Why 2024 Will Be the Year of the Caregiver

My New Year's resolution is to work hard at the Canadian Centre for Caregiving Excellence to get a national strategy for caregivers - ALL caregivers, patients and families. 

The third day of the November Canadian Caregiving Summit was all about how we can achieve real change here and worldwide for you, me and the millions of caregivers who need help now. We wanted to know what had been achieved in other countries and how they did it. 

First off, we heard from Allison Barkoff, acting Assistant Secretary for Aging and Principal Deputy Administrator, Administration for Community Living at U.S. Department of Health and Human Services. She declared that her mission was to ensure every person can live and participate in their community, regardless of age or ability. Not just people with Alzheimer's or childhood disability, EVERYONE. Caregivers included. Allison described a framework for thinking about care infrastructure: that supporting it is a matter of civil and human rights. And that care infrastructure consists of paid care AND families. We cannot support one without the other and expect positive change. A key aspect of the federal "wins" for caregivers that Allison described was in combining issues of aging with disability. Another key element was political will. An executive order by President Joe Biden created the opportunity for a big tent movement culminating in the RAISE Family Caregivers Act. "We must make the business case to support caregivers", Ms. Barkoff said, "and then we must act with radical incrementalism." In other words, be visionary, determined, collaborative, strategic and know that small steps on a single path can lead to new territory. 

Greg Link of the US Department for Community Living (Director, Caregiver Support) told us that the RAISE Act includes a list of nearly 350 actions that 15 federal agencies agreed to take. He urged us to adopt a similar big tent approach and then seek elected officials to enact a national strategy. He said, "have a policy that's big enough that any group that looks at it can think, "there's something here for us."" It's a whole society approach. 

Next, an international panel of caregiver leaders from the USA, UK, Ireland and Brazil compared and contrasted barriers and facilitators for engineering supportive change in their respective countries. One UK example has stayed with me: The Care Act states that caregivers are equal to patients and thus should have equal support from health and social systems. Dr. Nikki Dunne from Family Carers Ireland told us how her organization successfully lobbied to pay family caregivers. 

In keeping with the idea that care provider wellbeing is intertwined with family caregiver wellbeing, I was keen to listen to a panel on just that subject. A number of front line caregivers told us how they felt invisible and under-valued. Their stories of commitment to caring in the face of racism and apathy brought me to tears. 

But we need our elected officials to put skin in the game. We heard from Members of Parliament representing each of the major political parties in Canada. This isn't just talk - we need our tax dollars to support families because caregivers are in crisis. Thankfully, our message was well received. 

We heard about policy innovations in Canada and how we leveraged terrible pandemic lock-down challenges to achieve the broad acceptance of "essential family caregiver" in hospitals and long term care homes. 

Next, Dr. Brian Goldman interviewed Baroness Jill Pitkeathley, founder of Carers UK and "mother of the caregiving movement" worldwide. It was truly inspiring to hear the sum of her accomplishments over a lifetime of care advocacy. She challenged us, "You can do the same!" 

Finally, it was time to chat amongst ourselves and set policy priorities for caregiver support in Canada. The discussion was passionate and we could tell that change is coming. We ARE a movement and together, we are stronger. I will always remember the words of Allison Barkoff, "Big groups speak with louder voices." Well, it's time to be heard. I call for a National Caregiver Strategy in 2024 and I hope you'll raise your voice with mine.

Happy New Year, everyone!

November Caregiver Support Challenge

 

November is many things. For Canadians it's the dark month, the lead-up to Christmas. For Americans, it's Thanksgiving month. For all of us, it is National Caregivers Month (well, it's really a designation that originated in the US, but ALL of us can and should claim it too because... why not?!)

This year's theme for National Family Caregivers Month is "Caregiving Around the Clock." It's a great theme and one that I'm sure resonates with every one of us. Because we DO give care around the clock. We are on call or actively giving care 24/7 without a break. 

Let's use this November to reach out to our extended families, friends, neighbors and others to tell them we need support. When someone asks, "How can I help?", have three responses at the ready. Maybe you can ask a sibling to sit with your loved one for a couple of hours. Maybe you can ask for a meal delivery. Or maybe you can ask them to listen when you explain a typical day in your caring life. 

