SUPPORT FOR WORKING CAREGIVERS? NOW THERE'S A WAY - SPREAD THE WORD!

Trying to balance work while caregiving for a family member or friend can feel frantic and impossible. It's exhausting to prop up a fiction that we "should" be able to manage everything, all at once, by ourselves. But now, there is hope that workplaces everywhere will embed caregiver support that will draw and retain talented employees who also have care responsibilities. Both the evidence and the employer training are here! 

Over the past year or so, I have been working with a team at McMaster University to develop a new, free online course for employers who seek to attract and retain workers who have care responsibilities at home. And now, CREATING CAREGIVER-FRIENDLY WORKPLACES is open for registration! Tell your friends, your family members and everyone who has a stake in making workplaces caregiver-friendly!

The case for making it easier for employees to balance work and care isn't only about caregiver wellbeing (although that's important too, of course). There is a sound economic argument for businesses to engineer this culture shift: 

• Over 60% of caregiver-employees are caring for their parents, or their parents-in-law
• 41.5% of caregiver-employees are between the ages of 45-65, representing the most experienced in the labour market
• 6.2% of caregivers are sandwiched between child rearing and caregiving, in addition to their paid work responsibilities.

So what can employers (Human Resources managers and other business leaders) learn in this course? They will discover a step-by-step approach to creating a system of flexible supports that meet the needs of their caregiver employees. For example, how to create: 

• Support services, such as counselling, support groups and skills training
• Flexible work arrangements, such as: working from home and job sharing
• Strategies which support employees, such as: culture change initiatives and educational workshops
• Paid or unpaid leave, such as: sick days/leave and family medical/compassionate care leave
• Financial and other forms of assistance, such as: employee assistance plans (EAPs) and insurance coverage

Depending on the size of the business, employers can put their course learning into implementing a Canadian Standard for Caregiving Workplaces (see the links below), or they can pick and choose whatever strategies work for their individual circumstances. The point is, both workplaces and families are healthier and more sustainable with caregiver support. 

To access the Standard Carer-Inclusive and Accommodating Organizations, follow this link: CSA B701:17 (R2021). From the link choose View Access. You will be required to register to view the Standard, however, the login is free to viewers in Canada. Once you have created an account, you will be allowed to download the Standard.

To access the Helping worker-carers in your organization Handbook (CSA B701HB-18) follow this link: CSA B701HB-18. From the link, follow the same instructions as provided for the Standard.

The time for a change in the way that we work and live is now. Let's start by encouraging all managers everywhere to consider how they can shift workplace culture to accommodate the real, caring lives of employees. A great place to start is by learning how in this free course: Creating Caregiver-Friendly Workplaces AND participants receive a McMaster Continuing Education microcredential. It's a win/win for all.  

Resources: This course is based on the research of Dr. Allison Williams at McMaster University. Her terrific webpage of resources for both employers and caregiver employees can be found HERE. 

The Twelve Days of a Caregiver Christmas

 

This is a reprise of a Christmas post from 2017. Hasn't the world changed since then?! Then again, time moves more slowly in caregiving. Merry Christmas, everyone! And may we all stay safe and healthy in 2023. 

My words to the carol "The Twelve Days of Christmas" are fun, but they reveal a truth about caregiving, too. We all begin with a task or two. "Oh, it's not much", we think. "That's no trouble at all." And it isn't. But then two tasks becomes four and four becomes eight, and so on. Soon, we discover that we are very, very tired. But nevertheless, we persevere. So here's to all of you in celebration of the loving care you provide every day of the year.

On the First Day of Christmas on my list of things to do: I cooked dinner for my fa-mi-ly.

