Category Archives: Caregiving Advice

Caregiving Helps Dreams Come True

Sherri Snelling is the owner of Caregiving Club, a website dedicated to supporting caregivers.

Sometimes life doesn’t just offer lemons, it offers lemonade. Little did I know that caregiving for my father would also help me fulfill my lifelong dream.

caregiverclubFor more than a decade I had been involved in advocating for and educating family caregivers in my role as Chairman of the National Alliance for Caregiving and working for one of the world’s largest health and wellness companies on caregiving initiatives. However important these roles were, I longed to pursue my passion to become a writer and to lend my pen to raising awareness for the nation’s 65 million family caregivers.  In 2011, I took a deep breath and left my six-figure corporate job to start my own business, Caregiving Club. I decided Caregiving Club would be dedicated to creating educational content through written articles and online videos, consulting for companies committed to supporting its caregiving workforce, and collaborating with other like-minded companies who support our nation’s largest volunteer health care workforce – the 65 million family caregivers.

Brave New World

Most of my family and friends were skeptical and scared for me. Could I make any money doing this? Would I have to sell my house?  I had always been told I was fearless but I worried was I being foolish? While all around me were people pleading with me to play it safe, one cheerleader emerged: my father. My dad and I had not been close as I was growing up. He was a Formula One race car driver and his passion took him all over the world with little time to focus on raising a family. That job fell to my mother and my wonderful stepfather.  But taking risks was something my dad knew well – after all, to get into a tiny car that goes over 200 miles an hour is the ultimate risk.

Over the years, I had been a back-up caregiver to my mother for my maternal grandparents and I had helped care for my paternal grandmother. But I never played a primary caregiver role until I realized my dad’s health was failing. He was a lifelong smoker, he was a partial amputee from a staph infection stemming from a horrific racing accident, he had diabetes, high blood pressure, he was overweight and overall not the picture of health.  Without saying it, we both knew there was not much time left and this may be our last chance to have the father-daughter relationship we never had.

I’ll never forget his words to me when I told him what I wanted to do which included writing a book on caregiving and developing a caregiving reality pilot TV show. With his charismatic and winning smile he said, “Go for it. You’ll never regret pursuing your dreams but you may regret playing it safe and always wondering, ‘what if.’ There may be sacrifices but your personal victory will be sweet in the end.” Then he grinned and added, “You really are my daughter.”

Supporting Each Other

How right he was. I knew I had to make some tough decisions but all of a sudden everything was coming together to make this leap easier. I had to lease my home to free up cash to start my business. My home was my symbol of all I had accomplished over the years. But, with my dad ill and his offer to come live with him, the decision was almost easy. I knew I would have to spend a lot of time focused on writing my book, producing the TV show and everything else to get my business started but I could do it all from my dad’s home.  I could be there if he needed help in the bathroom, remind him to take his medications, make his meals, help transfer him from bed to wheelchair – all the things I had witnessed and written about that caregivers do. But at the same time, we had wonderful conversations when I needed a writing break and he gave me excellent advice about navigating “tricky curves” in my business dealings. He became the co-pilot to my life’s passion and I think it gave him a boost as he ended the homestretch of his life.

After two years of caregiving, I lost my dad to prostate cancer (the one ailment we did not know he had until the end). But, before he left, he saw my pilot TV program debut on RLTV, he applauded when my book was published, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care and delighted in my tales from the road as I traveled on my book tour.  Most importantly, we had the relationship I always wished we had. In the end, caregiving helped make all my dreams come true.

About Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self-care” while caring for a loved one.  Her book, A Cast of Caregivers – Celebrity Stories to Help You Prepare to Care chronicles celebrity caregiver stories and provides a what to expect when caregiving guide. She writes about caregiving for the PBS NextAvenue.org, Forbes.com, Huffington Post and was named #4 on the Top 10 Alzheimer’s Influencers list by Sharecare, the health and wellness web site founded by Dr. Oz. You can find more information at Caregiving Club.

Dads of Disability: An Early Father’s Day Gift from a Jedi Knight

cover-dietzGary Dietz is author of “Dads of Disability: Stories for, by, and about fathers of children who experience disability (and the women who love them).” Gary’s son, Alexander, has an interstitial deletion of the lower arm of chromosome 13.

