Saturday, 25 April 2015

News Alert! 3 Great New Films About Caregiving!

This week, I've watched trailers for three terrific new films about caregiving.  I hope these are just the beginning of a new trend in movies and story-telling about giving and receiving care at home.

The first is a feature-length documentary airing on PBS in May (check your local listings), titled Caring For Mom and Dad.  Meryl Streep narrates.


CARE is a Ford and MacArthur supported feature documentary still in the editing suite but coming soon.  The filmmakers need $50,000 to complete the final edits to this important documentary and you can contribute to the Kickstarter campaign HERE, but hurry because the campaign ends on May 16th.

Care TRAILER from Deirdre Fishel on Vimeo.

Finally, let me tell you about a gorgeous short doc ( 40 min.) about family caregiving titled 'Minding Our Own'.

Minding Our Own - TRAILER from STUDIO IGY on Vimeo.

This morning, I interviewed the writer and director of Minding Our Own, Inaya Graciana Yusuf.  Inaya is a young American of Indonesian heritage.  Her maternal grandfather suffers from Alzheimer's disease and is cared for by his wife, Inaya's grandmother, with the direct supervision and help of her two uncles. A few years ago, Inaya's grandparents moved back to Indonesia and when her grandfather's needs increased.  More recently, her parents who live in Indonesia took on the responsibility of caring for them. Growing up in a multi-generational household or living in close proximity with family members in Indonesia is quite standard. Younger generations feel a moral imperative to care for their parents, siblings and close relatives because they are exposed to it constantly.

Q:  What are the key messages in your film?

Inaya:  I wanted to highlight the importance of families staying together when someone needs care.  It's important to show the impact of giving and receiving care on the whole family. In fact, I felt the urgency to indicate that even though caring is not for everyone, it has the potential to enhance relationships.  Giving and receiving care involves empathy and sympathy. I think in families, it pushes the boundaries of intimacy. This film unveils what it truly takes to care for another person.

Q:  What do you think are the differences in attitudes towards family caregiving between your Indonesian culture and that of our culture here in North America?

Inaya:  In my Indonesian culture, caregiving in the family is just a given.  We believe that because our parents raised us, we owe it to them to care for them in their old age. It is a cycle, and it is how one would perceive life.  Here in the States, I believe we have a culture of nursing homes.  Putting an older relative in residential care can sometimes be an 'easy out'.  Of course, this is generally speaking and without doubt because as we all understand, every family situation is unique and not everyone is cut out for caregiving. Not to mention, it all depends on the best possible options. However, I think we need to at least try look after those we love 'as much as we can' at home.  I do think that it is crucial that we need to know our limits as caregivers, too.  Being a caregiver is like being a project manager.  Caregivers need to delegate what responsibilities they can handle and which ones to pass on. Both parties need to learn not to be stubborn about negotiating care. 

Q:  What are the barriers you see to people wanting to give care to family members?

Inaya:  I think it's so easy to back away from emotions.  We distance ourselves from family members and generally speaking, our surroundings - some people live far away from their parents.  I was lucky to be brought up having close proximity with my paternal grandparents in Indonesia, but I also had the opportunity of spending my winters and summers with my maternal grandparents in New York. I was able to experience even the slightest changes and witness how people who love each other can be equally vulnerable... to have 'that moment' of care in a natural environment. At the end of the day, I think it is about breaking down that wall. Every single person has built some type of barrier to shield themselves from emotion. It boils down to human capacity.

Q:  Why did you title your film 'Minding Our Own'?  Are you judging those who do not or cannot 'Mind Their Own'?


Inaya:  No!  Not at all. I think the title itself is a multi-layered experience. I wanted to play with and explore the meaning of those words. 'Our own' could mean 'ourselves' and 'our time' as caregivers too.  That's why I emphasised knowing one's limits as a caregiver and then being able to ask for help and delegate.  As I said before, it is not for everyone. Thus, I wanted to celebrate caring for our own family members at home too and to underscore that care at home has very great value. Caregivers are our modern day superheroes.


Minding Our Own, will be premiering in NYC at The Art of Brooklyn Film Festival, May 15th, 2015 at 6:15pm at St. Francis College, Maroney Theater. For tickets please purchase at: https://www.universe.com/events/minding-our-own-tickets-brooklyn-FKJ7M.


