Tag Archives: National Family Caregivers Month

Caring for Caregivers: Unsung Heroes of Health Care

We are proud to assist family caregivers during National Family Caregivers Month and throughout the year by helping individuals facing a medical crisis fundraise for their out-of-pocket costs, including caregiving expenses. This post from our friends at the Mesothelioma Cancer Alliance highlights how caregivers can care for themselves, too.


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November marked National Family Caregivers Month, a time to celebrate the silent givers behind those who need care. It is a month to show support for the tireless work caregivers put in for their loved ones. This year, President Obama released a presidential proclamation stating, “During National Family Caregivers Month, we reaffirm our support for those who give of themselves to be there for their family, friends, and neighbors in challenging times…” Caregivers are often the unsung heroes of home health care, so during the month of November and all year round, we raise awareness for these caring individuals and the issues and hardships they face.. It is a time to celebrate the selfless work caregivers do and provide our support.

Twenty-three percent of family caregivers who have been caring for their loved ones for five or more years report that their current health is fair or poor. More than 65 million people, or about 29% of the United States population, provide care for someone who is aging, chronically ill or living with a disability. They are spending an average of 20 hours every single week caring for their loved one. There is little wiggle room for “sick time,” vacations, or paid time off. Caregivers are often bound to a schedule that they must adhere to for the sake of somebody else’s health.

This information has inspired the Caregiver Action Network 2016 National Family Caregivers Month slogan, “Take care to give care.” It signifies that before you can take care of someone else, you must first take care of yourself. To better care for yourself as a caregiver, you can follow some of the tips provided by the Mesothelioma Cancer Alliance:


Do what you love.


Don’t neglect your own personal life to care for somebody else. Maintain relationships with friends and family. Set time aside to do activities that you enjoy! Even if you must schedule time on your calendar, it’s important to take time for yourself. It’s particularly helpful to take time doing activities that you like and ones that help you relax! Everyone needs a mental and physical break now and then.


Be heard.


Cameron Von St. James, caregiver to his wife, Heather, who is a 10-year mesothelioma survivor (click here to learn more about mesothelioma), offers these insights: if you know a caregiver, offer him or her your ear – someone to talk to. Caregiving can be stressful, so having someone to talk to helps. It helps caregivers to feel socially connected and reminds the caregiver that there are people who care about them.


Know your limits. 


Always remember that there are limits to what you can do as a caregiver. Set realistic limits for yourself and communicate those to your support system. Don’t be afraid to reach out to those around you for help and support.


Focus on your health and well-being. 


Get plenty of sleep, maintain a well-balanced diet and be sure to get exercise. Your health is crucial. It won’t be possible to care for your loved one to the best of your ability if your health and well-being are suffering. Be sure to visit your doctor regularly for checkups, and schedule an appointment if you are sick.


This guest post was provided by the Mesothelioma Cancer Alliance to support caregivers across the country. Want additional information on what it means to be a caregiver? Check out our archived Blog posts.

What It’s Like To Take Your Mother To College With You

As a college freshman, Kate Strickland was struck by a car while riding her bike. The accident left her paralyzed from the chest down and unable to use her hands or wrists. Unable to find a caregiver to fit Kate’s needs, her mother, Jenie, stepped up to fulfill the role, living with Kate in her dorm and attending classes with her at the University of Texas at Austin as she resumed her studies. In honor of National Family Caregivers Month, Kate told us her story.

Kate Strickland HelpHOPELive

Kate, 21, attends college with her mother


When you searched for a caregiver, what were some of your criteria?


We were looking for a caregiver or a group of caregivers who could be with me 24/7. Ideally, the caregiver would have a CNA [Certified Nursing Assistant] certification and be near my age in order to go with me to classes on campus. We needed somebody who would be comfortable getting me ready in the mornings, which includes helping with showers, a bowel program and catheter bags.


How does your mother serve as a caregiver for you?


