Thursday, 20 July 2017

Caring for Non-Speaking Loved Ones in Pain

What does pain look like in a person who cannot speak?  Most often with our son Nicholas, it looks like this:

When his smile suddenly turns to a 'stricken' look, we know that Nick is in pain.  There are other signs too - sweaty palms and feet, high heart rate, staring, not responding in his usual way, and whispering "ow".  We know the signs of Nicholas' pain and we know how to soothe him.

But what about pain in those we love who have severe communication and cognitive impairments - loved ones with Alzheimer's, severe dementia, and certainly severe cognitive disabilities?  They may feel pain, but sometimes cannot express it in ways that family members and medical professionals can understand.

Professor Peter Passmore can help us understand and assess the pain in our loved ones.  He is a Professor of aging and geriatric medicine at Queen's University, Belfast and together with Emma Cunningham, a clinical research fellow at the same university, he developed a simple guide to recognizing pain in patients who have severe cognitive and communication disorders. 

Their research shows that pain in dementia patients is routinely under-diagnosed and under-treated. Here are some symptoms of pain in loved ones who have cognitive and communication disorders:

Facial expressions:
  • frown, sad, frightened, grimacing
  • sighing, moaning, groaning, grunting, chanting, calling out, noisy breathing, asking for help, verbally abusive
Body movements:
  • rigid, tense body posture, guarding, fidgeting, pacing, rocking, restricted movement
Changes in interpersonal interactions:
  • aggressive, combative, resistive, less interactive, inappropriate, disruptive, withdrawn
Changes in activity patterns:
  • refusing food, appetite change, change in sleep, cessation of routines, wandering
Changes in mental status:
  • crying, increased confusion, irritability, distress

Professor Passmore recommends the Abbey Pain Scale as one simple but effective tool to 
assess and keep track of pain in a non-speaking loved one.

There are many reasons that pain management can fail a person who has severe disabilities 
and communication difficulties.  We are fortunate that Nicholas can say a clear 'Yes' and 'No'.
So, Nick can tell us if he has 'no pain', 'some pain' or 'a lot of pain'.  But because he very 
afraid of going to the hospital if he reports a lot of pain, often he will simply fib and under-
report his discomfort.  We need to watch carefully for subtle signs and we give extra pain 
medications based on what we observe.

When we watch our loved ones who cannot speak, we realise that what they experience and 
what they express are not the same thing.  We must watch carefully, identify indicators and 
develop our own custom pain scales the best we can.  Caregivers have many roles and being 
the voice of pain for someone you love is one of the most vital.

Monday, 17 July 2017

LISTEN: Our Family Experience With Disability Told to a Med Journal

This is a podcast and article I did for The Canadian Medical Association Journal (CMAJ). The piece is a shorter version of an address I gave at the American Academy of CP and Developmental Medicine Conference in 2016.

What do doctors need to know about the lived experience of parenting a child with severe disabilities? These are my reflections.

Sunday, 9 July 2017

The Ultimate Caregiver's Playlist

Music is often the soundtrack of our lives. Particular songs evoke memories of personal pain, triumphs, love, commitment and maybe a broken heart. Other tunes just make us happy by prodding us to smile and dance. Caring for another person is a journey full of some of the greatest dramas in our lives, so I asked readers to tell me about their playlists. 

I was astounded by the response. Everyone wanted to describe how music made caregiving easier.... or how the silencing of it was necessary. 

Bob Harrison blogs for The Caregiver Space about his years caring for his adored wife, Annie. I was so touch when he told me that the day Annie was diagnosed with cancer was the day that for him, the music died. But he has songs of grieving on Annie's beautiful memorial page.  

Terena, a member of The Caregivers' Living Facebook page said this: "I have a " theme songs" playlist I play when feeling overwhelmed. Moby's "We are all Stars" and George Michael's, "Freedom" are two faves. And when I'm really stressed out I play "Tightrope" by Janelle Monae."  (I love Terena's taste in music!)

Lara cares for her son who requires complex care. She's got a 'Battle Playlist' for days when she's fighting for services or funding. Songs like Brave by Sara Bareilles, Fight Song by Rachel Platten and I Won't Back Down by Tom Petty are highlights. 

