Thursday, 16 November 2017


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

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! 


Saturday, 11 November 2017


I'm not an original thinker. I know it. But hey, I know what I am good at: stealing other peoples' great ideas and mixing them up differently for a caregiver community. 

Today, I'm stealing a really fabulous idea from a PhD student at the University of Missouri, Dalton Ludwick.  Ludwick studies insects and he challenged the Twitter-sphere of fellow scientists to tweet the answer to his question, “If you could have the entire world know just one thing about your field of study, then what would it be?” Scientists broke the internet with their answers, using the hashtag #myonesciencetweet. 

So. Here's my version of Ludwick's question: 

"If you could have the entire world know just one thing about your caregiving experience, what would it be?" 

I'm going to kick off with my answer over on twitter (my handle is @thomsod). I'm going to respond: 

"Caregivers are care providers. Give us an equal voice in the circle of care & make #naturalcare a whole society issue. #my1caregivertweet"

Use the hashtag #my1caregivertweet and answer the question over on Twitter - "If you could have the world know just one thing about your caregiving experience, what would it be?"

Let's share our experiences and break the internet! 

Tuesday, 31 October 2017


“How we spend our days is, of course, how we spend our lives.” – Annie Dillard

Last week, my friend and fellow caregiving activist Helen Ries and I met for coffee. We were on a mission that day to chat with two remarkable innovators from Australia, Eddie Bartnik and Anne Skordis.

Eddie and Anne are both senior advisors to the Australian National Disability Insurance Scheme or NDIS, and they got us thinking about how the aspiration of living just an ‘ordinary life’ could be a catalyst for both personal and social change.

The NDIS is the National Disability Insurance Scheme of Australia. The website describes it as a new way of supporting people with a permanent and significant disability through giving them access to individualised funding, plans and support. The website reads reassuringly, “If your disability means you need support from another person or equipment to take part in everyday activities and you are under the age of 65, the NDIS is almost certainly for you.” And there is even support for caregivers: 

The Scheme funds supports that families need as a result of a family member’s disability, as well as supports that enable sustainable caring by family members. This includes:
·       family support and counselling due to a family member’s disability
·       building the skills and capacity of other family members to manage the impact of a participant’s disability on family life
·       supports that increase the participant’s independence, as well as supports that enable the participant to enjoy social and community activities independent of their informal carers
·       supports aimed at increasing the sustainability of family caring arrangement, including personal care and domestic assistance related to the person’s disability

Eddie and Anne explained a bit of the history of the scheme and how it came to be. The government wanted to explore value for money in helping Australians with disabilities and their families to live ‘ordinary lives’. The productivity commission (a think tank tasked with evaluating value for money in government programs), produced a report in 2009 called “Shut Out’. The idea was to create wholesale change by switching people with disabilities from welfare to insurance benefits. Furthermore, money would go straight to individuals so they could choose the kind of ‘ordinary life’ they wanted and what supports they’d need to achieve it.

An organization called Every Australian Counts was set up to help people with disabilities and their families navigate the scheme. How is it all paid for? Australian voters agreed to a slight increase in income tax and all the previously designated funds to support citizens with disabilities were diverted to the new scheme.

What interested me the most about the NDIS was its core promise of helping families have an ‘ordinary life’. According to Eddie Bartnik, arguments on the basis of human rights don’t go down well with Australian voters. But the idea of equal opportunity to access an ordinary life was something everyone readily understood. The ‘heart’ of the program for citizens was that ‘disability could be any one of us’ and the ‘head’ was that the deal made sense for taxpayers.

Here at home, the family movement social innovator Al Etmanski uses similar language when he talks about transforming opportunity for people with disabilities and their families in Canada. Al exhorts us to ‘ignite the ordinary’ and he calls politically active caregivers ‘passionate ordinaries’. Al believes that an ordinary life is a noble aspiration and that together, we passionate ordinaries can transform our society for the better.  Al says, “It’s time to pay more attention to the brilliant work of the passionate ordinaries among us. To honour them. To have faith in them. Here’s a resolution: let’s nurture a “resurrection of the ordinary” and end our reliance on the superhero/saviour model of social change.” No one is more ordinary than caregivers and our families. It’s us, he’s talking about.
After our meeting with Eddie and Anne, Helen and I looked at each other. “Are we trying to create a super-hero life for our loved ones with care needs?” we pondered. That day, we two passionate ordinaries decided to ignite the ordinary in our lives and in our families. We decided then and there that an ordinary life is a very good thing.
PS: Thanks to Sue Robins for this image and for her thoughts about 'leaning out' into an ordinary life!  