Dads of children with disabilities are just like Dads with children who are not mentally or physically disabled. We have our good days and bad days, our heroic moments and selfish times, our regrets and our triumphs. Let me tell you about an early Father’s Day gift I got this year.

My fourteen year-old son, Alexander, has attended a specialized residential placement for the past two years due to multiple behavioral, intellectual, and sensory issues rooted in a 13q genetic deletion. Despite this drastic life change, we rock out at dinner every Wednesday night and charm the locals. We have sort of adapted to only seeing each other at home every other weekend. Together, we have done a pretty good job of sharing our home this past year with my significant other of three years and her two younger children.

But challenges arise, and they are not always with Alexander!

It is a three-hour roundtrip drive to pick up Alexander and bring him home for blended family time together. Although  I  look forward to this time together, things can go wrong—keys get locked in the minivan, soccer game schedules change at the last minute, Alexander might need to leave a movie after only 30 minutes—and it leaves me feeling uncharacteristically jealous of Dads with typically developing children. A Dad never really gets completely over the whole “comparing” thing between typically developing children and children with special needs. Despite my son’s excellent behavior, decent communication of his needs in the movie theater, fun on the playground, and patience with the schedule changes, I can feel a bit jealous of the other kids’ ability to just go to their soccer game and actually stay through the end of the movie to have a more typical Saturday than I get to have with Alexander. A daddy micro-meltdown isn’t really allowed. Just when a grown-up is ready for a good tantrum, the wisdom of children shows up and we realize how much fun our weekends together can be. My eight-year old stepson, Avery, stepped up on one challenging Saturday and announced: “It’s time to have some boy time. Girls stay upstairs. The boys are going to have a light saber battle downstairs.”

The force is strong in this one.

The next thing I know, Avery led Alexander and me downstairs, set up some rules, handed out the light sabers and then we started the epic light saber battle. Physical fun! Boyhood playing with toy swords!  Alexander was really doing well, much better than I think Avery expected. But we were all having fun. We were running around like crazy Jedi Knights and swashbuckling with our laser swords.

In those few moments of light-hearted fun I had a rare, brief glimpse of my son in a very typical activity and the “disability” melted away for that time.

A Happy Father’s Day to all the Dads out there—on their swashbuckling days and their meltdown days. We are all united in the love for our children of all abilities.

Visit www.dadsofdisability.com  to read Gary Dietz’s blog and find information on how to purchase his book.

There’s An App For That

Even if you don’t use a smartphone, you have likely heard of “apps” by now. App is short for application, which is a self-contained program or piece of software on a smartphone to fulfill a specific purpose. There seems to be an app for everything imaginable these days—including caregiving.

We have selected a short list of caregiving-related apps for you to check out:

  1. caregiving-appsCalm down and check your heart rate with your phone. The Azumio Heart Rate app is free and available on iOS and Android. All you need is one finger and a few seconds to detect your pulse. The app makers note that this data is for recreation and fitness uses only.
  2. The American Heart Association has created Pocket First Aid & CPR app, which is credited with saving at least one life so far. This app includes videos and colorful illustrations to guide a user through life-saving instructions. Available for both Google Android and Apple iPhone.
  3. Stop stress before it starts with an app. Certified by The American Institute of Stress, the Stress Stopper Pro app from Stress is Gone LLC aims to stop stress before it starts—precisely three minutes before it starts. At one touch, users are reminded to breathe or laugh. Currently only available for iPhone.
  4. CaringBridge, the non-profit that allows users to set up their own websites to share photos and personal information with a select audience, has a smartphone app for Google Android or Apple iPhone.
  5. You don’t need a lot of expensive recording equipment to document Grandpa’s life story—just download the Record Their Stories app and start asking questions as your loved one answers right into the phone. Read more about this app in our related article on making life stories into gifts.
  6. Koi Pond from The Blimp Pilots is a game as well as a relaxation app, complete with a timer for snoozing (see our current article on the benefits of good sleep) while you listen to the gentle sounds of rippling water. Users can “feed” the fish and let the fish “nibble” their fingers. Currently only available for iPhone.
  7. Walking is beneficial for everything from weight loss to dementia. Check out MapMyWalk, which allows users to yes, map a walking route, and also set fitness goals, share with family and friends, record duration, speed, calories burned and more.

