Friday, 26 August 2016


I am pleased to host today's guest post by Maria, our regular contributor on assistive technology here at The Caregivers' Living Room. Maria is a freelance writer currently living in Chicago. She has a Bachelor of Arts degree in English from the University of Illinois at Chicago with a minor in Communication. She blogs about environmentally friendly tips, technological advancements, and healthy active lifestyles.

Caring for someone who's unable to take care of himself or herself can be a taxing, arduous task, but modern technology can make it easier. Not only do the devices on the market today enhance comfort and convenience for seniors, they also free up caregivers' time and energy by automatically handling chores that previously had to be done manually.

Perhaps nowhere is this transformation more evident than in the field of home automation. Many elders suffer from debilitating conditions that affect their mobility and capacity for operating complex machinery. Fortunately, smarthome systems allow them to control their devices easily from either a central hub or by using their cellphones. This allows more individuals to age in place within a comfortable environment rather than succumbing to the disruption of a move to an assisted living facility.

Motion sensors, such as those made by Insteon and Samsung, are one of the most useful types of products for aiding senior citizens. When connected to smart lights, like the Philips Hue bulbs, and HVAC (heating, ventilation and air conditioning) equipment, such as the Nest Learning Thermostat, they can automatically adjust lighting levels and temperatures as the homeowner moves around the residence. The problems of forgetting to shut off the lights at night and being unable to reach switches and thermostat knobs become things of the past. Some types of sensors can detect when there hasn't been any motion for a specified period of time. They can then send an alert via email or text message to let a caregiver know that something might be wrong.

In the area of home security also, motion sensors security cameras have a role to play. Packages from SimpliSafe and the security camera system from Vivint can detect when someone approaches the property, providing 24/7 video recording. More sophisticated models incorporate home security cameras and video doorbells so that the senior will be able to see exactly who arrives at the house and when. With a subscription service, the company will send trained staff members to the location automatically whenever the system alerts them to something amiss, and the resident's emergency contacts will be notified as well.

While much attention is focused on the ways that sophisticated, multifaceted systems can help, even relatively humble and inexpensive products can make a big difference. Vitality's GlowCap pill containers play music and change colors to let patients know when it's time to take their medicine. They can even request refills of prescriptions with the touch of a button. The Amazon Dash platform makes it easy to reorder groceries and other supplies simply by scanning the barcodes.

All of this equipment requires an internet connection of some form in order to work properly. Seniors who aren't adept at networking and other technical chores may be able to benefit from ConnectHome, an initiative by the federal government in partnership with private organizations to expand broadband connectivity. While the program initially served primarily households with children in low income housing, it was expanded in July to cover low-income seniors as well. Elders within the service area of Comcast will be able to obtain high-speed internet access for just $9.95 per month.

The internet has already improved quality of life for the majority of the population in our country, and it's about time for seniors and the disabled to receive their fair share of the advantages too. By investigating, selecting and installing the right smarthome solutions, caregivers can increase the satisfaction and happiness of their loved ones while simultaneously making their own lives less stressful.

Monday, 22 August 2016


I’m a member of a private Facebook group called One MoreThing, or OMT. It’s a group for parents of children with disabilities, most of whom live in Canada (but all are welcome).  The Facebook group evolved out of the live One More Thing Mom’s group, an extraordinary circle of Ottawa complex care mothers, many of whom have children who are palliative (you can listen to a radio interview with them HERE).  Recently, a few of us were chiming in on Facebook about what to bring with us when our complex child or loved one has to go to hospital in an emergency. What items really come in handy for us in the ER or on the ward? Their knowledge is borne of much experience and their advice is terrific for ALL caregivers!

  • I always bring one dose of meds. That way if it's meds time, you don't have to wait for the hospital pharmacy to get them to you.
  • I bring a one-page history of the underlying condition together with a list of current medications, Health Insurance info, home address, date of birth and emergency contact information (might have to be two pages! LOL)
  • Magazines for yourself, hand cream, chap stick, note pad and paper, gum.
  • If you can get one, an extra phone charger! My phone always dies while we are in the ER.
  • Underwear for you in case your child gets admitted and you end up staying overnight... it's not bad wearing the same clothes 2 days in a row, but it's nice to have fresh undies.
  • We have a list of emergency protocols (what to do IF a certain health emergency occurs) including a recent weight (doctors need that to prescribe some drugs).
  • I keep toiletries for myself in my ER bag including shampoo so I can feel part human when they do the rounds on the ward. And extra socks and slippers for comfort.
  • Note pad, pens, contact numbers, spare glasses, footwear, pillow (the hospital ones are uncomfortable or non-existent for families!)
  • If your child is tube fed, I pack 1/2 day's supply of formula so there's enough to either get admitted or get home. Also, extra extension tubes for feeding and venting. If you don't use a standard feeding pump that matches your extension sets, bring your pump along too in case the hospital doesn't have the one you need.
  • Extra clothes for me in case of spills or cranked up air conditioning.
  • These plastic bags are great for keeping basic toiletries such as deodorant and tooth brushes. They have them for men and women at Walmart: 

