Thursday, 23 March 2017

DINING WITH DYSPHAGIA - FREE COOKBOOK!

I receive lots of requests to post about care-related projects, companies or products. Sometimes a request comes in that I just LOVE and this is one of those.

Dining With Dysphagia is a cookbook with a difference. All the recipes are designed to entice the palates of anyone who has difficulty chewing or swallowing (the medical term is Dysphagia).

Three of the reasons that I especially love this online cookbook are that 1) our son Nicholas has dysphagia and is mostly tube fed, but he eats for pleasure, 2) I love to cook and 3) best of all, the book is a free download! The added bonus is that the recipes look delicious for anyone. That means the whole family can dine together and enjoy food, safely.

The authors of this book are students in the NYU's Online Master of Science Program in Speech-Language Pathology.  And this is what they say about their project:
Food is something that everyone should be able to enjoy.


So when it comes to food that is both appetizing and accessible, good eating shouldn't be limited to highbrow foodies. This was the premise for the NYU Steinhardt Iron Chef Dysphagia Challenge, a competition during which contestants prepared food for judges to identify recipes that maximize nutrition, texture, and taste for people with dysphagia (chewing and swallowing difficulties). The event was inspired by an intersession class that brought together NYU graduate students from the nutrition program and the communicative sciences and disorders program to learn how to manage the needs of clients with different stages of dysphagia.

"Food is nurturing, and too often it's assumed that when someone is sick, we should just give them calories and nutrients. That's not what food is, and we wanted to emphasize in this intersession class that regardless of a medical condition, we should always think about the importance of food – especially when someone's sick," says Lisa Sasson, clinical associate professor in the Department of Nutrition, Food Studies, and Public Health at NYU Steinhardt.
Now, "Dining with Dysphagia: A Cookbook" makes the winning recipes from the Dysphagia Challenge competition accessible to all. The recipe book outlines eight easy-to-follow and easy-to-swallow recipes.

While the recipes were evaluated for the overall joy of eating good food, the judges also took into consideration that dysphagia clients come from different cultural backgrounds. Diversity in ingredients and balanced tastes should be enjoyed by everyone — even those with chewing and swallowing difficulties.

Each year, the simple act of eating becomes a serious challenge for millions. Older adults are disproportionately affected, but dysphagia can become a challenge to just about anyone, including those with diseases such as Parkinson's, head and neck cancers, AIDS, and many more. Caregivers, hospitals, and families caring for those with dysphagia prepare pureed foods in order to meet nutritional and medical needs. Unfortunately, they all too often find that the food is unappetizing and doesn't take into account cultural food preferences. Likewise, a minimal focus is placed on aesthetics; these foods are often presented as "mushy."
"Food should always nourish the body and soul," continues Sasson, and "we should never assume that because a patient has swallowing problems that their food choices will be limited to pureed mush."

Saturday, 18 March 2017

3 Joyous Ways to Celebrate Ourselves and Our Moms

Thank goodness for technology! Yesterday I was able to chat from my front porch in Cat Island, Bahamas, with a new friend who lives in rural Wales. Francesca Cassini is the founder of the Silver Tent, 'An Online Community for Wise, Wild Women Over 50'. We talked about what we (older women) have learned in our lives, what we've achieved and what we dream to do in the future. Francesca's idea is that together, we can support one another to find meaning and purpose in our lives as we learn from wise elders. The Silver Tent is a tangible way to celebrate the lived experience of older women and help us to nurture intentionality in our lives. I said this to Francesca: Much of what we know as women comes from our caring. Love is at the heart of our families, our friendships and our passion for creating work-around solutions to any manner of challenges. The Silver Tent has a free online summit coming up on April 22-30. If you are housebound with your Mom, listening to the range of fascinating speakers will be fun to do together! I registered and I hope to 'see' you there!

