Monday, 19 February 2018


Once in a while in the life of a caregiver, the chance of a few days away from home reveals itself. A respite break might come from a community care home or it might be arranged with the help of family and friends who have offered to stay with a loved one for a few days.

But time away might seem inconceivable when we are the only knowledge keepers of our loved ones' habits, medications and preferences. Training someone new to come in for a few days seems like a gargantuan task that might be more bother than it's worth.

It doesn't have to be that hard. If you DO have an option to take a break, plan it carefully to ensure that both you and your loved one will actually relax and enjoy the refreshment of change.

1) Ease your loved one into the idea of your break slowly. If your respite plans include a stay at a care home, visit a few times before you leave and extend the time with each visit. Explore the facility and introduce your loved one to staff. Engage in an activity together there with other residents, if you can. If your plans include someone else staying at home with your loved one, ensure that everyone knows each other well before your holiday. This might mean a few home visits and even an outing together.

2) Write out a care plan and keep paper copies at home as well as online (for easy access multiple ways). Include the following information:

  • Full Name
  • Address and Telephone
  • Date of Birth and Health Card #, Social Security #, Insurance Information
  • Physician names and contacts
  • Emergency Contacts
  • Diagnoses and current medications with times and doses
  • Recent health history (if there are any recent illnesses or ongoing health concerns
  • A day/night outline of routine activities
  • A calendar of planned activities while you are away
  • A list of likes/dislikes including food preferences, TV shows, etc. 
3) Make a plan of how and when you are going to keep in touch with 'home' while away. You may ask carers to update you via email once a day - make sure you list the type of information you want reported. You may wish to know about your loved one's mood, or what they ate. Don't assume that carers will know what to tell you - they won't unless they're told. Think about how often you would like to call or skype home to speak with your loved one or their carer. A call plan will mean you can relax, knowing that your loved one can be reassured that you will call at a certain time. Or, you may decide that you prefer to speak with your loved one and his/her carer only in a case of emergency. The goal is to make arrangements that are planned and that are designed to ease stress.

4) There may be a charity that can help with the cost of care for your loved so you can have a break. Help for Alzheimer's Families, The National Respite Network and Resource Center, the National Family Caregiver Support Program and a variety of programs in Canada offer funding support for family caregiver respite.

4) Keep a photo journal of your time away to share with your loved one when you get home so that you can relive your holiday and share it with your loved one, emphasizing that he/she helped to give you a break. 

There are so many barriers for caregivers to access respite. Family and friends may not be willing or equipped to step in. Residential care may not be an option. A loved one with Alzheimer's may suffer too much from change in routine, or a non-speaking child with developmental disabilities may be too vulnerable to place in the care of others. Nevertheless, having these plans in place (or at least thinking about them) will put you in a better position if you ever HAVE to leave home suddenly. And for those caregivers who CAN get away for a break, hopefully these tips will make a holiday more relaxing. 

Friday, 16 February 2018


Last year, the US Providers Association for Home Health & Hospice Agencies (PAHHHA) designated the third Friday in February as National Caregiver Day. This year, that's today - February 16! The intention was to create a national occasion similar to Mother's Day - one day in the year when Caregivers are thanked and feted. So today, share this post with friends and family. Today is the day when everyone says THANK YOU for all you do. 

You won't receive any cards or cakes for National Caregiver Day.  You won't be handed a box of chocolates or a new diamond ring either.  If you did, you would have made it or bought it and wrapped it yourself. 

That's the thing about caregiving, it's for someone else, usually someone we love.  And that's because caregivers learn, over time, how to derive deep satisfaction from a smile, a meal eaten by our loved one, washed hair, calmed anxieties and memories shared.  We don't need gifts of chocolates or diamond jewellery to understand how our loving acts are needed and hopefully appreciated (although we'd never turn down those earthly gifts, of course!). 

National Caregiving Day is an opportunity to reflect on the meaning of our caring lives and to thank ourselvesnot for being perfect, but for being the best caregivers we know how to be. (And to thank another caregiver, too!) National Caregiving Day is a chance to celebrate the nobility in our daily lives.  Because we are noble - more noble than bankers, clerks, lawyers, sales reps, even teachers and police officers.  Ours is the most noble work and all those working professionals know that their most noble work happens at home, with family.  Caregiving is the core of what is most meaningful in life - our most intimate relations with those we love who are vulnerable and need our care.  Caregiving teaches us all life's most important lessons.  Eventually, after years of giving care, we become wise elders - that is our reward, and it's a rich one.

Monday, 12 February 2018


I always keep my eyes and ears open for news about devices that ease our burden of care while ensuring our loved ones are safe from harm. Today it's my pleasure to host this guest post by Sarah Jackson on just that topic!

As more people live longer and remain active into later life, they also face a variety of safety issues. The changing dynamic between older adults and consumer markets has produced a new and growing industry that focuses on senior safety tools, products and services.

