Wednesday, 16 January 2019

How Our Book Became a Fabulous Short Film

Dr. Zachary White and I have co-written a new book called The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver. It's coming out on June 8th (Amazon, Barnes & Noble, etc.) and we are really excited to begin the public conversation about our ideas!

Eric Schultz and Tyler Funk are two young animation artists who wanted to make a short film for the Telus Fund Stories for Caregivers series. We all met and voila! Here is the wonderful result - our book in an animated short film form! If you love it as much as we do, please share.

Tuesday, 8 January 2019

Five Unexpected Rewards of Becoming a Caregiver

This is a wonderful guest post by caregiver and writer George Shannon, full of truth and wisdom.

George Shannon

It’s true, the life of a caregiver can be demanding, difficult and daunting. I spent seven years of my life in that role, keeping an eye on my wife’s every move. Just about every night, Carol and I awoke from our slumber at least five times to make trips to the bathroom. We spent endless nights in hospitals and long days in doctor’s offices. 

If given the chance to do it all over again, I would. Those years of being a caregiver constitute the best seven of my life. I learned a ton about myself and my family, became a more fulfilled man, and had the incredible chance to fall in love with my wife all over again.

While I could easily list twenty wonderful things about serving in a caregiving role, here are five very important and unexpected rewards:

1. A Better Relationship

When I started being a caregiver, time slowed down. Because the role can be so demanding, you must focus on the person. In the process, you learn what makes them tick – maybe things you hadn’t noticed before. Putting these nuggets of wisdom to use can make that person so happy, which in turns makes you feel good.

For Carol it was pancakes. When she needed a boost, a single pancake could do the trick. Every once in a while, she’d be down in the dumps. The minute I saw this, we were on the way to our local breakfast joint. Carol’s smile would make my day.

2. Precious Moments

Similarly, you get to be a part of some very special moments. Before my wife’s strokes, we’d spend some time together but did our own thing most of the time. After Carol got sick, I spent 90% of my time with her and I got to be a part of so many meaningful moments. 

Her father had come to live with us for a few years during her illness. He was around 90 at the time. Every night the Pittsburgh Pirates played on TV, they stood, held hands and sang Take Me Out to the Ballgame every time. You could just feel the love and joy between them. I’ll never forget those moments.

3. Discovering Humility 

This might be the most hidden of rewards. Before my wife became ill, I was a decent man and generally thoughtful of others, but my world had veered towards self-centeredness. I was set in my ways and had been accustomed to the order in my world. 

At first, out of necessity, I began taking care of her needs. Soon thereafter, I started feeling good when I did things to help her.  Then something tremendous occurred, I began to derive sustained joy when making her life better. By the time she passed away, I’d committed my life to completely serving her and felt total fulfillment. Why? I had become entirely selfless. There may not be a better feeling in the world.

4. A Deeper Relationship

As I gave myself over to her, my wife started to really feel the love. And in turn, she began outwardly show her love and appreciation. A day wouldn’t go by when she would tell me that “You’re too good to me,” or “Thanks for all that you do for me.” I never sought these assurances but when she’d offer them, it would light up my day. It was then I realized that we were falling in love all over again.

It was during this rekindled time that we showed our truest selves. From her, I got to see a hidden sense of humor and sharp tongue that often had me belly-laughing. For her, my wife saw a much more tender side and the softer edges of my soul.

5. A Stronger Family

Only one of my siblings and one of our three sons lived in Pittsburgh when my wife got sick. At first, I felt sort of alone in dealing with her health crisis but that didn’t last very long. The one son who lived the closest moved in for a year. My other two kids came in regularly and showered their mother with love. My siblings came in all the time and called when they couldn’t.

I’ve lived my life abiding by the philosophy that what happens to you isn’t as important as how you responded to it. My entire family respond with love, concern, help and support. Each time, their acts and deeds made Carol and I feel wonderful. I took great pride in seeing my family come together.