On the Second Day of Christmas on my list of things to do: I shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Third Day of Christmas on my list of things to do: I called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Fourth Day of Christmas on my list of things to do, I picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Fifth Day of Christmas on my list of things to do, we went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Sixth Day of Christmas on my list of things to do, I did six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Seventh Day of Christmas on my list of things to do, I bought seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Eighth Day of Christmas on my list of things to do, I disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Ninth Day of Christmas on my list of things to do, I ordered the meds, disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Tenth Day of Christmas on my list of things to do, I calmed jangled nerves, ordered the meds, disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Eleventh Day of Christmas on my list of things to do, I wrapped all the presents, calmed jangled nerves, ordered the meds, disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Twelfth Day of Christmas on my list of things to do, I poured myself a drink, calmed jangled nerves, ordered the meds, disinfected bathrooms, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

HAPPY HOLIDAYS, EVERYONE!

From me and my family to you and all of your loved ones, I wish you a very Merry Christmas and Happy Hanukkah this holiday season. May 2023 be a good year for all of us! xox

FOR THE ONE WHO IS EXHAUSTED, A BLESSING

FOR THE ONE WHO IS EXHAUSTED, A BLESSING

I'm not gonna lie to you - I am exhausted. Not just tired, but a 'Covid' kind of dispirited lethargic kind of tired. It comes not just from giving care, but from monotony and loneliness. I feel a heaviness and absence of inspiration that usually gives me energy to write, to cook, to hike and to read. 

I am betting that a lot of us feel this way. So, I have decided to find things that inspire me back to my old self - to 'snap out of it' and find beauty in life again. My last post about a walk on the Camino di Santiago was a nod to this urge. But now the urge has transformed into intention. This morning I've decided to find words or images that  'bring me back to myself' and to share them with you here in The Caregivers' Living Room. As it happens, a friend who is a priest in the Church of England and a poet himself, Mark Oakley, posted this gorgeous blessing by the late Irish Catholic poet John O'Donohue on facebook last night. It is just the medicine that we all need. Let every reader  "Return to yourself, having learned a new respect for your heart and the joy that dwells far within slow time."

 

For The One Who is Exhausted, A Blessing 

by John O'Donohue

When the rhythm of the heart becomes hectic,

Time takes on the strain until it breaks;

Then all the unattended stress falls in

On the mind, like an endless, increasing weight.

The light in the mind becomes dim.

Things you could take in your stride before

Now become laborsome events of will.

Weariness invades your spirit. 

Gravity begins falling inside you.

Dragging down every bone.

The tide you never valued has gone out.

And you are marooned on unsure ground.

Something within you has closed down;

And you cannot push yourself back to life.

You have been forced to enter empty time.

The desire that drove you has relinquished.

There is nothing else to do now but rest.

And patiently learn to receive the self

You have forsaken in the race of days.

At first your thinking will darken

And sadness take over like listless weather.

The flow of unwept tears will frighten you.

You have traveled too fast over false ground;

Now your soul has come to take you back.

Take refuge in your senses, open up

To all the small miracles you rushed through.

Become inclined to watch the way of rain 

When it falls slow and free.

Imitate the habit of twilight;

Taking time to open the well of colour

That fostered the brightness of day.

Draw alongside the silence of stone

Until its calmness can claim you.

Be excessively gentle with yourself.

Stay clear of those vexed in spirit.

Learn to linger around someone of ease

Who feels they have all the time in the world.

Gradually, you will return to yourself,

Having learned a new respect for your heart

And the joy that dwells far within slow time.

The Natural Tribalism in Disability Parenting

A truth about disability parenting was revealed to me in two recent conversations. 

The first conversation was with an acquaintance - someone I don't see very often, but whom I care about very much. Like me, she's the mother of an adult child with disabilities but unlike me, she has had little support over the years. In combination with her own serious health concerns, my friend's path has not been an easy one. 

Yesterday we met and had a long chat. Tears were shed, hugs were freely given. We shared stories of the challenges and transitions we and our kids have experienced over the past year.

Today I met another friend who I don't see more than a couple of times a year. She too is the mother of a young man with disabilities who thrives with some support in the community. Her son has a meaningful, rich life and so does my friend, his mother. Today I mentioned that I'd run into the other Mom yesterday whom I assumed was a mutual friend, because we all live in the same community. It turned out that my friend today didn't know my other friend from yesterday's chat. But there was something else. 

