Sunday, 23 October 2016

Lessons I've Learned From a Life of Caregiving

Here's a short video of me reflecting on lessons I've learned from a life caregiving. Share the lessons you've learned in the comments below - I would love to listen and learn!

Thank you to my talented brother in law Frank Opolko for producing this video!

Tuesday, 18 October 2016

When Long-Term Caregivers Tell Their Stories, Outcomes Improve

Arthur Kleinman understands families like mine.  I know he does, because he wrote this:

The chronically ill (and their caregivers) often are like those trapped at a frontier, wandering confused in a poorly known border area, waiting desperately to return to their native land.  Chronicity for many is the dangerous crossing of the borders, the interminable waiting to exit and reenter normal everyday life, the perpetual uncertainty of whether one can return at all.  To pass through this world of limbo is to move through a “nervous” system, a realm of menacing uncertainty.  

For some the passage is not so difficult; for others it becomes routine like so much else in life; yet for others it involves despair at being stuck in a place one has come to hate and fear.  This image should also alert us to the social nature of chronicity: the entrance and exit formalities, the visas, the different languages and etiquettes, the guards and functionaries and hucksters at the border crossing points, and especially the relatives and friends who press their faces against windows to wave a sad goodbye, who carry sometimes the heaviest baggage, who sit in the same waiting rooms, and who even travel through the same land of limbo, experiencing similar worry, hurt, uncertainty and loss.  Social movement for the chronically ill is back and forth through rituals of separation, transition and reincorporation, as exacerbation leads to remission and then circles back to worsening and so on.  (The Illness Narratives, 1988)

The loneliness that Kleinman describes comes from the feeling that everyone else is living a different, 'healthy' life. And no one has stopped to truly understand the experience of longterm illness and caregiving.  Luckily, Kleinman has offered some thoughts on re-imagining the way in which professionals care for the vulnerable and their families.  He begins by suggesting a major transformation of training for health professionals and proposes a new methodology that is rooted in ‘empathetic listening, translation and interpretation’.  The practical steps in building this new professional training would begin with recording a ‘mini-ethnography’ or life history of the patient and his or her family.  The neurologist treating my son’s first seizure would have discovered in my life history that I had been traumatized as a teenager by witnessing my father having a post- stroke seizure while the two of us were alone at home.  I was almost immobilized by fear when I realized years later that Nicholas might have epilepsy. 

Next, Kleinman proposes ‘the explanatory model followed by negotiation’.  Once a professional understands the lived experience of a person requiring care, he or she can converse with the patient and family to compare understandings of the illness, the treatment options and how to agree on a course of action.  Everyone in the room might answer questions such as “What do you think is wrong?  What caused it?  What do you want me to do?  What do you think will happen if you have this or that treatment?”  Of course, no one is going to take time to build consensus in this manner if there is an emergency situation, but in chronic care, consensus is critical to minimizing regret, frustration or anger over the long term.

Finally, Kleinman proposes a process of ‘remoralization or a process of medical psychotherapy’ for doctors seeking to be truly helpful to their patients with chronic illness.  He describes a series of appointments wherein patients can discuss their sense of loss; a talking therapy moving the patient from grief to restitution. This process, as Kleinman describes it, isn't about talking therapy instead of practical healing. Not at all. It's about doctor and patient/family coming to a place of shared understanding so that informed decisions for healing can take place.

If I could, I would make it mandatory for all student doctors to complete a rotation in community medicine.  For all doctors to have the experience of visiting homes and observing the real lives of patients living with chronic care conditions would go a long way to achieving Kleinman’s ideal of empathetic listening and understanding the life histories of patients and families. 

Arthur Kleinman wrote “The Illness Narratives” in 1988.  There has been a lot of water under the bridge since then – that was the same year that my son Nicholas was born with severe disabilities.  Since 1988, much has stayed the same and much has changed, some for the good.  Consider this pearl of Kleinman’s wisdom:

The study of illness meanings is not only about one particular individual’s experience; it is also very much about social networks, social situations, and different forms of social reality.  Illness meanings are shared and negotiated.  They are an integral dimension of lives lived together.  Had we examined work settings, schools or other of the major institutions of society, we would have arrived at the same point.  Illness is deeply embedded in the social world, and consequently it is inseparable from the structures and processes that constitute that world.  For the practitioner, as for the anthropologist, an enquiry into the meanings of illness is a journey into relationships.

I knew these ideas to be true long before I ever heard about Kleinman and his work.  I allied myself with the work of the PLAN Institute and with the innovative social network coordination tool, Tyze.  These entities were created in order to create social support networks around vulnerable individuals, but also to allow professionals, patients and their families to share information, listen empathetically and to negotiate treatment plans by engaging in one, ongoing ‘real life’ conversation about care and treatment choices.

