So THAT'S Why Caregivers Feel So Desperate!

 

Last week, I had a fascinating chat with the caregiving guru (and I don't use that word lightly), Denise Brown. Denise is the founder of the Caregiving Years Training Academy and has been guiding caregivers to resources and wisdom for almost 30 years. If you have a break in your day, grab a cup of tea or coffee and listen! 

Denise said something that really got me thinking. She remarked that both caregivers and those we care for are in a state of crisis because we do not have our basic needs met. I've been reflecting on the worst times in my caring life and I thought, "that's true. Those were the times that my needs were not met. And I was frantic that I wasn't meeting the needs of my loved ones too." 

So I began to ask myself, "What ARE basic human needs?" A quick google search led me to this article on Maslow's Hierarchy of Needs. Maslow was the clever scientist who devised this theory showing that (moving from the bottom of the pyramid upwards) we need our physical needs met before we can address higher level emotional or spiritual needs. But all these needs are important in human flourishing. 

Looking at this pyramid, which of your needs are fulfilled? Which needs are not being met currently in your life? What about the person you care for? 

Throughout the month of May, National Caregiver Month is celebrated across Canada to acknowledge the over 8 million people providing care to a family member, friend, neighbor or chosen family across the country. #CaregiverAware is a national campaign to raise awareness about the experiences of caregivers in Canada. I wonder how many of us have our basic needs met. Let's talk about our need for support and the right to an ordinary life that feels safe and liveable. Maybe Maslow's Hierarchy of Needs gives us the language to talk about getting the help we need to survive and thrive. 

 

Mother Lode: Confessions of a Reluctant Caregiver

 

When Dr. Zachary White and I were in the research phase of writing The Unexpected Journey of Caring, we talked about a phenomenon that we were observing in caregiver support groups online. Zachary called it “the great migration.” More and more caregivers (mostly women) were moving away from their own families to care for aging parents sometimes in another part of the country. Usually precipitated by some kind of crisis, most caregivers believed that a live-in stay with a parent would be temporary but many remained trapped in the role for years, apart from husbands or wives and children. This is what happened to Gretchen Staebler, author of the riveting memoir Mother Lode: Confessions of a Reluctant Caregiver. 

To anyone who has ever or WILL ever care for a parent, I recommend reading this book. The author fearlessly dissects her complicated relationship with her mother Stellajoe and her two sisters. The ghost of a beloved father is a shadowy presence throughout. Childhood relationships and old patterns become wholly unhelpful when Stellajoe becomes an unwilling dependent on her daughters. But it is Gretchen who has the greatest burden of care. 

Regular readers of my blog will recall my own caregiving journey with my Mom and then my complicated emotions when she died in August of 2018. I think my mother and Stellajoe would have been friends – they would have had a gleeful competition about how they could exert a crazy kind of control and then watch their exasperated daughters slink away in tears of defeated frustration. Gretchen Staebler’s words struck a deep chord: “This had seemed like a good idea. What the hell was I thinking?” 

I remember once, when my Mom had a life-threatening case of salmonella that she contracted from tainted peanuts, I rushed home to Montreal from London. My sister was exhausted and I was living abroad. I knew that when I came home, I could devote all of my time and energy to Mom’s care without distraction of my own family’s needs. I could offer my sister a REAL break – it was the least I could do. So I came for two weeks and navigated my mother from the hospital back to her senior’s residence with a lot of highly recommended homecare workers I hired to assist. When I arrived back in the UK, I called my Mom. “I just want you to know that I made it back fine”, I said. Mom: “You’re going to be mad.” ME: “What? Why?” MOM: “I fired them all. I had nothing in common with them. They don’t ski.” I could have wept. Or screamed. Gretchen Staebler’s book brought all this back, but the pulsing vein of love on every page rang true for me too. 

The author’s vow to stay with her mother for one year evaporates and a series of Stellajoe’s health crises confound the author’s attempts to carve out personal space and a life of her own. One year turns into nearly six. But the author’s mind and heart are not idle. She is learning deep life lessons of what she can control and what she cannot. She is learning to make peace with her past, present and her future. She is learning to make peace with her mother. 