My mom has been my caregiver in everything that I have needed since my accident. She showers me, does the bowel program, dresses me, feeds me and brushes my teeth. She does everything for me. She also goes to my classes and takes notes for me. It’s been very helpful to have my mother fill this role. Without her, I wouldn’t be able to go to school.

Kate Strickland HelpHOPELive

Kate (center) and her mother (left)


Has caregiving changed the relationship between you and your mom?


I think it’s changed our roles more than our overall relationship. Instead of just being mother and daughter, we are now caregiver and dependent. We spend all day, every day, with each other. Before my injury, I was independent at college and I wasn’t even talking to my parents every single day.


Is it difficult to explain to other people why your mom is always with you?


For the most part, I think it is fairly obvious why my mother is with me. It’s difficult to hide that I have a disability since I am in a massive power wheelchair. However, I think having my mother with me all the time changes the experience of making new friends in college. A lot of my peers feel like parents intrude on their college independence, so it’s an adjustment for them to understand my situation.


Can it be stressful to rely on someone else to help you?


Of course it’s stressful to rely on someone else – before my injury, I was always a very independent person. But, the fact is, if I don’t rely on someone else to help me, I won’t be able to do things like attend school, do my homework or even eat, so I have become accustomed to my total dependence on others.

Kate Strickland HelpHOPELive

Kate learned to adjust and accept care after her injury


What one word would you choose to describe caregiving?


The one word I’d use to describe caregiving is complicated.


Do you have any advice for another student who is learning to accept care after injury?


This may sound harsh, but what it comes down to is this: you can either accept your injury and your limitations, even though they are obviously not ideal, and receive the help you need to move on with your life, or you can refuse reality and help to just sit around staying stagnant.

Kate Strickland HelpHOPELive

“Receive the help you need to move on with your life,” Kate advises.


Have you had to adjust to college life with a caregiver? Share your story with us on Facebook or on Twitter.

Love, Commitment and the Honest Life of a Caregiver

For National Family Caregivers Month this November, we’re profiling individuals who have taken on a caregiver role to support their loved ones. We interviewed Rich Reedy, who has been supporting his wife since a 2014 accident left her with an incomplete spinal cord injury that requires constant care.


Do you consider yourself a caregiver?


I absolutely do consider myself a caregiver. We are fortunate enough in our household to have many people in our circle who we consider caregivers, including a young woman, Judy, who comes in twice a day to support [my wife] Eileen; and Patrick, Bridget and Jacquelyn, our three children, who help out significantly. I serve as a caregiver coordinator, in a manner of speaking: I’m not a boss and not a commander, just a “keeper of the schedule”!

Eileen Reedy HelpHOPELive

Rich Reedy (left) with Eileen Reedy (center) and family.


Is emotional support as important as physical support when you care for someone with an injury?


In my experience, emotional support is a vital part of overall healing. If my wife is not in a good place or if one of our caregivers is unhappy, that attitude is definitely contagious. It’s important to me to try to keep people happy. We want people to support Eileen because their hearts are in it 100%, not because they feel like they NEED to be there. If their hearts are not in it, we do whatever we can to get them there, so that emotional connection is maintained.


What helps you to find relief when you are stressed or upset?

I find my own ways to relieve tension but, in all honesty, when a bad mood starts, it often has to clear on its own. Eileen continues to impress us with her commitment to therapy and progress. Seeing that progress in action is a great motivator and encourager. To me, it’s important to reinforce the good, for my own benefit and for the benefit of other caregivers. I play a role in helping others by reminding them that they are doing a great job and are making an important contribution. Just like in life itself, in caregiving it can make a big difference to be positive and to look for ways to ease the stress and the repetition, so you can continue to take on challenges day after day.


What is the best part of caring for a loved one? The most difficult part?


The best part is loving Eileen and supporting her on her healing journey. Caregiving really can change who you are. I was a man of no patience – now, I am a man of SOME patience, at least! I’ve still got a long way to go.