Can it ever be possible to have a de-medicalized model of social, community and family based medicine for long-term care patients including the elderly and their families?  I think it is and Arthur Kleinman has given us a very good place to start. 

Thursday, 13 October 2016

The ABCs of Making a Will Online

Today, I'm pleased to host this guest post by Sarah Smith, not least because I know how important it is to have a will if you are a disability parent, but also if you care for an elder. Everyone needs a will. Sarah is a small business owner, and is currently learning about marketing, using the internet. Aside from working on her own business, she likes to use social media, and read travel books.

Everyone should have a will whether it's parents of a child with disabilities, homeowners or the elderly who might need help with the process. People without significant assets still need a will if they'd like to distribute their possessions to certain family members. In some cases, the creation of a will might require wills and estates lawyers if it's a complicated process.

How to Make a Will Online
For a few dollars, it's possible to create a will online with the help of software and a last will and testament form. It'll help you fill in the blanks and walk you through a questionnaire to figure out how to distribute your money and belongings. The will can also cover who will take the children in the event both parents pass away in an accident. It can cover retirement accounts too.

Calculate Your Assets and Possessions
Consider the items you'd like to give to certain family members or items that you'd like to donate to charity. You don't have to have millions of dollars to distribute among heirs. If you'd like your nephew or granddaughter to receive certain items after your death, your will can detail those precise distributions even if you make a will online.

Choose Your Heirs and Executor of Estate
Most of your jointly-held assets will automatically revert to the spouse, but with some couples not being married, it can get slightly more complicated. If one person owns the house, that house may go to the next of kin, which could put the significant other in a precarious position. A will helps to make these kinds of arrangements clear after you are deceased. Along with the heirs to your money and property, you can choose an executor of your estate for heirs that are under 18 years old.

What is an Executor?
When you are leaving money to a child, that child will have a guardian. You will likely be leaving the child with a relative or other trusted person after you pass, and that will be detailed in your will. You can assign this person as executor of your child's estate too. This lets them access money for the care of the child. It might also hold money back from the child until they hit a certain age.

Witness to the Will Signing
When it comes to making a will legal, you have to print it out and have it signed by a witness. Most wills require two witnesses or a notary public who will verify that it was you signing the will. It's better to have a separate party who isn't receiving any money or assets sign as a witness to your will. It's less complicated.

Hiring a Lawyer
There are times when it makes more sense to hire a lawyer to help draft the will. A simple will online can be great for most people, but if you have a complicated situation you might need a lawyer. For example, the situation may involve stepchildren, children from previous marriages, assets like a family business and various pieces of property. With these complicated scenarios, a lawyer can navigate estate law to craft a will for you.

Have a Will Versus Passing Without One
Dying without a will means that state laws decide who will get all your assets. It could go to your spouse in most cases, which can be complicated if you have children from a previous marriage. The custody of the children can be up in the air until a judge makes a decision, and that person may not be ideal.

It's important to be prepared and have a will even if that will is a simple one that you crafted yourself online. It'll allow you to designate your heirs and distribute your money and property. It'll also dictate custody of your children instead of letting the state decide.

Friday, 7 October 2016

How To Help Your Loved One With Alzheimer’s Stay Safe In The Home

 Guest Post by Paul Denikin: Paul enjoys working on DIY home repair projects. He is passionate about sharing his experiences working on DIY projects through to benefit people with special needs children.

Photo via Pixabay by Julim6

Alzheimer’s disease affects different people in different ways, and while it can eventually cause the person it affects to lose independence, it’s important for them to retain as much of their lives as possible. That’s why many families bring their loved one into their home in order to make sure they get the best care possible and to keep them comfortable, but there are many things to consider before doing this. It’s understandable to want your loved one to be able to do some things for themselves, but it can’t be at the risk of their safety.

The best way to begin is by walking through your home, inside and around the perimeter, and look at it the way the parent of a young child would. Look for potential hazards and dangerous items; is there a steep stairwell, or a basement full of sharp tools? Are there doors that need to remain locked or dimly-lit hallways that might cause a fall? Start there and move onto larger things. Here are a few of the best tips for making your home a safe and healthy place for your loved one.

Take their physical health into account

Alzheimer’s disease can lead to vision problems, such as a decreased ability to see contrasting colors and light. For this reason, it’s a good idea to help your loved one find the things they need easily throughout the house by painting walls dark colors. For instance, painting the wall behind the toilet a dark shade of blue instead of leaving it white.

