Posted by & filed under Male Caregivers, Uncategorized.

Caring for family is a job that often defaults to women. In some cultures, it is a tradition that is discussed from an early age. In other cultures, it is an unspoken norm that is tucked away until it becomes a reality.

As cultures evolve, these default settings are changing. It is no longer unusual for a man to step up and provide care for family. We live in a time of paternity leave and stay at home dads. There are also many families with single dads or even two dads. It is a new era that offers a more dynamic reality of care. Each unique caregiver can offer something that cannot be replicated by anyone else. A man like Ken (in the story above) is an incredible caregiver for his wife. He is able to manage his role, because he has savings. It is what he has chosen to do. He also has respite from our wonderful friends at Saint Elizabeth.

In a recent story, Forbes referenced surveys indicating that the number of male caregivers has “risen rapidly, driven by a combination of factors, including the recession, changing gender expectations and longer life expectancies”.

male caregiver

On October 4th, Donna Thomson of The Caregivers’ Living Room interviewed Scott McNabb, the Executive Director of Homewatch CareGivers Canada. “This organization is unique in hosting ‘The Male Caregiver Community‘, an online support forum for men who give care to their loved ones. Like many other passionate professionals in the caregiving field, Scott is a former caregiver himself. After learning difficult lessons from the front lines of caregiving, Scott wanted to help others, so he quit his job as an insurance executive and traded the board room for the living room,” explained Donna.

In another story in The Star Tribune, the Vice President of Homewatch Caregivers discussed the learning behaviour of male caregivers, “One of the things we know about men is that they will go to the Internet more as a caregiving resource, but they are less likely to get caregiver training,” Tucker said. “If they’re less willing to seek it out, let’s make sure that they have a male caregiver community where they can post, read articles, get referrals and have resources.”

It is wonderful to see an increasing number of online communities and conversations about male caregivers. The video below is another example of men connecting and discussing their experiences caring for family. It is refreshing how straight up these men are about their experiences. It is extremely valuable to hear these authentic stories being told by men, because it can help normalize the process of communicating and expressing their experiences.

 

According to a 2013 Caring.com survey of male caregivers, shopping for food and personal care items, attending medical appointments, managing finances or paying bills, communicating with friends and family about a loved one’s condition, providing transportation, and administering and/or tracking medications top the list of most common duties. As we have mentioned in previous posts, Tyze makes it easier to give and receive help with caregiving. Tyze has been specifically designed to improve communication while helping to manage all of the tasks listed above. Research has proven that help with caregiving increases when you are plugged into a personal Tyze network.

It is valuable for there to be a more diverse and realistic representation of caregivers in the media and online. There are billions of us all over the world. We are extremely diverse and yet, we have so much in common.

Posted by & filed under Caregiving, Carers, Research, Vickie Cammack.


It was over 20 years ago when Vickie Cammack began working to create networks of support for people who are vulnerable. This work manifested into a social venture when Tyze was born as an online tool. This unique technology is a culmination of personal experiences, wisdom and research.


“Helping one another is key to having personal meaning in life and key to creating an inclusive, resilient society. Tyze is simply a tool that allows people to do what they want to do, which is love and care for one another.” – Vickie Cammack

 

Tyze provides a strategic way to share the care amongst family, friends and paid care staff. As we began growing to more than 10,000 Tyze users, we felt it was important to step back and gather in-depth research regarding the benefits of using Tyze. Some of our research findings have been discussed in our previous posts, “Do people have time to care?and “Research insight #1: People help more when plugged into a Tyze network.”It has been fascinating to gain insights regarding how we can give and receive help.

We are also excited to have discovered a stat that brings it all home. We found that 80% of family and friends connected to a Tyze network reported an improvement in their quality of life! We have recently launched a newly revised version of Tyze that has been co-designed with developers and caregivers. This revision is still rooted in the history and research that make us truly unique.

For more information about our research, please feel welcome to download the entire report as a pdf: Combating Isolation and Loneliness With an Online Personal Network Called Tyze

 

Posted by & filed under Caregiving, Carers, Research, Tips On Using Tyze.

Screen shot 2013-10-31 at 6.35.03 PM

Through our latest research, we discovered that people are willing to help out more than we thought. The biggest challenge is knowing how to communicate.

