Tuesday, 18 April 2017

The Unfairness of Caregiving

I've been trying to remember the first time I felt the outrage of injustice. I recall that in about grade four, I was playing outside my school when the bell rang to announce the end of recess. It was winter and the snow was piled up high beside the school. Unbeknownst to me, there were basement windows behind the snowbank and the day before when I'd been away sick, a note had gone home with all the students warning all students to keep away from the snowy barricades in case a shift in the weight of them smashed the hidden windows. Being unaware of the all-school directive, I decided that the snowbank was the perfect place to play 'King of the castle' and of course, I was the King.

The bell rang and along with a couple of my friends, I was called to the principal's office. I had no idea what I'd done wrong, but I knew I was in trouble. It was inconceivable to me that I should be treated like a common grade-school criminal. I was innocent! I decided to try distraction combined with a firm assumption of the moral high ground. I asked the principal if, by any chance, he knew the time. This was a mistake. Far from making him realize that he had the wrong girl, he got really angry and gave me a double detention. I was furious.

I've always been outraged by unfairness. I can't shrug it off. So I've been wondering about injustice in my own life experience. Most of the big injustices in our family haven't happened to me - they've happened to others who have developed care needs because of stroke (my Dad), disability (our son Nick) or age (my Mom). I've had to come to grips with the unfairness of illness and disability and sometimes it's been hard. But I realized that railing against the frightful injustice of what IS doesn't make anything better.

Have I experienced unfairness in caregiving? Of course. I think every caregiver does. And the biggest unfairness is the absence of personal choice when everything in our society tells us that we should have the right to choose how we spend our time and our money. We should be able to do what we want when we want, at least some of the time. But often in caregiving, we don't have that option and it feels very, very unfair.

I've worked hard at understanding my life in a way that makes me feel happy and fulfilled. But I don't underestimate the sense of unfairness that I've experienced and I know others experience it too. Caregiving is unfair because it's tied up with loss. But sometimes loss is just 'what is' no matter how painful and we have to accept it in order to understand that our family life and our role in it both have great value.

I think outrage is the appropriate response to injustice and unfairness. Where would we be without activists or advocates to make the world a better, kinder place? But caregivers who are in it for the long haul have to curate their unfairnesses carefully. We need to pick winnable battles.

That said, I hope that by some miracle of technology, my old school principal is reading this and is now sorry for giving me that double detention.

Friday, 14 April 2017

The Surprising Things I Learned About My Mom When She Moved

It seems like my Mom has been moving for months. It feels like over the past while, my sister and I have been operating in semi-crisis mode with our mother. She moved out of her apartment a few weeks ago, but we didn't know if her new residence would be a good fit. So yesterday was the day that the van actually arrived at Mom's old apartment to move Mom's chosen furniture, favourite paintings and boxes of essentials. My sister and I filled our cars with everything that might be useful at the cottage and our husbands lugged boxes of old Christmas cards and broken lamps ("they might be fixed one day!") to the dumpster in the parking lot outside.

For the last few years, Mom hasn't eaten well and she's become more frail. Finally, the decision was made to relocate her to assisted living and luckily, we found a small home (18 residents) nearby in a lovely location on the water, in a wooded park. Mom actually began living at her new residence a few weeks ago, but we just moved everything out of her old place yesterday. Mom's new residence is a large Victorian house with big balconies, front and back. It's at the end of an historic village row of shops, now popular with tourists. But it's more than just the view that makes this a great move for Mom. It's the wonderful staff.

Three days ago Mom had a breathing emergency - the paramedics were called and she spent the night in hospital having tests and receiving oxygen therapy. When she came back to the residence, all her helpers gathered by Mom's bed. "We missed you!" said the director, giving Mom a gentle hug. "Nonsense", Mom stated in her usual, very direct manner. "We did so! I mean, there's only one of you! And thank God for that!", countered the director. Everyone, Mom included, burst out laughing. Then we wiped tears of love and laughter from our cheeks and began again to discuss the details of furniture arranging in Mom's room.