And lots of research shows that music aids in healing - in one scene of “Alive Inside” (2014), a documentary film about care and music, a nursing home care worker offers headphones to a wheelchair-bound man named Henry. When Cab Calloway's voice wakes Henry, he comes alive. This extraordinary moment from the film is available on YouTube, and has been viewed more than 2m times to date.  

So with this potent evidence of music's power to uplift, heal and speak our emotions, here's a playlist for natural caregiving that's on my phone and I'd like to share with you. We need the healing power of music too! 

       1)   Breakfast Can Wait by Prince
2)   I’ll Be There by The Jackson Five
3)   God Only Knows by The Beach Boys
4)   Lean on Me by Bill Withers
5)   You’ve Got a Friend by James Taylor
7)   Piece of My Heart by Janis Joplin
8)   Roar by Katy Perry 
9)    I Will Survive by Gloria Gaynor
10) Uptown Funk by Mark Ronson and Bruno Mars


Wednesday, 5 July 2017

An Adventure With My Mom and a Surprise Ending

Last week I decided to keep a promise I'd made to my Mom - I would take her out for dinner and spend a night away with her in a really nice hotel.

My mother is like Thelma or Louise trapped in a frail, 95 year old body. Despite the extraordinary kindness of her assisted living staff, she often feels frustrated by her confines. Lately, the rainy weather has increased her feeling of being caged in. I thought a one night 'holiday' would do us both good as our son had undergone surgery a week earlier to replace an aging spinal cord pain pump. He was doing well and was almost back to normal, so I felt confident to go see my Mom.

I knew that if I told Mom beforehand that our plan was to have a mini-holiday, she would worry about whether her hair and her wardrobe were just right. And those uncertainties would lead to a cancellation along with apologies. So I secretly packed a bag for her, put it into the trunk of the car and asked if she'd like to go shoe shopping. She would! Off we went to the nearest mall where we both found sandals we liked. Mother-daughter shopping made us thirsty so I suggested that we go a lovely waterside hotel nearby for a drink. We sat outside by the lake sipping our cocktails and chatting about good times past.

We decided to have dinner in the hotel restaurant - it was pricey, but we were on a roll! Capuccino for dessert and then I popped the question - did Mom want to stay over for just one night? It would be fun and we could have a leisurely breakfast (Mom's favourite meal of the day) and then I'd take her back to her assisted living residence. We agreed it was a great plan and we went up to our room overlooking the lake and garden.

We read, chatted and eventually put our heads down for the night. At 12:30 am, the phone rang. At first I was disoriented and couldn't find the source of ringing. A couple of minutes later, it rang again and I managed to pick up an extension in the bathroom. It was Jim, my husband. Our son Nick was on his way to the ER with an infection in his surgical site. We agreed that I would stay the night with Mom and that my sister would come for Mom very early the next morning. Our plan worked and I managed to arrive at Nick's hospital bedside first thing the next morning (my Mom lives about a 2 hour drive away from our home city, so I got a very early start).

The next day, Nicholas had another emergency surgery and now he's recovering on antibiotics. These days I'm spending most of my time with him. But I will always treasure the memory of a (mostly) lovely mini-holiday with my Mom. Lesson learned: make everything seem unplanned, like a spontaneous decision and be prepared for anything to happen.

Friday, 30 June 2017

The 'C' in Canada Stands For Caring. Happy 150th Birthday, Canada!

by Vickie Cammack, my friend and co-writer who contributes often and especially recently because my son is in the hospital and I am with him. July 1st is Canada Day and this year is our country's 150th birthday. 

There is much to celebrate with the arrival of Canada’s 150th birthday. Our country’s natural beauty and abundant resources give us many reasons for gratitude and celebration.  But there is an invisible resource that underpins our collective prosperity that deserves the central candle on the birthday cake: The caring people of Canada. 

Every day, their natural caring actions touch almost every one of us.
According to the most recent General Social Survey 82% of Canadians over 15 reported helping people directly.  That is almost twice as many who formally volunteer. Helping people directly means caring for one another freely and naturally without the involvement of an organization or a group.  The GSS reveals that eight in ten of us helped extended family members, neighbours, colleagues and even strangers with things like making meals, picking up prescriptions, doing household repairs, mowing lawns, driving to appointments, completing paperwork and so on.  And 31% of us did so on a weekly basis.