  • Underwear for you and coins for the hospital washing machines (if they have them). Cash for meals and snacks in the cafeteria.
  • An eye mask so you can sleep in your bedside chair in the freezing, noisy room without being woken up by the light of the door opening... if you are lucky enough to catch a few zzzz's!
And last, but not least, remember the words "GO BAG" as you decide the immediate items needed for urgent ER visits. Pack a separate bag with 'extras' that someone can bring you the next day. As the Girl Guides always say, 'Be prepared!'


Wednesday, 17 August 2016

USA to UK: How Caring for her Mom Led to a PhD Abroad

I can't quite remember how I first met Feylyn Lewis. It might have been in caregiving groups on LinkedIn or I might have been impressed by her advocacy for young caregivers on Twitter. Either way, I decided to write to Feylyn and ask her if she would speak to me over Skype. I wanted to know more about this young PhD student from Tennessee who had moved to Birmingham, England to pursue her post-graduate studies in the area of young caregivers. Here's our conversation. I am constantly amazed by how personal experiences of caregiving can lead to academic or professional investigations with the end purpose of easing the caring path of others. Feylyn Lewis embodies all the reasons I am hopeful about the future of caregiving. 

1) Tell us about the subject of your research.

My research seeks to understand the ways a young adult's identity may have been shaped through caregiving and to learn more about how to better support young adult caregivers as they transition into adulthood. My research features 55 face to face interviews with 18-25 year old young adult caregivers across the United States, England, Wales, Scotland, and Northern Ireland.

Young adult caregivers are those individuals aged 18-25 who provide unpaid care, support, and assistance to a family member with a health condition such as a physical or learning disability, mental illness, and/or other conditions that require support (e.g. substance misuse, HIV/AIDS, dementia and Alzheimer's, and injuries sustained through military service). In the United States, there are estimated 4 million to 5.5 million young adults (aged 18-25) providing unpaid care to a family member, and in the United Kingdom, there are an estimated 230,000 18-24 year old young adult caregivers. Types of care young adult caregivers provide may include household tasks (cooking/cleaning), emotional support, personal care (showering/dressing), financial assistance and physical care (e.g., lifting or helping the family member to walk). Previous research has shown that young adult caregivers are at high risk for social isolation, poverty, depression, anxiety, and other physical health problems caused from providing care. They may also experience absentee problems at work or school, and depending on the intensity of their caring responsibilities, many young adult caregivers are unable to attend work or college at all. Historically, this group of young people have been hidden, invisible, and overlooked with regards to service care delivery and social policy advocacy. This stands in contrast to other advanced developed nations, like the United Kingdom and Australia, in which child and young adult caregivers have official governmental recognition and numerous organizations to help support their needs.

2) What led you to be interested in this topic?

Growing up in Nashville, Tennessee was filled with happy memories, but it was also challenging. My older brother and I provided care for our mother, who became physically disabled when I entered middle school. We were responsible for all of her home care, and my brother financially managed our entire household as a sophomore in college. He wasn't able to continue in college because the care for our family was so time-intensive. We didn't receive any support as young caregivers and our experience has motivated me to change the lives of children and young adults who also provide care for their families. Tennessee remains my home but I moved to England to conduct my PhD research at the University of Birmingham under the supervision of Professor Saul Becker, world-renowned expert in the field of young caregivers.

3) What have you learned so far?

Caregiving has played a crucial role in the ways young adult caregivers think about themselves and the person they are becoming. Some young adult caregivers feel restricted in their ability to move away from home or away to college, and others feel that their future life choices with regards to work, marriage, and children must be considered in light of their caregiving responsibilities. My research has shown that supportive organizations dedicated to young adult caregivers can help them navigate life choices and provide them with strong social network with other caregiving peers.

