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.”

Sunday, 4 June 2017

Lessons I Learned About Happiness as a Disability Parent

My husband and I were alone with the doctor in the hospital playroom when she gave us the news about our six month-old baby son. "Never be normal" are the words I recall. I also remember “generalized cerebral atrophy." I felt a strange, out of body sensation as time and space narrowed to a pinpoint. "Esophageal reflux," she continued, listing his challenges as her eyes welled up. "Nothing to keep food down where it belongs. Common in cerebral palsy. Pain similar to heart attack." I stared unblinkingly at the blue stripes on her blouse. I looked down and something red caught my eye. Blood was oozing from the edge of my thumbnail where I had bitten it.  

Suddenly, the news felt like relief. "Now I will be able to feed my child," I thought. Nick had never managed to suck or swallow efficiently, and his efforts to feed were punctuated with gasps and coughs. He spat up most of what he did manage to ingest. In that instant, I became convinced that if I could learn to correct my feeding technique, all would be well.  "I will become an expert," I thought. "I will apply myself to becoming a great mother, and my baby will grow into someone who will be the best at overcoming cerebral palsy."

Passing the ward desk, I noticed the nurses half turned, whispering, their pitying eyes fixed on us. I scooped up Nicholas, deposited him into a stroller and paraded up and down the hospital halls, back straight, eyes fixed ahead.But I was not all right. I wrote in our baby book: "February 22-25, 1989: Nick admitted to hospital. Cat scan, PH probe and digestive barium x-rays. All abnormal…trying to absorb this terrible news."

Over the twenty-eight years of our son Nicholas’s life, I have learned lessons about what it takes to thrive against all odds. These are five building blocks of happiness that I learned over the course of raising our children:

Accept Your Child for Who He or She Is. 

From the moment of Nicholas's diagnosis to the instant we realized that it was time for a wheelchair, we have been forced to accept difficult realities. But accepting that Nick could benefit from assistive devices was part of accepting him as he is. And that was hard, because in some ways, it meant giving up on the dream of him being more able and independent than he was. When it became apparent that Nicholas would never express himself verbally, a conversation with another Mom helped me reframe my thinking. "We don’t do our own dry cleaning or make our own soap," she said, "so what's the matter with a computer helping Nick to speak?" After that, assistive devices became our friends, not our enemies. Nick has taught me to trade my definition of success for his.

Embrace interdependence. 

Striving to be independent and self-reliant is a strong message in our society. And it's a toxic one: An inability to achieve independence is seen as a moral failure of personhood and if we believe that, we don't see our own frailty or that of everyone we love, especially our children. We are meant to be inter-dependent. Nick's network of support includes our family, his paid helpers, his friends and his doctors.  Together, we all help Nick to live a good life on his terms. We rely on each other as any winning team does.

Design your life intentionally. 

A wise friend told me recently that our most vital challenge in contemporary family life is to be intentional. Intentional about asking our children what a good day looks like for them, intentional about asking for what we need, even intentional about being happy instead of miserable. At Nick's neighborhood school, the other children were friendly, but brief in their conversations. One day, when I was volunteering in the classroom, I noticed an impulsive boy with a fiery temper was transformed into a caring, model student when paired with Nick. This young lad became a daily after-school visitor and frequent dinner guest. I learned how to engineer social opportunities for Nicholas by watching for signs that others needed something Nick and our family had to offer.

Know that a good life is possible. 

Everyone has a different idea of what they need to be happy. In our family, we began by asking ourselves, "Given our realities, what is a life that we value and how can we create it?" For me, this meant learning to be mindful and grateful at home, but to begin planning for a retirement from giving full-time care to our son. Living in the moment gave me joy, but planning my own future gave me hope.

Stop time with special time. 

When Nicholas was young, he did a kind of non-directive communication therapy called "Special Time." During the hour, the therapist did not speak herself, except to reflect back to Nick what she saw him do and what it might mean. It was an hour of intense intimacy and heightened listening. Special Time had many communication benefits for Nicholas, but it had benefits for me, too. I learned the value of stopping time in order to listen intently and exclusively to those I love. Even ten minutes a day of special time with a son, daughter or spouse enriches family life.