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The worst part is struggling to find time to unwind and clear your mind and finding ways to avoid self-criticism. My day is composed of getting up early and making good use of every spare moment in the day. I run my own business out of my house, so I’m fortunate to be able to work in between assisting Eileen and supporting the rest of the care team. By 6 p.m., I have no brain left! Sometimes I just like to take a few minutes to sit and unwind at the end of a day. I honestly struggle to remember what my life was like before I took on this role!


Which words would you use to describe caring for a loved one?


The two words I’d use to describe caregiving would be love and commitment.


Do you have any advice for other families who are learning about caregiving after injury?


First, I would advise them to lean on professional support. While Eileen was in the hospital, the staff really showed me what my life would look like, even though I didn’t realize at the time that they were preparing me for that reality! I didn’t know that it was going to be a life-changing experience that would last longer than weeks or months. Professional support like that can really help.

Eileen Reedy HelpHOPELive

Eileen with a service dog, Moose.

I’d encourage people who are about to become caregivers to take a look at caregiver resources like books and manuals. Having a guide helped me a lot – I turned to a book called Taking Care of Yourself While Providing Care. The book is written for caregivers who care for people with spinal cord injuries, but its lessons are relevant to any caregiver. Managing self-care is something that professionals and books will always emphasize; it’s as important as ever to take care of yourself when you become a caregiver, if not more important. If you’re not in a good spot, you can’t help anyone else.

My last piece of advice would be to consider accepting outside help. Our twice-per-day caregiver, Judy, has become like a part of our family, but she still has her own life and her own world outside of us. That means we can chat, talk and laugh with her and those interactions don’t overlap with the rest of our family life. It can be a really nice diversion, and that person also comes in with a “clean slate” and not a host of other worries and long-term concerns to bring to the table. She can give Eileen her full concentration, which is helpful for all of us.


We’ll be celebrating caregivers all month. Have a caregiving story to tell? Reach out to us and you could be featured in an upcoming Blog post!

Learning To Adapt: How A Business Owner Supports His Wife After Injury

In honor of National Family Caregivers Month this November, we’re profiling individuals who play a key role in the care and happiness of their loved ones. In July of 2014, Kirby G. Smith was thrust into one of the most intense experiences of his life. Suria Nordin, then his fiancée, became paralyzed while vacationing with Kirby in Jamaica. By July of 2015, Kirby had founded SunKirb Ideas, a game-changing “smart home” installation and management company.

Kirby hopes to offer ease, efficiency and manageable overhead costs to families coping with a disability or injury. We picked Kirby’s brain to find out how smart home tech could revolutionize daily life for American families.

Kirby Smith and Suria Nordin HelpHOPELive injury spinal cord injury wheelchair SunKirb Ideas

Suria and Kirby in their neighborhood. Source: Wall Street Journal


After your wife’s injury, what modifications were needed to create a supportive home environment?


We had to modify multiple elements of our house, including our home entrances, the heights of our light switches, the bathroom configuration, our flooring and our emergency response options.


How did you begin to discover the benefits of smart home tech?


When Suria was injured, I wasn’t very motivated to seek out adaptive equipment because of the exorbitant prices for purchase and installation. As a result, I started to take a closer look at regular consumer products. It turned out that MANY of these products were already outfitted with adaptive technologies, but those features were not well-advertised.

Kirby Smith Suria Nordin HelpHOPELive home

Kirby found creative ways to make life easier for Suria. Source: Wall Street Journal

When it comes to adapting for disabilities, people tend to just purchase the tech without looking into the value. I realized that instead of asking families to look for expensive adaptive equipment, I could help them to adapt existing equipment for their needs. I realized this was really a gap in the market: services from a company that understands disability and aging directly.


What kind of cost-effective conversions did you discover?