The film will also be showing in Miami, during the Women's International Film and Arts Festival on June 2nd-7th, 2015, exact date and time TBA. To purchase advance tickets, please visit: http://www.eventbrite.com/e/wiff-2015-movie-passes-tickets-15658429785.
On June 2nd, 2015 come find Inaya Graciana Yusuf at Lynchburg, VA during the 2015 Conference on Aging.
Other exciting private, members-only screenings are lined up in partnership with Caregiving.com end of May and TheCaregiverSpace.org mid June. Exact dates will be announced.
Please keep up to date by liking the Facebook page (www.facebook.com/mindingourown), where more screenings and announcements will be released. Our Twitter is @mindingourown.

Thursday, 23 April 2015

Turn Up the Music and Dance - Anytime, Anywhere!

Last week, I turned 60.  I took advantage of the occasion to invite friends and family over for, what else?, a dance party!  Over my years of caregiving, I have learned that celebrating with music and dancing makes everyone feel good.  Dancing makes me smile and birthdays make me feel special and loved.


But there some years when friends and family weren't with me for special occasions.  Many times, I felt in need of some kind of celebration (for no particular reason!) when it was just me with Nicholas at home or in the hospital.  Sometimes Natalie, Jim, and my Mom would be there to join in our spur-of-the-moment parties and sometimes, not.  I remember once, feeling so restless for celebration after a long bout of illness with Nick, that I made a cake, put up some streamers in the kitchen and announced that it was an 'unbirthday' party.  The kids and I sang 'Happy Unbirthday to Us', we blew out the candles and I put the music on for a kitchen dance party.

Listening to music always makes me feel better and almost always, I dance in my imagination to the songs I really like.  Caregivers and their loved ones don't have to be nimble to enjoy music and dancing - they can even be bedridden.  Take Alice Barker, a 102 year old dancer!


Today, turn up the music and dance with your loved one - wherever you are!

Saturday, 18 April 2015

WHAT IS A SUPPORT NETWORK AND WHAT WILL IT DO FOR ME?


I wrote this for an audience of adults with disabilities who want to get started using a tech tool to coordinate the help of friends and family in a circle of care.  But the model works for seniors too, as well as anyone who requires some assistance to get through a life challenge.   Here, I talk about Tyze Personal Networks, my personal favorite tool and the one I use in my own family.  But the principles are the same for Lotsa Helping Hands, Caring Bridge and other online tools - just keep in mind that Tyze has the same data security as internet banking.  It's so private that it's owned by a health care company and can be used to include medical professionals in a circle of care if that's required.  Don't forget, Tyze is free!



Having a disability can be a major or a minor inconvenience.  Of course, the severity of a disability will dictate how much and what kind of assistance is needed.  But the quality of help people have – the kind of help that is there just when you need it, then disappears so you can get on with your life – that kind of really assistance is harder to come by.   A personal support network is designed to coordinate the good intentions of both friends and professionals so that their helpful actions are coordinated, not intrusive, and driven by your wishes and needs.   

To illustrate what a network is and what it can do, here are two scenarios.

Life Without a Network:

Paul is a 37 year old, married father of two.  He and his partner Amanda have been struggling to care for their children after Paul’s motorcycle accident left him with chronic pain.  Paul walks with a cane and uses a wheelchair for longer distances.   Paul and Amanda met at a local bowling league and Paul hopes to someday return to his hobby.  Paul receives disability benefits and since his accident, he remains friends with some of his former co-workers.  They have offered to help, but as time goes by, they call less frequently.   Before Paul’s accident, Amanda worked part-time and was active socially in her neighborhood community through schools, her church and her gym.   Now, Amanda has taken a full-time job to help the family and Paul often finds himself at home alone. 

Paul identifies his wish list as being able to manage his pain in order to help more around the house, to make a contribution in his community and to reconnect with friends.  Paul would like to explore how he could bowl again, but he isn’t sure how that could happen, given his pain.

Life With a Network:

Paul set up a Tyze Personal Network.  He learned that Tyze is completely private and that members of his network will need passwords to enter the site.  He sent email invitations to join Tyze to his partner Amanda as well as to two neighbors, two former co-workers and one friend who continues to play in the bowling league.  Paul knows that he can add more friends later. 

Paul’s children need a ride to their weekend gymnastics class and Paul would like to help.  Paul doesn’t drive, so he posts a request on Tyze asking if anyone could bring his children to their class.  A neighbor sees the request in her email, logs in to Tyze and clicks ‘I’ll help’.   