I felt the difference between parents of severe disabilities and parents of children with more mild impairments. My friend who is the Mom of a son with milder challenges is one of the kindest people I know. She exudes natural healing and concern for others. It wasn't that she wasn't concerned for my other friend. She just didn't feel the kinship that I do. 

I recall writing a blog entry a couple of years ago titled For The Secret Club of Extreme Parenting and the opening paragraph read like this:
There is a secret club amongst caregivers.  Sometimes the experience of caregiving is so extreme, painful, dangerous and exhausting that it cannot easily be described to 'normal' friends and family.  And when that extreme experience constitutes family life over time.... years, even.... that is when caregivers become secretive.  They give up on explaining their lives. 

I was reminded today that there are tribes within tribes of caregiving. The extreme end of the caring spectrum is so different, so inexplicable that it's nearly impossible for anyone to comprehend it who is a stranger to it. But I also realized that's OK. We have each other and we belong to many tribes. I was also reminded that caring for someone with severe disabilities is very different from caring for someone whose needs are less apparent. And all of us on some days, just want to be called just kids and Moms, me included!  

HELP FOR ALZHEIMER'S CAREGIVERS

I am pleased to host this guest post by Lydia Chan, whose Mom suffers from Alzheimer's. Lydia writes for Alzheimerscaregiver.net.

The data is in, and there’s no doubt that Alzheimer’s caregivers are exhausted. The University of Michigan and AARP recently teamed up to survey the people who are providing full time care to loved ones with this crippling disease.

The results are a little horrifying. You might expect that caregivers would find their jobs in jeopardy. But it turns out they also ignore their own health. Of caregivers surveyed, 20 percent said their health was poor or only fair. And 7 percent of them said they had neglected or ignored their mental health.

Further, most family caregivers are around the same age as their patients, who are likely to be spouses or siblings in their 60s or older. In this scenario, both caregiver and patient are at risk.

While the vast majority of caregivers reported a certain satisfaction, even joy, in their unpaid work, they also reported a high level of stress. It turns out that the phrase “You deserve a break today” applies more to caregivers than to anyone else. But how do you get that needed break? Read on.

Uncover resources

There are a number of resources for caregivers, but far too few caregivers are taking advantage of them. Online and in person support groups for caregivers offer a great deal of experience and advice for dealing with the financial and legal aspects of caring for an Alzheimer’s patient. These groups also offer a wealth of ideas about how to take a time out.

The National Association of Area Agencies on Aging (n4a) also helps you look up services close to you. And the AARP has developed an interactive caregiver tool that refers you to solutions.

If you are a churchgoer, don’t be too proud to ask your church for help. The best kind of help you need is someone who doesn’t mind doing whatever is needed: unloading the dishwasher, dressing your patient, and walking the dog, for instance. Churches are so good with this kind of thing, you might consider joining one if you don’t already belong.

Make a dog part of the picture

One of the best ways to decompress is to spend time with your dog. And dogs are virtual miracle workers. Just snuggling with one can lower stress, blood pressure, and improve heart health. Among some demographics, dog ownership even keeps the demons of depression at bay.

For caregivers, the value of a dog is all the greater. If you already have a dog, cherish her. If your dog is particularly patient and gentle, you can also make her part of your loved one’s therapy. Even severely disabled people brighten at the sight of a dog and they get a rush from petting one.

Alzheimer’s patients are eligible for therapy dogs. And, in fact, dogs trained to accompany Alzheimer’s patients can do amazing things for patients in early and mid-stage Alzheimer’s.

These dogs learn to take the patient home when he gets lost and track him if he wanders out of the house. Alzheimer’s working dogs are equipped with GPS, and they will stay with their patient until rescued, so a family member can always locate a loved one who has wandered too far.

A dog, in short, may be good therapy for both you and your patient. Walking a dog is one of life’s great pleasures, but as a caregiver, you won’t always have time, so have a dog walker on call to help you with one of your many obligations.