Tuesday, 30 May 2017


It is my pleasure to host this guest post by Hanna Landman. Sharing eldercare with siblings is a subject that's especially close to my heart because I share care for my Mom with my sister (who shoulders most of the care because she lives in the same city as our Mom). Luckily, my sister and I work together really well to each do what we can. Here are some great strategies to share care fairly! 

When a parent starts aging and their health starts declining, the ones closest will often feel the responsibility to shoulder the daily chores of caregiving. When there is a spouse who is capable of this full time job, the task will fall on them. However, in lots of cases, it becomes the responsibly of the children.
As children, taking on such a responsibility is really a privilege. After all, our parents care for us for so many years. From the early stages of pregnancy and throughout our childhood and young adult years, they’re always there, nurturing, feeding, bathing, teaching, and playing. They show us an outpouring of love, undivided attention, care and concern every day and every night for years on end. Never relaxing, never taking time off from the most precious job in the world, the job of being a parent. And then, after all those years of the undiluted love and upbringing, the tables turn and the very people who took care of us who now need us to care for them.
And yet, despite it being a privilege, it is also a tremendous challenge. It’s an emotional roller-coaster just coming to terms with the new reality and it can be very painful to see your parents suffer and become so dependent on others. Juggling your parent’s needs with your other responsibilities, such as your job, your own family and more, is another issue that can leave a child caregiver physically and emotionally exhausted.
Above these difficulties, there is another point which begs to be discussed – the challenge of sharing the caregiving burden with others.
Ellie W. from New Jersey is one of six children, four of whom live in the same city as her elderly mom.
“We are all grownups and have families on our own,” shares Ellie, “but we just can’t seem to agree on almost anything when it comes to our mother’s care. Every time there is a problem that needs a decision, there are six different opinions on what should be done.”
What are some ways to address this challenge? Ellie and other caregivers like her recommend the following concepts that get them through the challenge and keep everyone happy: 

1. Communication

Talk and listen. Have every one of the siblings sit down together with your parents and go through all the possible options of care that is needed. You may choose to have a nurse or aid with some experience in the field guide you through this.
“No one child should make any decisions themselves,” advises Howard P., who shares the caregiving task for his dad with three sisters, “without first getting the consent and input from everyone. This creates an open line of communication where no one feels left out or ignored. Another positive aspect of doing so is that it encourages everyone to share equally in the responsibility.”

2. Delegating Tasks

Each sibling should be given a clear directive of what their responsibility is. There are so many different jobs and tasks that have to get done. The siblings who live in town should share the day-to-day responsibilities of visiting and/or checking on the elderly parent regularly, getting things done around the house (such as housework, paperwork, gardening, etc.), bringing in the mail, doing the shopping and bringing the parent to appointments. The siblings who live out of town may want to get involved by sharing some of the financial responsibility.
“One of my siblings who lives out of town,” says Ellie, “can’t take on any financial responsibility, but she wants to be involved, so she took on herself to come in every few months for a week or two and take over so that those of us who are involved all the time can take a short break. We all really appreciate that she does that, and hope that she continues to stick with it – everyone’s gotta have a break sometimes!”

3. Focus on your Parent’s Needs

Try to remember that your parent’s needs take precedence over your own when you are dealing with their care. It’s easy to lose yourself in your own emotions and get worked up about your siblings’ decisions, participation, lack of participation or anything else they do or don’t do.
Always take care not to decide to do something simply because it’s best for you, but rather do whatever is best for your parents, even if it’s hard and inconvenient.
Leah H., who cares for her aging parents together with two other siblings, says, “My job is to put their feelings before mine. This isn’t about me; it’s about my parents and their needs. Of course there are many times when I can find a way to make us all happy – but when I can’t, my goal is to at least make my parents happy. I find that this approach really helps keep the peace between us siblings – after all, there is no reason to argue: it’s not about you or me; it’s about what our parents need. It’s a great peace-making tactic!”
* * *
To all the dedicated caregivers out there - never forget that your parents did everything for you out of pure love – now is your time to return the love to them. Try to remember all the sleepless nights your mom and dad had while they were caring for you. Remember all the good times you had with them. Remember how they always they gave you everything so that you could be where you are today. At times, caregiving can be very taxing, but never forget, taking care of a child was just as hard, and they did it for you. Caregiving for your parent is your opportunity to give back – and when viewed that way, it isn’t nearly as hard to do.
Good luck!

