Friday, 16 November 2018


During this National Caregivers Month of 2018, it's important to hear directly from YOU, caregivers on the front lines of love and commitment. Here are some tips compiled by the information and support program, Embracing Carers.

How can you provide the best possible care for an aging parent or a loved one with a serious illness, while also making sure YOUR OWN health and stress don’t fall by the wayside?   This problem is increasingly prevalent as more of America’s workforce serves double duty as caregivers for aging parents, spouses, or children with special needs. In the United States, an estimated 65.7 million unpaid family caregivers provide care for someone who is ill, disabled, or aged. These caregivers spend an average of 24 hours per week providing unpaid family care, and 1 in 4 caregivers invest over 40 hours each week.

With that kind of schedule, who has time for self-care?

As a result, many family caregivers feel stretched for time and resources, so they sacrifice their own health in order to care for those who need it. They reduce or quit their exercise regimens, eat poorly, sleep irregularly, cancel their own doctors’ appointments, bottle up their feelings, and skip the social events that help them emotionally recharge.

To help caregivers better navigate these challenges, Embracing Carers™ asked dedicated caregivers from across the U.S. for their top self-care tips. Here is some advice they shared:

Dyan Alexander (Annapolis, MD)
“Realize that you cannot be all things to all people, and acknowledge that you should reach out for help when (and even before) you need it. Most importantly, don’t let guilt take seed. You are doing the absolute best you can, which is exactly what your loved one needs.” 

Dave DiBella (Pittsburgh, PA)
“Choose your battles. Being fitness and nutrition-minded, it was very difficult to not be concerned about my mother’s daily nutrition. But early into my full-time caregiving role, I realized that I wasn’t going to save my 92-year old mother from her inevitable passing by insisting that she eat more vegetables. Once I “let go,” it was really enjoyable to just ensure that she was getting foods and treats she really enjoyed. Obviously, everyone’s circumstances are different, but my advice would be to be more discerning about what really matters most.” — Dave cared for his mother around the clock in her final months of her battle with Alzheimer’s

Kristen Lasko (Washington, D.C.)
“Accept help (which can be hard to do)! As a caregiver, you will need the help of others. Even if you think others won't do something as well as you could, or it's something that you enjoy doing, sometimes you have to let others into your home, your to-do-list, and your life to help you to stay afloat.” — Kristen cares full-time for her son Max, who has Spinal Muscular Atrophy, a life-threatening genetic disease that renders Max unable to walk, eat, breath, or speak on his own.

Jackie Schwabe (Milwaukee, MN)
"Ask for help.  You are the best caregiver for your loved one, but you are not the only caregiver.  This is a marathon, not a sprint.  Ask for help so you can continue the journey." Jackie Schwabe

Jon Strum (Los Angeles, CA) 
"My one piece of advice is very similar to what you hear every time you listen to the pre-flight safety speech on a plane. "Make sure your own mask is secured, and then help the other person. In other words: Make sure you're taking care of the caregiver, so that you'll be there for your loved one." 

Dick Akers (The Villages, FL)
“Follow through on your dreams, even if it means a little extra planning.” — Dick serves as the primary caregiver for his wife Ellen, who was diagnosed with early-onset Alzheimer’s shortly after their retirement. Dick and Ellen recently took their “trip of a lifetime” together — a cruise through Europe — with help of dozens of caring and attentive airline and cruise ship employees, tour guides, and fellow passengers.

Eboni Green (Omaha, NE)
"Fill your cup! Recently the saying “you can’t serve from an empty cup” has taken on new meaning to me in my life as a caregiver. So that rather than my goal as a caregiver being to prevent from serving from an empty cup, I consider that my cup must be overflowing so that I serve from an overflowing cup. Now this may sound a little selfish, but my advice is to make sure your cup is overflowing before taking on anything additional. This way you avoid the likelihood that you will burn out. In this analogy the full cup represents the practice of self-care while caregiving. Ways that you may fill your cup might include doing the things that you love. For example, spending time with family, reading a book, taking a hot bath, and participating in work or a career that you find meaningful might fill your cup. The final takeaway is that you mustn’t commit to taking on any additional duties or task unless you have overflow from your cup that can now be dedicated to another interest. If your cup isn’t overflowing the answer to taking on any additional tasks must be “no” as your focus should go back to making sure you are spending time to do the things that fill your cup."