When Paul posts on the Tyze Carewall that he would like to get back to bowling somehow, his league friend speaks with team members and with staff at the facility to brainstorm ways of including Paul.  The bowling league friend posts a date and time on the Tyze calendar to visit Paul at home where they will discuss possibilities.
Paul posts on the Carewall that he would like to see friends, but is never sure if he will feel well enough on a given day.  Amanda suggests that network members post on the calendar when they are free for a visit and Paul can phone last minute to let them know if he feels like company. 

Paul and Amanda are beginning to understand that friends and extended family want to help, but are intimidated by Paul’s injury and the family’s needs. Tyze helps to break down big needs into small tasks and schedule them into a shared agenda.  Everyone in the network is beginning to feel the benefits of contribution and friendship. 





Thursday, 16 April 2015

Re-Imagining Care at Home


Last night, Jim went over to Nick's to watch the hockey game, leaving me free to watch my choice of television shows with dinner on my lap.  I went straight to PBS and found 'Rx: The Quiet Revolution', a documentary film on healthcare transformation in America.  I was particularly interested because recently, I worked on a committee looking at home and community care in Ontario.  Our report was titled 'Bringing Care Home' and many of the challenges we discussed were similar to those examined in the film.  Here's a description of the documentary from the PBS website: 



A staggering 50 percent of American adults suffer from a chronic disease such as diabetes, heart disease, obesity and arthritis — and one in four has two or more chronic health conditions. In Rx: The Quiet Revolution, you’ll travel across America to discover a quiet revolution happening in medicine. From Maine to Mississippi, Alaska to California, see physicians, nurses and other healthcare professionals placing the patient at the center of their practice — transforming the way medical care is delivered while lowering costs and improving outcomes.

Rx: The Quiet Revolution peels away the clinical barriers to 'knowing' patients and instead proposes a relationship-based model involving house calls, real conversations and even hand-holding.  The NUKA model of care from Anchorage, Alaska, is profiled in the film as an innovative example of improved patient outcomes together with health economic benefits.  Dr. Douglas Eby, the pioneer of NUKA says positive change resulted from clinicians developing and deepening 'friendly, professional' relationships with patients or 'customer-owners of care', as they are called in Anchorage.  I've been a fan of NUKA for years and have written about it in my book and here, in my blog.  

Although there are many, many good and hopeful messages in this film, there is one aspect that is glaringly absent - the role of family in community care.  We all need the changes depicted in Rx: The Quiet Revolution.  We need compassionate doctors who take time to talk because we need them to understand what our illness means to us.   We need doctors to make house calls when can cannot get to their offices.  And we need medical professionals to work in inter-disciplinary teams so that chronic illness can be treated in the community.   But there is a vital message missing in this film - patients (even when they are called 'customer-owners') do not live in a vacuum.  They survive at home with the help and support of friends and family who are integral in the circle of care and key to enabling the wellbeing of their loved one.  

From 'Bringing Care Home': 

When services are provided in an individual’s home, other family members, including the extended family, friends and neighbours, are often involved in providing care. The residents of Ontario told us that they want the family to be the ‘client’ and the planning and delivery of care to be truly client and family-centered. Although policy makers and providers have long supported the principle of family-centered care, home and community care continues to look more like it is focused on what the providers want, rather than on the needs and preferences of clients and families. 

Too bad that the creators of Rx: The Quiet Revolution did not include the family in their vision of community health care transformation.

Monday, 13 April 2015

National Community Care Insurance: What's New in Canada

According to the 2014 Global Age Watch Index, Norway is the best country to be a senior citizen or person with disabilities.  Apart from Japan (9), all the top 10 countries are again in Western Europe, North America and Australasia.

Norway shifted health care resources from hospitals to home and they have a huge financial, national nest egg from oil revenues to spend on community care.  Canada ranks 4th and the USA 8th.

In Canada, we have national health, but home care is a provincial matter and supports vary widely across the country.  Individuals with higher needs must spend private funds for the care they require in order to live at home.  Recently, I learned about an effort to create a national insurance scheme to support the community care needs of Canadians with disabilities (the vision does not yet include seniors, but more on that later)– it’s called Every Canadian Counts and it’s based on an Australian model.   Here, Jess McCuaig speaks for Every Canadian Counts, or ECC:



Q:  Tell us about Every Canadian Counts.  What is the model of support?

The Every Canadian Counts Coalition is advocating for a national system for funding and setting delivery standards for essential disability supports. We envision cost-sharing between the provinces/territories and federal government, with the federal portion representing new funding to the sector. The "essential supports" covered by the program will be defined by our Coalition members.  Recipients could choose personal care budgets or agency support.