Because their memory will likely be affected, it’s also a good idea to help them find their way around easily by posting photos on the doors. Reading text may prove difficult, so seeing a picture of a toilet or bathtub will help them figure out which room is the bathroom.

Check walkways

Hallways, stairs, and the most-used living areas need to be checked for clutter and trip hazards. This can include loose carpeting or rugs, toys, furniture, or loose floorboards. It’s also imperative to make sure all parts of the house are well-lit, as this can prevent falls as well.

Secure the doors

Make sure all doors to areas that don’t need to be accessed--sheds, garages, rooms with weapons--are securely locked at all times. You might even consider installing motion sensor alarms so you always know which doors are being accessed and when.

Make bathrooms comfortable

Soft, non-slip mats are perfect for the bathroom, both on the floor and in the shower. Install a shower chair and hand rail to ensure your loved one will stay safe while bathing, and lock up medicines and sharp instruments.

Check alarms and appliances

Make sure all smoke alarms, carbon monoxide detectors, and fire extinguishers are in good working order. If you have a gas stove, consider installing a shut-off valve in the kitchen and make sure the stove’s knobs are removable.

Making one’s home accessible yet safe for an Alzheimer’s patient can be overwhelming, but if you look closely at what your loved one’s needs are and apply them to your home, you’ll be able to make a comfortable space that won’t cause stress.

Tuesday, 4 October 2016

The ER Caregiver Effect

There’s a tourist attraction in my city of Ottawa (Canada) called The Crazy Kitchen. It’s a room in the National Museum of Science of Technology that’s designed to demonstrate the effects of optical illusion on the mind and body. Entering the Crazy Kitchen is like walking through the doors of a house of mirrors at the funfair.

I feel like I’ve spent the last week off kilter. That’s because I’ve been in the hospital emergency room with my Mom. She had a respirator emergency and needed aggressive steroid and antibiotic treatment. Thankfully, she’s better now and back at home with support from paid helpers and from our family.

Beginning with a phone call in the middle of the night, a loved one’s health crisis is disorienting. Long hours in a windowless emergency room erase the distinction between day and night. Cries of pain or loneliness become ‘normal’.

What I did notice in Mom's ER was the difference that family members made in the comfort of patients who are suffering. As my Mom snoozed, I sat beside her watching a tiny, smiling Asian woman walk the hall, steadied by a rolling IV pole and her daughter’s arm. The diminutive woman stopped to smile and nod at each of her fellow patients as she passed. Then she would look at her daughter, take a deep breath and begin her hallway trek again. Once, I saw the daughter put her arm around her Mom and kiss her gently on the forehead.

I smiled watching the beautiful scene of mother-daughter devotion but was distracted by the sound of tapping on metal nearby. I rearranged the curtain around Mom’s bed and found the source of the tapping. It was an old woman in the bed opposite. Her manicure was recent and her nails were perfectly rounded and painted fire engine red, but palsy caused her hands to jump on the rail rhythmically. It was her beautiful nails that tapped out the beat of pain on the metal. Later, I heard her tell a nurse that she had no one in the world. No one.

Families make a difference. I know I did for my Mom. Hours before my arrival from another city, she’d been with my sister in the crash room, getting emergency assistance for acute respiratory distress.  My sister and I tag team in Mom's care. Now, Mom was still breathless with any physical effort, but mainly we were bored. We decided to play “tell me something funny that you did and that I don’t know”.  So Mom began, “I don’t think I ever told you about that time I was driving with all my friends and I got a speeding ticket. But that’s not the story. We were all laughing and joking – I was about 20, something like that. So this police officer pulls us over and boy, was he good looking! He was gorgeous! So he said, “What’s your name, Miss?” and I said, “Never mind my name, what’s YOUR name? And how about your number, too?”  We had a good laugh together about that story – my Mom is very funny and she’s a rebel with no filter!

I thought about illness, suffering, love and time spent waiting. I thought about the meaning of abiding, of remaining with someone and offering small comforts. I thought about how very big that really is.

I feel disoriented and off kilter because I've lost sleep and I've been so worried about my Mom. But I'm coming back to myself now that the crisis has passed. And I'm glad that we weathered this latest storm together as a family.

                                (This is some of our family with Mom a couple of years ago. Mom turned 94 on her last birthday, December 24, 2015.)

Wednesday, 14 September 2016

On Embracing Change

We're moving. Today. Four strong men pulled up in an enormous truck this morning and right now I can hear them talking quietly and gasping as they haul sofas and tables down the hall.