*Some names may have been changed to protect the privacy of the individuals involved.

About the author: Hanna Landman lives in New Jersey with her husband and child. She writes for AvaCare Medical, an online medical supply store servicing seniors and the homebound across the US. You can see some of her published work about senior care and more here.


Friday, 26 May 2017


I have the privilege of writing a weekly column called Caring Connections for Troy Media. My friend and colleague Vickie Cammack and I alternate weeks - have a read of Vickie's insightful pieces too! Here's my latest piece with its original title (which I like better for our group of family caregivers vs a general audience).  The piece went live at Troy yesterday morning about the time I got a call from my sister that our Mom was in the ER with symptoms of nausea. I cancelled meetings and went to her, of course. Luckily, Mom soon felt better and we were able to bring her home. I got back to my city of Ottawa in time to attend a lecture by Dr. Samir Sinha on what's wrong with geriatric care and how to fix it. My next post will be about his inspiring lecture. Life's ironies, eh?

When a loved one is admitted to hospital, family caregivers want to offer comfort and support at the bedside. We are keepers of our loved one’s medical history and we’re experts in their experience of illness as well as in their personal tastes and preferences. We represent the whole, well person to medical professionals who may only see an ill patient. But in order to perform our healing role, we need to be recognized as key members of the hospital treatment team. Natural caregivers perform a vital role in hospital and as care managers in the transition to home after discharge. Just because family care is borne of love and is unpaid, it shouldn't be seen or represented by health care bodies as arbitrary and outside the patient treatment plan. Family care is a key part of hospital care, so let's start talking about it that way.

Family caregivers perform the role of essential conduit between patient and all hospital professionals.  Not only that, we perform a good deal of personal care.  We are the purveyors of comfort and we are personal valets. We deliver glasses of ice water, extra blankets and lots of gentle hugs. The problem is that hospital administrators and clinical staff do not often admit freely to the vital role that families play as in-patient partners in care.  In fact the messaging on hospital websites invites the public to believe that families simply provide an antidote to the stress of acute illness and being away from home. Here's what one adult hospital wrote about visitors on its website: We encourage you to visit your loved one at any time because we know that having family and friends nearby helps reduce anxiety and isolation. Even though nurses rely on families to provide assistance to patients, especially for frail seniors and people with disabilities or chronic illness, hospitals still charge anywhere between $14 and $25 per day for 'visitor' parking – a cost that galls family members working at their loved ones bedside all day, every day.

Dr. Samir Sinha, Director of Geriatrics at Mt. Sinai Hospital in Toronto and expert lead of Ontario’s Seniors Strategy is a passionate champion of seniors and their families as partners in care. He reflects, “Family caregivers are essential ‘must-haves’ for frail elders who find themselves either hospitalized or in an emergency department.  The absence of a family member to provide context about the patient can sometimes lead to misperceptions that encourage premature instutionalization or the risk of a poorly planned discharge home.”

In the case of Children's Hospitals, parents are encouraged to 'take part' in their child's care.  This is the way one major pediatric hospital phrases the parental role on the website: 
Parents are encouraged to take part in their child’s care. You may stay overnight and sleep on the sofa in your child’s room for the duration of their stay. The implicit message to parents is that they are more than welcome to move in with their sick child. That messaging belies just how central a role the parents will play in their child's care while in hospital. The reality of pediatric care today is that nurses, doctors and therapists perform assessments and procedures, but it’s parents who soothe, monitor, distract and report on their child to staff, all day, every day.

Assistance with nearly all activities of daily living is up to families and this is particularly true for young children and patients with disabilities or chronic impairments of any kind. Today's wards are staffed based on caring for a sick, but otherwise self-sufficient patient population.  The reality is that the more dependent the patient, the more he or she needs a family caregiver in the hospital.  

None of this is the fault of our country’s highly trained and compassionate medical professionals.  It's simply an uncomfortable stage in the evolution of Canadian healthcare - caught somewhere between the old model of paternalistic systems and the contemporary reality of a population that is living longer, but with more illness and earlier hospital discharges - all with families as the backstop.

Inviting family members to contribute to hospital charts, providing us with comfortable in-hospital accommodation including access to kitchen and shower facilities, and free hospital parking when our loved ones are inpatients would be just a few ways that hospitals can support the critical role of families in the patient’s circle of care.