentive McDonald’s crew member, the kind and cheerful cranial osteopath.

Inevitably it becomes clear that Don is dying. Phillips feels an urgent need for the family to be prepared.

The hospice nurse has some other advice, which I find helpful: you can’t prepare for the moment of death. Somewhere inside myself I believed I could be ‘ready’.

                        He is dying as he has lived, calmly, not making a fuss, getting on with it.

Residents and staff form a guard of honour as Don leaves for the last time, his body on a trolley. Phillips and others watch until the tail-lights of the hearse slowly disappear.

As Dementia New Zealand explains, “No two dementia journeys are the same.” The symptoms, rate of cognitive decline, and loss of other abilities will vary from one person to another. You or someone close to you may have a different experience to Phillip’s father. Even so, the practical tips and list of resources that Phillips shares, together with her thoughtful reflections, may help you to feel less alone as a carer, partner, whānau member or friend who is supporting someone on their dementia journey.

Reviewer: Anne Kerslake Hendricks   

The Cuba Press