Don’t get me wrong, it wasn’t always easy. Yet, at the end of each day of caregiving, I always received a small gift – a sense of fulfillment. And now, when I look back at those seven years, I am reminded that my life had purpose which is the greatest reward of them all.

GEORGE SHANNON is the co-author of The Best Seven Years of My Life: The Story of an Unlikely Caregiver, which he wrote with his son, Chad Patrick Shannon. George was the caregiver for his wife, Carol, for seven years. While George was taking care of Carol's health, Carol was quietly showing the way to a humble and loving relationship. The entire experience transformed George's approach to accepting himself as he is, the circumstances as they are, and those around him as they are. Humility and unconditional love were the result.

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Tuesday, 1 January 2019

I Don't Do New Year's Resolutions... Except For This One

The New Year is a natural time for reflection on what was and what will be. I've been thinking about the changes in my own caregiving over the past year: Mom died on August 16 and I still have to remind myself that I don't need to call or visit her. Last night, Jim and I co-presented a mini-history of our family life with Nicholas at a New Year's Eve charity ball in support of the care home where Nick went for respite 'sleepovers' when he was small and where he lives as an adult now. 

So, I've been reviewing the past and considering the future, especially over the holidays. What will my caregiving look like in 2019? What will the future hold for me and Jim as we age into care receiving? 

A new study reveals that caregivers and care recipients are getting younger. The same survey shows that more men than we previously thought are giving care. And we know that they manage differently from women, but very little research has been done to illuminate the best policies and services that male caregivers find helpful. 

The caregiving landscape is changing for me personally and for all caregivers. As our society responds to our contemporary challenges, the roles of caregivers shift like fog in the wind. We do what needs to be done on an as-needed basis, like some perpetual game of whack-a-mole. Yet, even when the very lives of our loved ones depend on us, our caring roles, performed in the intimate privacy of homes are rarely seen or discussed. 

Here's an idea for something to hope for in 2019: Let's make caregiving visible and valued. Let's make our roles and our advocacy aims intentional and strategic. Let's talk about caregiving just like we talk about cooking or gardening - as a part of life that we plan, we talk about, and we value. Who's in?

Saturday, 22 December 2018


It's funny how the threads of our lives intersect sometimes to create meaning, sometimes giving us a clearer view of what is before us, or what is missing. 

Our daughter Natalie Wright is a curatorial assistant at a Milwaukee arts research institute called The Chipstone Foundation. One of her recent projects involved writing about an installation on view at the Milwaukee Art Museum that explores the idea of absence, grief and loss through the depiction of empty chairs. Natalie writes, "(In these images of empty chairs...)Time at once stands still and passes, asking viewers to consider what remains, what is lost, and why."

This Christmas is the first holiday season in our family without Mom. She passed away on August 16th this year. Christmas Eve was her birthday, so the holidays were always infused with her presence. If you browse late December entries here in the Caregivers' Living Room, you will always find an entry about how we celebrated Mom's birthday. Since Mom's death, my sister Karen and I have been wondering aloud, "What will we do at Christmas? How can we manage the holidays without Mom?" Our chats would inevitably end with a shake of the head, "It's going to be so... weird." 

So, here's what we planned. My sister is coming to our village in the mountains with her family. We will ski and snowshoe with our dogs off their leashes. We will skate on the river. We will go to mass on Christmas Eve and the priest will read an 'intention' for Mom. We will all remember her and say a prayer that she is resting in peace and happy in the afterlife. Afterwards, at dinner around our table, we will lift a glass of champagne to Mom and wish her a happy birthday. I'm sure there will be stories told, with laughter and maybe tears. 

This first Christmas without Mom, we're discovering new holiday traditions - ones that feel right for us at this point in our loss. What I've learned is that talking about traditions in the family, about what feels most healing is a good approach. If you have experienced a loss in your family this year or expect to experience one in the coming year, planning to remember a loved one at family celebrations can help to ease the pain of loss. 