4) How do you hope young caregivers will benefit from your research?

If we have a better understanding of how the experience of providing care during young adulthood affects the ability of young people to explore their identity through work, education, and relationships, we are better positioned to help young adult caregivers into their successful transition into adulthood. In short, if we understand what they need, we can then create ways to support them.

5) If families have an opportunity to participate in a research study, what could they expect?

I strongly encourage families to participate in caregiving research whenever they have the opportunity to do so. We need to hear their experiences to facilitate true supportive change. Families may be surprised to learn that participating in a research study can be cathartic. Last year, I participated in a research interview on young caregivers and it was extremely refreshing for me to share and reflect. A research interview can be a way to open up conversation with your family as well.

6) Tell us three things you wish would change for young caregivers.

· More awareness from health care professionals, social workers, teachers, and policy-makers.

· Increasing support, so that they may experience more freedom in making life choices for themselves.

· Policy recognition on state and national levels. Young caregivers need respite care, financial support, and support for the person for whom they provide care. Policy can help!

7) Tell us three things about yourself that you only discovered when you moved to the UK.

· Moving to a new country without your family can be incredibly scary. I learned that I’m stronger and more capable than I thought!

· I’m committed. Sticking to a goal (my PhD) that involves hard work every day for four years seems daunting, but I haven’t given up.

· I love hearing the experiences of others. I’ve made friends from around the world and I’ve learned so much from them. 

Feylyn is a PhD student in Social Work at the Institute of Applied Social Studies at the University of Birmingham in England. A native of Hendersonville, Tennessee and graduate of Vanderbilt University, she is a nationally certified mental health counselor. Her doctoral research focuses on the identity development of young adult caregivers living in the United Kingdom and United States. During Feylyn’s childhood, her older brother was a caregiver for her and their mother who has a physical disability. This experience motivated Feylyn to pursue research and advocacy work for younger age caregivers; thus, she came to England from the United States in 2013 to further study under the expertise of Professor Saul Becker, world-renowned researcher on young people with caring responsibilities. While completing her doctoral research, Feylyn remains committed to raising the profile of child and young adult caregivers through blog writing, podcasts, and speaking engagements in both the United States and England. Click here to read her latest blog piece and click here to learn more about her research.

Saturday, 13 August 2016


I am pleased to host this guest post by my colleague in caregiving and writing, Katherine Arnup.  Katherine is a hospice volunteer who has a lot of personal caregiving experience.  Here, she writes about caring for someone she knew in hospice for the first time when she was volunteering. Anyone who wonders about how to approach being helpful but not intrusive with a friend or loved one in hospice care will appreciate Katherine's wisdom on this delicate topic. 

I had no problem with this lesson, since I had struggled with boundary issues when my sister was dying and a woman we had hired to assist with her care started to feel that she was as close to Carol (or perhaps even closer!) than we were.
We were also repeatedly instructed about confidentiality and never speaking about what happens in hospice with other people. What wee weren’t really prepared for is how to be when we know one of the people who is admitted to the residence.
As someone who lives in the same neighbourhood as the hospice where I volunteer, it’s perhaps inevitable that people will be admitted with whom I am familiar, whether as neighbours, colleagues, or local activists. When that has happened, I’ve made a mental note in my mind, mostly by way of acknowledging the sorrow and loss they must be facing. I make a point of not indicating I’m familiar with them, out of respect for their privacy and the tremendously challenging circumstances they are facing. I hold them in my heart, and continue with my work both inside and outside of hospice.
A while ago, a woman was admitted with whom I had more than a passing acquaintance. We had been colleagues once upon a time, members of the same neighbourhood, and friends of friends. I was saddened to see that she had been admitted and wondered how I should be. Should I avoid her room as much as possible out of respect to her privacy? Or should I go and greet her and help make her feel welcome?
I chose the latter option, as I knew in my heart it was the right one. I knocked on her door, came to the side of her bed, and said something like, “I’m sorry to see you here – though I’m glad you can be here.” She asked how long I had been volunteering and I told her. And she told me what a wonderful place it was. We spoke for perhaps five minutes, then I left her to rest while her family went to lunch.
For the rest of my shift, family and friends visited her, and I steered clear except to respond to the call bell.
The following week, as so often happens when someone decides to come to hospice, she was much weaker, and a note in the book indicated that only wanted to see her family. Despite my desire to go in and say hello, to offer my “expertise” or “wisdom,” I knew that was much more for my own needs than hers and I resisted.
This is often the litmus test for me when I am facing such a decision at hospice. I ask myself this question: “Are you going to see the resident (or say this brilliant thing) because it will support or help them? Or are you doing it because of a need of your own? To feel helpful and needed. To be validated in some way. To feel connected.”
I really do ponder those questions before going to a room or saying or doing something, especially as a patient nears death. Most of the time, the answer is that I can be of service to the patient, whether by sitting at the bedside when they are alone or singing songs or reading the Bible (or poems or any book that’s evident in their room). And I can feel certain that I am not breaching any boundaries and getting myself “in trouble.”
It’s inevitable that we will meet people we know in the hospice work that we do. Indeed, in rural hospices and small communities, it is unavoidable. The important thing is not that we avoid people we know or pretend we don’t know them. Rather it is respecting the honour and privilege we have been given in being able to accompany people when they are dying. Sometimes that means doing the dishes or making up beds or getting more ice to make ice chips. And sometimes it means making space for family members (supporting them if we can) and respecting their time with the person they love.