There is often a disconnect between the caregivers who need help and the people who are ready and willing to help. That is where Tyze comes in. When support people join a Tyze network, 75% reported that it helps them be more aware of how they can provide support to the client or family caregiver.

 

In response to this research, Dr. Kerry Byrnekerryweb wrote the following information to help describe the value and practical application of support networks.

 

Family and friends are the heartbeat of most care situations. How can you be a good supporter for a family member or friend who is caring for a loved one?

 

We have learned that information posted on networks results in help with all kinds of care activities and tasks. When people know more, they are able to do more. This is important because caregivers all over the world report needing help with things such as transportation to appointments, emotional support, being able to take a break from caring and finding out information about available community supports. But asking for help is hard. It often makes people feel vulnerable. And sometimes there is so much going on, that even asking for help feels overwhelming.

When researching support networks, Dr. Byrne often hears people say that they don’t know how to help out. You don’t want to offend someone or do something that creates more work. It can be easy to feel concerned that your are overstepping. Several leading care organizations suggest that being specific is key. This is true whether you are asking for or offering help.

 

Dr. Byrne suggests the following ways to reach out and let someone know what you can do:

1) I have 2 hours this Saturday – I could help with the yard work.

2) I can sit with your mom for an hour on Wednesday nights for the next month.

3) I have a car and can pick up groceries or drive your Dad to an appointment.

4) I’m really good at finding information online – I could look into community supports and send you some helpful links.

 

Instead of saying ‘how can I help?” you have just made it much easier for your friend or family member to know how you can pitch in.

 

Family caregivers tell us that it is reassuring to simply know that others care. So even if you do not have ‘time’ to offer up right now, take 1 minute to post a message in your Tyze network, share a photo and let someone know they are in your thoughts – it will make a difference! We are relentlessly committed to making it easier to receive and offer care and support. Stay tuned for some new feature updates that will do just that! Recent Tyze blog posts also include tips for how to be a good supporter, requesting and offering rides and ideas for how to contribute to care, even when you live at a distance.

 

 

Posted by & filed under Belonging, Caregiving, Case Studies.

takeneed

Tyze partnered with Vision Critical to find out

Tyze was created based on the belief that our relationships with other people are vital to a good life. We wanted to find out more about how much time people have to help out and what they can do to pitch in with care.

We partnered with Vision Critical, a Canadian global technology company that specializes in tools and services for marketing research and polling. The purpose was to examine how much time people spend doing care tasks, what kinds of care tasks they would be willing to help with and how much time they have available to help out. A survey was sent out to participants in Canada, the United Kingdom and the United States.

 What did we find? 

People are available to help out, for longer than we thought. Overall, most survey participants reported having time to help out, with the majority of respondents in each country indicating that they have between 1 to 4 hours a week available to help out a family member or friend who was facing a care or health challenge. Twelve percent or less of participants in each country indicated that they did not have any time to help out.

 

Table 1: Time Spent or Available per week to Help Out with Care

 

 

Canada

United States

United Kingdom

Average Hours spent per week caring

(for those who are currently helping)

8.3

(n=303)

8.2

(n=262)

9.5

(n=425)

Average hours available per week to help with caring

(for those who are not currently helping)

7.2

(n=1207)

7.7

(n=752)

7.2

(n=1576)

I wouldn’t have any time available

7%

12%

10%

 

When asked to think about the different types of daily tasks that they could help a family member or friend out with, the top choices were shopping, medications, housekeeping, meal preparation, transportation and providing someone else with a short break from caring. These were the top 6 reported in each country, but as the data below highlights, the ranking varied across countries:

Canada

54%  Shopping, e.g., for groceries

48%  Transportation (e.g., to an appointment)

41%  Housekeeping (e.g, laundry and dishes)

37%  Meal preparation

37%  Medications (e.g, picking them up)

31%  Providing someone else with a short break from caring for their relative or friend

 

United States

50%  Shopping, e.g., for groceries

41%  Medications (e.g, picking them up)

39%  Housekeeping (e.g, laundry and dishes)

38%  Meal preparation

35%  Transportation (e.g., to an appointment)

28%  Providing someone else with a short break from caring for their relative or friend

 

United Kingdom

65%  Shopping, (e.g., for groceries)

46%  Housekeeping (e.g, laundry and dishes)

37%  Transportation (e.g., to an appointment)

37%  Medications (e.g, picking them up)

33%  Meal preparation

18%  Providing someone else with a short break from caring for their relative or friend

 

Why does this matter?