Saturday, 28 October 2017

TV Stars are Caregivers Too - Meet Leeza Gibbons

November is National Caregivers Month and to kick off, I've interviewed TV personality and caregiver activist, Leeza Gibbons. 

Leeza Gibbons is an Emmy Award winner TV personality who has become an important voice for family caregivers. Recognized as a social entrepreneur, Leeza has become one of the leading voices for issues facing family caregivers. When her mother and grandmother were struggling with Alzheimer’s disease, she created what she wished she and her family had and started, Leeza Gibbons Memory Foundation. Her training as a journalist united with her compassion and business savvy when she opened the foundation’s signature programs, Leeza’s Place and Leeza’s Care Connection, offering free services for family caregivers encouraging them to call on their courage and summon their strength for the long journey ahead. Leeza lives in Los Angeles with her husband, New York Times Best Selling Author Steven Fenton, and their rescue pup, Biggie.  She has three children, daughter, Leksi and sons Troy and Nate.

1.     Leeza, some readers here in The Caregivers' Living Room will know you from your television career, but they may not be aware your own family caregiving experience. 

A: My caregiving journey began when my mother was diagnosed with Alzheimer’s disease in 1999, and I acted as one of her caretakers up until she passed away. Now, I help provide care for my dad who suffers from heart disease. Throughout my experience with caregiving, I’ve realized that it is certainly a marathon, not a sprint – and in order to make it through the marathon, caregivers need support too.

2.  What kind of support did you find helpful? Do you use technology aids in your caregiving?
As a long distance caregiver for my dad, I constantly worried about him when I couldn’t be nearby, and this only grew worse when we discovered his heart condition. To help ensure his safety and ease our worry, my family and I made the decision to get him a Philips Lifeline medical alert service in case he had an emergency. In the summer of 2015, this technology ended up saving his life when my dad had a heart attack in his own home – it came out of nowhere and he hit the floor. Thankfully, he was wearing his Philips Lifeline, and within seconds the call center dispatched the medical team and gave him the best chance of surviving this life-threatening event. 
3.     How is your work changing the public conversation about caregiving? How can caregivers ourselves be part of that conversation?
A: My work is for all of the courageous caregivers who take care of a loved one day in and day out, and are selflessly offering their time and energy. Caregivers can have multiple people depending on them, and their own feelings are often suppressed until it becomes too much and bubbles over. If the stress of caregiving is left unchecked, it can take a toll on health, relationships and state of mind. By sharing my own personal experiences with caregiving, I hope to give other caregivers the courage to find their voice and rise above the toxic feelings that drain us. If we are able to shine the light on the struggles family caregivers face, then we can work on building strong systems of support for them and give caregivers toolkits to work through troublesome feelings such as guilt, frustration, resentment and social isolation.
When I first became a caregiver, I was unaware of all of the resources available to make the daily grind a bit easier and my parents safer. Caregivers have so many important tasks – you manage medications, provide transportation, schedule doctor appointments, stock the refrigerator and more.  By spreading the word about technology and other tools that have helped me navigate the caregiving rollercoaster, I hope to help others discover ways to be optimistic in the face of its challenges.  
While the demands of caregiving can be overwhelming, no caregiver should suffer in silence or walk the path alone. I always say you can’t pour from an empty vessel. If caregivers reach out and connect with others and create open lines of communication between those close to them, they will be more likely to bolster themselves physically, emotionally and mentally to go the distance.
4.     What can be accomplished by National Family Caregivers Month and how can family caregivers be involved?

A: Caregivers don’t get nearly as much credit and recognition as they deserve. National Family Caregiver’s Month celebrates the caregiver in all of their glory as the unsung heroes that keep our families and communities so strong. This time is to celebrate their efforts and raise awareness of the many stresses family caregiver’s face, big and small, in order to increase support for them.
I’m proud to be part of the conversation in the fight to help caregivers become more resilient and resourceful. Other caregivers can get involved by simply sharing their story, and what the day in the life of a family caregiver looks like! What do you find as the most rewarding aspect of being a caregiver? Do you sometimes struggle with guilt? Do you feel underappreciated? Share your “caregiver confession” and help drive the conversation. By raising awareness, we can work to lift each other up and help elevate the daily burdens of caregiving.
5.     Tell us about a few of the innovative approaches to self-care that you are most excited about right now.

