A Dark Matter: a conversation through Dementia With Leanne McIntosh & Roger Kimmerly

35 people came together at the Gabriola Public Library On November 21st to have a conversation about dementia. Leanne and Roger shared their experiences through poetry and example. Everyone was invited to share their own perspective and experience, and many shared their own personal experiences.

Leanne said we have to imagine and reinvent in order to cope with a health crisis in our families. She read a poem from Liminal Space about how she saw her husband’s “transparent body” which changed her perception of his illness.

Her book Dark Matter has evolved from a box of papers and journals from her friend Jack Sproule, a retired Catholic Priest and her interpretation of his writings reflected on by Leanne’s poetry.

Roger spoke of his work in hospice with dementia and Alzheimer’s. It is all about the “lost and found” and communication with/through dementia. Resistance, fear, denial and sometimes escape are common reactions both by the person afflicted and their families. Caregiver’s are often forgotten in the chaos and darkness of dealing with dementia. For someone with dementia things aren’t the same, it is as if they have new eyes and ears and a strange new dialogue with the world. It is as if there is the disease and the person sharing the same body. One must appreciate the person and understand the limitations of the body in that the disease and the person are co-habiting the body.  It is very important to be in the moment with the dementia and present to the reality as perceived.

Both Leanne and Roger emphasized the importance of the Journey and that “Every day is a gift”. It is a journey of diminishment. In stages a person may exhibit: fear, confusion, anger, disorientation. We can help the person through these stages by our consistent presence in their lives. Laughter helps. We must give them permission to not do everything perfectly and remember there is no agenda in their lives [does not matter if they think breakfast is supper or vice versa]. People with dementia are no longer time bound but life is simultaneous. Who’s reality is it theirs or ours?

The journey for the caregiver can be more difficult than that of the patient because the patient doesn’t realize their own situation. Dementia is an unwelcome guest and very difficult to comprehend and a constant hardship. It can be a journey of continual financial worries, health care issues, etc.  It is a dark hole for people living with someone who has dementia and remains constant 24 hours a day, seven days a week. The world shrinks to caring for the person and family and friends find themselves withdrawing from the outside life they know and can suffer from loneliness. There can also be moments of desperation, tears, and loss. That familiar conversation with a loved one, hugs and laughter are no longer. It is a long goodbye filled with stress and exhaustion. The impact on the caregiver is huge especially if they have no community to support them it can be an even bigger problem.

Possible strategies: realize the disease can be both a Guru and a thief. It is an allegory of dissolution and separation. We face the confusion of not being confused – who’s reality is it the caregiver or the patient and which is better. Try to never impose your own reality; they wouldn’t understand it anyway. We are all connected by disorientation, lack of memory, being human and more than human. Remember to be present to their relatedness and understanding of how, what, why and where. The person’s essence/soul remains eternal. It is a mystery. Solutions may be outside the present accepted patterns. Be strong and courageous but know you are not alone and there is help – reach out for it if necessary.