Family and friends reported they are willing to help out with things like meal preparation and transportation. These are the kinds of tasks that help keep people at home, where they want to be. And they are also the kinds of care activities that people report wanting help with when they are caring.

People who reported that they were not currently helping to care for someone, indicated having hours available each week to help out family & friends who are facing health and care challenges. We want to make it easier to match up help wanted with help available. But we also know, and have heard from our users that it is difficult to ask for help. How can we become better supporters to individuals and family and friends who are facing health or caregiving challenges? How can we create care situations where family members and friends truly share the care?

Developing better strategies for sharing the care amongst family, friends and paid care staff is core to shifting to a network model of care – the future of care and support. Tyze is committed to making it easier to receive and offer care and support. Stay tuned for some new feature updates that will do just that!

Recent Tyze blog posts also include tips for how to be a good supporter, requesting and offering rides and ideas for how to contribute to care, even when you live at a distance.

 

 

Survey Methodologies

Canada

From Sept 18th to September 19th 2013 an online survey was conducted among 1,510 randomly selected Canadian adults who are Angus Reid Forum panelists. The margin of error—which measures sampling variability—is +/- 2.5%, 19 times out of 20. The results have been statistically weighted according to education, age, gender and region (and in Quebec language) Census data to ensure a sample representative of the entire adult population of Canada. Discrepancies in or between totals are due to rounding.

US

From Sept 18th to September 19th 2013 an online survey was conducted among 1,014 randomly selected American adults who are also Vision Critical American Community panel members. The margin of error—which measures sampling variability—is +/- 3.1%, 19 times out of 20. The results have been statistically weighted according to education, age, gender, region, and ethnicity American Community Survey data to ensure a sample representative of the entire adult population of America. Discrepancies in or between totals are due to rounding. 

UK

From September 26th to September 27th 2013 an online survey was conducted among 2,001 randomly selected British adults who are Springboard UK panelists. The margin of error—which measures sampling variability—is +/- 2.2%, 19 times out of 20. The results have been statistically weighted according to region, age, gender, newspaper readership and social grade to ensure a sample representative of the entire adult population of Great Britain. Discrepancies in or between totals are due to rounding.

 

Posted by & filed under Advocacy, Carers Australia, News.

carers

The struggle to support loved ones is a universal issue. It is a financial and human resource challenge that every health care system has in common. Some systems fear change and default into denial. Meanwhile some systems are embracing new ideas and increasing the efficiency of health care through creative innovations.

In Australia, there are 2.6 million carers who provide unpaid care and support to family members and friends with a disability, mental illness, chronic condition, terminal illness, an alcohol or other drug issue, or who are aging. Through the combined efforts of advocates and open-minded government, Australia is becoming one of the world’s leaders in supporting the precious resource of unpaid care. This week is “Carers Week” in Australia and there are many reasons to celebrate.

The Prime Minister Hon Tony Abbott, launched Carers Week by honouring the value of carers through words and action.

“Not only do carers save our nation billions of dollars, but they are a reminder of our best selves. They are so often inspirational leaders in our community and in our nation.” stated Prime Minister Abbott

To demonstrate these thoughts and feelings through tangible action, the Prime Minister handed over a cheque for $762,000 to the CEO of Carers Australia, Ara Cresswell, representing the fundraising total from Pollie Pedal 2013. This money will go towards the numerous innovative programs that have been developed through the collaborative work of Carers Australia as work directly with the state and territory carers associations to deliver the following services:

Better Start provides an information and registration services about accessing funding and other support services for carers of children with eligible disabilities.

Carer Advisory Service provides information and advice to carers and their families about carer support and services.

National Carer Counselling Program provides short term counselling by qualified counsellors.

Mental Health Carer Counselling provides a specialised counselling service for carers of people with mental health issues.

Young Carers Program provides information, advice and support for young carers.

In Australia, there is also a carers allowance. This innovative program has proven to be tremendously successful. Advocates are continually seeking ways to innovate and ensure that carers are supported in the most effective way possible. CEO of Carers Australia, Ara Cresswell is one of these advocates continually pushing for innovation.