A: Caregivers spend an average of 20 unpaid hours each week caring for their loved ones, giving their time and attention morning, noon and night to care for others. This level of dedication can crowd out other important areas of life, not to mention add financial pressure into the mix. Caregiver burnout is common due to these added stressors, and can be particularly damaging, considering it is typically a chronic, long-term challenge. Without adequate help or support, the stress of caregiving can leave you vulnerable to a wide range of physical and emotional problems. If you are experiencing symptoms of caregiver burnout, such as feeling run down, having trouble concentrating or neglecting responsibilities, it is time to take action and take care of yourself.
Despite its challenges, caregiving can also be rewarding – However, that light at the end of the tunnel can only be realized with enough stamina and good health. Some self-care approaches I like to use when I see caregiver burnout red-flags appear in my own life include:  
1. Journaling – Unfiltered writing is a powerful tool for releasing any built up frustration or sadness.
2. Physical Activity – it is a powerful stress reliever and mood enhancer! You don’t have to go to the gym or engage in time consuming vigorous exercise. Any way you move counts, whether it is gardening or taking a short walk, and it will help you have more energy with a clear head.
3. Eat healthy and hydrate – A proper diet can have a major impact on your health and wellbeing. Plan out some tasty, easy to prepare meals at the beginning of each week.  Your brain is more than 80% water, if you’re dehydrated, you’re more likely to snap, have sleep challenges and deplete physically.
4. Be open to technology – Technology doesn’t have to be complicated, and in my case, ended up being a life-saver. Medical alert services like Philips Lifeline can help you feel less anxious about your loved one’s safety. 
5. Connect with others – Being isolated can lead to depression and even make you more at risk for Alzheimer’s disease.  Look for others who “get you” through support groups or one of the many free online therapy sites.

6.     How can whole communities better support caregiving families?  

A: Taking on all of the responsibilities of caregiving without assistance is a surefire recipe for caregiver burnout – don’t try to do it all alone, because you’re not alone! However, people won’t know you are struggling unless you speak up and spread the responsibility, and most importantly, are willing to relinquish some control. Enlist friends, neighbors or family that lives nearby to run errands or sit with the care receiver so that you can take a well-deserved break – however short! People usually need some instruction, so you have to tell them, instead of waiting for someone to offer – learning to ask “can you please walk my dog?” or “can you drop off dinner tonight?” is an important skill to develop. It is also helpful to find a friend who you can check in with and who can offer an outside perspective so that you can vent without repercussions.

There are free online “care calendars” which is a great place where you can list your needs and any other information. You can invite your family and friends to join your calendar to see how to help.  There’s a big chance that someone you live near or work with is a caregiver. Wouldn’t it be great if we let all those family first responders know that we appreciate them and we’re here to help?

Thursday, 26 October 2017


I always get excited when I hear about a new film about caregiving concerns. Today, I'd like to suggest that we all mark our calendars on November 6 with a reminder to watch the release of J. Costello, a touching eight-minute film about a charming man falling into the wilderness of dementia. J. Costello is written by Liam Hollywood and produced by David C. Murphy.  

I had a chance to interview David Murphy about the film and here's our conversation.

Q: What or who was the driving force behind this project? 
A: 1.  The writer of the film Liam Hollywood came up with the idea to tell a touching story that shined a light on how dementia affects the sufferer and their loved ones.  A topic that him and I, the director of J. Costello, had a strong personal connection to and felt passionately about due to our own experiences having family members with Alzheimer's.  We had worked before with John McQuiston, who plays the main character John in the film, on a short in 2015.  He is a brilliant actor and with us eager to work with him again, Liam wrote the character specifically with him in mind.

Q: Do you have collaborative relationships with Alzheimers Associations in the UK or elsewhere?
A:  The short was produced independently from any Alzheimer's organisations, however we are in talks with several UK-based charities to see how the film could help them in their awareness efforts.
Q: What would you like viewers to take away from your film?
A: It's hard to get someone with Alzheimer's to understand what is happening to them but the main thing is to be there to support them. 
Q: How would you like to see your film used by families affected by Alzheimer's or dementia? 
A: The film shows the comfort that dementia sufferers can get from doing something they love.  Singing is something that the character John loves to do and when he is on stage it is like he doesn't have dementia at all.  It's a comfort and escape for him.  I hope families affected by dementia can be inspired to find these escapes for their loved ones.
Q: Is there anything else you would like readers of The Caregivers' Living Room to know about your film? 
A: Our social media pages are @JCostelloFilm on Twitter and Stream or download it from our website on November 6th and share with friends and family!  Watch the trailer here.