Cathy Clarke (Niles, IL)
 The one thing I have learned in this journey, is that if I didn't find a way to take care of myself and get the rest and time away, I was exhausted and not only unable to properly take care of him, but my work suffered as well. Even if you do not have an outside job, caregiving touches every aspect of your life, so the above still holds true. That is the #1 priority for caregivers - getting the proper rest for themselves and time away to recharge their batteries. I found it to be a very difficult thing to arrange, especially with few monetary resources and no help from government agencies at all. This is one of the challenges for those with resources that are scant, but just enough that is can still disqualify them because they are so close to the line; many fall through the cracks, like we did, and are left to cope alone. I wish this could be addressed, as the very poor can get help, but those who aren't quite poor enough cannot get anything at all, yet they have few resources of their own.

Launched in 2017, Embracing Carers is a global initiative led by Merck KGaA, Darmstadt, Germany, in collaboration with leading caregiver organizations around the world to increase awareness and discussion about the often-overlooked needs of caregivers. It is understood that caregivers play a crucial role in the lives of patients. What is less understood are caregivers’ needs for resources and support focused on improving their own health and well-being.  And while significant progress has been made in certain areas/geographies, serious gaps remain. Embracing Carers™ addresses this by highlighting the unmet needs of caregivers’ within the US and around the world; by empowering caregivers to advocate for their own health and wellbeing, and by driving a call to action for support of caregivers including support within healthcare systems.  

About EMD Serono
EMD Serono - the biopharmaceutical business of Merck KGaA, Darmstadt, Germany, in the U.S. and Canada – is engaged in the discovery, research and development of medicines for patients with difficult to treat diseases. The business is committed to transforming lives by developing and delivering meaningful solutions that help address the therapeutic and support needs of individual patients. Building on a proven legacy and deep expertise in neurology, fertility and endocrinology, EMD Serono is developing potential new oncology and immuno-oncology medicines while continuing to explore potential therapeutic options for diseases such as psoriasis, lupus and multiple sclerosis. Today, the business has approximately 1,300 employees around the country with commercial, clinical and research operations based in the company's home state of Massachusetts.

Monday, 12 November 2018


I was speaking with a friend today about fear in caregiving. The fear that we might forget something very important, the fear that dismissing a symptom now could provoke a crisis later, the fear that we are not good enough in the face of love and serious illness. 

As it happens, my friend is a doctor - someone who cares for very medically complex children. He is deeply empathetic and so needs to practice a discipline of self-awareness and self-compassion in order to avoid burnout. 

He said, "I have realized that much of the time, my discomfort and dis-ease comes from fear. Fear of concrete things and experiences in front of me and fear of imagined outcomes to imagined circumstances.  I have learned that to move along with a deeper sense of being grounded, I need courage.  I'm not sure the fear really goes away, but it now has a friend along in courage." 

Describing how he summons courage in caring, my friend explained, "I plant my feet, breath deeply and prepare with focus and intention to muster courage."

How many times have I mustered courage in the face of fear? Often, very often. And I know every caregiver does this very regularly - overcoming fear is an essential component of staying, of abiding with the suffering of our loved ones. We talk about the courage of patients afflicted by disease or disability. But we don't often talk about courage in caregiving - the kind of quiet bravery that enables us to dry the tears of a frightened parent or assess the pain of a non-speaking child with cerebral palsy. If we collapse, weeping, it is alone afterwards. We try our best to be strong and truthful with our loved ones. We act to provide comfort. And that takes courage in the face of fear.

Thursday, 1 November 2018


This year for National Caregivers Month, I want to reflect on why so many of us do not identify as caregivers. 'Caregiver' is a problematic word for lots of reasons, not least among them that it seems to betray the love and loyalty we feel towards those who need our help. The word amplifies the dependency and helplessness of our loved one - the very person whose dignity we are attempting to protect by minimizing the visibility of their needs. But if we want to build a society in which caring is valued and supported, perhaps the starting point is re-thinking the meaning of 'caregiver'. 

What does caregiving have to do with cooking? Just ask Rajiv Mehta, the founder and CEO of The Atlas of Caregiving, a care mapping tool that I champion in the new book that Dr. Zachary White and I have co-written (out on June 8, 2019) - The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver

Rajiv says that caring is like cooking. We all cook. But some people are professional cooks while others simply heat up pre-prepared food. There are home cooks and gourmet cooks. Our food preparation is influenced heavily by our culture, our memories and our family relationships. Caring is the same. It is an activity that we all participate in, one way or the other. Caring is part of life, not separate from it.

Today, on the first day of National Caregivers Month, I want to salute those caregivers who are immersed in caring - those passionate amateurs who have learned to be expert in both their technical care skills and in offering personal consolation and comfort. In 2018, let's remember Rajiv's call to think about caring like we think about cooking - a natural and nurturing part of everyday life. 

Tuesday, 30 October 2018

Three Little Words That Caregivers Long to Hear

My friend Julie Drury is the bereaved Mom of her beautiful daughter Kate who passed away after a long journey of illness and pain resulting from mitochondrial disease and the invasive efforts to cure it. 