“This year in Carers Week we want to reach out to all unpaid carers to ensure no-one is falling through the cracks, or feeling that no-one understands what they are going through,” said Ms Cresswell. “We also want to raise awareness of unpaid carers in the workplace to encourage all employers to offer flexible hours to carers, allowing them to grow, learn and prosper despite the demands on their time and energy as unpaid carers.”

Ms Cresswell sees supportive programs for unpaid care as support for the entire economy. She says that accessing training and education opportunities and being able to work in a flexible and understanding environment goes to the heart of increasing the nation’s productivity.

Assistant Minister Fifield for Social Services spoke to the fact that caring for vulnerable loved ones is a reality that we will all be impacted by at some point in our lives. He is encouraging everyone to engage with Australa’s Carers Week.

“In workplaces around the nation there are many people who have family caring responsibilities, and we’re encouraging people to take a break at work, to have a morning tea, to acknowledge the work that family carers do. Almost every Australian at some point will have some family caring responsibilities.” said Fifield

 

 

 

 

Posted by & filed under Advocacy, Caregiving, Carers.

We are so grateful to have Donna on our team at Tyze. She has helped to shape our online tools and she constantly inspires us. Her authentic online presence provides comfort and empowerment for thousands of people all over the world. Please enjoy reading her thoughts and insights on social media and advocacy.

advocacy collage

Donna Thomson on Social Media & Advocacy

I have always had an interest in social justice, so it was natural for me to become an advocate for my son Nicholas when he was born with disabilities in 1988. In the early days, an old-fashioned typewriter was my tool for spreading the word about inclusive communities. In the early 90’s, our family bought our first computer and by about 1995, we had a home connection to the world wide web.

braintalk

 

As a novice internet user, I was drawn to parent bulletin boards. My chosen online home was the child neurology forum at ‘Braintalk Communities’, a project of Massachussetts General Hospital. I still visit Braintalk, but the forum is much quieter now. Most parents have gravitated away from the bulletin board to more dynamic platforms such as facebook. Braintalk has a rule that none of its users are permitted to discuss politics. But that has never stopped parents from sparking a discussion about the barriers to procuring the equipment or medical services their children need. Inevitably, that is a conversation with political overtones. When parents chat online about their successes and failures navigating systems and bureaucracies that serve their families, parents become inadvertent advocates.

Screen shot 2013-10-09 at 12.49.38 PM

Nowadays, I advocate online via a blog, a twitter account and multiple facebook pages. My blog receives an average of 7,000 hits per month, a figure that represents caregivers from across the globe who came across my site as they searched for information and comfort from others with similar responsibilities at home. I use social media to advocate for a holistic approach to supporting those who give and receive care, across the age and ability spectrum. I advocate against the widely held value that ‘we should look after our own on our own’, instead promoting the model of coordinated networks of support like Tyze.

Ideas of what constitutes success and failure in caregiving and care receiving are shifting away from ‘person centred’ and toward ‘network centred’. I am part of that movement. Technology is a tool that can be used for better or for worse. In the hands of caregivers who seek camaraderie and a kinder world for their loved ones, it’s definitely a tool for the better.

If you would like to join me in conversation with others who give care, come into the ‘Caregivers’ Living Room’ (that’s my blog) at www.donnathomson.com. My caregivers’ facebook page is located at: https://www.facebook.com/donnathomsonauthor and my twitter handle is @thomsod.

Posted by & filed under Alzheimers Caregiving.

Memory Walk

 

As Alzheimer’s month comes to an end, we are reflecting on the progress and momentum that has been building throughout organizations, families and policy makers.

Current estimates indicate 35.6 million people worldwide are living with dementia but with the world’s populations aging, the World Health Organization estimates that number will nearly double every 20 years, to an estimated 65.7 million in 2030, and 115.4 million in 2050. A remarkable 83 per cent of Canadians want a national dementia strategy.

According to The 2013 World Alzheimer Report , the traditional system of “informal” care by family, friends, and community will require much greater support as the world’s population ages. What can we do?

The best way to respond to these challenges involves collaboration, innovative thinking, and the ability to show up for one another. Here are some exciting highlights of dementia initiatives happening now.