Packing up boxes of memories in Mom's apartment was a revelation. I discovered so many things about my mother that I had never known before. I didn't know that she kept diaries of her travels, for example! I was delighted to discover that Mom noted all kinds of details of her trip to visit us in Moscow in 1978 during our first diplomatic posting there. Memories of her visit flooded back. And I found all the letters that I had written to her from our time in Moscow, London and Washington DC. My Mom even kept a 'good box' of praiseworthy art that my sister and I did in elementary school.

My life growing up in our family with my Mom (who was often a mystery to me as most mothers are to their children) was revealed with love, flaws and secrets in all the objects and papers that Mom saved. Now my sister and I will treasure these things and we will keep them for our children to discover again when we move to assisted living.

Monday, 10 April 2017


Here's a scenario that every caregiver will recognise: Your elderly parent has fallen and you've left work to be with her at the ER. Tests will be performed including x-rays and it will be a few hours before a diagnosis is made. A paid caregiver for your parent is due at home in an hour and you need to cancel that shift.  You need to arrange for someone to pick your 10 year old up from school and your older teen will have to be alerted to make supper at home. The doctor diagnoses a bad sprain, prescribes a boot/cast, painkillers and physiotherapy. Suddenly, the care plan for your loved one has changed in ways that effect you, your family and your loved one's paid caregivers. A feeling of dread descends on you because you know that it will be impossible to keep up at work and at home if you spend hours communicating the roles and responsibilities of a changed regime to all concerned. Disaster looms because messages won't get through and mistakes will be made. How is it possible to communicate complex messages about care to so many people who need to know?

The only tool that I know of to enable private, highly secure communications between home and health care professionals is Tyze Personal Networks in Canada or Community Tyze in the US. There are some similar tools available for patients in particular hospitals, but most care communication online tools do not have the data security to enable the self-storage and secure sharing of medical and financial records or wills. A bank-grade level of online security is required for that degree of privacy. Tyze has that level and it's owned by Saint Elizabeth Health Care, a highly respected provider in North America. The Health Insurance Portability and Accountability Act (HIPAA) sets the standard for protecting sensitive patient data. Tyze Personal Networks and Community Tyze are both HIPAA compliant. They are patient/family directed and password enabled.

The devil, as they say, is in the details. One of the main barriers to effective communication for caregivers, their families and their paid home helpers is that communication often occurs between just two people and key messages must be passed to others on the team. It's not always clear who has this responsibility to communicate things like treatment directives or appointment times. Some people prefer texting, while others use only email. Privacy is often cited as a reason for gate-keeping communications, and sometimes this is a reasonable stance. But other times, a network of care that crosses sectors between home and health care systems needs to occur for the sake of patient safety and caregiver sanity. In the Tyze network site that we use for our son Nicholas, we communicate with all his paid carers using the agenda, files, and carewall (looks and functions similar to a Facebook page). But Nick's physician only communicates using Tyze private messaging with the head nurse. We decided at the outset how we wanted to manage communicating based on the need to know and how individuals wanted to receive alerts about new Tyze activity in their email inboxes.

If you need a secure, online care coordination tool that enables the patient and family caregivers to speak with health care providers in a secure environment, consider Tyze. Ask your disease association, your outpatient center or your community support worker to inquire about a group package for patients in your area. In the USA, contact Mary Bryant at MaryBryant@saintelizabeth.com and in Canada, contact Mary Lou Ackerman at MaryLouAckerman@saintelizabeth.com.

For more about how Tyze works, watch this video.

Thursday, 6 April 2017


I love this guest post by Leandro Mueller because it reminds me to think of my own retirement together with my Mom's. We all need to re-conceptualize aging in order to embed meaning and purpose in our lives whether we're 60 or 90 years old.

As a way to commemorate National Retirement Planning Week, caregivers can help their recipients see the golden years through a different and more positive perspective. And in line with this year’s theme, “Rethink Retirement,” we’re sharing some helpful ways to connect, bridge, and celebrate the many wonders that proper retirement (planning) brings.

Chasing Dreams

Retirement isn’t the end. In fact, it’s the start of something wonderful, if one does take the right steps to prepare for it. Caregivers can remind their recipients of the many opportunities and dreams to accomplish during the golden years. Let’s take, for example, traveling. As the top dream that workers want to realize during the twilight years, caregivers can help their loved ones make this goal a reality. Or, how about learning or mastering a new skill or craft? Whatever the dream is, caregivers can help lighten the often tumultuous feeling of retirement by reminding (better yet, making it happen) loved ones of their chance to make these goals into reality.

