Category Archives: Guest Post

It’s National Dog Day!

Guess why we’re wagging our tails? National Dog Day is here! We have heard countless incredible dog stories here at Help Hope Live, from service dogs with amazing skills to never-leave-your-side canine companions who ease the burden of a painful diagnosis.

The purpose of National Dog Day is to celebrate ALL dog breeds and acknowledge what a difference a dog can make in our lives, whether for companionship, protection, or disability and illness support. You can join us in celebrating National Dog Day this year simply by spending quality time with your favorite canines!

Here are a few tributes to the power of paws from our clients.

“Until three days ago, I didn’t fully understand the significance of a therapy dog. A dear friend of mine adopted one for me, knowing I was looking for a lap pup to be my companion as I wait for two new lungs, and to help me transition post-transplant.

In just under 72 hours, Sadie, my 8-year-old rescued Pughasa, has, in fact, rescued me.

I’m usually a glass half full (or more) kind of person, always looking for the lessons in life as I deal with a lifelong illness resulting in 9 months on the waiting list for a bilateral lung transplant. My strong faith pulls me through most times. Lately, I’ve been dragged down – perhaps by the intense heat, perhaps the unknown of when “the call” will finally come. All I know is that the bad days have recently surpassed the good. My friend Ann heard it in my voice as I was fighting the self-pity tears.

Now, my life has changed in a way I wasn’t quite prepared for: this little abandoned dog worked her magic in my heart within minutes. And doesn’t she know it!

The love in her eyes when she gazes at me is only matched by the love in mine. She basically won’t leave my side, although the other full-time human in our household, my husband, Steve, may provide some intrigue for her from time to time! Look at that underbite – how can you resist!

If you are dealing with an incredible difficult health issue, or an emotional one for that matter, please consider a rescue dog. My load has been made so much lighter as I tend to this newest addition to our family. It takes the focus away from my daily challenges to love on the most adorable 4-legged that has ever walked this Earth. Really – I’m serious!”

From Rachelle Ledbetter, Southwest Lung Transplant Fund

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“Our furry friends are Mari and Fozzie. Fozzie is training to become Marisol’s service dog. We hope that he can assist Marisol with her PTSD, learning to recognize before she has an anxiety attack to help her calm down. Fozzie will accompany Marisol at the hospital and at school.”

From Marisol Ramirez, Mid-Atlantic Multi-Visceral Transplant Fund

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“I got Vedder when my middle sister passed away. He was her dog. Vedder was with me for the two years when I was on peritoneal dialysis, by my side every single night as I hooked up to the machine.

When Vedder passed, I got Bailey, four years after my kidney transplant. Bailey helps me to stay focused and busy post-transplant.”

Frances V Gilmore, South-Atlantic Kidney Transplant Fund

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“Owning a home in the mountains in Colorado has some lovely perks, but it can pose quite a few challenges for a wheelchair user. Wheeling to the post office one day with a Border Collie that I was dogsitting, I started getting fatigued on the last hill. It made me think, “I want one of these of my own…but I need a dog that can PULL!

I called a friend who trains service dogs and we discussed what I was looking for in a dog. Soon after, she found a Shepherd-Lab mix with a strong body and a great mind – a lady ready for the job!

The folks at Paws in Hand Canine Consulting are helping to train her in pulling, tugging, and retrieving with the eventual goal of having my dog pull me in my wheelchair, tug heavy doors open, shut doors behind me, drag heavy bags or boxes, retrieve objects from another room, and lay by my consistently-cold legs to help keep them warm.

I cannot wait for this new addition to my life and to build a relationship with a dog that can help me go farther and accomplish more every day.”

From Mary Ruth Armbruster, Midwest/West Spinal Cord Injury Fund

We hope you’ve enjoyed these special stories of love and support. Do you have a dog story to share? We’d love to hear it! Tag @helphopeliveorg on social media and share your special memories with us.

Voices of Hope: Someone Strong to Lead the Way

On her blog Struggling with Serendipity, Cindy Kolbe documents the journey she and her daughter, Beth, took after Beth sustained a spinal cord injury in May 2000 at age 14.

I drove back from my son’s college concert near midnight. Exhausted, I glanced at my 14-year-old daughter, Beth, asleep in the passenger seat. We were only 10 minutes from home. I thought I could make it without falling asleep. Then I heard a road sign flatten on concrete. As the car flipped three times across a bare Ohio field, we left behind an ordinary life.

I escaped with cuts, bruises and blood-matted hair. Beth was another story. The car was cut open to rush her to a helicopter that would take her to the nearest hospital. A doctor in Toledo told my husband, John, that she was paralyzed. When he broke the news to Beth, she paused only a moment before simply responding, “Let’s talk about what I can do.”