"Ask for what you need" is my new mantra and this November is a good opportunity to do just that. Best of  luck and please let us know in the comments how your November support challenge works out. 

COME LEARN WITH US FOR FREE!

Recently Dr. Zachary White and I gave a webinar as part of a series of free, supportive learning events for caregivers sponsored by the Department of Continuing Education at McMaster University. "Caregiving Essentials" is the title of an upcoming series of online webinars for caregivers. Check it out! Zachary and I will be giving two of these sessions based on ideas from our new book, The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver (Rowman & Littlefield, 2019). Register and join us now! The course runs for 8 weeks and ends on December 20, 2019.

Here's a sample of our conversation from the last webinar - 

Question: What are some of the benefits or advantages in being a caregiver? What has been a caregiver taught you about yourself or has positively impacted you?

Donna: There are enormous benefits and advantages to being a caregiver. I think there is something that I would call a caregiver advantage or caregiver edge. We are experts in living in the moments, experts in giving comforts, and experts in living in an open-hearted way according to our values. We have enormous knowledge, and we have skills that we have mastered. These skills involve soothing, nurturing, navigating. Some of our skills are soft and some of them are hard...Who else knows how to repair a broken breathing tube using duct tape on a city bus? Who else can 'Macgyver' solutions better  than caregivers? We have enormous knowledge, skills and wisdom that we can be very proud of.

Zachary: Growth-related meaning is earned from our experiences that shape us in ways that others do not have access to, especially in the 21st century. The people gathered tonight are relationship innovators. Innovating and 'macgyvering' in ways that we never would have planned nor perhaps wanted. The idea that we understand silence and we are able to connect to someone with silence in ways that most others don’t. The way we understand how to truly listen to someone,  to be with someone. That we understand what can happen in a relationship when we walk in without an agenda, not having to change who they are because so many of us have to live within the constraints of the bodies and people for whom we love dearly. We cannot change the conditions, but we can learn to live with and understand who they are, and what is present and available to us, in ways that most other people cannot fathom. In America, we talk about the great innovators being in Silicon Valley, but to me, the great innovators in the 21st century are not building and engineering tools - they are building relationships in ways that other people yearn for.  We can find a sense of understanding each other in the most challenging of circumstances.

A Personal Conversation About Caring with Mark Stolow of HUDDOL

Yesterday I had the pleasure and privilege of chatting with my friend and colleague in caregiving, Mark Stolow. Mark is the founder of HUDDOL.COM, a terrific resource for caregivers everywhere.
I really encourage you to join me and Mark there to continue to conversation! Have a listen and let me know your thoughts about your caring life.

If you find that these experiences and ideas resonate, consider ordering my new book The Unexpected Journey of Caring: The Transformation From Loved One to Caregiver (co-authored with Dr. Zachary White of The Unprepared Caregiver).

HELP FOR ALZHEIMER'S CAREGIVERS

I am pleased to host this guest post by Lydia Chan, whose Mom suffers from Alzheimer's. Lydia writes for Alzheimerscaregiver.net.

The data is in, and there’s no doubt that Alzheimer’s caregivers are exhausted. The University of Michigan and AARP recently teamed up to survey the people who are providing full time care to loved ones with this crippling disease.

The results are a little horrifying. You might expect that caregivers would find their jobs in jeopardy. But it turns out they also ignore their own health. Of caregivers surveyed, 20 percent said their health was poor or only fair. And 7 percent of them said they had neglected or ignored their mental health.

Further, most family caregivers are around the same age as their patients, who are likely to be spouses or siblings in their 60s or older. In this scenario, both caregiver and patient are at risk.

While the vast majority of caregivers reported a certain satisfaction, even joy, in their unpaid work, they also reported a high level of stress. It turns out that the phrase “You deserve a break today” applies more to caregivers than to anyone else. But how do you get that needed break? Read on.

Uncover resources

There are a number of resources for caregivers, but far too few caregivers are taking advantage of them. Online and in person support groups for caregivers offer a great deal of experience and advice for dealing with the financial and legal aspects of caring for an Alzheimer’s patient. These groups also offer a wealth of ideas about how to take a time out.