"You’ll find a rainbow of resources in the Silver Tent community to support you in making this phase of your life the most meaningful, the most powerful and the most celebratory." Francesca Cassini


Another terrific resource celebrating the contributions of older women is the UK based Gransnet. There's a wealth of information on every topic you can imagine relating to being a Grandma. Plus, there's an active forum with many topics of interest - check it out! Interestingly, my friend Geraldine Bedell created Gransnet after working as a content editor at Momsnet. She recognized that 'Grans' or older women had a contribution to make together with opinions to be heard. We will speak and we will support one another! Many of us are over 50 and looking after our own elderly parents. I'm one who fits into that category. This is a great site to peruse together with an elder parent.

Another group of senior women who are bubbling over with purpose is The Stephen Lewis Grandmother Campaign. One quick look at this organization will tell you that members helping 'sisters' in Africa are bonding with shared purpose and they're having a great time getting to know each other and their counterparts in the developing world. We ALL have much to learn from one another.


These are three associations that we can participate in with our elder Moms. Together, we can find shared purpose and meaning in our caregiving experiences, our wisdom and our womanhood.

Wednesday, 15 March 2017

SURVIVAL SKILLS FOR STRESSED OUT CAREGIVERS

This is a reprint of a post from a couple of years ago. I think it's worth publishing again, because the lessons about stress management from First Nations peoples are so helpful.


I've just come from our family cottage in the north woods of Quebec.  It's peaceful there - a place for reflecting and remembering.  My Nana built our cottage in the 1920s and my memories are of her making my toast on the woodstove with the sunlight dancing through the wood-framed window.


But the woods can be scary sometimes.  Once, I got lost.  I went for a walk by myself and followed a path I didn't know.  I was surrounded by unfamiliar wild meadows and swamps I had never seen.  Just the birds were my company and suddenly, I felt afraid.  It took me four hours to find my way home.  A caregiving life can be like that.  One day, everything seems normal and calm.  Suddenly with a new diagnosis, we are lost without a guide.

Recently, I heard a wilderness survival expert on the radio.  Caleb Musgrave is an aboriginal Canadian who runs a company called Canadian Bushcraft.  He teaches professionals how to survive in the wild.  Apparently, these skills easily translate to the chaos of trading floors and the frenetic pace of high tech startups.  I sat down and began to listen more intently, thinking, "maybe there is something here for caregivers."

At about minute 23 in this episode of Definitely Not the Opera on CBC Radio, Caleb Musgrave offers his advice on how to move forward when things go terribly wrong.  "Survival in all environments is all the same thing.  It's 90% psychological.  It's all about how your mind deals with certain stresses at certain times."   When circumstances become hellishly hectic and challenging, Musgrave insists that in order to survive, you need to slow down and process what's happening.

So, what's Caleb Musgrave's secret to survival?  It's the process called STOP - Stop, Think, Observe, Plan.  Stopping is the first key element in Musgrave's stress survival training.  "Breathe, perhaps drink some water - your brain functions better with water,"  he advises.  Observe the situation.  What are the stressors?  Look around to see what might help you in your situation.  Then, plan.  "Do I ask someone to help me?  Can I manage this situation on my own?" Musgrave says that asking oneself all these questions helps to alleviate stress and lay the groundwork for helpful action.

Our aboriginal cultures can teach us many valuable lessons about family, survival and resilience.  This week, our family will be trying to get to the bottom of our son's recent symptoms of pain and seizures.  Just before we visit the neurologist on Wednesday, I'm going to stop, think, observe and plan.  Wish us luck.

Post-script: We did get to the bottom of Nick's pain and seizures. We changed medications and recently, we got a new and better wheelchair. Today, Nick still has pain if he sits too long. If he gets very excited at an event such as a hockey game, he'll be sore the next day. He'll always have a couple of short seizures overnight, but as long as they're not prolonged, we don't worry. I'm happy to report that at the moment (touch wood!), Nicholas is happy and healthy. 

Friday, 10 March 2017

Drawing Personal Boundaries in Caregiving



There's a ton of messaging out there for caregivers that sounds like this:

Make time for yourself!