Being the Best Version of Yourself

The golden years can also be seen as a period when one can truly be the person they’ve always desired to be. As like we’ve mentioned in passing above, retirement can be the time for one to learn or do what they’ve always wanted to achieve. Also, this period can also be focused on health; for one’s wellbeing, when prioritized, also means making the most of every moment that retirement has to offer. Caregivers making the push towards a recipient’s ideal self can also benefit– seeing and experiencing a loved one with a drive to positively transform will help caregivers realize that his or her calling is definitely a one full of passion and rewards.

A Time to Reconnect and Build Bridges

Lastly, viewing retirement as a time to foster, repair, and create new relationships is an excellent way to spend the years. Retirees can take advantage of this time by seeing what matters the most in life: people. Caregivers, also, can reap the many rewards of being with a recipient with a “relationships-first” mindset – loved ones may see how significant and crucial caregivers are in their lives, and may very well recognize them for everything they’ve (and are still continuing) done! Similar to what Donna wrote previously, “Message for National Caregiver Day: I See You, I Salute You,” the love exuded from seeing the importance of other people is grand and should always be promoted.
Retirement is truly not the end – it is a time to celebrate the many wonders of life. For caregivers and their loved ones alike, making the necessary shifts in perspective can both help in planning and the actual retirement phase. Why settle for less and wallow in regret, when there is so much to see and be blessed for during the golden years?
Also, please leave a comment below if you have other ways or suggestions on how caregivers and retirees can see the golden years in a different light. We hope that everyone gets to see the beauty of retirement – we wish everyone the best.
Author Bio:
As the Online Content Director of FreeMedSuppQuotes.com, Leandro Mueller aims to push for awareness and promotion of the many benefits of Medigap insurance plans in the market. He hopes that his work will help boomers and retirement industry experts alike in their lives. Additionally, he hopes that more people will inquire more on what is Medicare supplemental insurance all about, for a more practical and better way to secure the golden years.


Monday, 3 April 2017


The first Tuesday in April is National Caregiver Day. It's a day to stand up and pay special attention to YOU who care for someone you love. Or YOU whose job it is to care for others with kindness and compassion.

I salute you for waking early to prepare a special diet breakfast.

I salute you for calling the pharmacy to re-order medications after you've walked the dog, swept the floor and filled out forms for insurance claims.

I salute you for researching new symptoms while you eat leftovers for lunch.

I salute you for interrupting your lunch to answer the call of your loved one who needs an extra blanket for warmth and comfort.

I salute you for drying the tears of your loved one and telling old family stories to distract from sadness and pain.

I salute you for calling the doctor to change an appointment time that conflicts with another specialist.

I salute you for finishing the third load of laundry before 10am.

I salute for reading an article about self-care and wondering how to fit that in to the day.

I salute you for grocery shopping for healthy food including the ingredients for a special diet.

I salute you for loading the wheelchair and the groceries into the car after you've helped your loved one into the passenger seat.

I salute you for taking your loved one to visit a day program even though there are no available spaces.

I salute you for preparing two dinners - one for your loved one and one for the rest of the family.

I salute you for wiping your loved one's chin before anyone else sees the crumbs.

I salute you for waking often in the night to check on your loved one or give medications.

I salute you for your kindness, compassion and creative problem-solving today and every day of the year even though you are tired and sometimes sad to the point of desperation.

I salute you for the love you show every day towards others. And I salute you for the joy you find in caring and for the sacrifices you make to keep going. Happy National Caregivers Day, April 4, 2017!

Thursday, 23 March 2017


I receive lots of requests to post about care-related projects, companies or products. Sometimes a request comes in that I just LOVE and this is one of those.

Dining With Dysphagia is a cookbook with a difference. All the recipes are designed to entice the palates of anyone who has difficulty chewing or swallowing (the medical term is Dysphagia).

Three of the reasons that I especially love this online cookbook are that 1) our son Nicholas has dysphagia and is mostly tube fed, but he eats for pleasure, 2) I love to cook and 3) best of all, the book is a free download! The added bonus is that the recipes look delicious for anyone. That means the whole family can dine together and enjoy food, safely.