We’d love to hear about apps that you find useful or just plain fun too.

 

Taking Time While Coping with End-of-Life Care

It’s OK to feel exasperated and worn down – you don’t need to feel guilty while a loved one’s life is fading, because many people feel the same way.

That’s the message from Lois Kelly, author of Be The Noodle: Fifty Ways to Be a Compassionate, Courageous, Crazy-Good Caregiver.

Kelly wrote her book after she was her mother’s caregiver near the end of a battle with cancer.

Her book contains, funny, sad and practical tips for family caregivers providing end-of-life care. She also talks about the need to take time to enjoy the good moments when they come along.

Click here for more tips and to read more about Kelly’s experiences.

The Satisfaction of Giving Care

It’s been 10 years since I cared for my mom and while the details are a bit fuzzy for me now (I’m 73), the feelings I have about it are not. I look back and feel a great sense of satisfaction.

Lynn Smith lives with his sister in Norman, Oklahoma and is the proud father of two daughters.

My mom had what I think was a form of Alzheimer’s disease in the late 1990s, but it was harder to diagnose then. She died about three years later. In the time in between, I moved back home and stayed with her. I had wrapped up my current work contract when I moved back in and while I never returned to my work, I never regretted it.

This started around Christmas in 1999. I was a contract programmer in Texas and my contract was over. I’d been working on the Y2K problem for companies like FedEx, Raytheon and Lockheed. The Lockheed project was a big one. Anyway, I went to my mama’s house in Shawnee, Oklahoma and found some “friends” who I thought were taking advantage of her. I sent them on their way.

I am the oldest son of five siblings, and it was sort of de facto that I’d be the one to stay with her. They live in Washington and Texas and Connecticut, and my sister that lives in Norman – she has her own business. She needed someone to stay with her and I was the only one that made sense to take care of her because I was single and I was done with that particular contract. I was prepared to do it and I think I needed a vacation from programming.

I didn’t have a question about it. It was a good thing. I loved being in that house with Mama. My daddy was a preacher and he died in 1991, but he paid for that house before he passed away. I loved to take care of the yard. I wanted to do these things for my mama. I wanted to cook and take care of the yard and take care of the house. For a while we went to church together.

As my mama got sicker, I would get up in the middle of the night – I set an alarm for every two or three hours – to check on her. I wanted to make sure she wasn’t wandering around. She wasn’t that bad early on, but we did take her car so she couldn’t drive. Every once in a while she’d go, “Where’s my car?”

One time I had to help her into the shower because she had messed on herself. I saw a look on her face of triumph, something like “We did it.” We were preacher’s kids – for a man to help with his mother, I’m sure it happens a lot, but it was a little awkward. I think of it as a very difficult thing to face, but I only had to do it once.

Mama developed a wound on her leg later on and two nurses came in to help treat it. That didn’t work though so I took her to another doctor. He figured it out and the wound healed. I learned that even nurses can’t necessarily cure a wound and knowing that gave me confidence. It’s always good to get a solution and you’re a part of it. You can’t control everything, but your presence is needed and you go forward.

Eventually Mama moved into a home and then passed away.

We’re getting ready to sell her house now and it’s hard to be letting go. When I lived with my mama it was the longest I ever lived in one place and in one house.

I don’t remember feeling overwhelmed. It was just I was there and she was there. I had a routine. I had done a lot of living alone. I think I probably – I think taking care of her and the yard and the house was actually a relief. Just thinking back it’s a nice feeling.

I know it’s different for each person, but taking care of my mama is one of the best things I did. I only have good feelings about doing it. I think you get to know yourself as much as your father or your mother.

It felt comfortable and doing it was a non-decision for me. I was there, I needed to be there. I wanted to be there.

 

Lynn Smith lives with his sister in Norman, Oklahoma and is the proud father of two daughters.

Join the discussion at Homewatch CareGivers’ new interactive forum: www.malecaregivercommunity.com.