Wednesday, 3 June 2020

A FREE CAREGIVER WEBINAR SERIES JUST FOR YOU


If you are a regular or even occasional reader of my blog, you know that Dr. Zachary White and I co-wrote a book called The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver. 

Well, here is some exciting news - Zachary and I are giving a FREE four-part interactive webinar series based on the book and it's FREE! 

Register HERE (Caregiver Project Webinar Series) and hopefully we'll see you there! 

Donna 💗








Thursday, 28 May 2020

TOGETHER, A MOM AND A PATIENT INVENT WHAT'S HELPFUL

Brenda Agnew is a friend and colleague in the disability family/caregiving community in Canada. So when I saw her image in the National Post while scanning my newsfeed the other day, of course I was intrigued. Brenda is the Mother of her son Maclain  who has cerebral palsy, but she's also a creative problem solver.  She and her friend Kristy Dickenson (who suffers from both Ehlers Danlos Syndrome and Ankylosing Spondylitis) compared notes about managing complex health conditions at home and they agreed that there had to be a better way using technology. Their idea of an app called Chronically Simple was born. I asked Brenda to tell me more and here are her responses to all my questions! 


Q: Brenda, tell us about your own caregiving experience and why you became involved in Chronically Simple.
A: My son Maclain is now 12 years old and has a diagnosis of severe Cerebral Palsy. In addition to his CP, he is also profoundly deaf and has many Gi issues. He is an amazing, smart, funny and handsome boy, who requires 24 hour care for all of his daily living tasks. Everything from eating, and drinking, dressing, bathing, even changing the tv channel are all tasks that Maclain cannot do on his own. My son is very engaged socially and loves school and travel and adventure, and is like a typical tween, so we have to be available to help him at all times as he doesn’t ever want to miss a beat. Since the day he was born, where we was rushed to the NICU and spent 3 months there, followed by multiple hospital stays and ER visits, and surgeries I have been there. Organizing therapies and managing doctor appointments, ordering special equipment, facilitating playdates, planning travel, administering medications, advocating, supporting. This has been life as his caregiver, while also being a wife and a mother to an older son as well. It is a role I am proud of, and I am grateful for, but a role that is physically and emotionally exhausting.

(Photo of Brenda and Maclain courtesy of the National Post)

I became involved with Chronically Simple right from the get go. Kristy Dickinson and I had become friends through our children, and over the course of many conversations we started to identify the gaps that seemed to exist for caregivers and patients when it came to organizing and tracking their multiple appointments, and contacts, and medications and we would often discuss the burden of carrying around binders full of information.  So I made myself available throughout the creation and implementation of CS to offer a caregiver perspective on app features, and product design that might differ from things that a patient might want from CS. I continue to be involved in marketing, community outreach, development and any other aspect of CS that needs that caregiver lens.

Q: Describe Chronically Simple and how it can help caregivers to manage information? 
A: Chronically Simple is a web-based and mobile app that is a centralized hub that allows caregivers to manage all the medical information for their loved one in one secure, easily accessible location. It is basically a digitized version of the binders we all keep.

Q: Why do you think Chronically Simple is a transformative innovation? 
A: I think that Chronically Simple is a transformative innovation because it was built entirely by patients and caregivers. Every section of the app comes from a real life pain point of either a person living with a complex condition or a person caring for a loved one.

Q: What is your role in the company? How can caregivers like you contribute to product development? 
A: I have been a part of Chronically Simple from idea to conception to launch. I was able to use my experiences to build out the caregiver journey within the app and ensure that features are created that alleviate stress versus becoming just one more item on my to-do list. I am the Director of Caregiver Services. I am a part of everything that ties into caregiving – from product development to marketing to sharing my journey and how Chronically Simple has helped our family. Chronically Simple innovates based on user feedback so any user is able to share their ideas and features that they feel would be beneficial for them. This is how our roadmap is created.

Q: How will I know my information is private? Who can join? (can medical professionals be invited?) 
A: Chronically Simple worked with leaders in internet safety and data privacy & security to build out a transparent privacy policy and terms of use. The founder of the app is also a patient and a user. Security is our top priority. The Privacy Policy and Terms of Use are clear and transparent. Data entered into the app is encrypted and stored securely in Google Cloud in Canada. The primary user has control over who they invite to participate as a member of their care team. They choose who they invite and what parts of their information they have access too.

Q: What devices are compatible with the app? Do you have to be internet savvy to use it? 
A: Chronically Simple has been built to take complex problems and provide a simple, easy to use solution. There is a web based application which is accessible via Chronically Simple’s website and is the same as the mobile application which is available on Apple and Android devices. We used Kristy’s 69 year old non-technical father to test out functionality of the app to make sure it was easy for non-technical people to navigate and use.