This month, which is National Alzheimer's Disease Awareness and National Family Caregivers Month, we celebrate the unsung heroes of our generation: Those who have taken on the unglamorous and difficult work of caring for someone with cognitive failure. We honor them and, at the same time, we declare they should take some time off for themselves.

Photo courtesy of Pixabay.

PS: Don't forget my latest Twitter challenge to all my readers (those of you who use Twitter, of course!) - Answer the question "If you had the chance to tell the world one thing about caregiving, what would it be?" and don't forget to add the hashtag, #My1CaregiverTweet. If you're NOT on Twitter head on over to The Caregivers' Living Facebook Page and post your answer there. I'll post it on Twitter for you - let's tell the world about the real realities of giving care! 

-->

CAREGIVER'S FRIEND: Menu and Recipes

I love food and I love to cook. When caregiving at home gets crazy busy though, my favorite recipes are just too time consuming to prepare. That's when I go to my 'under 5 minutes preparation time but delicious' collection.

Here's a sample menu that's very quick to make and so delicious that even the pickiest eaters in your family will love it.

CHICKEN A LA DA SUN

4 Boneless Chicken Breasts or 2 double sided breasts -  cut up into biggish pieces - OR works great with tofu if you are vegetarian
2 onions (peeled and chopped into 1/4s or 1/8s)
1 purple onion (peeled, cut up) *if you have it, if not, forget it and throw in an extra reg. onion
1/2 package of soft, unripened goat cheese, broken up (if very soft, pop it into the freezer for a few minutes and then break it up)
Sweet chili-garlic sauce (approx 1/2 bottle)
Cilantro for decoration and flavor, if you like it.

1. Drizzle a bit of sweet chili sauce on the bottom of the pan. Add chicken, onions and rest of chili sauce.
2. Crumble goat cheese over top
3. Bake at 350 degrees for approx 40 min. Garnish with fresh cilantro

Service with Rice (I find the Uncle Ben's microwave instant rice-in-a-bag is the handiest) and a green salad.

OR if you don't like the sounds of that recipe, try this one:

ZESTY CHICKEN OREGANO

2 1/2 - 3 pound chicken cut up or same amount in breasts or thighs
1/2 cup olive or vegetable oil
1/4 lemon juice
2 tsp dried oregano leaves
1 tsp salt
1/2 tsp pepper
1 clove garlic, chopped
Lemon slices to garnish

Place chicken pieces in an oblong baking pan. Mix remaining ingredients except lemon slices; pour over chicken. Cook uncovered in 375 oven, spooning mixture over chicken occasionally, 30 minutes. Turn chicken and cook 30 min more or until chicken is cooked through in thickest parts. Garnish with fresh lemon slices.

Serve with couscous (who doesn't love to boil water, add couscous and 3 minutes later, it's ready?!)
And a green salad - I like arugula mixed with dried cranberries and maybe some salted shelled sunflower seeds. But any old salad will do!)

And for dessert:

APPLE TORTE

1 egg
3/4 cup white sugar
3/4 cup or so of sliced apples (about 2)
1 tsp baking powder
1/2 cup flour
pinch salt

In a bowl, mix egg with a fork together with sugar. Add all other ingredients and pour into a greased, small pie pan (about 6"). Bake at 350 till golden brown.
*Double recipe for larger, regular size pan.

OR

QUICK BROWNIES

1/2 cup butter melted in microwave
Add
2 heaping dessert spoons of cocoa powder
1 cup of sugar
2 eggs
1 tsp vanilla
3/4 cup flour
and some chopped nuts if you like.

Mix before and after adding flour. BAKE 350 for about 1/2 hour in greased 8" pan.

Enjoy!

The Caregiver's Christmas Carol

On the First Day of Christmas on my list of things to do: I cooked dinner for my fa-mi-ly.