 

1) Dementia Friends

 

The goal is to make England a dementia friendly place to be. Dementia Friends is creating awareness and understanding of dementia throughout the general population. They are also engaging citizens and asking them to consider the small things they can do that can make a difference to people living with dementia – from helping someone find the right bus to spreading the word about dementia. It is also about ensuring that people with dementia feel included in their communities.

Dementia Friends want to create a network of a million Dementia Friends across England by 2015.


2) Canada’s Call for a National Dementia Strategy

 

Last week, The Alzheimer Society of Canada called on the Federal Government to immediately establish a Canadian Alzheimer’s disease and dementia partnership to lead and facilitate the development and implementation of a national dementia strategy. The Society made its call to action in a speech delivered by CEO Mimi Lowi-Young at the Economic Club of Canada.

“Dementia is a huge threat to our public health system and to our nation’s productivity,” says Lowi-Young. “By 2040, Canada will spend $293 billion a year on this disease alone. We have the best minds and the best of intentions, yet what is missing is a fully coordinated response to curb costs and meet the crushing needs of families and those living with this profoundly life-altering and ultimately, fatal disease.”

According to The Alzheimer Society of Canada, family caregivers spent in excess of 444 million unpaid hours in 2011 looking after someone with cognitive impairment, including dementia. The ASC identified a mandate including recognizing family caregiver needs and developing supports that provide options and flexibility.

 

3) UK to use G8 to target global effort on dementia

 

The UK will use its Presidency of the G8 to identify and agree a new international approach on dementia research in recognition that the condition is fast becoming the biggest pressure on care systems around the world.

As part of the UK Presidency, the UK and US are exploring opportunities to advance thinking on dementia research and identify opportunities for more international collaboration. This joint leadership will help to tackle key issues such as facilitating the discovery and development of drugs and to advance thinking on future treatments and therapies.

 

4) Alzheimer’s research gets $45 million funding boost in the US

 

This month, The National Institutes of Health (NIH) announced grants for research to find therapies for Alzheimer’s. It is the sixth leading cause of death in the USA, according to the Alzheimer’s Association. The funding includes $40 million from the Office of the NIH Director, Francis Collins. Additional funding will come from the National Institute on Aging.


Although there is immense gratitude for this funding, there is still a continuous push to access more funding. It will be interesting to see what sort of innovative strategies or programs emerge through this enhanced support.

 

5) Tyze partners with the Alzheimer Society of British Columbia

 

We are proud to provide an interactive, unique tool that makes it easier for families to update one another, share important information about care and mobilize support for family members and individuals.

Through our partnership with the Alzheimer Society of British Columbia, individuals and families have access to Tyze networks. Willow started using Tyze after being introduced to it at the Alzheimer Society of British Columbia. It resonated for her because she wanted a way to keep everyone updated about her partner for whom she is the primary caregiver. Willow explained that when she heard about Tyze from the support coordinator, she thought “this is exactly what I’ve been wanting’. Willow puts appointments into the calendar and updates everyone after appointments to keep everyone in the loop. Willow describes herself as the ‘hub of the wheel’.


“My main purpose at this point is to keep all the family updated with what’s happening. I’m the person that looks after him and keeps his life organized and goes to the appointments with him and all of that. So all the doctors and all the connections have my phone numbers. The pharmacist, the Alzheimer program at the Alzheimer’s Society and the O.T. You name it, they call me and so I know everything that’s going on in his life, and so the rest of the family comes to me when they want to know what’s happening. And with Tyze, I can just write it down once and if they want to know it’s happening, they can go to Tyze and look it up,” explained Willow.

 

Please feel welcome to comment below and share your stories in caring with us!  What solutions do you see working in your community?

Posted by & filed under Tips On Using Tyze.

caregiving

 

On September 10th, the Toronto Star published a story about caregiving in Canada that summarized some recent research from Statistics Canada.

In addition to discussing the number of caregivers in Canada, this story looked at the type of help that caregivers provide. When I read this story, it reminded me of how much my Tyze network has helped me to ask for help. According to Statistics Canada, transportation was at the top of the list for caregiver tasks:

 

According to Statistics Canada, The most common type of help, provided by 73 per cent of all caregivers, was transportation to run errands, shop or attend medical appointments.

