Caregiving Issues from a Broadway Star

The other night I did something I haven't done in a long time. I walked away from writing, and housework, and "go thorough stacks of paper night" to go to a show.
Anthony Rapp chose Pittsburgh's City Theater to launch a show he co-wrote based on his NY Times best-selling memoirs, called Without You.

Rapp is one of the original stars of the wildly popular, award-winning Broadway Rock Opera, and film, Rent. My husband and I got to see him perform shortly after the show's young creator, Jonathan Larson, died suddenly.
Without You revolves around Rapp's personal stories of love and loss. It touches on what it was like for Rapp to audition and win the lead part of Marc in Rent. It also tells a very personal, emotional story of how he dealt with his mother's long, hard battle with cancer.

Rapp was living in New York city, but would fly back home to see her. Every visit, he would wonder how she would look, and how she would sound.

Rapp tells stories that highlight the different family personalities that come out during tough times. And then, when talking and singing extremely touching songs about his mother as she was close to death, he screamed feelings that I think many caregivers are afraid to even think.
Rapp doesn't hide his anger. Why did his mom have to be sick like that? Why did he have to see her like that? It was heart-wrenching and uncomfortable to hear; but also strangely inspirational.
There are definitely angry caregivers out there; and I think it's important for those caregivers to know that it's OK for them to feel that way.
Some of the experts I've talked to for Take Care! tell me that most of that anger is rooted in the situation, not at the person. When a loved one is sick or dying, it's actually 100% normal to feel upset, and even mad. But, many caregivers don't allow themselves the freedom to experience those kinds of feelings. They work hard to block any negative feelings out; so that they can go about their job of trying to keep everyone happy and calm.
Part of the reason so many audiences love Rent is that it sends out a big message for people to do what they need to do to LIVE with disease; instead of die from it. Rapp seems to support that way of thinking and has formed healthy thoughts about pushing through tough times to get to the other side. He joined the Board of Directors for a NY based caregiving support group called Friends in Deed.
After the show, I got to talk with Rapp about Take Care! and about the caregiving themes I felt coming through in his show. He agreed to an interview for the book. I'm looking forward to talking with him.
j.

Online Support for Caregivers

When you're going through a caregiving situation, it's easy to feel isolated and alone. The truth is, of course you are not alone. More than 50-million people in the US are volunteer family caregivers. Many are going through the same kinds of struggles that you are going through.
Studies show that caregivers tend to withdraw from social situations, and even friends...partly because they feel they just don't have the time to commit to anything for themselves.
Staying connected is so important for your mental health, and I love what one organization I know about is doing to help caregivers stay connected---on their own time, without even having to leave the house!
The National Family Caregivers Association (celebrating its 15th anniversary) is launching e-communities around the country to help family caregivers to be able to reach out to others near where they live. These caregiving communities have already been established in Michigan, Nebraska, New Jersey, and Virginia, and more are on the way!
Through these communities, people register and then email others to begin conversations, and share helpful information.
I am looking forward to the opportunity to interview Suzanne Mintz, president and co-founder of NFCA for Take Care! Her personal story of caregiving is inspirational, and her crusade to make life easier for other family caregivers has wonderful support and power. I just received a copy of Mintz's book, A Family Caregiver Speaks Up, which offers information regarding how caregivers can best work within the healthcare system, as well as discussion on the effects of public policy in a caregiver's life.
Mintz has been on the Today show and other national programs as a strong advocate for caregiving issues. I'll keep you posted on when I'm able to have a discussion with her.
j.

Good Night!

Caregiving and sleep deprivation can go hand in hand. Our bodies desprately need sleep though, and it's important to try to find ways to increase the length and better the quality of sleep. The Take Care! chapter on Sleep has been keeping me up at nights lately.
I've been finding out some really interesting facts about the critical role that sleep plays in our lives. I've come across some pretty startling statistics about sleep---actually lack of sleep---too:
---The National Institutes of Health estimates 30 million Americans are living with chronic sleep problems.
---A conservative estimate states that 100,000 car crashes a year can be blamed on drowsy drivers.
---People who regularly get less than six hours of sleep a night die younger than those who get more sleep a night.
We work hard during the day and our body-machines need rest to recharge and recuperate. Studies on professional caregivers: doctors, nurses, physician assistants, etc.' show that percentages of errors in medical treatment go up when the professionals are on schedules that leave them sleep-deprived.
If the medical community is recognizing that they need to do what they can to restructure schedules so that well-rested teams are fully prepared to treat sick patients, we family caregivers should certainly pay attention. This is a clear cut example of the need for us to care for ourselves so that we can take care of others.
Gathering Ten Minute Tips for this chapter has been fun. I've learned about supposed sleep-inducing snacks, mental exercises, and even toe wiggling techniques!
Are you sleeping well? Please share your comments and caregiving stories with me.
Now that's enough...get to bed!
j.