At home or in care facilities, families, and senior caregivers have access to improved resources designed to ensure the safety of older adults — protecting them from falls, accidents, and other emergencies.  Better safety leads to enhanced quality of life and more enjoyment for seniors, regardless of where they live.

Five Tools Every Caregiver Should Be Using

The senior safety industry includes a wide-range of services from home care to personal monitoring. Among the many new products, the top five that anyone in the senior safety industry should be using include:

1. Wearable Technology – from bracelets to socks and shoes, wearable technology that tracks movement, detects a fall, and monitors other functions should be the number one resource to implement in a care plan.

2. Medical Alert Monitoring – with GPS options, instantaneous two-way communication, and live video, medical alert monitoring advancements are both practical and comforting.

3. Senior-Friendly Kitchens – automatic shut-offs, “talk-back” technology, induction cook tops, and other new kitchen products make the most dangerous room in the house safe and functional.

4. Slip Resistant Devices – from bathmats to carpets, slip-resistant aids help prevent the number one safety risk for seniors — falls.

5. Interactive Devices – whether its medication management, health monitoring, or companionship needs in the middle of the night, easy-to-use tablets and monitors designed for senior homes are a valuable tool for immediate remote communication.

Understand the Market

Technology advances rapidly. What was innovative yesterday is obsolete today. The same is true for the senior safety industry.

Monitoring the market and being familiar with products, services, and manufacturers is the best way to choose and maintain the tools that fit every individual circumstance. The tools and devices that provide comfort and security in one home, may not be necessary in another.

Among the many services available in the developing elderly safety industry are personal consultants. Professionals can evaluate, identify, and advise older adults, family members, and caregivers on what tools would make the most difference in each home situation.

Use the Tools Effectively

Taking advantage of the many new products and improvements in senior safety technology will ultimately lead to increased comfort, greater independence, and more time for both older adults and their caregivers. Being a caregiver is often challenging, but ensuring that seniors have a safe and manageable home environment is easier when the right tools are available.

Sarah Jackson is a senior care professional. Her knowledge and experience ensure that elders obtain quality care and transitional preparation for their future.

Tuesday, 6 February 2018


A couple of years ago I met an amazing doctor. I was speaking at the American Academy of Cerebral Palsy and Developmental Medicine conference in Fort Lauderdale and after my remarks, a gentle but insistent man approached me saying, "Hello, my name is Jim Plews-Ogan. I'm a pediatrician specializing in complex care and I am really, really interested in what you said about kindness." These are the words from my speech that drew Dr. Plews-Ogan to me:

"Over the years of Nick's many hospitalizations and clinic appointments, I don’t recall ever once anyone asking me, “What do you believe is happening to your son? How do you feel about your treatment choices? How can we support you now, given Nicholas’ realities?” I do remember saying, “I need you to be kind to me; I really need that.” In my way, I was pleading for a compassionate, honest conversation that would enable us to examine each other’s understanding of where we were as a team with Nicholas’ treatment and where we were likely to go. I wasn’t seeking certainty; I was seeking honesty, reassurance and kindness."

Jim Plews-Ogan teaches the importance of kindness in care to medical students at the University of Virginia and he blogs about his work HERE. Jim and I have kept up a friendship based on our shared interest in how kindness can be manifested to patients and their families in health care.  His work inspired me to ask families on my social media networks this question: What does kindness in health care look like? I asked families to tell me their stories about when medical professionals showed exceptional, personal kindness and how that compassionate care made a difference in their ability to manage very difficult circumstances of illness or disability.  The response was incredible. Within four hours, 57 caregivers had responded. I was in tears reading these moving accounts of extraordinary kindness. 

1. "I remember when my (adult) daughter had been in the hospital for 9 days and I was scared and exhausted. She was taken out of her room for tests and I started to weep: I had held it in for so long not wanting her to see my worry. Her busy busy nurse walked by the room and saw me crying. She came in and silently held me for about five minutes while I cried. So much beyond her call of duty, and so beautiful."

2. "We were visiting the NICU where my girls were born, after receiving the CP diagnosis. One of the neonatologists who had been a part of our journey since my twins' delivery noticed that her shoe was undone so he picked her up, put her on his lap and tied her shoe. It was honestly the cutest and still means so much."

3. "My daughter had some persistent respiratory challenges that kept escalating; and as a result she had a surgery cancelled on multiple occasions because we couldn't get her breathing stabilized. After 6 months of this, I emailed the specialist in desperation on a Saturday night because my daughter was still wheezing significantly and I was going to have to cancel surgery again. Well, he called me back within 1/2 an hour of emailing (from his home), reassured me that we would find a way to make the surgery happen, contacted all her specialists, got a medication plan and reserved an ICU bed...then followed up with me and got her in for a check-up just before surgery to make sure our plan had worked. Which it did... He then danced with my daughter at her follow-up appointment. I will never, ever forget his kindness."