We bought this house in 1991 just before Natalie was born. Nicholas' main floor bedroom and wheel-in shower made this an easy environment for our kids to be closely observed, but not crowded. Natalie came home for lunch every day with a chattering group of her classmates and they spread their sandwiches out on the big kitchen table. I eavesdropped on their gossip as I hovered at the sink, pretending to be invisible.

Nick often had friends over after school to play video games or do homework. This house, across the street from the school, was a hub for after-school activities with snacks for friends whose parents worked late. Friendships bloomed.

One year, Jim built an ice toboggan slide on our sloping front lawn. He sculpted piles of snow with buckets of hot water to craft a shiny, rock hard surface that curved and slanted to form a short but fast run. This is our front garden in the winter - not much space for an ice slide, but Jim managed it. Sometimes the kids tumbled off the sled into the hedge, but they escaped laughing and unscathed.

Nick's school across the street has a large parking lot and playing field where we spent many after-school hours playing. In the summer, Natalie attached a skipping rope to link Nick's wheelchair and her bicycle. They set up a slalom course on the tarmac and had hilarious obstacle races. In the winter, we got bolder and tied Nick's recumbent sled to our dog Goldie's leash. Then we threw a tennis ball. Woosh! Off they went across the snowy field, Goldie barking and Nick screeching in delight.

Of course, I remember Christmases here.

We have happy memories in this house, but some painful ones, too. Nicholas experienced his most difficult struggles with pain here.

It's bittersweet to leave, but I am excited for a new chapter in the life of our family. We've bought a new house in the countryside just outside of Ottawa and still close to Nick and to my Mom. Just a short distance away, we will be in the woods with a babbling creek in the back garden. Our latest purchase is a 'bear-proof' garbage storage bin. Nick makes his first visit this weekend and I'm hoping that Natalie will be home for Canadian Thanksgiving. I don't know what our new life will be like exactly, but one thing I can guarantee is that the fall colours will be gorgeous.

Saturday, 10 September 2016

When Caregiving Feels Like War: Learn From the Military

The other day, I was listening to a banker talking about the volatility of financial markets.  She used a term I hadn't heard before - VUCA.  It's a military term used by forces in Iraq and Afghanistan and it stands for 'Volatile, Uncertain, Complex and Ambiguous'.  "Wow", I thought, "that sure sounds like my life!"
So, I googled VUCA and found a website about using military lessons learned for corporate leadership.  And my intuition didn't steer me wrong - these lessons really are absolutely relevant to caregivers.  Because our world is always volatile, uncertain, complex and ambiguous.

  • Always retain a clear vision against which judgements can be made, with agility to flex and respond appropriately to rapidly unfolding situations. (Yes, we do that every day.)

  • Provide clear direction and consistent messaging against a backdrop of continually shifting priorities, supported with the use of new virtual modes of communication where necessary. (We practice this with our paid helpers, with doctors and with members of our extended families. And we use technology to help us communicate our changing needs.)
  • Anticipate risks but don’t invest too much time in long-term strategic plans. Don’t automatically rely on past solutions and instead place increased value on new, temporary solutions, in response to such an unpredictable climate. (This is an interesting one and difficult to achieve. Again, it's about agility, employing the benefit of our experience, and always looking for something new that responds to the NOW.)
  • Think big picture. Make decisions based as much on intuition as analysis. (Caregivers could give the course on this!)
  • Capitalise on complexity. If your talent management strategy is working, then you should be confident that you have the right people in the right place. This will enable you to rapidly break down any challenge into bite size pieces and trust in the specialist expertise and judgement of those around you. (Easy to say, hard to achieve. The caregivers we most admire do this well. They take complex situations and break them down, then work efficiently within a team.)
  • Be curious. Uncertain times bring opportunities for bold moves. Seize the chance to innovate. (Imagination and the drive to get things done quickly and easily makes caregivers natural innovators.)
  • Encourage networks rather than hierarchies – as we reach new levels of interconnection and interdependency collaboration yields more than competition. (Absolutely! We are all interdependent and never more so than in caregiving families.)
  • Leverage diversity – as our networks of stakeholders increase in complexity and size, be sure to draw on the multiple points of view and experience they offer. Doing so will help you expect the unexpected. (I love this one! In my family, we have all been so enriched by relationships we've had with our paid help from different cultures. Even ageing and disability as examples of diversity in my family have enabled us to explore new territory of human experience.)
  • Never lose focus on employee engagement. Provide strategic direction, whilst allowing people the freedom they need to innovate new processes, products and services. (This goes for working with members of extended family and with helping friends, too.)
  • Get used to being uncomfortable. Resist the temptation to cling on to outdated, inadequate processes and behaviours. Take leaps of faith and enjoy the adventure. (This is the zinger. What a nugget of good advice for caregivers!)