Merry Christmas and Happy Holidays, everyone. 

Sunday, 16 December 2018

Helping Our Loved Ones to GIVE During the Holidays!

Our loved ones have dependency needs and sometimes that can make them feel 'superfluous' as my Mom used to say. More than anything, my Mom wanted to feel useful - she loved helping others! Christmas in our family was one time that we could help Mom to give. 

(NOTE: My Mom passed away on August 16 of this year and this Christmas will be very different for our family, but that's a subject for my next blog post.) 

Nicholas loves to give presents as well. As a matter of fact, today Jim is out hitting the shops with him. They're going for holiday haircuts at a trendy men's barbershop and then they're going to buy everything on Nick's giving list. Nicholas gives a lot of thought to choosing just the right present for his friends, helpers and family. 

If you are searching for something special to make and give with your loved one, you could try one of these personal favourites of mine: Spiced pecans or Cranberry Pistachio Christmas bark. Here are the recipes...

Spiced Pecans

2 cups Pecan Halves
1 1/2 Tbsp. butter
1 tsp salt
2 tsp soy sauce
1/4 tsp Tabasco sauce

Preheat oven to 300 degrees. Place pecans on a baking sheet. Melt butter and add remaining ingredients. Pour over pecans and toss with your hands, then spread evenly on the pan. Bake 15 minutes. Stir and toss again - then decant into pretty jars. I got mine at the Dollar store!

Cranberry Pistachio Christmas Bark

1 lb. White Chocolate (I use Baker's brand)
1 cup dried Cranberries
1 cup shelled, salted pistachios

Melt chocolate in the microwave (no more than 2 minutes at first, then in one minute increments after that, stirring till it's all melted)
Add the cranberries and pistachios and stir well. 
Line a cooking sheet with foil and spread the chocolate/fruit/nut mixture thinly on the foil.
Refrigerate till firm and cold, then break up into smaller pieces.

Your loved ones can help, even if it's just by tasting and helping to stir (Nick stirs with my hand over his). Each step in a simple recipe is an opportunity to contribute. My Mom didn't like to cook, but she loved to give. AND we chatted as I cooked - then she just beamed as she gave her friends and helpers their homemade
gifts. Giving is powerful medicine for anyone who feels a little bit 'superfluous' over the holidays. 

Wednesday, 5 December 2018

How to Save Money When Buying Mobility Aids

This week, we've been celebrating International Disability Day (December 3) and this year's theme is “Empowering persons with disabilities and ensuring inclusiveness and equality”. So there's no better time to talk about mobility aids. Access and inclusion in community was the topic of discussion on social media all day on December 3rd. But it's assistive devices that enable inclusion - mobility aids allow people with disabilities to do what they want, where they want - in other words, to lead an ordinary life. This guest blog post by Erica Sell is especially for US residents, but here are parallel funding assistance programs in Canada. - Donna

The cost of brand-new mobility aids (powerchairs, mobility scooters, walking aids, etc.) can, unfortunately, be exorbitant. Not only that, there is anecdotal evidence from consumers that vendors have charged inflated prices for adaptive equipment. These unscrupulous traders focus only on their greed and heartlessly charge ridiculously high prices for mobility products.

Have the mobility equipment you need and save money. (Image Source: Wikimedia Commons)

With that in mind and with household bills and other possible medical expenses to think about, it is natural that you’d seek money-saving alternatives. To avoid paying an arm and a leg for mobility devices, do not purchase straight from a distributor if you can help it. Instead, take a look at these more affordable ways of getting your mobility equipment:

Check Federal and State Grants

The US government offers Medicaid for adults. This is a federal and state program, actually the largest in the country, for low-income citizens. Aside from being designed for adults, children, and pregnant women, it also covers the elderly and individuals with disabilities. So, before you buy a stairlift or a wheelchair straight from a supplier, check first if you qualify for a government grant.