 The author describes her newfound wisdom with truth and poignancy: As the miles rolled away, though, I slowly let go of my grip on what I thought my life would be as I turned sixty and began to look through the windshield rather than the rearview mirror Mama and I are tied to each other by an invisible elastic band, stretching only so far before reaching its capacity and snapping us back together. 

The title of my first book, The Four Walls of My Freedom is taken from Thomas Merton’s The Seven Storey Mountain in which he writes about how when he arrived at his monastery for the first time, he found “the four walls of my new freedom.” When our son Nicholas was born with severe disabilities, my baby and I became homebound. We needed to discover a path to a liveable, even a good life within our four walls. Gretchen Staebler quotes Merton too, coming the same realization as me: Merton writes on how we have to come to terms with the idea that our efforts, no matter how sincere, may be “worthless.” He reflects: As you get used to the idea, you start more and more to concentrate not on the results, but on the value, the rightness, the truth of the work itself. . . . In the end, it is the reality of personal relationship that saves everything. And later, The central question…. would have to change from ‘What do I want?’ to ‘What is available?’ 

I have been thinking a lot about my own mother since reading this book. How I sat by the river when she died, wondering, “Who was my mother? Who was she to me and me to her? What is my story about her? The old stories don’t work anymore, they don’t feel true. I just don’t know.” Later, I realized that I had to forgive my mother for being imperfect. And I realized my task was to mother myself in a way that I needed so that I could be released by forgiveness to love her. I have a lot in common with Gretchen Staebler and I bet every caregiver of a complicated mother does too. 

Please read this book.

Happy National Caregivers Day in Canada - Reasons for Hope

Today is National Caregiver Day in Canada. I feel spring in the air and I'd like to share some trends that I feel hopeful about - hopeful for the future of caregiving here in Canada and across North America. 

The first reason I'm hopeful is that The Canadian Centre for Caregiving Excellence is on a path towards successfully advocating for a national caregiver strategy which will ease the burden of care for us all. Disease associations and health care workers will join hands with disability organizations to form one massive coalition for caregiver support. We're all in this together and this is the first time any group has had the money, the power and the will to bring the country together for the good of caregivers. If you would like to participate in this movement for change, join the group's Canadian Advisory Network and share your experience. 

I am hopeful because there is so much research going on in Canada that is rooted in partnerships with family caregivers. This matters because this new model of partnership with families transforms both what is researched and how it is researched. And research informs the way health care is delivered. Caregivers like me suggest problems we'd like investigated, like my son's seizures during sleep or my Mom's model of small group assisted living arrangements. I tell researchers what really matters to our family at every stage of the project. Then I tell the family community about what the research found - in plain language. This is radical and it's new. 

If you are a parent of a child (any age) with disabilities, you might want to read about the Family Engagement in Research Program at McMaster University. If you want to have a role in creating a new caregiver support education program for health care professionals, then check out the University of Alberta's Caregiver-Centred Care Program (and tell your health care providers about it!). 

I am hopeful because there's a growing conversation in Canada about how local neighbourhoods can organize to support our caring families. The Asset-Based Community Development movement or ABCD is an concept of neighbour helping neighbour in an organized and supported way, based on people's interests, talents and availability. It's a clarion call to the spirit of community in which we know and care for one another. Cormac Russell is the Executive Director of Nurture Development (ABCD in Europe) and here, he explains the idea of neighbourhood as a unit of health and change. 

If this ideas intrigues you and offer you hope the way it does for me, then read Cormac's new book, The Connected Community.  In the book, Cormac and ABCD co-founder John McKnight offer a wealth of illustrative examples from around the world that will inspire you to explore your own community and discover its hidden treasures.

What else gives me hope? Cori Carl's writing - I'm a subscriber to her blog for The Caregiver Space. I experience a tiny thrill when I see a new edition appear in my inbox. Cori writes about people caring for each other from quirky angles, offering new perspectives on my own life with every new idea. 