Katherine Arnup is a writer, life coach, speaker, hospice volunteer, and retired Carleton University professor. She writes about matters of life and death on her blog at  Her book about caring for her sister and her parents as they were dying – “I don’t have time for this!” A Compassionate Guide to Caring for Your Parents and Yourself – is available online at Amazon and Chapters and at independent bookstores in Ottawa.

Wednesday, 10 August 2016

What Happened When Neighbors Heard a Senior Couple Weeping

A conversation I had a couple of years ago has remained vivid in my memory. My colleague came into work one day looking upset and wan. I asked him what was wrong and he told me that on his morning walk, he heard an old woman crying and calling out the window for help. He stopped and asked the lady what was wrong. She explained that her husband had recently passed away and that she was confused, anxious and very lonely. Weeping, she explained that she didn't know what day of the week it was.

My friend calmed the woman and eventually caught his morning train into the city. As he told me this sad story, he shook his head saying, "We used to take better care of older people. Where are the families? Where is the community?" I touched my friend's hand, reassuring him that he had been there for his neighbor that morning. He had stopped to chat and he had been kind.

This week I came upon a similar story that transpired in Italy - an elderly couple were overhead crying by their neighbors. This time, the neighbors called police.  The officers investigated and discovered no crime, only a very sad and extremely isolated elderly couple. Apparently it had been months since anyone had visited. The officers decided to act. They found some pots, pans, pasta, butter and cheese. They cooked.

You don't have to be Italian to know that cooking and sharing a meal deepens and reveals our shared humanity. It is a primal act of friendship.

We all have the opportunity to reach out a hand, spend a few minutes listening and perhaps share a home-cooked meal. And we can give this opportunity to others by asking for friendship when we need it, too. If you are a caregiver who feels lonely or you know someone who needs company, share this story. Kindness begets kindness.

Monday, 1 August 2016

Caregiver Stress Eating Never Satisfies

I remember when Nicholas was young and in the hospital most of the time. Many times, his life hung in the balance. Jim tagged teamed shifts in the hospital when he could, but being the unemployed parent, I did most of the bedside care. And the worrying. And the eating.

Because we were 'lifers' at our local children's hospital, I had a free meals punch-card for the cafeteria. A fold-out chair by Nick's hospital bed was where I 'slept'. I remember thinking "Well, if I can't sleep, I might as well eat. If Nick gets worse this afternoon, I better eat more this morning. I'd better stock up on energy now if I have to skip meals tomorrow." I ate everything on my plate and more, and I ate it quickly.

I don't remember gaining that much weight, but that was only because of tall and slim genetic traits on my Dad's side. I wondered whether just staying awake and worrying most of the time burned just as many calories as working out at the gym.  Despite consuming much more than my usual food intake, I never felt full or satisfied.

Caregiving is a minefield for anyone prone to self-medicating anxiety with their favorite foods. For me, it was carbs. Three meals a day of bread, potatoes and rice dishes were what my brain told me I needed.  Intuitively, like a front-line soldier, I ate like I was gearing up for a battle that might break out any minute.

Here's my advice for caregivers who fall prey to these unhealthy eating patterns at times of extreme stress or even during long periods full of hyper-vigilance and boredom:

Remember, stress eating leads to mindless eating. Gobbling down lunch as fast as possible leads to a big meal being consumed with little memory of it afterward.