The National Association of Area Agencies on Aging (n4a) also helps you look up services close to you. And the AARP has developed an interactive caregiver tool that refers you to solutions.

If you are a churchgoer, don’t be too proud to ask your church for help. The best kind of help you need is someone who doesn’t mind doing whatever is needed: unloading the dishwasher, dressing your patient, and walking the dog, for instance. Churches are so good with this kind of thing, you might consider joining one if you don’t already belong.

Make a dog part of the picture

One of the best ways to decompress is to spend time with your dog. And dogs are virtual miracle workers. Just snuggling with one can lower stress, blood pressure, and improve heart health. Among some demographics, dog ownership even keeps the demons of depression at bay.

For caregivers, the value of a dog is all the greater. If you already have a dog, cherish her. If your dog is particularly patient and gentle, you can also make her part of your loved one’s therapy. Even severely disabled people brighten at the sight of a dog and they get a rush from petting one.

Alzheimer’s patients are eligible for therapy dogs. And, in fact, dogs trained to accompany Alzheimer’s patients can do amazing things for patients in early and mid-stage Alzheimer’s.

These dogs learn to take the patient home when he gets lost and track him if he wanders out of the house. Alzheimer’s working dogs are equipped with GPS, and they will stay with their patient until rescued, so a family member can always locate a loved one who has wandered too far.

A dog, in short, may be good therapy for both you and your patient. Walking a dog is one of life’s great pleasures, but as a caregiver, you won’t always have time, so have a dog walker on call to help you with one of your many obligations.

This month, which is National Alzheimer's Disease Awareness and National Family Caregivers Month, we celebrate the unsung heroes of our generation: Those who have taken on the unglamorous and difficult work of caring for someone with cognitive failure. We honor them and, at the same time, we declare they should take some time off for themselves.

Photo courtesy of Pixabay.

PS: Don't forget my latest Twitter challenge to all my readers (those of you who use Twitter, of course!) - Answer the question "If you had the chance to tell the world one thing about caregiving, what would it be?" and don't forget to add the hashtag, #My1CaregiverTweet. If you're NOT on Twitter head on over to The Caregivers' Living Facebook Page and post your answer there. I'll post it on Twitter for you - let's tell the world about the real realities of giving care! 

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INNOVATION: USING TECHNOLOGY TO SUPPORT WORKING CAREGIVERS

A couple of weeks ago, an article about a new caregiving technology for families caught my eye. BookJane is a Toronto based app available across Canada. It's a platform that enables families to book both child care and senior care on a single site. Such a whole family life-lens is unique, but what's really special about BookJane is their corporate program to support caregiver employees. 

Working caregivers struggle to balance responsibilities at home and at the office. Employers are encouraged by governments and caregiver support researchers to 'offer flexible hours and leave arrangements'. 

But BookJane's corporate offer is something I've never seen before. Corporate solutions for the home care needs of employees include embedding BookJane into existing corporate benefits program and even the bulk purchase of hours that corporations can hand out to employees as needed.

Curtis Khan is the visionary CEO of BookJane. I asked him to tell us more about BookJane's range of services for caregivers. 

The Caregivers' Living Room: 

Tell us about Book Jane – what are the benefits for family caregivers who are at home, at work and what are the benefits for employers?

Curtis Khan: 

BookJane has significant benefits for caregivers, families and employers.

BookJane is an on-demand care service that provides significant benefits for families, caregivers, and employers. For families, our ability to provide caregivers at a moment’s notice is just the start of what sets us apart from traditional caregiving companies. BookJane fully vets all of our caregivers, using a 4-stage verification process, to ensure that caregivers have of their documents, are certified in their field, and have the “spark” to provide quality care. Our method for booking caregivers is an extremely simple and seamless process. Families can use our app to filter caregivers, find a caregiver with the right availability and skill set, book the caregiver, and pay for the caregiver. The app is extremely intuitive and we recommend everyone should try it out for themselves.