Q:  Where did the model originate?

The model that inspired ECC originated in Australia. The Every Australian Counts movement emerged in response to conditions similar to those in Canada (underfunded support programs, long waiting lists, inequitable access). Through grassroots organizing, cross-disability coalition building, and comprehensive research they built the awareness and political pressure necessary to have a national supports program created.

Q:  What are the benefits to Canadians?

While we don't have exact numbers (yet), we know the waiting lists for support programs across Canada are long and provinces are spending a lot on crisis interventions rather than investing in sustained supports, which are cheaper over the long-term. We also know many family caregivers and individuals are out of work because of unmet disability support needs, which is shrinking our workforce and tax base. 

This program will benefit ALL Canadians by investing taxpayer dollars in early intervention, sustained supports that grow our workforce, improve personal outcomes, and remove high-cost crisis spending. It will also ensure any Canadian who is born with or acquires a long-term disability through accident or illness has all essential support needs covered so they do not fall into crisis. No matter their income, where they live, or their ability to self-advocate, every Canadian will be covered.

Q:  How far along is your organization in realizing this dream?

Based on the experience in Australia, we expect the advocacy process to take five years, and we are one year in. At this point, the Coalition is steadily gaining new members from across the disability spectrum and attracting public supporters from across Canada. We have brought together leading Canadian research organizations (Centre for the Study of Living Standards, Canadian Council on Social Development, Canadian Centre on Disability Studies, and The Caledon Institute) to build a comprehensive research agenda to inform development of a program model for Canada. The Coalition has also begun to identify politicians who will champion ECC's vision at both the provincial/territorial and federal levels.

This year (year 2) we plan to focus on fundraising to build our core organization's capacity to support Coalition work, to produce new advocacy and education materials, and to further diversify our membership and support base.


Q:  What about seniors?  Are their needs covered in your vision?

The model in Australia only serves the ageing population if they enter the program prior to age 65. Those who develop disabilities later in life are not eligible. It's becoming a controversial issue there and it's something we've noted will need to be explored in advance (so creating two models: one that includes people who are older than 65 years of age with disabilities and one that doesn't, to compare costs). In terms of serving the population that ages with a disability, this model should serve them better than the old system as disability supports are fully integrated into long-term care. 

Q:  What would be the cost to Canadian taxpayers to implement Every Canadian Counts? 

As for the cost to Canadians, the method for funding this program would need to be determined by the federal government in partnership with the provinces/territories. In Australia the population did agree to a 0.5% medicare tax increase (which per household, on average, totals about $350 per year). We could look at a tax levy in Canada to fund this program, but the Coalition suspects the federal portion of the funds can be drawn from the existing tax base. This would just mean shifting funds around, and the most effective options for this need to be fully explored.

My research didn't reveal any new ideas for national long term care insurance in the USA.  Readers, let me know if I've missed something!  It's worth adding though, that the wonderful Howard Gleckman in his Forbes column today muses on the future of individual long term care insurance.  Read his excellent article HERE

Wednesday, 8 April 2015

The Lies I Tell




This video got me thinking about how I have lied to my loved ones.  I lied to Nicholas when I said it would be alright after his hip surgery (the truth is, I had no idea.. and in the end, it wasn't alright).  I lied to Nick and to my Mom when I said "honestly, it's no trouble at all!" (and I will continue telling this lie until I can no longer be of help).  I lied often when I said "I'm fine!"



But I tell the truth, too.  If a procedure is going to hurt, I always tell Nick.  If I'm worried, I tell my loved ones.  And if I think we should go to the hospital or call the doctor, I tell them - I tell my family the plans I believe we should make for their care.

What lies do you tell your loved one?

Friday, 3 April 2015

Something From the Heart - National Caregiver Day, 2015

I know that I promised my next blog post would be about private and national care insurance plans, but to be honest, that was before I remembered that National Caregiver Day was April 5th.

So today, I want to write something from the heart and let insurance plans wait till next week.

SOMETHING FROM THE HEART



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 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 ourselves, not for being perfect, but for being the best caregivers we know how to be.  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.

This weekend, if you celebrate Easter or Passover, please take a moment to reflect on the meaning of our shared caregiving experience.  Take time to weave your story into the stories of religious texts or your family history.  Because National Caregiver Day is important.  Once a year, it's worth celebrating the most important role we will ever play - caring for those we love.