I am inspired by signs of spring. There is still snow on the ground where I live, but we are making maple syrup with our neighbours. I will bring some over to Nick and we'll have pancakes together, savouring the divine golden syrup. Like all things made at home with love, it is so much better than store-bought! 

Finally, what gives me hope every day is my family. We love and celebrate each other. I'm so proud of our children. I don't know what the future holds for our society or our planet, but on National Caregivers Day 2023, I choose hope, love and family. 

Caregiver Recipe Exchange!

 I love food and I love to cook. But like any other caregiver, I often have no time to make something healthy and delicious, so that's when I turn to my "Under 30 second preparation time recipes." 

Now, some of these recipes require slightly more than 30 seconds to make, but they are all quick, easy and include only ingredients you might have in the cupboard or fridge. I would love to hear your recipes and so, let's share! Pop your favorites into the comments section and I'll post any that are shared on The Caregivers' Living Room facebook page. 😃

I'll start. Here's a great recipe for Greek Sheet Pan Chicken. Serve with a microwave-able packet of rice and voila - delicious AND healthy dinner! 

This Greek sheet pan chicken is an easy, all-in-one dinner recipe with juicy chicken thighs nestled around vibrant, caramelized vegetables. With 450 five-star reviews, you can't go wrong!

INGREDIENTS

• ½ cup olive oil
• 1 lemon, juiced (about 3 tablespoons)
• 4 garlic cloves, minced
• 2 teaspoon dried oregano
• 1 teaspoon dried thyme
• 1 teaspoon Dijon mustard
• 1 teaspoon kosher salt
• ½ teaspoon freshly ground black pepper
• 6 chicken thighs, bone-in, skin-on
• 1 medium zucchini, halved lengthwise and sliced (or, if you don't have a zucchini, use a tin of artichoke hearts, drained - my suggestion)
• 1 yellow bell pepper, chopped into 1-inch pieces
• ½ large red onion, thinly sliced into wedges
• 1 pint cherry or grape tomatoes
• ½ cup kalamata olives, pitted
• ¼ cup feta cheese
• 2 tablespoons finely chopped fresh parsley

INSTRUCTIONS 

• Preheat the oven to 425°F (220°C). In a small bowl, whisk together the oil, lemon juice, garlic, oregano, thyme, Dijon mustard, salt, and pepper.
  
• Place the chicken thighs in a bowl and pour ⅔ of the marinade on top, then use your hands to toss the chicken in the marinade and make sure it's well coated. Marinate the chicken for 10 to 15 minutes.
  
• While the chicken is marinating, spread the zucchini, bell pepper, red onion, and tomatoes onto the baking sheet and drizzle the remaining marinade on top. Toss together to coat the vegetables.
  
• Add the chicken thighs the baking sheet, nestling them around the veggies, and bake for 30 minutes.
  
• Remove the baking sheet from the oven, add the olives and feta and then place it back in the oven for another 10 to 15 minutes, or until the vegetables are softened and the chicken is cooked through to 165°F.
  
• Sprinkle the chicken and vegetables with chopped fresh parsley before serving.
• Here are two old faves of mine: instant brownies and apple torte - you can mix them up with a fork or spoon!

BROWNIES:

1/2 cup of margarine or butter melted in the microwave

2 heaping dessert spoons of cocoa powder

1 cup white sugar

2 eggs

1 tsp vanilla

3/4 cup flour

chopped nuts if desired

Mix before and after adding flour. Pour into greased 8" pan and bake at 350 just until slightly firm and pulling away from edges of pan (don't overbake or they won't be chewy). 

APPLE TORTE:

2 eggs

1 1/2 cups sugar

3 good size apples peeled, cored and chopped (any kind of apples work)

2 tsp baking powder

1 cup flour 

large pinch salt

Raisins or nuts if you want

Mix the eggs and sugar with a fork and then add all the other ingredients, mixing again. Pour into a pie plate or 8-9" greased pan. Bake at 350 until just golden brown on top. Great served with vanilla ice cream. 

What are your go-to caregiver favourite recipes? Share away!