Plan respite!

When it's all too much, just say no!

Doesn't it all sound so easy? And if we feel exhausted and happen to mention that to friends or family, those messages echo around in the conversation berating us for not managing our own wellbeing more efficiently.

The fact is, walking away from a child with autism who is in meltdown is not a responsible option. Respite may not be affordable or it may be more bother than it's worth to arrange. Just say no to someone who needs help to feed himself? Not going to happen.

So how can we draw boundaries around what we do for our loved ones so that we maintain a sense of self, we protect our health and we find joy in our day even as we face challenges?

Here are some of my ideas - I would love to hear yours, too.

1)  Care for yourself as you care for others. If you make your loved one a cup of tea, make one for yourself. If the sun is shining, go to the window and look outside. GO outside with your loved one whenever you can. Nature heals. Put on music and dance together.  Look through old photos. These practices require discipline and the determined decision to find joy individually AND together at home. Placing yourself in the shadow of the person you care for can become a habit. "I'll do something for myself at the end of the day when this is all over" is a terrible mantra, because it doesn't work.

2)  Yes, I can help you, but a little later. Not right now. Parents of young children know this trick. Not every need or desire of our loved one requires immediate action or attention. Some things can wait. Exercising this prerogative to WAIT when it's sensible to do so give us real options to do something else in meantime. It's easy to allow our stress levels to rise at every request for help. Each call feels like an emergency. It's not, it just feels that way. When a loved one calls for help with something, try answering "Just a minute". Take a second to reflect on whether this is an action that you must take immediately or whether it can be postponed or not done at all. There are times when our loved ones can get in the habit of having help with everything even when they retain capabilities to perform tasks independently.

3)  Declare to your loved one that sometimes you're both going to do something of YOUR choosing.  Very often in caregiving, we sacrifice our right to choice because we see our own needs as less important than those of our loved one. If your loved one wants to go shopping and you prefer visits to museums, declare that once a week, you get to choose the outing destination. The same principle applies to exercising choice over TV shows and music. Having care needs doesn't equate to the right to choose how we live our lives outside of caring.

I would love to know strategies that you've tried in drawing personal boundaries in caregiving!

Tuesday, 7 March 2017

Happy Intl. Women's Day All You Caregivers Out There!

Caregiving isn't only women's work, but it's largely women's work. So today, March 8th 2017, I wish you all a very happy Intl. Women's Day.

My message to you is: I SEE YOU. I FEEL YOUR WORRY AND YOUR FATIGUE. TOGETHER WE ARE STRONGER, SO LET'S SPEAK UP ABOUT OUR WORK. IT IS WORK.


Friday, 3 March 2017

The Ancient Wizardry of Caregiver 'Touch'



When Nick was very small and I was cutting my teeth as a disability Mom and advocate, I went to my first family caregiving conference. Two days in another city was respite for me - Jim looked after Nick at home during my short stay away. But some parents brought their small children to the conference. During a presentation by a government minister who was responsible for preschool education, a toddler with cerebral began to cry. All eyes turned to the Mom and her little boy. A white haired preschool teacher offered to take the child so his Mom could relax and listen to the speech. We all watched as this teacher gentled the child's stiff limbs into a comfortable and relaxed position in her arms. He quieted almost immediately. I remember the young mother blowing a thank you kiss to the older teacher.

The government minister paused and looked at the audience. He said, "Did you see that? That is 'the touch'. There are heroes of child rearing in this room", he said, "who have 'the touch' and we have just witnessed one."

Over the years, I've watched and learned from all kinds of wizards skilled in 'the touch'. Some were doctors, some nurses and many were family caregivers or personal support workers. All of them combined kindness with soothing action, creating a kind of alchemy of healing.

Recently, my Mom moved in to a new residence. I realised immediately that I was about to embark on a new journey of learning more about the touch and how it works with seniors. Commitment to deep respect and affection for elders in their care is the ethic of this residence, and it shows.