The other day, Julie posted this message on Twitter: 

These days Julie chairs committees and speaks often at conferences relating to patient experience and health care transformation. I've been thinking so much lately about those three words in her tweet: I BELIEVE YOU. So often I needed to hear those words too, especially because Nick denies pain (he is afraid if he admits to not feeling well that he will end up in the ER). But all of us who are close to Nick know his particular signs and signals of pain or illness. We need others to believe us when we put up our hand for help. 

My Mom needed others to believe her too, when she had severe stomach pain. All the tests were normal and yet, Mom was doubled over, gasping for breath. "I believe you." That is what she needed to hear and often, I remember myself instinctively saying it. 

Validation of our caregiver experience is a central component of solace and healing. We need to be comforted in our darkest hours and hearing someone say, "I believe you" is one powerful way to ease our distress. 

Friday, 26 October 2018

What the Heck is Happening? I'm a Caregiver?

Caring for a dependent loved one is a chaotic business. There isn't much time for reflection, let alone laundry and grocery shopping. I'm always thinking, "If we can figure out a framework for planning our days, then maybe life would be a little easier." Some of those frameworks I've talked about before are Amartya Sen's Capability Approach (I used this approach in my book, The Four Walls of My Freedom to analyze what kind of help was helpful in our family) and the F-Words of Disability (a wellbeing framework designed for children with disabilities, but it works for anyone). 

Today I want to introduce an idea that I borrowed from the community development work of Cormac Russell and John McKnight at Nurture Development and the ABCD Institute, respectively. McKnight and Russell talk a lot about enabling marginalized communities to escape cycles of dependency by systematically supporting the sharing and talents and gifts of people in order to address their own challenges within neighbourhoods. The Asset Based Community Development movement developed the 'To, For, With, By' framework as a way of understanding how social services work in ways that are often oppressive. But today, I want to borrow this framework and think about it another way. 

As caregivers, we often do things 'TO' our loved one, especially in the case of cognitive impairment. Sometimes we dress our loved ones even when they don't want to get dressed or we guide them into a bath and shampoo their hair. Certainly in our family, I've given medications and tube feeds while our son didn't miss a beat watching his favourite show on TV. There are many things we need to do TO our loved ones and they need us to do to them. Sometimes these actions are negotiated - our son told me that he doesn't want to be consulted on his medications - he just wants whomever is helping him to get on with doing it 'invisibly'. 

And caregivers spend a lot of time doing things FOR our loved ones. "Here, let me do that for you": that's what we say when we see someone making an effort to reach a magazine or to put on a sock. It's an empathic reaction to assist when asked to help in one way or another. 

Then there are the times we perform chores or engage in activities WITH our loved ones. I loved to arrange flowers with my Mom and I love cooking with our son. I smile when I think of being absorbed in an activity that we enjoy together - these are the delicious moments of caring for someone who is loved. 

The hardest nut to crack though, is BY. In my caring life, what are the activities that I've helped my Mom and our son to do by themselves? How have I managed to help them achieve independence? Can I be doing this more and have I slipped too easily into doing TO and FOR instead of WITH AND BY? I'm going to think this over and seek opportunities to balance these aspects of caring. And I'm going to ask our son if he is happy with the balance. I'll report back on that conversation. 

Monday, 22 October 2018

Guess What De-Stresses Us and Increases Our Wellbeing All in One Go?


I've just finished co-writing a new book with Dr. Zachary White (of The Unprepared Caregiver Blog) - it's titled The Unexpected Journey of Caring: The Transformation of Loved One to Caregiver and it will be out June 8, 2019! In our book, I've included a chapter on pets - how being in the proximity of animals can reduce social isolation, give us happiness and even health benefits. If you are interested in how pets might enhance your caregiving life, have a look at this wonderful charity - Pet Partners.  And read this inspiring guest blog post by Michael O'Keefe of His original, extended article appeared HERE. - Donna

Isolation is a natural reaction to depression and grief. If you’re in the depths of depression, it can be hard to pick up the phone and call a friend. If you’ve lost of a loved one, lost your good health, or lost a relationship, you may pull inward and grieve alone.
But just because isolation is natural doesn’t mean it’s good for you. Isolation can create a spiral of despair. Depression and grief cause people to cut themselves off from friends and family, which in turn causes more depression and grief, and so on.
Talk therapy and medications are the standard treatments for these states of mind. Recent research, however, points to another way to help people escape that spiral. It’s been called the pet effect. Simply put, being around animals helps people feel less isolated, depressed, and grief-stricken.

