drafted

Once you’ve been drafted, you may as well enlist

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Few of us choose the role of caregiver. Rather, many of us are drafted into it unwillingly; some of us are dragged kicking and screaming.

When I left Dubai in the autumn of 2011, and came back to Canada to care for my then 83-year-old mother, I knew nothing about dementia of the Alzheimer’s type, and even less about caring for someone who was living with it. Mom’s big red brick house on the hill in rural southeastern Québec was nine miles from the nearest town, and a far cry from the international juggernaut of a Middle Eastern city in which I lived for eighteen years. It took only two months for me to become completely exhausted, drained of every physical and emotional resource I thought I had. I was ready, as my mom would’ve said “for the cleaners.”

But somehow I managed to survive, and even more amazingly to eventually find moments of joy on the caregiving rollercoaster. I cared for Mom in her own home for a year with the help and support of one other amazing care partner, a young woman named Caroline. We became a close-knit family of three, each on her own journey, and each also somehow connected to the other two at a deep level. During that year we shared a multitude of joys and sorrows, and I learned more about caregiving than I had ever wanted to know.

Here are three key concepts that are “hooks” to some of my most important lessons:

1) Acceptance

Once I’d made the decision to come back and be a caregiver, I also decided there was no point looking back and missing the lifestyle I had loved, the business I had abandoned, the friends I would never see again, the trips I wouldn’t take, the money I wouldn’t make, the opportunities I would forgo, the fun I would never have, and so much more. I chose to make the most of where I was, difficult as it was, and I created the best hand I could with the cards I’d been dealt. There was power in that.

2) Discovery

I’m a naturally curious person, and I love to learn. Spending so much time alone with Mom forced me to look at our relationship in new ways. While we had always been good “friends,” it had not always been easy. All of a sudden we were together in close quarters: two fiercely independent women each of whom had run her own business for several decades, each with a mind of her own, each accustomed to doing what she wanted when she wanted and not having to accommodate anyone but herself. We were very much her own people. Plus, one of us had a brain disease about which we both new little. It was a miracle we didn’t kill each other. But we didn’t. We found ways to get out of conflict and onto safer ground. A whole lot of healing ensued.

3) Rock ‘n Roll

They say life is a roller coaster. If it is, being a caregiver has to be the world’s biggest and baddest. That’s a bit of a shock for someone like me, whose idea of adventure is the merry-go-round, or the Ferris wheel. But what I found was that feeling my feelings, whatever they happened to be (the lowest lows or sometimes the highest highs) was therapeutic if a little intense at times. I don’t know what it must be like for care partners who deal with other kinds of diseases, but with Alzheimer’s I experienced raw emotions that would turn my world upside down, as well as joys that would make my heart sing. They were all part of the journey, and now that it’s over, I’m thankful for riding (and writing) the ride like I did.

My mom died on August 17, 2016. I miss her. But I’m glad she’s dancing free of the confines of the broken body and mind she left behind. I’m grateful for the ten last years I had with her, and for the lessons I learned and that I’m still learning as a result of our journey. My hope is that others might be blessed with a fraction of the grace I have found.

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About the Author

Susan Macaulay

Susan Macaulay is a better dementia care advocate, activist, blogger, speaker and facilitator. She provides training to informal care partners and paid care workers in highly interactive, engaging, hands-on workshops. From 2006 to 2016, she was the primary care partner for her mother who lived with Alzheimer disease. Susan is a proponent of biopsychosocial models of care, and believes in fundamentally changing the way we deliver eldercare in Canada. Beside blogging for TCN, she has her own blog at MyAlzheimersStory.com.

3 Comments

  1. Hi Susan,

    Thank you for sharing your experience of caring for your mother – and also for your advocacy efforts on behalf of a more sane, humane, and integrated health approach for the care of our elderly.

    I agree completely re: the dangers of anti-psychotic drugs and am glad that my 96-year-old mother, as anxious and “irrational” as she can get in coping with the deterioration and loss of control she is feeling, has said “no” to these drugs. In her own words, she does not wish to be a “zombie.” And the potential effects can be even more devastating.

    My mother lives in an assisted living facility in another city and I have been going back and forth for several years, spending about half my time there to give her the in-depth attention and care (mainly psychological) she needs. Fortunately, my brother who lives there does the day-to-day ground care (picking up things, etc.) I talk to her several times a day on the phone and am her main emotional support.

    You’re right – caring for an elderly parent and going through the process with them intimately in their last stage in life – is hugely demanding on every level. But it is also rewarding and enriching and I would not trade it for the world. It is a gift I will cherish forever as I will her.

    Blessings,

    Patryce

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