In eldercare, balancing older peoples' personal freedom with support is tricky. Too many times I have witnessed seniors being treated like pre-schoolers or worse. And the same is true of disability care. I've blogged about that topic previously HERE.

But Mom's best caregivers know how to cajole, soothe, and they know how tell stories as well as listen intently. They serve as invisible helpers making her needs seem less than they are. These clever helpers present the best of my Mom to the world every day. They are the keepers of wisdom in our society; they have 'the touch'.



Tuesday, 28 February 2017

HOSPITALS NEED KINDNESS POLICE STAT!






This is my cyber friend and fellow disability Mom/activist, Sue Robins. Sue is a wonderful writer and regular blogger. I was so outraged by Sue's hospital experience being treated for breast cancer that I had to share her entire post. Read below for my thoughts on how to fix the kindness deficit in our health care system.
NUMBER 51
patient
Me, immediately before I lost my sense of humour.
In my large mom purse, I carry around my high expectations for health care experiences. Being the mama bear of a kid of a disability has taught me a lot over the past 13 years. Now I’ve become a patient myself. Clinically, I know next to nothing about breast cancer, but I do know a boatload about compassion, respect, kindness and dignity.
I know the little things mean a lot. I know it takes only a minute to ask ‘what matters to you?’ I know that patients should have information shared with them in a way that they understand. I know the value of a kind touch and a gentle gesture. I know that hospital processes strip away dignity from already vulnerable patients. I know that what is a big deal for patients is often not a big deal to staff. I know that health care inflicts trauma on patients and that staff and physicians should be working hard to minimize that trauma with every single encounter. Most of all, I know that health care professions are intended to be healing professions, and I’m always disappointed when I bear witness to the contrary.
I had the notion that cancer patients were treated well. I think my tumour has been treated very well – and for that I am extremely grateful. I am also thankful to live in Canada, where inpatient hospital costs are publicly funded, and except for the ‘me not-working part’, our family won’t slowly bleed into bankruptcy like my American friends.  The one thing I’m not sure about is if I’ve been treated as well as my tumour.
Last Tuesday, I had a partial mastectomy, another biopsy and a lymph node removed. So many strange encounters happened that day and I’m not planning on shutting up about best practice in patient and family centred care any time soon. I still believe that the only way change will happen is if we keep speaking up to tell our stories.
My husband and I arrived at the hospital at my appointed time, 6:30 am. The receptionist looked up at me and said sharply, ‘we don’t open until 6:45 – take a number and sit down.’
Like I was ordering deli meat, I took a number and dutifully sat down in the crowded, dirty waiting room. Posters were tacked up slightly askew on the walls and the fear was palpable in that little windowless room. We were mostly women waiting for breast cancer surgery – some alone, some like me, lucky enough to have a partner by their side.
‘Number 51’ they called. I stood up and followed the technician into the treatment room. I know they knew my name, and being referred to as a number set an uncomfortable tone for the rest of the long day.
Later, in a curtained pod pre-surgery, the nurse was assembling the equipment to start my IV. ‘Can my husband come in now? I need him to hold my hand while the IV is started,’ I asked, a confession of my needle fear. ‘No,’ she said, not making eye contact with me. ‘He can come in after.’
I shrunk back into my stretcher, afraid to make a fuss, hot tears forming in my eyes. The IV poke hurt, as did the tourniquet, and I had nobody to hold my hand.
Later, in radiology, wires were inserted in two places in my breast while I’m squished in a mammogram machine. This practice, done while I’m wide awake, is nothing short of barbaric. I hadn’t slept or eaten and was already whacked out with fear. My ears start ringing, my vision blurred, I couldn’t breathe and I knew I was going to pass out. The radiologist and tech stopped and gave me a break before I hit the floor.