The good news about Canadians caring continues. While men tend to do more household maintenance and women more personal care, Canadian women and men are equally likely to help others directly.  And whether we were born in or outside Canada our rates of caring others are almost identical.  The intergenerational findings are also heartening.  A whopping 91% of 15 to 19 year olds reported they had provided help to someone outside the home and 55% of Canadians over 75 (who are after all are most likely to be the recipients of care themselves) were providing some type of direct help to others.

Caring is in our DNA.  Long before we were a country, like the forests, water and cold it was here. Thanks to Canada’s original inhabitants the early European settlers survived. The indigenous peoples of Canada welcomed, mentored and directly cared for many of them. And over the course of the last 150 years we have often had to care for one another other through the bitter of winter or during natural disasters. 

But our innate call to care goes beyond an emergency response. We were the first country in the world to establish a private citizen refugee sponsorship program.  From Charlotte City to Iqualuit and Goose Bay 300,000 refugees have been welcomed. This program has millions of ordinary Canadians demonstrating their caring nature. By running errands, providing housing, finding schools, preparing meals, giving music lessons and countless other every day acts of kindness they are showing soon to be Canadians what we are made of.

Certainly we are far from perfect.  There are many historical and current situations that can be readily surfaced to demonstrate other facets of our nature.  But we cannot deny that we are a country with a caring majority, a country where almost every citizen freely and naturally cares for their friends family members, neighbours and co-workers who are elderly, sick, disabled or down on their luck.

There is an odd and perhaps uniquely Canadian thing about caring. We hide it under a bushel basket.  Very few of us actually self identify as caregivers.  We don’t see caring as a role but as the stuff of everyday life. We see ourselves as ordinary people doing what comes naturally.

Canada may be known as the great frozen north but it is the warmth of the caring majority that distinguishes and nourishes us.  That is something worth celebrating.  So on Canada’s 150th birthday let’s pause give a special shout out to:
Indigenous people who established virtues of hospitality and sharing in our DNA
The young people who care for their parents, siblings and peers
The new Canadians who bring a spirit of caring that creates connections across cultures
The thousands of paid care providers who regularly demonstrate caring above and beyond their prescribed roles
Those who receive care with dignity

And while you are it take time to appreciate your own caring nature.  If you are not caring for someone today, you will be tomorrow.  And you will know exactly what to do.  It’s who you are. 

Saturday, 24 June 2017

Ease the ER Experience: Awesome Tip From a Reader!

Facebook is a fantastic information sharing tool for natural caregivers. The Caregivers' Living Room has a page Here and lately we've been chatting about giving doctors and nurses an accurate picture of our loved ones in hospital. When our loved ones are elderly or have disabilities in the emergency room, it's easy for medical professionals to make negative assumptions about how they are on a good day. (It was Vickie Cammack's guest post Do You See What I See that got us thinking!) 

Caregiver Kim had a great suggestion. She proposes a one-pager with up to date information that medical staff need to get an accurate snapshot of the person. Kim's template has all the information that doctors need to know plus everything we WANT them to know. Thank you, Kim!

It seems like a lot, but once you get it done, it’s SUCH a good thing to have it on hand; and updating it only takes a minute.
1) Fir
st, I give the full legal name, followed by what he goes by (i.e. James Reginald Smith, goes by Jim)

2) Next, Date of Birth

3) Health Card Number and/or Insurance Details (even though the health card should be with the patient, it’s convenient to note it here)

4) List of Diagnoses (include allergies to medications, and any anaphylactic allergies). It may also be helpful to note the date of each diagnosis.

5) List of current medications; how long you’ve been taking them, what the dosage is and what the medication is for (as some meds are used off-label). This is where it’s important to update the page annually,and/ or with every change that occurs. (Also, the ER staff will ask which medications have been given that day - be prepared to answer that question.)

6) Previous surgeries (include year and place); serious illnesses/previous hospitalizations (include year and place)

7) For children, indicate if vaccinations are up to date. For adults, note when last booster shots were given (i.e. tetanus).

8) Behaviour/personality traits. This is where I’ve listed that my son is normally extremely active and very happy and content. This helps the doctor see how far from “normal” the patient is. (Note from Donna: I include a photo of my son and my Mom on their one-pagers so professionals in the ER can see their vibrant, smiling faces when they are healthy)

9) If they have problems communicating, or a different way of communicating, note that here.