Medical Advice

Seems that everywhere I go lately I run into someone who has a caregiving story.
We were out doing a TV shoot for a show on Health Care Careers that will air in September, and during some down time, Physician Assistant (and Associate Professor at Seton Hill University) Richard Hutchinson and I got to talk about my Take Care! book and concept.
Through his job, he sees the medical fallout of caregiving.

He told me that if he could offer caregivers a ten minute tip, it would be to use that time to get on the phone and schedule an important appointment for themselves.

Sounds like good advice to me...think about making that call.
j.

A Caregiving Family

I got to meet some strong, beautiful people at the Camp Variety for Children recently. The summer program is part of Variety the Children's Charity of Pittsburgh, which is the oldest children's charity of southwestern Pennsylvania.
What is now a global organization was actually started right here in Pittsburgh. On Christmas Eve in 1928, someone found a baby girl left on a seat in the Sheridan Theater in East Liberty. The baby's mother wrote a note that said her husband was out of work and they had eight other children to take care of. The mother said she heard of the kindness of theater people and hoped that someone there would be able to care for her little girl.
The theater manager and other businessmen from Variety Club agreed to support the baby, and the community quickly pitched in...so much so that the caregivers were able to donate toys, clothes, and food to other children and families in need. Soon the mission spread to others in the entertainment industry around the country and the world.Variety International now has 52 chapters in 14 countries and has raised more than $1.5 billion dollars!
The two-week Camp Variety for Kids is one of the Pittsburgh chapters big projects. The day camp serves nearly one-thousand physically challenged and disadvantaged children and their brothers and sisters every year.
The camp is fantastic for the children, but is also greatly appreciated by parents and caregivers, who see it as an incredible opportunity for much needed respite care; which is too often out of reach for families who are emotionally and financially drained from the constant caregiving they provide.
The little girl in the picture above is Amari. She just had her sweet sixteen birthday party. (Here she was getting into the spirit of the camp's Christmas in August celebration!) Amari's a camp veteran---she's been coming for eight years. Amari has cerebral palsy. Her sweet parents shared some of their feelings about caregiving with me:

And here's the President of the Pittsburgh Chapter of Variety Club, Christine Kobus, with her thoughts about the importance of making time for yourself:

Christine and I got to talk about the Ten Minute Tip concept behind Take Care! She has such a good perspective and inside knowledge on caregivers, and caregiving issues. I was eager to hear what she thinks about the book. Here's what she had to say:

That's what I like to hear! Thank you Christine---and everyone at the Variety Camp! The experience will stay with me for a long time.

j.

A Beautiful Caregiving Beginning

I'd like you to meet someone: My new nephew, Owen Michael!

He came into the world yesterday morning. My sister is now mom to two boys. It's really been something to see her go from my little sister to mom.

Although the traditional definition of caregiver refers to someone who provides support for a sick or elderly relative; moms of healthy babies are caregivers too.

Just like traditional caregivers, moms---especially new moms have to learn how to provide exactly the right kind of care that their loved one needs. Just like traditional caregivers, new moms can feel overwhelmed, and stressed.

They don't sleep as much as they should. They don't eat as well as they should. They don't take the time they need to care for themselves.

Just like traditional caregivers, new moms need support. When they don't take care of themselves, the family suffers. Have you heard the phrase, "When Mama ain't happy, ain't nobody happy!" ? It's a good one!

New moms can benefit from the advice for caregivers in Take Care!---especially because of the ten minute tips in the book.
The positive effects of taking ten minutes to relax, prepare a healthy snack, or get your muscles moving fan out to the whole family.

I've gotten some notes from readers who are pre-ordering Take Care! for a new mom in their life.

It makes me very happy to think that the book will be used as part of beautiful caregiving beginnings.

j.

Break Free

I had the pleasure of being reminded how nice it is to take a break from routine this past weekend. My family took care of the caregiver by taking me to visit friends who have a beautiful home at Deep Creek, Maryland; and then back closer to home out on a boat at Morraine State Park.
The time away proved to me that you don't need to invest a lot of time, energy, or money to plan out a little escape...just a change of scenery works wonders.
In Take Care! chapters on Stress Relief and Positive Thinking, I'm writing about why it's important to think of creative ways to manage the stress in our lives. I've interviewed several doctors and psychologists who agree with research that says the stress involved with caregiving can take ten years off our lives! Those chapters include many easy tips for how to ease anxiety and be able to relax and enjoy the happy moments in your life.
During our little getaway, our friends took us out on their boat late at night. It was very dark and very clear; and the sky was just gorgeous. I saw more stars than I think I ever have at one time. We even saw several shooting stars!
I also got to do one of my most favorite things: wake up at 6 in the morning, take a book down to the lake and sit and read and watch the sun come up...so peaceful.
Taking the time to look at and appreciate the beauty of our little patch of the big world really helped to put things in perspective, and recharge the mind and spirit.
We got to experience the power of laughter, too. With the kids on go-karts, bumper boats, and a pontoon boat, there was no shortage of entertainment!
I wanted to share a little of it with you...hope it puts a smile on your face.
j.