‘I’m sorry for being such a baby,’ I said, very Canadian in my apology. Later, the Internet tells me that up to 50% of women feel faint during this procedure. Why doesn’t anybody tell me that so I can be prepared? Why isn’t there standard sedation? I feel grateful that my nurse friends coached me and I knew to ask for an order for sedation at pre-admission clinic. But the little Ativan doesn’t help much with my horror at more needles jammed into my breast and the sight of black wires coming out of my body.
I had counselled my husband on the drive to the hospital to ask the surgeon to talk to him afterwards so he can find out how my surgery went. ‘Okay,’ he says, strong, assertive and protective.
The conversation with the surgeon goes like this:
Mike: ‘Can you come and tell me how it goes after Sue’s surgery?’
Surgeon: LAUGHS and says, ‘Oh no, I’m too busy to do that. There’s a follow up appointment in a couple of weeks.’
(It has been six days and I’m still not sure how my surgery went. I don’t know how to get this sticky glue from the tape off me. I am bruised and scarred.  I have blue dye seemingly permanently tattooed in my skin. My armpit is numb. My steri-strips are coming off. My hand has swollen up. I’m still really sore).*
Back from surgery, the nurse is eager to get me up walking so they can discharge me. I’m in a hospital gown. ‘Can she have a robe?’ my daughter asks, helping me out of bed. ‘No, just tie up the gown,’ the nurse responds. No? I’m cold and shivering and I have no clothes under the thin fabric gown. My daughter shakes her head at the nurse, goes to the supply cart, digs around for a robe and gently places it around my shoulders. My girl walks with me, pushing my IV pole while I shuffle to the washroom.
Another missed opportunity for a simple kindness. What is particularly awful to me is that I know to ask for what I need. My family is not afraid to speak up. But we were all dismissed, disregarded and not listened to in the smallest but most significant ways. I saw many people in the waiting room – what of the woman who was alone?  Or the older lady who didn’t speak English?  Or the woman there for a double mastectomy, her sad husband by her side?
This is random but relevant:  Cleveland Clinic has released another great video about the patient experience. I’d add to their concept of ‘words matter’ that ‘actions matter’ too.
I am very fortunate that my dear daughter (a second year nursing student) stayed with me for the past ten days to be my caregiver. She distracted me, kept me company, fed me, looked after her little brother, drove me around and removed my dressings. Before she left, she gave me a list of Ella Rules to consider. Rule number ten said: Ignore stupid things – let yourself be upset but then let yourself move past it. This is sage advice from a 20 year old who has always been wise beyond her years.
I am not ungrateful for treatment, but I don’t feel grateful for my care. I do promise to go into every new health encounter with an open mind.  As Ella advises, I will endeavor to either politely respond to or shake off negative experiences. For my own mental health, I can’t stew in this darkness. I need to stay in the moment and look for the light.
I’m not Number 51. My name is Sue. I’m a writer, speaker, mom of three, wife to Mike, advocate, friend to many. I like sushi, baths, books and yoga and I happen to have Invasive Ductal Carcinoma. Please treat me as well as you are treating my tumour – for I’m a real, live and still-breathing person too.
*note: I have an appointment with my family doctor today and I know she will take care of me.   This experience has compounded my philosophy about the importance of primary care, even when you are in cancer care and surrounded by a bunch of specialists. Family physicians and family practice matters.
**edited to add:  My family doctor fixed my ratty dressing, printed off the surgeon’s report, explained the contents of the report to me and then gave me a hug.  THIS is what I choose to remember.

So here's what I think we should do about this kind of sad and mean-spirited treatment in our hospitals: we should create KINDNESS SPECIALISTS who teach compassionate care to every staff member of health care institutions. Like sterile procedures and hand-washing, kindness should be evaluated and rated. Those institutions that fall short on a kindness scale should be re-trained. Kindness is as essential in health care as clean environments. Because the absence of kindness at times of great human need can be toxic. It's not hard to be kind. If you are a health care professional, share this post with your colleagues. And speak up if you see a missed opportunity for compassion at work. We are ALL more, much more than just a number.