Later, when I arrived, Beth lay flat in a maze of tubes and wires, her pretty face swollen, her neck in a brace. She greeted me with a small smile. Her usual upbeat attitude was muted but present–I should have felt gratitude for that, but I didn’t. In disbelief, I stared at the girl in the bed. How could she smile?

When Beth slept, a surgeon guided me to a chair. He was kind, but his words were devastating. The bones in her neck were shattered. After surgery, he told me that her spinal cord was severed at the C6-7 vertebrae. With all four of her limbs damaged, she was now a quadriplegic who would never walk.

The loss of hand function seemed especially cruel. Her fingers didn’t work and her muscles began to shrink (atrophy). Among many health risks, pneumonia stood out as a leading cause of death for quads—along with suicide.

With one mistake, I had hurt everyone I loved.

Whenever I closed my eyes, I saw the upside-down car and Beth slumped over her stomach on the ceiling, her neck at a disturbing angle. The image haunted me. How easy it would be to lose myself under a blanket of guilt. Instead, I focused on small moments. Beth needed me. I turned her to the side, straightened a sheet, adjusted a pillow, and stayed in sight. Sleepy, in a morphine haze, she told me, “I like it when you hold my hand.” Crying quietly, I could not make myself grateful for the partial feeling in her hands.

When Beth was transferred to rehab, we shared a room with a girl in a crib with high sides who made sad sounds. She was alone with a brain injury. We met a man with a spinal cord injury who needed a ventilator to breathe; he moved only his head. A teenager with paraplegia refused to get out of bed and moved to a nursing home; he had full use of his hands and arms.

As physical therapy started, Beth lay face down on her stomach, unable to lift her shoulders off the mat. Her body was moved for her. She had no strength. The therapy session finished with the difficult process of transferring her into a wheelchair. Beth opened her arms and I leaned into a hug. Her bent hand softly patted my back. Suddenly, I was grateful for arms and wrists that move. For lungs that breathe. For her ability to feel me pat her back in return.

After a month in rehab, Beth tried to sit up on the mat. She started on her back and concentrated on throwing one arm over the other to roll onto one side. It took several tries. She pushed down with her hands to raise her upper body incrementally to a shaky sitting position for the first time. Her body tottered back and forth in a battle of balance–Bambi on ice. My instincts screamed to help her, support her. Instead, I turned away to wipe my eyes.

She leaned forward and planted a hand on each side to steady herself. She looked up and smiled when she heard me clapping with the therapists. Even Beth seemed surprised by, and glad for, every small thing.

My daughter insisted on starting her freshman year of high school on time about three months after her injury. On the first day, she pushed herself slowly down the halls in a manual wheelchair. Four years later, she was able to independently care for herself and live in a dorm or apartment with no assistance, a rare feat for quads.

Beth’s attitude propelled her forward with me in tow. Little by little, I chipped away at my millstone of guilt. Sometimes we need someone strong to lead the way.

Now, all I see is what she can do.

Cindy Kolbe is a lifelong disability advocate who lives in Summerville, South Carolina. She managed group homes in Ohio and ran a nonprofit in Massachusetts. Her daughter Beth graduated from Harvard and Stanford Law and is employed as a health policy lawyer in Washington, D.C. Access her Blog and reach her via email.


Why I Play Video Games for Charity

In July, the video gaming community came together once again for a good cause by livestreaming for hours straight to raise money for HelpHOPELive. The organization For Cairne Sake engages in monthly livestreaming events, selecting a new nonprofit cause for each mini-marathon.

Joshua Dunn, Farronox to his fans, is the organization’s Lead Project Coordinator. We asked him about gaming for a good cause and building a community of compassion for charity.

Farronox For Cairne Sake

Farronox is the Lead Project Coordinator for the charity livestreaming group For Cairne Sake

What was your first interaction with charity fundraising?

The first charity marathon I viewed was the Minecraft Marathon by the Qubetubers to benefit the nonprofit Child’s Play. I happened to tune in just as streamer Syntria said, “This is going so well, we’ll have to extend it through to tomorrow!” After that, I found the Mario Marathon, and those were the discoveries that set me on my path.

Why did charity streaming appeal to you?

What inspired me was the passion. Passion for gaming, first of all, since gaming is a pastime I love and spent most of my time on as a child. My passion for gaming turned into a passion for compassion. I knew I would be able to spend time I was already spending to empower others to do good things. It was my way of being sure I would leave a mark on the world.

For Cairne Sake HelpHOPELive

For Cairne Sake pledges to raise awareness as well as funds for nonprofits.

