Dementia Lessons | Blog | My Mothers' Caregiver
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Dementia Lessons

 

You wouldn’t know from my silence that for the entire year of 2015, Dementia and Alzheimer’s has dominated my thoughts. I haven’t forgotten or grown tired of the topic – No, it is what I have talked about, read about, advocated for and thought about as I tried to fall asleep.

For over two years, I have had the privilege of taking part in a project that allowed me to meet hundreds of people across South Eastern Ontario and hear their "lived experiences” as they lived with or supported someone living with dementia or similar diagnoses.

Oddly enough, the energy, passion and purpose that went into this venture – seems to have left me speechless when it comes to writing about my own mother’s dementia story. Instead it is as if all the experiences have rolled up into one large story that cannot be separated. Even now as I write, I am not sure where things begin and where they end.

Like all difficulties we are forced to face in life, trials are great teachers and Dementia has taught me several lessons – Lessons from Losses and Lessons of Hope.

 Lessons from the Losses:

No one could have prepared me for the sadness, the repetitive losses and the heart break that comes with this disease. This is not the "senility” we joked unknowingly about as children. This is not something "cute” that old people go through.

 No one could have prepared me for the stories of spouses who woke in the night, filled with terror, finding their loved one gone from their homes on a blustering January night -only to be found wandering down the middle of a highway lost and disoriented.

No one could have prepared me for how difficult and chaotic it is for older adults to find help, services and advice as the people they love begin to fall apart under the weight of memory loss and confusion. I knew from our own story that we felt frightened, in need of help and confused about how to find it – but I could not have even fathomed the amount of people that begin and end their days asking themselves, "What Are We Going to Do?”

No one could have prepared me for the gentleman who wished the love of his entire life a "Happy 60th Anniversary” only to be met with the crushing reply: "Are we married?”

No one could have prepared me for the stories of responsive behaviours that lead to violence, threats and accusations as some of the gentlest souls are now over taken by aggression or locked up in anxious and fearful thoughts. No one could have told me what it would feel like to receive a phone call that my mother has hit someone.

No one could have prepared me to watch my mother lose more and more little pieces of her true self, her ability to communicate, write her name, read a book, recognize her grandchildren or even remember my name.

And yet…in all this sadness, tragedy and loss – there have been lessons of hope and beauty.

Lessons of Hope

It turns out the beauty is in the people.

I have witnessed husbands, wives, friends and adult children who have endured more chaos, pain and loss than I could even imagine, and yet each day they rise, they love, serving as caregivers and advocates - and still find time to reach out to others who are hurting.

Despite the gaps, the organizational issues and the shortage of funds, I have seen wonderful, amazing paid and volunteer staff serve with excellence and compassion in long term care homes, adult day programs, hospitals and doctor’s offices. More than once in this journey, I have wept in the arms of someone who was being paid to care for my mother – and felt real empathy and concern.

I have watched men and women rally together in support groups, church groups or neighbourhoods lifting each other’s burdens, sharing tips and resources. I have been reminded that people are good, that most people (not just some people) DO care! I too have experienced community from people who started out as strangers – but through the sharing of our lived experiences have found peace of mind and friendship.

But, most of all, I have seen acts of selflessness, faithfulness and loyalty from people that made me want to be a better person.

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