The Pet Effect: It’s Real
Steven Feldman, the Executive Director of the Human Animal Bond Research Institute and a contributor to the website of the Anxiety & Depression Association of America, has written that 
Positive human-animal interaction is related to the changes in physiological variables both in humans and animals, including a reduction of subjective psychological stress (fear, anxiety) and an increase of oxytocin levels in the brain. Science demonstrates that these biological responses have measurable clinical effects.
In layman’s terms, people under stress feel better when there’s an animal around.
Some aspects of the pet effect are a mixture of the psychological and the physiological. The Human/Animal Pain Interaction Research Team at the University of Calgary is especially concerned with the question of how people with chronic pain benefit from being pet parents. Led by Eloise Carr, PhD and Jean E. Wallace, PhD, the team looks at the way physical pain, psychological anguish, and dog ownership interact with each other. Living with chronic pain often leads to depression, which in turn makes the experience of the physical pain more psychologically intolerable. But as Dr. Wallace says
Even if we can’t reduce the pain, if we can reduce depression and improve mental health, there are benefits in terms of looking at how you get up in the morning and want to do things. Some people we interviewed were suicidal; they were thinking about taking their own lives but what stopped them was having a dog and having to care for that creature. Having a dog is so central to giving them a meaning and purpose.
People who live in assisted care facilities also benefit from the pet effect. Dogs and other animals have become welcomed, regular visitors--and even residents--in nursing homes. This isn't surprising. Anyone who's ever taken a Golden Retriever into a nursing home or hospice knows what joy they bring to the residents there.

According to, there are three general types of pet therapy in elder care settings:

Visitation therapy, where animals (usually cats and dogs) visit nursing homes periodically
Animal-assisted therapy, where highly sensitive animals are paired with patients who require intensive rehabilitation; and
Ownership therapy, where residents take full charge of caring for a pet.

One nursing home study found that "dog-assisted therapy addressed some of the unmet needs of participants by providing meaningful activity, stimulation, pleasurable social interaction, and comfort through physical contact." As Jay P. Granat, PhD, a University of Michigan-trained psychotherapist, puts it
Dogs - and other pets - live very much in the here and now. They don't worry about tomorrow. And tomorrow can be very scary for an older person. By having an animal with that sense of now, it tends to rub off on people.

Animals on the Healer Team

Mood disorders, chronic pain, and grief are complicated and serious conditions. No one would seriously suggest that people should replace psychiatric, psychological, and medical treatment with puppies—or plants. Rather, treating these conditions is now recognized as a team effort. Doctors and counselors play a role, just as family members and friends do. But animals can be important team members as well.
Evolutionary biologists teach us that dogs evolved alongside humans. Over the course of hundreds of thousands of years, they became very good at reading human feelings. Their survival often depended on it. Today, that psychological understanding is helping people cope during dark episodes of their lives. Animals have earned their place alongside other healers. We shouldn’t hesitate to turn to them for help.

Sunday, 14 October 2018

I Told the Story of Our Son's Transition and Researchers Listened

There are some aspects about my caregiving experience that have been harder than others. Whenever I can, I like to share ideas about what would have made our family journey easier so others might have an easier time. One of those issues is the TRANSITION of children with disabilities from children's health to adult services. Our son had a rough transition and we weren't alone in the disability community when called his 18th birthday 'Falling Off the Cliff'. I am happy to say that he's doing really well now and so I began looking for ways to share our journey from chaos to support and wellbeing.

I got involved as a parent partner in research a couple of years ago as a board director at Kids Brain Health Network and it's fun and interesting! Last week, I attended the American Academy of Cerebral Palsy and Developmental Medicine annual meeting where I co-presented a research project with principal investigator Dr. Jan Willem Gorter (The Transition Doctor - that's his name on Twitter). He's the head of CanChild at McMaster U. and the brains behind an app called ReadyOrNot that youth with disabilities can use to learn about how adult medicine works, how to navigate it and to advocate for themselves. Of course they do all of this with the support of family! The ReadyOrNot transition app is part of a larger Canadian national networked research project called CHILD-BRIGHT - check it out! The app is still in development and will be evaluated in a clinical trial, but we want everyone to know about the project so that lots of youth will volunteer for the study and service providers will be more aware of the transition challenges that youth and families face.

I also presented with Dr. Gorter on a panel about models of support for youth with disabilities and their families who are transitioning to adulthood. Personal stories of lived experience help to bolster the research messages and research helps families advocate for a better health care experience in the community. 

Advocating as a research parent partner is fun, interesting and a great way to contribute to making the system better for families. If this interests you, ask your clinical providers (nurses, doctors) about any current opportunities to participate in research projects that relate to the condition of your loved one. There is usually an honorarium paid to research participants and out-of-pocket expenses are always reimbursed if any travel is required.