The first four months after Suria was injured were challenging. We had no one to turn to to discuss life after injury when it came down to the nuts and bolts of home modification. In one instance, I searched for a piece of technology that would allow Suria to turn on the television with her voice. A vendor presented me a customized voice-activated device that would cost us $6,000. To me, that price was outrageous. Instead of making that purchase, I picked up a $400 Xbox console, which has built-in audio recognition that can completely control a television set, including sites such as Netflix and cable box or TiVo DVRs.

xbox

An Xbox can be used in place of a $6,000 modification.

The second piece of the puzzle was making physical adaptations without relying on installation services. Every adaptive tech business sold its product aggressively, but no one showed you how to adapt your home without paying a professional to do so. Different vendors handled each piece of the home, from the lights to the doors to the television, with huge service markups attached to each. The vendors pushed their own product and didn’t work on continuity. We would have had to find our own tech-savvy contractor to adapt the house on a physical level. Learning how to do that on my own gave me the experience I needed to help others do the same without paying exorbitant installation fees.


Why don’t businesses advertise adaptive uses for consumer products?


The average person doesn’t even think about these considerations. In Xbox’s case, the company wants to appeal to gamers primarily. Businesses don’t want to lose their core markets, so they tend to shy away from using language like ‘adaptable’ or ‘adaptive’ because they are so afraid of alienating their core consumers.

game marketing Battlefield

Afraid of alienating core consumers, most companies don’t advertise accessibility.


How did your professional background inform your business?


My tech background as a Senior VP of IT helped me to identify what was a good deal and what was an outrageous proposition. We had to design portions of our systems to accommodate persons with disabilities. I’ve been aware of that [need] throughout my career.


How can intelligent tech impact the lives of families coping with an injury?


Smart tech can provide cost savings while improving safety and comfort. A smart house can monitor energy usage and save you money while you’re away from home – for example, the system will adjust the temperature to save energy if it senses that you are away from your home and then, as it learns your schedule, it will bring the temperature back to comfort levels before you arrive. Our home tech learns Suria’s patterns and adapts to them. We have smart smoke detectors that pick up smoke and CO2, but the alarms can identify both the exact location of the issue AND the degree of emergency. If someone burns the toast and there is smoke in the kitchen, the device will inform us of the issue but will also note that it doesn’t pose an immediate threat to our safety. The sensors also detect motion and can alert us if we are away and there is movement in the house. They can also tell the thermostat we’re out, and lower energy levels to save power.

smart home

Smart tech can save users money and improve safety.


Can smart homes help caregivers, too?


As a caregiver, I use our home features as much as Suria does! Technology streamlines and simplifies everything. Caregivers can monitor their homes and their loved ones and keep in constant contact, especially in case of emergencies. When everything is connected, it becomes easier for EVERY member of the family to live a fulfilling life.


Are there benefits to using smart tech beyond physical disability support?


It’s nice to have equipment that assists you but isn’t stigmatizing. There is a ‘cool’ factor to a lot of this technology that supersedes the disabled label – in fact, my first SunKirb Ideas clients are not disabled. That’s what’s so powerful about connected home technology: it transcends traditional labels and limitations. I truly think we’re on the cusp of very affordable technology that can change lives, and I’m proud to be on the forefront of that.

smart house family

Smart tech can transcend the ‘disability’ label to appeal to everyone.


Why not expand your business to the general market?


After what I went through with Suria, serving families who are coping with disabilities is my passion and where my heart lies. I’m not speaking from theory when I address consumers – I’ve lived it, and that gives me a perspective I can share with others. By testing things with Suria, I was able to determine what would work for others with similar situations or even completely different concerns (blindness, for instance). I’m not in this to form a gigantic company – I am looking for fulfillment and the ability to provide a good service. I want to be able to walk away feeling like the money I made is supporting a worthy cause.


Like what you’re hearing? Share your thoughts on caregiving after injury, smart homes and disability-friendly technology with us on Twitter.