On the Second Day of Christmas on my list of things to do: I shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Third Day of Christmas on my list of things to do: I called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Fourth Day of Christmas on my list of things to do, I picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Fifth Day of Christmas on my list of things to do, we went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Sixth Day of Christmas on my list of things to do, I did six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Seventh Day of Christmas on my list of things to do, I bought seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Eighth Day of Christmas on my list of things to do, I cleaned up vomit, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Ninth Day of Christmas on my list of things to do, I ordered the meds, cleaned up vomit, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Tenth Day of Christmas on my list of things to do, I calmed jangled nerves, ordered the meds, cleaned up vomit, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Eleventh Day of Christmas on my list of things to do, I wrapped all the presents, calmed jangled nerves, ordered the meds, cleaned up vomit, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

On the Twelfth Day of Christmas, I poured myself a drink, calmed jangled nerves, ordered the meds, cleaned up vomit, seven gifts for nurses, six loads of laundry, went to E-merg! ... picked up meds, called the doc, shopped for my Mom and cooked dinner for my fa-mi-ly.

Merry Christmas and Happy Hanukkah to all my fellow caregivers!  I hope this version of the 12 Days of Christmas becomes a standard in your home during the holidays :) . Lots of love from me to you!

National Caregivers Month: The Third Pillar is Patience

Patience. We learn it the hard way in caregiving. In this break-neck-speed society, caregivers are like student drivers, always trying to put our foot on the gas, but with 'fate', the driving instructor, firmly putting his foot on the metaphorical brake. 

Caring for young children, an elderly parent, a loved one with disabilities, or someone dear with illness - all these situations call for slowing down, putting our worldly concerns on hold and being patient. We are patient when our loved ones eat slowly at mealtimes, we are patient waiting for their test results or for insurance settlements.  The urge to scream at the different paces of competing needs is real in every caregiver's life. 

But patience always wins, because it must. Aging, infirmity, living with illness or disability - all of these ways of getting through the day whether you are giving or receiving care - all of these take time.  More time than we are used to devoting to tasks such as getting dressed or having a bath.

And palliative caregivers know only too well that it requires time and patience to die. And yet when that frustrating slowness suddenly halts and the life of a dearly loved one ends.... this is how one caregiver expressed her feelings in an online support forum:

I lost my Dad on Sunday night. He was so sick for so long but in the end he died within 5 minutes. After almost six years of taking care of him and seeing him every day I can't believe I am finally out of a job. Never thought I would miss the burden of caregiving but I feel lost without him as my daily anchor. For those who are still in the midst of it, I hope you can find some small joy before it's over. The other side of it seems even tougher. 💕

Learning to be patient is connected to learning to love in the form of compassionate action that we call caregiving. It is both a blessing and a curse - like most things in life. And the stops, the starts, the quickness and slowness are all hard to absorb. Caregiving is never just one speed - the constant is the requirement for patience, even patience to endure grief.

Wisdom Comes From Living

Last week, I spoke about the resilience of caregivers.  This week, I'd like to say a few words about wisdom.

What exactly is the wisdom of caregivers?  The Oxford Dictionary defines wisdom as the quality of having knowledge, experience and good judgement.  Let’s start with knowledge. What do caregivers know?  Well, we know our loved ones and they have taught us the skills required for achieving intimacy in loving relationships.  That knowledge is rare and valuable. We need to stop the clock in order to listen to our loved ones.  That different pace of observing each other closely and patiently is a skill we have honed and one that people in the Slow Movement aspire to attain.  The Slow Movement advocates a cultural shift toward slowing down the pace of daily life.  One proponent, describes the philosophy this way: 

The only thing for certain is that everything changes. The rate of change increases. If you want to hang on you better speed up. That is the message of today. It could however be useful to remind everyone that our basic needs never change. The need to be seen and appreciated! It is the need to belong. The need for nearness and care, and for a little love! This is given only through slowness in human relations. In order to master changes, we have to recover slowness, reflection and togetherness. There we will find real renewal.

EvaFeder Kittay is a philosopher and someone whose work I admire.  