The authors of this book are students in the NYU's Online Master of Science Program in Speech-Language Pathology.  And this is what they say about their project:
Food is something that everyone should be able to enjoy.

So when it comes to food that is both appetizing and accessible, good eating shouldn't be limited to highbrow foodies. This was the premise for the NYU Steinhardt Iron Chef Dysphagia Challenge, a competition during which contestants prepared food for judges to identify recipes that maximize nutrition, texture, and taste for people with dysphagia (chewing and swallowing difficulties). The event was inspired by an intersession class that brought together NYU graduate students from the nutrition program and the communicative sciences and disorders program to learn how to manage the needs of clients with different stages of dysphagia.

"Food is nurturing, and too often it's assumed that when someone is sick, we should just give them calories and nutrients. That's not what food is, and we wanted to emphasize in this intersession class that regardless of a medical condition, we should always think about the importance of food – especially when someone's sick," says Lisa Sasson, clinical associate professor in the Department of Nutrition, Food Studies, and Public Health at NYU Steinhardt.
Now, "Dining with Dysphagia: A Cookbook" makes the winning recipes from the Dysphagia Challenge competition accessible to all. The recipe book outlines eight easy-to-follow and easy-to-swallow recipes.

While the recipes were evaluated for the overall joy of eating good food, the judges also took into consideration that dysphagia clients come from different cultural backgrounds. Diversity in ingredients and balanced tastes should be enjoyed by everyone — even those with chewing and swallowing difficulties.

Each year, the simple act of eating becomes a serious challenge for millions. Older adults are disproportionately affected, but dysphagia can become a challenge to just about anyone, including those with diseases such as Parkinson's, head and neck cancers, AIDS, and many more. Caregivers, hospitals, and families caring for those with dysphagia prepare pureed foods in order to meet nutritional and medical needs. Unfortunately, they all too often find that the food is unappetizing and doesn't take into account cultural food preferences. Likewise, a minimal focus is placed on aesthetics; these foods are often presented as "mushy."
"Food should always nourish the body and soul," continues Sasson, and "we should never assume that because a patient has swallowing problems that their food choices will be limited to pureed mush."

Saturday, 18 March 2017

3 Joyous Ways to Celebrate Ourselves and Our Moms

Thank goodness for technology! Yesterday I was able to chat from my front porch in Cat Island, Bahamas, with a new friend who lives in rural Wales. Francesca Cassini is the founder of the Silver Tent, 'An Online Community for Wise, Wild Women Over 50'. We talked about what we (older women) have learned in our lives, what we've achieved and what we dream to do in the future. Francesca's idea is that together, we can support one another to find meaning and purpose in our lives as we learn from wise elders. The Silver Tent is a tangible way to celebrate the lived experience of older women and help us to nurture intentionality in our lives. I said this to Francesca: Much of what we know as women comes from our caring. Love is at the heart of our families, our friendships and our passion for creating work-around solutions to any manner of challenges. The Silver Tent has a free online summit coming up on April 22-30. If you are housebound with your Mom, listening to the range of fascinating speakers will be fun to do together! I registered and I hope to 'see' you there!

"You’ll find a rainbow of resources in the Silver Tent community to support you in making this phase of your life the most meaningful, the most powerful and the most celebratory." Francesca Cassini

Another terrific resource celebrating the contributions of older women is the UK based Gransnet. There's a wealth of information on every topic you can imagine relating to being a Grandma. Plus, there's an active forum with many topics of interest - check it out! Interestingly, my friend Geraldine Bedell created Gransnet after working as a content editor at Momsnet. She recognized that 'Grans' or older women had a contribution to make together with opinions to be heard. We will speak and we will support one another! Many of us are over 50 and looking after our own elderly parents. I'm one who fits into that category. This is a great site to peruse together with an elder parent.

Another group of senior women who are bubbling over with purpose is The Stephen Lewis Grandmother Campaign. One quick look at this organization will tell you that members helping 'sisters' in Africa are bonding with shared purpose and they're having a great time getting to know each other and their counterparts in the developing world. We ALL have much to learn from one another.

These are three associations that we can participate in with our elder Moms. Together, we can find shared purpose and meaning in our caregiving experiences, our wisdom and our womanhood.