BookJane is also an amazing application for our caregivers. We are able to pay caregivers between 10 and 30 percent more than our competitors. We let caregivers set their own schedule and they only receive shifts when they are available. Caregivers receive extra incentives for working more shifts and have many opportunities for bonuses. We work with highly respected professionals in the industry to create important learning modules for all of our caregivers. This way our caregivers can learn, get higher ratings, and become the best caregivers in the industry. We recognize our exceptional caregivers at our annual BookJane award ceremony, and have various other events for our caregivers, as well as their families, throughout the year.

Employers can use BookJane as part of a corporate program. Through providing BookJane they can give their employees peace of mind, and allow for a more productive work force. Employees can often feel guilt when leaving loved ones that are in need of care. But BookJane provides a way for employees to continue with their job while knowing that their loved ones are taken care of in the comfort of their home.

BookJane also works directly with senior homes, and child care centers. For child care centers we have a full roster of Registered Early Childhood Educators (RECEs), and Early Childhood Assistants (ECAs). Our staff are trusted in these institutions, and we have a very thorough vetting process for all of our caregivers. We don’t approve anyone that we would not trust taking care of our own loved ones.

The Caregivers' Living Room: 

What kind of health and social care professionals do you have on your roster?

Curtis Khan: 

BookJane currently offers Personal Support Workers (PSWs), Registered Practical Nurses (RPNs), and Registered Nurses (RNs) for both in home care and to senior homes. Currently, we do not have any social care professionals on our roster, but there are plans to introduce these services in the future. 

The Caregivers' Living Room: 

Do you accept clients who have complex needs? Health care needs? Mental health needs?

Curtis Khan:

BookJane strives to help clients that have various and complex needs needs. Our caregivers are often the same caregivers working in senior homes, hospitals, and other institutions that specialize in caring for clients with complex needs. BookJane even goes an extra step to ensure all of our caregivers have knowledge on how to a care for clients by creating learning. These learning modules cover many topics including how to care for patients with common mental health needs in senior populations. Through these learning modules, and our thorough hiring process, we are consistently able to provide caregivers with the skills capable to care for our clients.

The Caregivers' Living Room:

What is the approximate cost to families who use Book Jane independently? Can you give us an idea of the personal cost for caregiver employees who use your service as part of a corporate benefits package?

Curtis Khan:

The price is dependent on the type of care needed, but does not differ for employees or families.

Our prices are as follows:

$25 per hour for PSWs

$38 per hour for RPNs

$47 per hour for RNs

The Caregivers' Living Room:

Is your service designed for long term use by families as well as on an as-needed, occasional basis?

Curtis Khan:

BookJane is flexible enough to be easily used for an on-demand, occasional, or a regular basis. The app is designed to accommodate for the desires of any frequency of bookings. Anyone using BookJane on an as-needed basis knows that they can rely on us when they are in a pinch. Often, due to unforeseen circumstances, families need care at the last minute but know that we can provide a caregiver with just a few clicks. BookJane is also good for occasional use, as families can favorite the caregivers they love, and still have other exceptional caregivers available. When families use BookJane they have access to our full roster of caregivers, and can browse through to find the caregiver that fits their needs. Lastly, BookJane provides convenience for those making regular bookings. All payments are done through the app, there is mobile tracking to see where the caregiver is slightly prior to the shift, in app messaging and video calling if you need to get ahold of the caregiver, and a complete history of all your bookings for your records. So, no matter how often you need to make a booking, BookJane can support your caregiving needs.

The Caregivers' Living Room:

For long-term clients, how do you manage situations where regular paid care staff are sick or on holiday?

Curtis Khan:

BookJane has policies to prevent caregivers from unnecessarily canceling shifts as well as giving both us and the clients as much notice as possible. However, unforeseen events can always happen, even to our caregivers. In the case that our caregiver needs to cancel a shift, they will do so on the app. BookJane will then start to find a replacement caregiver immediately. Our app is very good at finding caregivers at the last minute, so given any notice we should have no problem finding an equally qualified replacement for the client’s booking.

The Caregivers' Living Room: 

Thank you for sharing your model of caregiver support for all caregivers (both employed and those who are at home full-time). It's great to see that you offer care for families across ages and abilities as well. I hope that other home care providers in North America follow your lead and that eventually, anyone working in Canada can expect home care support as a standard company benefit.