So, take a smaller portion. Come back for seconds or another course if you are actually still hungry.

Take small bites.

Chew slowly and savour tastes. Mindful eating experts recommend chewing each bite 20-40 times!

If you are with a loved one in the hospital and can't take the time away from the bedside to eat slowly, get your food to take away and eat in or near your loved one's room.

Don't go online during meals (this is a temptation in the hospital or whenever you are dining solo).

Be aware of your anxiety and have a few calming, personal non-food strategies up your sleeve - ones that you know work. Perhaps squeezing a stress ball (I relied on the old fashioned children's toy Silly Putty) or sipping a cup of herbal tea will quell your nerves enough to replace a craving for food.

This is not about dieting - it's about understanding what triggers everyone to overeat under times of great stress. It's a natural reaction to the flight or fight instinct that kicks in when someone we love is in crisis. Mindful eating as an alternative to overeating is one way to introduce a little bit of control into a caregiving situation that feels chaotic.  And it will keep you healthier and stronger in the long term.

Thursday, 28 July 2016


How many caregivers feel 'less than' and employable after their caring responsibilities are over? As a caregiver activist, I write a lot about how society should value us and our role in society. I write about caregiving as a civic contribution and a public good. But what does that actually mean? How can we persuade others that what we do is important and valuable? How can we convince employers that our skills are transferrable to the workplace after our caregiving roles have ended? 

"It's high time that someone wrote a CV for caregivers", I thought. So, here it is. I created a fictional caregiver who spent eight years caring for an elderly mother suffering from Alzheimer's. Feel free to use this language in your own CV and share with other caregivers who would like to leverage their experience at home to scale up their employability, their social value or just their self-esteem.

The Caregiver CV


Telephone and email



For the past 8 years, I have cared for my mother at home. My mother suffered from Alzheimer's Disease and over time, became increasingly frail and medically complex. Six months ago, she passed away peacefully. The challenges and rewards of this caregiving role have increased my skills set in a myriad of ways. I am a creative problem solver, a brave but polite speaker, and a person who is committed to being a team player. My leadership style is strong and compassionate. I mitigate risk and seek solutions to challenges that work for everyone.


Human Resources: I have managed teams of paid home care service providers from various agencies. I have written training manuals about how to care for my mother, provided hands-on training and supervised where necessary. I have managed complex schedules of care and facilitated communication among the team using online care management tools. I have acted as a 'translator' for my mother, interpreting her needs and preferences to less familiar care providers and members of the wider community. 

Financial Management: I have created financial management systems to pay care providers while ensuring that my mother's financial assets are stewarded carefully. As Power of Attorney, I was responsible for all banking and financial matters relating to my mother including bill payment and investment management. 

Strategic Coordination: I have acted as the bridge between institutions, doctors, insurance, and community providers on a wide range of issues related to my mother's care. As my mother's 'corporate memory', I had responsibility for record keeping and sharing between medical professionals. 

Advocacy: As a solutions-based advocate for my mother, I forged and sustained good working relationships with key allies at my mother's insurance provider. I utilised best practice business strategies in order to win important battles for funding my mother's care needs.

Research Skills: I am a highly efficient researcher. Over the past 8 years, I have honed my research skills using online tools to locate hidden assets in my community, to utilise online discussion forums for information gathering and to broaden my caregiving knowledge bank.  

Information Management: I created filing systems (both online and offline) for ease of tracking and following up all issues related to my mother's complex care. Quick ease of access to key information was a vital aspect of effectiveness in my caregiving role.

Work Ethic: As someone who has the experience of being responsible 24/7 for a loved one, I have a very strong work ethic. I am cause oriented by nature and in my practice. The longevity of my caring has taught me how to sustain my own health and wellbeing in a responsible way. I have learned to stay strong through regular exercise and through the benefits of my personal support networks of family and friends.

Add your educational and professional qualifications, but remember that your caregiving skills and knowledge are just as important. Prospective employers are looking for loyal, smart, creative problem-solvers. Caregiving over time demands real and substantial personal growth in these areas.

And if you haven't done so yet, consider ordering business cards, even if you are not yet looking for a job outside the home. Handing a 'family caregiver' card to your loved one's specialist or any other professional will up your game. And they won't forget you - family caregivers are WORTH remembering!