From my personal experience, I feel that these numbers really resonate. When you are a caregiver, it can seem like your whole life is spent driving around, worrying, and waiting in waiting rooms. When I set up a Tyze Personal Network, I began embracing a new way of asking for help. When my mom had an appointment, I would reach out to the network of support people we had invited into our network. Most of the time, someone would step up and allow me to avoid missing work…or take a much needed break from running around. Tasks that involve errands and transportation are ideal for delegation. These are great opportunities to ask for help! The following is a step by step example of how to ask for help with Transportation.

How to Ask for Help with Transportation on a Tyze Personal Network

    • Add the upcoming appointment to your Tyze calendar and include all relevant details.
    •  Send out a network message and ask if anyone is available to provide transportation that day.  Remember: It is not just a task to be completed, it can be a nice opportunity for a visit.
    • When someone volunteers, you can thank them in a personal message or thank them in a network message. Sometimes it is nice to thank someone in front of an audience.

How to Provide Help with Transportation on a Tyze Personal Network

 

If you have the chance to become a support person in a Tyze network, it is a great opportunity to make a big difference in someones life. When you step up and offer a ride to an appointment, you are creating tremendous value for the entire network. In addition to sharing the responsibilities, you are helping to normalize the behaviour of helping and reinforcing the idea that we can provide support as a network. It is not about any one person being the hero all the time…and then crashing and burning out from the exhaustion of it all.


When you offer a ride to an appointment, you have the opportunity to provide social connection, practical help, and respite (a break) for the primary caregiver.

 

    • Social Connection

 As you may realize, it can be very stressful and boring to sit in a waiting room and speak with doctors. You can create tremendous value by simply being there and chatting. Never underestimate the power of hanging out and making small talk! This is something that can provide a distraction from the challenges of health issues. It can also be a way to take a break from being in a medicalized reality 24/7. When you have health concerns, it is common to feel as though every conversation is about medication, symptoms…or ideas for miraculous cures.

Accepting someone exactly as they are and connecting from this place is extremely valuable. One of my mom’s favourite support people was her friend Graeme. They just hung out and chatted. It was a nice dose of normal.

    • Practical Help

 If you want to ensure that your help is top notch, it is great to look over all the information that you need to know for getting to the appointment. If the address is unfamiliar, you can look it up on google maps. It is also smart to ensure that you have the phone number for the office, in case you get lost or stuck in traffic.

When you offer the ride, you can ask whether it would be helpful to take notes at the appointment or simply wait in the waiting room. Taking notes can be extremely helpful. However, it is also important to give privacy and personal space during the appointment, if that is what is preferred.

    • A Break for the Primary Caregiver

 When you help out with transportation or errands, you are also providing a break for the primary caregiver. This can give an opportunity for them to focus on self-care, avoid missing work and/or prevent caregiver burnout. It can also give them a chance to address the endless list of tasks regarding more personal aspects of caregiving. Never underestimate the value of giving a caregiver a break!

Posted by & filed under Cancer Caregiving.

Cancer Caregiving

This image is from a story by Gerald Saluti titled, “My wife has cancer…Now what do I do?

 

When someone close to you is diagnosed with cancer, you may feel as if your world has been turned inside out and upside down. It is both difficult and disorienting. During this time, you get to see what you and your loved one are made of. You may also get to see what your community is made of. Some people might let you down, while others will step up in surprising ways. At Tyze, we are proud to provide an online tool that allows you to organize your support network, stay connected, and ask for help when you need it most.

 

In our Tyze blog, our intention is to provide insights and resources to enhance your experience of caregiving. Today, we are looking at a fantastic book by Dr. John Garnand, titled “Cancer Caregiver Roles”. Donna Thomson from The Caregiver’s Living Room highly recommends this book for new cancer caregivers, especially men looking after their spouses who have had little caregiving life experience.

 

In this story, Dr. John Garnand explores and unpacks how being a caregiver for his wife changed everything. As a professor of business, it was a jolting adjustment to become a full-time caregiver. However, his background helped him to organize and articulate the lessons he learned, for the good of others. When his wife was diagnosed with cancer, he learned a lot about how marital roles can shift and change in these situations. The author shares what he learned and explores three new areas of responsibility that enter the reality of the cancer caregiver. In her review, Donna Thomson pointed out 3 key insights that are offered by this book:

 

3 Valuable Insights from “Cancer Caregiver Roles.”

 

1. Medical Support – How to better manage scheduling, medication support, monitoring side effects, managing pain, maintaining medical records, and advance medical directives. This book has a comprehensive list of cancer definitions, defined in simple and clear terms. It also includes common cancer treatments and possible side effects of medications.

