Mum recording1

Sharing our gifts

Music was Mum’s greatest gift. Author Malcolm Gladwell maintains that ten thousand hours of practice are necessary to achieve mastery in a field. As a student, concert pianist and music teacher Mum had rehearsed and performed for many more hours than that. Music-making was hard-wired into her whole being – from her brain, to her heart and soul, to her fingers and toes.

A few years before Mum was diagnosed with dementia, she moved to a retirement village. Her grand piano went with her, gracing the communal lounge. Every Friday night was the ‘Celtic Evening’. Mum would play requests and residents would belt out traditional songs, well-oiled by each one’s preferred tipple.

The family bought Mum an upright piano so that she could practise in her flat. Even after she was diagnosed with dementia, Mum continued to share her gift of music, accompanying a retired opera singer who came to her flat to rehearse, and teaching her grandson to play the piano. Dementia didn’t prevent her from producing a CD of 16 piano pieces as a wedding gift for her son Bill and his wife Janet. Sitting next to her on the piano stool during the recording session, I was amazed by her technical accuracy and emotional sensitivity.

Mum recording1

Mum’s grand piano moved with her to the dementia care home where she lived for the last four years of her life. Almost every day Mum would spontaneously sit down at the piano in the lounge and play, continuing to share her gift with those around her. Over the years, she forgot most of her classical pieces, but she never forgot how to create harmonious music. Mum gave her final ‘recital’ just two weeks before she passed away.

Our gifts become blessings when they are shared. Those who receive the gift are blessed. And the giver is also blessed as they receive appreciation, acknowledgement and affirmation.

What gifts does your loved one with dementia have to share? And what opportunities exist for them to share their gifts, and be acknowledged and affirmed for their uniqueness?

Mum recording6

Erosion had revealed two heart-shaped quartz crystals that had been hidden in the rock

Dementia … a process of erosion

When a loved one is diagnosed with dementia, it’s natural to focus on the many aspects of their life and yours that are being lost. Indeed, the dementia journey can feel like a long process of erosion.

In Alzheimer’s Disease, the part of the brain that allows us to convert experiences into memory is affected first. Brain cells shrink and die. As they disconnect from one another they can no longer create the connections that allow memories to be stored. This results in the loss of short-term memory.

Damage to nerve cells in other parts of the brain results in further losses. Eventually a loved one may be unable to go to work, make a cup of coffee, recognise family members, ask for what they need, speak, or feed themselves.

As a care partner, the changes caused by dementia affect many aspects of the life you once knew and your plans for the future. Precious aspects of your relationship are lost, like conversation, support and security.

Because many people find it hard to relate to a person with dementia, some of your friends may disappear too. And as society tends to recognise people because of what they do, rather than just because they are precious human be-ings, dementia may also result in a loss of recognition and respect.

Erosion had revealed two heart-shaped quartz crystals that had been hidden in the rock

Erosion revealed two heart-shaped quartz crystals that had been hidden within the rock

While walking on the mountain a few weeks after my mum died, I sat on a rock to admire the view. As I looked down, I noticed two heart-shaped quartz crystals embedded in the rock.

The message to me was clear:

Dementia is like a process of erosion. Over time, a solid rock may wear away and crumble into sand. But that is not the full story, because that same process of erosion may reveal a beautiful crystal hidden in the heart of the rock.

It takes courage to embark on this journey of loss. But many care partners have discovered that dementia can also become a journey of love.

Dementia strips away much that is superficial in our lives. It reveals aspects of our loved ones and ourselves that were previously hidden from view. It destroys the myth of independence, and invites us to connect with our loved one more deeply than we had ever imagined possible.

Mum's dear friends, June and Ray, visited her every week for tea

Don’t try to go it alone …

DC mindmap 6

I subscribe to a few dementia support groups on Facebook. These are safe, moderated, on-line spaces where people caring for their loved ones with dementia can share their stories, seek advice, and experience the solidarity of others who deeply appreciate what they are going through.

Many posts are from people who are almost single-handedly caring for a family member, and are experiencing what is known as compassion fatigue. They feel alone, unappreciated, burned out, resentful. The sense of overwhelm is palpable.

We know that “you can’t pour from an empty cup.” But how can you avoid becoming drained, especially if you can’t afford professional care? Here are some suggestions …

  1. Don’t try to go it alone

There are many reasons why a primary care partner might get find herself in a 24/7, 365 days-per-year commitment to caring for a loved one with dementia. From marriage vows and personal promises, to a deep sense of responsibility or a belief that nobody can do the job as well as you can, to a fear that asking for help might make you look less than competent – these and more reasons can stop you asking for help. But the truth is that you don’t have to do it all, you CAN ask for help, and it will be a lot better for you and your loved one if you share the responsibility with others.

  1. Stop trying to protect others

Ironically, we sometimes try to protect others from playing an active role in supporting a loved one with dementia, while burning out ourselves. Before asking for help, we assume that they are too busy, or don’t want to be involved, or that they won’t be able to cope with how the person is changing. And yet, none of that may be true – and we may be denying both parties precious opportunities for connection.

  1. Share what works with others

It’s time to get dementia out of the closet. It’s time to get rid of the stigma that disconnects people with dementia from the people, places and experiences that give their lives meaning. Let’s share with family members and friends how to communicate with a person with dementia, so that they can continue to play an active role in your loved one’s life.

Mum's dear friends, June and Ray, visited her every week for tea

Mum’s dear friends, June and Ray, visited her every week for tea

  1. Draw up a roster – and stick to it

When Mum was diagnosed with dementia, we drew up a roster of visits and activities to keep her stimulated and connected. Friends and family members visited regularly for a cup of tea, or to take her shopping, or out for a walk, or to her house church group. A driver fetched her for her regular hair and beautician appointments. This regular rhythm of appointments created structure in her life, and ensured that every day of the week, someone would be there to check that all was well.

  1. Make time to do things that bring you alive

Once you have established a roster, make it work for you too. Go for a long walk at the beach, meet a friend for coffee, go to a movie, take a dance class, have a nap, lie under a tree and read a book – whatever your body and soul are longing for.

Let’s all keep connected to life, love and meaning!