She is also the mother of Sesha, her daughter who is now 36 and has severe cognitive impairments. Eva writes that to be a good caregiver for someone like Sesha, one must become transparent.  She describes the wholehearted listening that Sesha commands and the delights that await anyone willing to suspend their ego and their busy agenda in order to commune in that humble and quiet way.  Eva told this story about an important moment of learning: 

"I had been with Sesha in Central Park and I was working on some walking exercises that the folks at Sesha’s early intervention programme had assigned.  I was working terribly hard trying to get Sesha to cooperate and do what I was supposed to get her to do.  I sat her down on her stroller and I sat on a park bench.  I realized that I was simply exhausted from the effort.  I thought, how on earth am I going to do this?  How can I possibly do this job? When I looked down at Sesha and saw her little head pushed back against her stroller and moving first to one side and then to another, I couldn’t figure out what she was doing.  Until I traced what her eyes were fixed on.  She had spotted a leaf falling and she was following its descent.  I said, “Thank you for being my teacher, Sesha.  I see now. Not my way, YOUR way, slowly.”  After that, I fully gave myself over to Sesha.  That forged the bond." 

This story is important because it underscores the beginning of an understanding and acceptance of a ‘new normal’ that is driven by love, vulnerability, patience, respect and resilience.  A quick scan of the media will reveal a hunger for this knowledge, because beside every advice page about spiritual growth and life satisfaction will be articles about exploding health and social care needs due to the numbers of people aging into disability and people with disabilities aging.  These demographic trends are unprecedented and the only group with first hand experience in coping is ... us.  But we have been so busy giving care that we haven’t yet figured out all of the policy and business solutions to ensure a future good life for ourselves and our loved ones.  For that, we will need to forge partnerships and think creatively. 

As for technical knowledge, I wager that I am not the only caregiver online today who knows how to change a gastrostomy tube, empty a catheter bag or discreetly soothe an anxiety attack. A recent study published by the American Association for Retired Persons showed that more than half of family caregivers polled were performing complex nursing care on a daily basis.   More than two thirds were giving medications, including those delivered by injection or IV.  Thirty years ago, tube feeding would have been a nursing need requiring hospitalization.  Today, families are expected to roll this task into their day alongside walking the dog and fixing school lunches. 

Each of us has a caregiving experience that is unique.  Our lives are often punctuated by the extremes of emotion and many of us describe our family life as a ‘roller coaster’, reeling between hope and despair, grief and joy.  The constant though, is love.  Individually and collectively, we embody resilience, compassion, generosity, hospitality and ingenuity.  We embody those qualities partly because of the care that we give, but also because we are constantly presenting our loved ones to the world as we see them - whole and beautiful, but with exceptional needs.  At the same time, we have to see our dependent loved ones as others see them, because if we didn’t, we wouldn’t be able to make those fine adjustments necessary to ensure their dignity remains intact.  Our knowledge and experience give us a crash course in becoming fully human.

Besides knowledge and experience, the final component of wisdom is the ability to judge and act fairly.  The very first decision to care for another is an act of fairness. And every caring action that comes after is a judgement and decision to act fairly. Caregivers know a lot about judging situations and making decisions about fairness and what actions to take. When I need to speak to a wise person, I don't seek out a person with the highest level of university education or the top executive. I search for the friend who has been the caregiver over many years. Because it's that person who has achieved a fine balance between using the best of her head AND her heart every day .

Lessons I've Learned From a Life of Caregiving

Here's a short video of me reflecting on lessons I've learned from a life caregiving. Share the lessons you've learned in the comments below - I would love to listen and learn!





Thank you to my talented brother in law Frank Opolko for producing this video!

When Long-Term Caregivers Tell Their Stories, Outcomes Improve

Arthur Kleinman understands families like mine.  I know he does, because he wrote this:

The chronically ill (and their caregivers) often are like those trapped at a frontier, wandering confused in a poorly known border area, waiting desperately to return to their native land.  Chronicity for many is the dangerous crossing of the borders, the interminable waiting to exit and reenter normal everyday life, the perpetual uncertainty of whether one can return at all.  To pass through this world of limbo is to move through a “nervous” system, a realm of menacing uncertainty.  