My favorite thing about streaming for charity is the community it builds. The connection between gamers who love these causes and support them is full of compassion, and that shared compassion makes great things happen.

Why don’t you stream for personal financial gain?

Streaming for charity carries a twofold gain. It multiplies the good you can do personally by drawing in others to achieve something greater together. It also builds a community of compassion that, if nurtured, can grow to encompass even greater things, far more than anyone can do alone. Streaming for charity can also help unlock financial stability if you use it to build your reputation and influence.

For Cairne Sake HelpHOPELive

For Cairne Sake streamers work together to complete lengthy gaming marathons for charity.

How do you choose which causes to support?

I think that everyone is naturally inspired to support causes they are affected by personally. There’s a heartfelt connection that each community of like-minded individuals shares that makes people in those communities want to help each other. That’s why For Cairne Sake makes the effort to allow for a majority vote when choosing our monthly supported charity. By choosing through majority vote, we allow our team to express their passion for the cause that they hold dear while allowing us to support a varied range of nonprofit organizations.

Are you glad you chose HelpHOPELive?

So glad! This past event has become one of my favorites. Having a contact from the charity working so closely with us, tuning in, and actively engaging with us was hugely energizing. My favorite part of the marathon was during streamer Spiritonfire’s Chrono Trigger stream. We were able to discuss some of the important issues facing the people who work with HelpHOPELive and clear up misconceptions about transplantation and living donation. So many great things were discussed, including the day-to-day realities involved in the cause we were fundraising for. We were careful to make sure that the game got a decent amount of attention as well!

For Cairne Sake HelpHOPELive

Farronox calls the HelpHOPELive For Cairne Sake event “one of my favorites.”

Do you think it’s important for streamers to remember that they can raise funds AND awareness?

Absolutely! It’s easy to get bogged down by whether or not your event is a fundraising success. Over the years, I’ve taught myself that anything done for charity is good and “enough.” It’s still hard to remember that at times. But it is during those times when donations are low or non-existent that you have to remember that even if you don’t raise anything, you still talked about the charity’s mission, educated yourself about something new, and had the opportunity to teach others.

We never know what will happen after an event. Who’s to say that one of the viewers engaged in our past marathon isn’t going to donate to HelpHOPELive at a later time? What matters is that they saw a passionate gamer talk about a cause that means something to them.

Can you give some tips to someone who wants to get involved in charity streaming?

Make the charity the priority. Be sure to talk about the cause enthusiastically and often. Try to educate as many viewers as you can about what you’re doing and why you’re there.

Interact with the chat. Answer questions, respond to comments and engage with those who come to watch. Call out lurkers (viewers who don’t say anything) because they are as important as the people who do interact. Inviting them to be involved is often enough.

Communicate why your event exists. This goes beyond the chat or info about the nonprofit. Make sure information about the event is visible wherever it can be viewed. Why your stream exists is the first thing people should see, whether on your Twitch page, visually displayed on the stream layout or on your website. If people don’t know why you’re streaming right away, they may not stick around long enough to find out.

The hardest part is drawing in viewers. It requires dedication and a lot of effort, but the effort is rewarded: with more communication and interaction comes more viewers, more donations and more people looking to do the same great things for a good cause.

Where would you like to see For Cairne Sake go in the future?

I would love to see For Cairne Sake become an organization that can stream for charity more regularly and for longer periods at a time. It would be nice to have a large team capable of managing a 24-hour schedule so we can raise for our Charity of the Month every day of the week rather than just two days out of the month.

For Cairne Sake HelpHOPELive

Farronox believes raising awareness is as important as raising funds for a charitable cause.

The end goal is to reach that point and also be able to confidently turn For Cairne Sake into a registered nonprofit, enabling us to do much more to directly support causes around the world.

What does HOPE mean to you?

Hope means finding your away when you are lost. It means the possibility of survival when all paths have grown dark and you think there’s no chance.

Thanks for taking the time to speak with us!

I look forward to our next HelpHOPELive event!

You can connect with For Cairne Sake on and on Twitter @ForCairneSake

How To Save A Life In 30 Seconds

Blood cancers like leukemia kill more children in America than any other disease. As part of the largest network of bone marrow donor centers in the United States, Delete Blood Cancer has registered more than 600,000 donors and provided over 2,000 bone marrow transplants to patients in need. We spoke to Desirée Chavis, the organization’s communications specialist, about making an impact through bone marrow donation.

What is Delete Blood Cancer’s mission?

We seek to register as many eligible and committed bone marrow donors in the U.S. as possible. We are also an international organization with a presence in 5 countries. Part of our mission is also to bust the myths surrounding donation and try to empower others to be advocates for donation themselves. We want people to know that it takes just 30 seconds to swab your cheeks and register as a potential donor. You could change or even save someone’s life!