Since this program is both a federal and state initiative, the benefits differ from state to state. However, they are comprehensive. Mandatory benefits include home health services, inpatient hospital services, transportation to medical care, and more. Medicaid can certainly pay for a power wheelchair if you meet the coverage and eligibility requirements.

Those requirements vary in each state, so it is best to check with yours for the details. Generally, you must fall within the resource and income limits set by the government and be considered medically needy. If you are already receiving SSI (Supplemental Security Income), you are considered automatically eligible for this benefit.

Take note that a power wheelchair is covered by Medicaid if you have a medical need for it. In other words, you must obtain a prescription from your doctor stating exactly that. To apply for this government grant, visit the Medicaid agency in your state right away.

Approach Charities and Other Funding Assistance

Aside from government programs, you can also approach charity institutions or other funding establishments to help you with your assistive equipment needs. Each of these institutions has their own eligibility requirements. If you qualify, then you need not spend a cent on your mobility equipment.

Silver Cross, for example, provides funding assistance for mobility equipment in the US. You may want to contact them and other similar organizations. Look for grants for disability equipment in your city or state as well.

They’ll likely need you to fill up a bunch of paperwork and prove that you are eligible. Be prepared with documents from your physician or therapist as well. It is standard procedure for charities and any organization providing grants to require these as evidence of your need.

But once all of the paperwork and other eligibility processes are done, you can have your mobility equipment at no charge or for a very low price (if the grant covers only a percentage of the device’s dollar value).

Consider Mobility Equipment Rental

Renting mobility aids and other assistive devices is yet another great option if you wish to save money. This is especially useful if the need for the equipment is temporary or if you are expecting an easing of your finances in the near future. In short, there is no need to buy right now if you don’t have to.

Erica Sell grew up in Northern California. After attending Pepperdine University and graduating from UCSD, she decided to extend her passion for helping people in need into a successful business. She created Harmony Home Medical in 2008. Erica is a Certified Assistive Technology Professional (ATP) and Certified Aging in Place Specialist

Tuesday, 20 November 2018

A Time to Feel Grateful, Sometimes After Loss

My husband Jim and I are packing this morning - we've got an early morning flight tomorrow to Dayton, Ohio. Our daughter Natalie's boyfriend grew up there and we're all meeting at his family home to celebrate Thanksgiving. 

Sipping my coffee, I began to think of all things I'm grateful for this year. Mom died on August 16 and in lots of ways, I still can't believe she's gone. But I searched for gratitude in the last year of Mom's life and this is what I found: 

  • I feel grateful that just before Mom died, my sister and I went with her to a lovely hotel in a small town where her parents grew up and married. We reminisced about family history, explored pioneer gravestones (and found my great grandparents' markers)! We slept in the same room with views of the lake, a fire burning in the grate. 
  • I am grateful that Mom had wonderful carers in the last year of her life - they loved her and she loved them.
  • I feel grateful for my sister. Even though we've always been close, sometimes when life gets very busy, we take each other for granted. But we are hyper-aware of each other now, sharing our grief and our family memories. We've been holding hands a lot over the last few months. 
  • I feel grateful for my husband Jim and our new puppy Daisy. I love my life and the chance I have to walk outside in the forest - nature heals my heart and soul. 
  • I feel grateful for the love in our family, for our precious Nicholas and Natalie. I am grateful that Nick has been healthy and strong over the past year and that his carers love him. I feel grateful that our Natalie is thriving in her work and in her life with someone she loves very much. 
  • I feel grateful that I have the opportunity to reflect on my life and share with so many others who, like me, have a life with caregiving at its heart.
Most of all, I am grateful that over the years, I have learned some lessons of resilience. I have learned to feel deeply grateful, especially for the love in our family. I hope you feel the love of family, too. Happy Thanksgiving to all my American friends and family!