 

2. Insurance and Financial Management – How to select the right insurance plans to help cover expenses.

 

3. Household Management – Being a caregiver can be like running a business. It is empowering to better understand nutrition management, safety, controls for infection, as well as providing physical, emotional and spiritual support. In addition to information and insights, John Garnand shares how he discovered aspects of himself that revealed his full humanity and capacity for empathy.

 

If you are caring for someone with cancer, you can also check out the following books:

 

 

Posted by & filed under Case Studies, Research, Stories, Tips On Using Tyze.

caregiving- long distance

This story was written by Dr. Kerry Byrne @Kerry_Byrne

kerryweb

 

A quick Google search about long-distance caregiving yields multiple results. Research studies, practical applied tips and stories from caregivers managing care from a distance abound. These are often geared to the person responsible for providing the most care or most responsible for care of a loved one: the primary caregiver. 

But what about those of us who are trying to help out from the sidelines of the family?

When you are not the primary caregiver, but want to contribute, knowing how to best help is not always straightforward. Long-distance caregiving became top of mind after a recent trip to see my grandfather.

According to my research in the science of caregiving, our family is taking all the right steps: exploring service options; planning to coordinate visits to provide a break for his wife and primary caregiver; working through short-term and long-term plans.

I feel pretty confident that my grandfather will stay in his own home, supported by a strong and resilient family. Yet, I had a hard time leaving my grandfather last week and returning home. I have this nagging feeling in the pit of my stomach. I feel helpless. I want to be able to do more and be there more.

One of the main reasons, I want to stay connected is because I like hanging out with my grandfather. I love hearing stories about how and where he grew up. I just like sitting beside him to be honest. Mostly I just want to be part of making him happy and safe. This is hard to do from across the country.

I am grateful to have spent time researching the realities of Tyze users and listening to their unique experiences. Within Tyze networks of care, it is common for different roles to emerge. These supportive roles are often based on the individual skills that each family member brings to the table. Family caregivers often liken their role to that of a full-time job. If the primary caregiver is the CEO, then what would your job title be in the care network?

 

Here are 4 suggestions for contributing to care from a distance as a supporter:

 

Hire yourself as the family journalist and head photographer:

Remember the photo of your daughter you just texted to your mom? Print it out, write a short note and pop it into the mail. Encourage other family members to send post cards and pictures of the family to the primary caregiver and the care recipient. Both people will appreciate the extra love, attention and recognition.

 

Act as the family travel agent:

A geographically dispersed family, caring from a distance, often requires multiple travel arrangements. Find out the best flight deals to the location of your loved one. See if anyone in the family has extra air miles they are willing to part with as their contribution to care. A family member might not have time to go and provide a break for the primary caregiver, but they might have tons of air miles accumulated through work travel. Or offer to help book a vacation for the primary caregiver who might be too overwhelmed to even contemplate where to go.

 

Study for Chief Care Research Officer:

There are usually many unanswered questions in care situations. Looking for information can be extremely time consuming. Offer to help your family find information about services or a particular disease. Even collecting general information (e.g., blood type, doctor’s name) about your loved one can really help in an emergency. Typing it up so it is all in one place makes it easier to access if crisis strikes.

 

Serve as the technical guru:

Working at Tyze means that I see the power of technology to help in long-distance caregiving. In our last survey 86% of supporters on networks said Tyze makes it easier to contribute to care from a distance. If you know more about a care circumstance because you are informed via your Tyze network, it is easier to figure out how to pitch in. Other practical technologies include remote monitoring services (e.g., CareLinkAdvantage) or technology designed to facilitate communication with older adults or persons with disabilities (e.g., CanConnect or Claris Companion).

 

In my search for information (I’m the Chief Care Research Officer in my family), I found several useful resources.Hope they help in some small way:

Are you caring from a distance? Please take a moment and share your experience with our care and support community – send in tips and strategies used. If you are already using Tyze, let us know what you think. If you would like to try it, click here.