Q: Finally, what is the cost of Chronically Simple
A: There's a special offer on now to get 6 months free. After that, it's $9.99/month or $107.99/year (reflecting a 10% discount for the yearly rate. 

Friday, 22 May 2020

THE WORLD IS BEAUTIFUL


In the worst of times, the best we have is art. It transforms, heals, elevates us. We all need this simple message of hope. That, a walk in the woods and, as my husband said this morning, a paint set. 

"You cannot look at the sun or death for very long." David Hockney. 




David Hockney Interview: The World is Beautiful from Louisiana Channel on Vimeo.

Wednesday, 13 May 2020

DESIGNING AN AFFORDABLE, HAPPY & SECURE FUTURE

I'm always on the lookout for innovative housing models for older adults and recently, I came across one I really like. Jake Rothstein is a Florida-based entrepreneur on a mission for social change. I was especially interested in his ideas for older adult co-housing because a) I love the Golden Girls and b) I'm saturated with news of Covid19 and I wanted to think instead about something creative, positive and hopeful. I decided to ask Jake about his Florida-based housing model, UpsideHōM. Here's how he explained his new idea.



1)    Jake, tell us about UpsideHōM. What is the backstory and how did you develop the idea for this innovative style of housing?

UpsideHōM is the only fully managed, shared living option for active and independent older adults. We like to call it “co-living for grown ups,” since traditionally this concept of co-living has been aimed primarily at Millennials. Co-living is simply when 2 or more people share common areas of a home but we add an additional layer of concierge-accessed services that older adults may need on top of housing. We utilize modern apartments in vibrant, safe, amenity-rich apartment communities and provide a turn-key and frictionless living experience for those who desire simplified living, later in life.

The idea came about after years of immersing myself in the industry and learning deeply about its many challenges. A few years ago, I helped found a company in a similar space called Papa. We needed help caring for my own grandfather, who had recently been diagnosed with Alzheimer’s, and came up with a way to utilize college students, studying to be healthcare professionals, to help with companionship and assistance for seniors. I quickly realized the breadth of loneliness and all of its negative impacts on health among the senior population and set out to build a more complete solution. I wanted to create an environment that I would feel good about my own parents living in.

2)    What is the profile of a typical resident who would choose your model?

We believe that there’s a wide range of people who would benefit from living in an UpsideHōM. We talk to people who are recently single at 65 and are still working but just don’t want (or can’t afford) to live alone. We also have people contact us who are 80, and maybe recently widowed, who still live in the home they raised their kids in and just want to downsize and simplify their lives. We’re really for the truly independent 55+ individual, who may need a little extra help here and there and wants all the incredible amenities of living in a 55+ community but without the associated stigma. We’ve found that people don’t want to feel “old,” being surrounded by only people their own age. All of our HōMs are in communities where both young and older people live side by side.

3)    How do you match residents?

When a new future resident reaches out to us, we walk them through a detailed questionnaire and run their responses thorough our proprietary matching technology. Then we check our availability in their desired geography and facilitate a meetup between the two or three people who match. We like to host a lunch for this interaction. We believe that sharing a meal with others is a great way to start getting to know them.

4)    What is the range of properties? Price, amenities, etc. 

We have a wide range of properties available, with more coming online everyday. Our goal is to accommodate people at all ends of the financial spectrum, since we believe simplified living, later in life, is something that spans economic boundaries. Our bedrooms start at about $1500 per month and pricing varies based on location and level of luxury of the specific community.



5)    What kinds of services and benefits come with your model? 

All UpsideHōMs are technology-enabled and include all maintenance, housekeeping, basic cable/internet, common area furnishings, companionship visits, single-bill simplicity and a dedicated HōM manager. HōM managers offer residents a single point of contact and handle everything from coordination of basic repairs to rides for personal errands. Additionally, they arrange and organize dozens of other senior-focused activities and services and strive to keep residents active.



6)    Your first phase is designed for older adults who are still independent, but are you planning to expand to meet the needs of adults with disabilities, eg? 

For now, we’re hyper-focused on independent older adults but we’re always thinking about ways to expand our offering in order to meet the many needs and requests of our current and future residents.

7)     Where are your properties available currently? 

At the moment, we have availability in all South Florida counties (Miami-Dade, Broward and Palm Beach) and plan to begin expanding first regionally, then nationally by the end of the year.


Donna's note: This is not a commercial post, I just like sharing innovative solutions to senior living when I see them, and I like this one! 

Saturday, 9 May 2020

CELEBRATING MOTHERS

3 Touching Poems for Birth Mothers - Adoption Poetry

At the moment of birth, there is suddenly stillness and a collective intake of breath. There is recognition by everyone that a momentous and transformative event has taken place – a miracle.  A new baby is placed on a mother’s breast and life begins. This is the baby’s first caring relationship and it represents the sacred and pure headwaters of every other caring relationship that will come later on in life.  At the moment of birth and the days following, it is the mother who is the producer and director of this delicate and vital dance. She teaches the first and most important lesson in being human: basic trust.