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What would you say if someone asked, why should I become a bone marrow donor?

  1. It’s an amazing and unique experience.
  2. Your bone marrow will replenish itself.
  3. Receiving bone marrow can be lifesaving for patients. Without a donor, many face extreme medical, financial and emotional hurdles–you are giving them a precious gift.
  4. Minorities and mixed race recipients can have a harder time finding a donor, so your contribution can really make a difference in their lives.
Nick Karavite HelpHOPELive

HelpHOPELive client Nick Karavite received a lifesaving bone marrow transplant.

What are some of the most common misconceptions about becoming a bone marrow donor?

The biggest misconception is around the methods of donation and the pain involved in donating. Whether you donate through the peripheral blood stem cell method (PBSC) or the surgical method, you’re back in action very quickly. They are both same-day outpatient procedures.

PBSC is used for 75% of donations. With this method, you receive a daily injection of filgrastim 4 days pre-donation to increase the number of blood stem cells in your body, so you may feel like you have the flu for a few days. During the several hour donation, a machine takes blood from one arm, removes the blood stem cells and returns the blood to the other arm. You can use your iPad, read magazines or watch TV while you donate.

A Delete Blood Cancer donates via PBSC

A PBSC donation in progress.

Surgical donation is used in the other 25% of cases. In these cases, surgeons go in with a special syringe (to extract bone marrow) while you are under anesthesia. On average, it takes a little over an hour and you don’t feel anything during the procedure. You can still leave on the same day, making sure that you limit strenuous activity. Most donors describe feeling slightly tender or bruised at the injection site.

Has your work allowed you to hear stories from patients whose lives have been changed by donation?

Our main mission is to save lives; we encounter many rewarding moments while working toward that! Something amazing about our work is that a donor in any country we serve can fill the need for a patient outside of those borders. Up to one year (or two in some places) after transplant, a donor and recipient cannot have direct contact, but after that, if the desire is mutual, they can begin direct contact with each other and even plan to meet.

I remember one incredible story about a recipient in Texas, Larry, and his donor in Germany, Johann. A year after Larry’s transplant, Johann came to visit him in Texas! Larry brought up an amazing point: he and Johann now share DNA. They were basically “brothers” because of Johann’s decision to donate. Larry was so excited to meet him, and Johann was welcomed into a new family. He gained that family by saving a life.

wilson donor

Larry and Johann were linked by Johann’s lifesaving donation. Source: Houston Chronicle

Go to to register to be a donor now. Share your donation or bone marrow transplant stories with us on Facebook and on Twitter

Coming Home For The Holidays

At HelpHOPELive, the holidays have always represented a few key things to us, including community, hope and home. For many families, the holiday season represents new beginnings or the conclusion of one journey as a new adventure or challenge begins. That’s why we were so pleased to find the uplifting artwork created by Thomas Swanston, artist and husband of paralyzed artist Gail Foster.

Artists Gail Foster and Thomas Swanston

Artists Gail Foster and Thomas Swanston

Tom’s work is inspired and informed by his perception of home and healing. “For me and my wife, the holidays are a hectic time that have often included hospitals, “ said Tom. “Gail has come a long way, so our holiday will be filled with more gratitude than ever before.” Tom frequently touches on the theme of migration in his work. As he described it, “”Migrations remind us of nature’s ability to renew and revive itself… Such is also the human life.” Here are a few more of Tom’s reflections on that physical and emotional journey:

“Migration speaks to the mystic movement through space and time, from one location to another and the ultimate return home.”

Thomas Swanston

“The recurring patterns…remind us of nature’s ability to renew and revive itself, rhythmically changing, yet remaining stable and consistent through the seasons.”

Thomas Swanston

“Like migratory birds, physical and spiritual travelers alike explore new or familiar places, always to return to the one special locale they call ‘home.’”

Thomas Swanston

“All journeys have a purpose and an end, no matter how long they might be or how far away from home they may take us. We don’t just hope something will happen, we put one foot in front of the other every day.”

Thomas Swanston

Tom has graciously allowed HelpHOPELive to incorporate his artwork into our limited edition holiday card for our most loyal and generous donors who represent the Kolff Society. “Working with HelpHOPELive has provided us with the opportunity to raise funds for Gail’s personal care, insurance premiums, uncovered medications and a whole host of other expenses related to her health that have, up until now, been beyond our capabilities,” said Tom. “I always like to contribute to worthy causes and HelpHOPELive certainly fits that bill.”

For Tom and Gail, art is a way of life. The two own StudioSwan in Atlanta, a gallery that showcases their vast range of artistic talents.

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!