10) How do they normally deal with pain? (i.e. do they have a high tolerance for pain?)

11) You might want to include any other information that would give an indication of what “normal” activity and competency levels are (such as work or hobbies). But remember this is a BRIEF summary of the patient, so be succinct. Only include pertinent information and in a concise manner.

12) List of doctors, indicating what field (i.e. family doctor, oncologist, etc) with their contact information. Also, list additional medical contacts, such as the pharmacy you normally go to for prescriptions, or doctors that might not be considered primary care (perhaps an allergist, or a dentist).

13) List a couple of people who are emergency contacts. Note the relationship to the patient and be sure to give phone numbers where they can be reached at any hour.

14) Finally, at the bottom of the page, note the date that you last updated this information. If you have not updated it in a while but it is still correct, just change the date (so that people can see the information is recent and still relevant). Every time you update the page, re-read the whole thing to be sure all the information is still correct and has not changed.

15) Note from Donna: I would also add whether there is a Do Not Resuscitate Order on file. Also, if you have a Power of Attorney or Guardianship arrangement for your loved one, this should be noted on the page as well. 

The community of natural caregivers is place of wisdom, experience and generosity. Thank you Kim, for the benefit of your wisdom - I know it will help lots of readers and their loved ones! If you have more ideas of what to include on this document, join the conversation! 

Thursday, 22 June 2017


My friend and colleague Vickie Cammack and I co-write a weekly column for Troy Media called Caring Connections.  Vickie cares for her Mom and here, she tells a story that I think will resonate with everyone here in the Caregivers' Living Room.

Do You See What I See?

One rarely uses the term visionary to describe natural caregivers.  Yet vision is indispensible when we take care.  Professionals no matter how well trained or prepared, cannot see what we see –what was, what is and what can be for our family members and friends.

Visionaries make the truth visible. Caregiving requires us to share our knowledge with certainty, our intuition with confidence and our stories with pride.  When we do this we not only provide critical care information, we help everyone involved to care and connect in more meaningful ways.

A few months ago at the start of a busy day I gave my fiesty ninety year old mother a call.  I was worried. She had been nauseous and a little feverish for the last few days.  Alarmingly, she had lost her interest in cooking, her number one passion. On the phone she sounded confused and said she felt dizzy. She complained that her heart was pounding. I drop everything, relieved that finally, she has agreed to go to the hospital.

I provide the intake clerk with all my mother’s pertinent information - medical number, medications, my contact information.  I provide most of her medical history.  My mother describes her symptoms but she is not as sharp as she usually is. Her sentences are incomplete.  Her words are slurred.  I do my best to fill in the blanks. I emphasize that my mom is usually bright, vibrant articulate woman. This is not like her, I say. I don’t want anyone making assumptions about her capacity because of her age.

My fears are not unfounded.  Health care professionals often mistakenly assume that older people who seem confused and disoriented have pre existing dementia or mental illness. A misdiagnosis of delirium, a relatively common experience of hospitalized older adults, can be life threatening.  The Centre for Healthcare of the Elderly reports that in a recent study up to 67% of delirium cases were not recognized by physicians and 43% of cases were not recognized by nurses caring for the patients. The Centre considers the problem prevalent enough that it created the web site This Is Not My Mom encouraging carers to talk about sudden or rapid changes in the person they are caring for even if no one asks.

Throughout our day at hospital many tests are conducted with my mother.  Each time a new nurse, doctor or technician appears we repeat the context, the symptoms and just as importantly how Mom was before she fell ill.  I describe her passion for baking.  I even slip in a mention of the elaborate birthday cakes that she still bakes and painstakingly decorates with her arthritic fingers for each of her great grandchildren.  I do this because I want them to see what I know.  I want to them appreciate what has been in my mother’s life and to spark for them what is possible.

Happily, the cause of my mother’s distress is found to be simple dehydration.  A couple of bags of intravenous fluid and she is almost back to normal.  When she asks me to go down to the hospital gift shop to buy her favorite cooking magazine I start to relax.  I can see her standing in the kitchen, baking up a storm once again.  The doctor can see it too. She gives my mother instructions to drink plenty of fluids and then with a twinkle in her eye says, “take it easy in the kitchen too.”