As the baby grows, a mother shares her love and care with others.  The family and the network begin. In the earliest days after birth, the father and inner circle of loved ones will ensure that the mother is unburdened by concerns other than those of her baby. Everyone understands that mother-baby bonding, nursing and close physical contact is of central importance to the health and wellbeing of these two principal players who have been through so much together in the gestation and birth process.

As weeks pass, care is shared and others develop their own close, caring relationships with baby.  A different family configuration begins to settle into familiarity with a new member in it. Roles shift and change.

The mother retains a central role. She is the vigilant worrier, the multi-tasker – she remembers shoe sizes, food preferences and school assignment due dates.  As children grow to teenagers, she might become a confessor and confidante. All of these roles, she assumes on the basis of need and love. Need and love – that is the currency of motherhood.

If a mother is lucky enough to welcome grandchildren into her life, she will join the helpful inner circle of loved ones whose role is to support the new mother and baby. A new life cycle begins.

When a mother gets old and needs help, need and love begin their exchange activity again, but differently. Who is helping whom may have reversed, but new lessons are being taught and learned.

Mothers are the warp and weft of our most important, loving relationships in life. Their work is vital and central to all we know about how to live a life that is rich in the love of friends and family.

Happy Mother’s Day, Everyone!

Wednesday, 29 April 2020

What I Learned From the Film 'Crip Camp'

Image: Crip Camp, Netflix

I just finished watching the fascinating, fun, exciting and yes, inspirational Netflix documentary film, Crip Camp. Crip Camp is the story of a summer camp for disabled teens that ran during the 70’s and just happened to spawn leaders of the modern movement for disability rights. I highly recommend this film – it’s a riveting story of social revolution punctuated by a sensational 70’s sound track.

So, here’s what I learned from Crip Camp about advocacy and systems change  (in no particular order): 

1.     Optimism and imagination (the fearless and continuous questioning of what is possible) are the two most important ingredients in any movement for social change. And boy, did the 70’s have those in spades.
2.     Movements will have a much greater chance of successful influence if they embrace and include a wide range of allies. A movement for social change will self-destruct if one part tries to dominate or silence other parts for the sake of power.
3.     Leaders of resilient movements for change instil loyalty and the will to NOT back down. A sense of humour in leaders is key.
4.     In movements that include marginalized groups, telling even the most shy or oppressed potential members, “I see you and I believe you about your experience” is a powerful way to engender courage and commitment in members.
5.     Disabled people must speak for the disability community and be in charge of designing the change they want to see.
6.      There are allies in positions of power who will embrace and amplify your message. Find them. 
7.     Laws don’t equal a widespread change in attitude. Laws are only the beginning.




Tuesday, 7 April 2020

A SPECIAL GIFT FOR CANADIAN CAREGIVERS STARTING TODAY


It is my privilege to be a 'Pro' on Huddol.com, a virtual health and wellness support website for patients and caregivers in Canada. Being a Pro on Huddol is special every day because I get to speak with caregivers, but it has deeper meaning today - National Caregivers Day. That's because Huddol has teamed up with TEVA to enable FREE one to one coaching access from all Huddol Pros for one month, starting today. If you would like to take advantage of this very special offer, read on for details. Happy National Caregivers Day! xo Donna

Huddol and Teva Canada have teamed up to create the Caregiver Community Fund. The fund allows Canadian caregivers FREE ACCESS to 1-to-1 video support sessions with our 40 health and wellness professionals on Huddol, in addition to our already free social network. (If you live in the USA, read on for information about special, discounted coaching fees.)

We understand that family and friends caring for loved ones with a health problem are feeling overwhelmed at home. Many more have no contact with loves in care facilities. Caregivers are feeling the strain of the pandemic.

The Caregiver Community Fund is part of our effort to recognize caring family and friends on National Caregiver's Day in Canada - April 7th, 2020.

HOW WILL THE FUND WORK?

Go to Huddol.com and register there (it's free). Click on "Talk to Pro" on the top right of your screen.

Caregivers will have FREE acess to 1-to-1 virtual support with any of our Huddol Pros for 30 days.

Each caregiver will be able to book up to 4 FREE video sessions in that 30-day period.

Following the initial free period, the video support services will continue to be offered at discounted rates.

To benefit from the fund, use promo code "TevaCares" when prompted during the session booking process.


“We reached out to Teva Canada and our network of Huddol Pros and said: ‘We need to do everything in our power to help families right now because they’re struggling.’ Without any hesitation they all said: ‘How can we help?’ That’s the power of community!” – Mark Stolow, CEO
Please feel free to share this with a caregiver you know and love.

PS: If you live in the USA, use the Promo Code "TOGETHER25" to receive 25% off the already discounted (for Covid19) fees.