4. "My son was in the ICU for a long time. We developed an amazing relationship with one doctor in particular. On rounds one day she asked the group of residents if they thought my son was retaining water. After a few residents tried to answer, she interjected and said "why don't you ask mom." She respected us and valued our opinion. She used the moment to teach the future generation how to value parents. This to me was real kindness."
5. "I have one with my “typically developing” daughter, L. She was about 3 at the time, making J (her complex sister) about 1.5. I had taken L. out for a walk and she fell on the concrete. She landed on her elbow. She immediately started babying it, but I could tell nothing major was happening. Still, she insisted on going to the hospital. Because she had seen how I would drop everything to take J. to the ER, generally because of lung infections/pneumonia. I kept telling L. she was fine. When she wasn’t buying that, I prepared her saying that we’d be at Emerg FOR HOURS. She was still adamant she needed to go. I went to triage and said “Listen. I think my daughter is fine but she sees me drop everything to take her sister to the hospital on almost a bi-weekly basis. I just need someone to prove that I’m willing to do the same for her as I do for her sister. I have told her that we’re going to be here for hours so please make us wait”. The doc overheard what I was doing and took us almost immediately. Checked her elbow and made sure everything was ok and it was just a bruise. Then wrote her a script for 24 hrs of ice cream and cuddle time on the couch. He applauded me for how I handled it and wished other parents would do the same. I said I felt like I was abusing the system. But frankly, L never asked to go to the doc again until she actually broke her arm at the end of grade 2."

6. "My daughters first kiss came from her primary NICU Nurse. As my daughter was born at 25 weeks keeping her free from infection was my top priority I was so afraid to even breathe around my daughter never mind kissing her. I will never forget that exact moment she leaned over and kissed the top of her head. That sweet moment reminded me what the importance of being a Mom was even though it came with risks."

7. "I think that we find little acts of kindness all around us, every day. My youngest makes it so very easy. The IV nurse that danced along with his favourite song (and he still looks forward to seeing him), the child life specialist that walked an important DVD down to us in the ER from the ward, the volunteer that got us TWO mats to play on in our ward room, the nurse that brought me water and cookies because leaving the room to get something to eat was too scary, the birthday banner put on a room door and signed by staff overnight. Not very grand gestures but they make the world of difference."

8. And from the daughter of her elderly mother in hospice: "When an over worked, stressed out hospice nurse was inappropriately cheerful and made some silly comments and carelessly caused some minor pain to my dying mother, I was at the end of my wits and just sobbed at her thoughtlessness. Another nurse, seeing my reaction and sadness, hugged me and comforted me in the moment and then later explained that the hurt the other nurse had caused had not been intentional and explained a bit about that nurse to me. She didn’t excuse her actions but she explained some of that nurse's normally exceptional caring qualities to me without demeaning her fellow caregiver. It really eased and comforted me so that I was able to come away from the whole episode with a different perspective but still acknowledge that my upset was valid and understandable. I was even able to include the problem nurse in my individual thank you’s to all the nurses that had been so good to both my mother and myself at that tremendously heartbreaking time in our lives. The whole experience was truly remarkable."

9. "The male student nurse who gently washed my daughters hair after hip surgery. He was on his break."

These are only a few examples of the many and exceptionally moving examples of kindness in health care that were shared online. From these, I've learned that medical professionals can be kind in their actions and words by: 

  • Acknowledging that family caregivers are experts and care providers
  • Going 'above and beyond' in their efforts to REASSURE and offer HOPE - and they do it OFTEN
  • Allow and enable ACCESS to complex care caregivers via email or phone (believe me, we do not abuse this access - we only contact health care professionals for advice when we REALLY need it) Dr. Plews-Ogan teaches this by example to his students - has been doing house calls for his patients throughout his 30 year career in medicine
  • Offer TOUCH (hand holding, hugs to both caregivers and to our loved ones - see experience #1 above)
  • Offer FOOD (cups of tea, for example)
  • Offer RESPITE (when staff notice that we are exhausted and offer to sit with our loved one so we can get a break)
  • HUMANIZE our loved ones by marking occasions such as birthdays, ceremonies for palliative patients, etc.
  • PALLIATIVE care professionals seem to know best how to deliver care with exceptional kindness. Other disciplines in health can learn from them. 
These are just a few of the ways that health care professionals offer kindness to patients every day. I will be sharing all the responses I've received with Dr. Plews-Ogan. He will share them in turn with his medical students. And I'm thrilled to add that kindness is in the news today with the announcement of an exciting new book The Power of Kindness by Dr. Brian Goldman. Dr. Goldman is an emergency room physician and the host of the wonderful White Coat, Black Art on CBC radio. I never miss an episode. 

Thank you to every doctor, nurse, social worker, personal support worker or therapist who has offered kindness in care to patients. We deeply appreciate it and we are stronger for it.