For some the passage is not so difficult; for others it becomes routine like so much else in life; yet for others it involves despair at being stuck in a place one has come to hate and fear.  This image should also alert us to the social nature of chronicity: the entrance and exit formalities, the visas, the different languages and etiquettes, the guards and functionaries and hucksters at the border crossing points, and especially the relatives and friends who press their faces against windows to wave a sad goodbye, who carry sometimes the heaviest baggage, who sit in the same waiting rooms, and who even travel through the same land of limbo, experiencing similar worry, hurt, uncertainty and loss.  Social movement for the chronically ill is back and forth through rituals of separation, transition and reincorporation, as exacerbation leads to remission and then circles back to worsening and so on.  (The Illness Narratives, 1988)

The loneliness that Kleinman describes comes from the feeling that everyone else is living a different, 'healthy' life. And no one has stopped to truly understand the experience of longterm illness and caregiving.  Luckily, Kleinman has offered some thoughts on re-imagining the way in which professionals care for the vulnerable and their families.  He begins by suggesting a major transformation of training for health professionals and proposes a new methodology that is rooted in ‘empathetic listening, translation and interpretation’.  The practical steps in building this new professional training would begin with recording a ‘mini-ethnography’ or life history of the patient and his or her family.  The neurologist treating my son’s first seizure would have discovered in my life history that I had been traumatized as a teenager by witnessing my father having a post- stroke seizure while the two of us were alone at home.  I was almost immobilized by fear when I realized years later that Nicholas might have epilepsy. 

Next, Kleinman proposes ‘the explanatory model followed by negotiation’.  Once a professional understands the lived experience of a person requiring care, he or she can converse with the patient and family to compare understandings of the illness, the treatment options and how to agree on a course of action.  Everyone in the room might answer questions such as “What do you think is wrong?  What caused it?  What do you want me to do?  What do you think will happen if you have this or that treatment?”  Of course, no one is going to take time to build consensus in this manner if there is an emergency situation, but in chronic care, consensus is critical to minimizing regret, frustration or anger over the long term.

Finally, Kleinman proposes a process of ‘remoralization or a process of medical psychotherapy’ for doctors seeking to be truly helpful to their patients with chronic illness.  He describes a series of appointments wherein patients can discuss their sense of loss; a talking therapy moving the patient from grief to restitution. This process, as Kleinman describes it, isn't about talking therapy instead of practical healing. Not at all. It's about doctor and patient/family coming to a place of shared understanding so that informed decisions for healing can take place.

If I could, I would make it mandatory for all student doctors to complete a rotation in community medicine.  For all doctors to have the experience of visiting homes and observing the real lives of patients living with chronic care conditions would go a long way to achieving Kleinman’s ideal of empathetic listening and understanding the life histories of patients and families. 

Arthur Kleinman wrote “The Illness Narratives” in 1988.  There has been a lot of water under the bridge since then – that was the same year that my son Nicholas was born with severe disabilities.  Since 1988, much has stayed the same and much has changed, some for the good.  Consider this pearl of Kleinman’s wisdom:

The study of illness meanings is not only about one particular individual’s experience; it is also very much about social networks, social situations, and different forms of social reality.  Illness meanings are shared and negotiated.  They are an integral dimension of lives lived together.  Had we examined work settings, schools or other of the major institutions of society, we would have arrived at the same point.  Illness is deeply embedded in the social world, and consequently it is inseparable from the structures and processes that constitute that world.  For the practitioner, as for the anthropologist, an enquiry into the meanings of illness is a journey into relationships.

I knew these ideas to be true long before I ever heard about Kleinman and his work.  I allied myself with the work of the PLAN Institute and with the innovative social network coordination tool, Tyze.  These entities were created in order to create social support networks around vulnerable individuals, but also to allow professionals, patients and their families to share information, listen empathetically and to negotiate treatment plans by engaging in one, ongoing ‘real life’ conversation about care and treatment choices.

Can it ever be possible to have a de-medicalized model of social, community and family based medicine for long-term care patients including the elderly and their families?  I think it is and Arthur Kleinman has given us a very good place to start.