‘Can’t We Talk about Something More Pleasant?’

Heather Jose photo.

Heather Jose

Have you had one of these conversations?

A colleague and I were talking about our parents a couple of weeks ago, swapping stories about our fathers. Hers has been declining for years, but a fresh episode was troubling her. My father passed away last year. As we talked, the stories began to sound like—well, they began to sound like things we shouldn’t even say out loud. We were talking honestly. If you’re a veteran caregiver, you can fill in the rest of this story. You know right away the troubling kinds of issues we were discussing.

Roz Chast book cover Cant We Talk About Something More Pleasant

Click the cover to visit the book’s Amazon page.

It was a good talk! We laughed. We felt better.

As we were getting ready to leave, I said, “These are the things that no one talks about, but really should.”

Fast forward a week or so and I found myself listening to an interview with Roz Chast on NPR. She became the sole caretaker of her two elderly parents and she shares both the pain of this process and the laughter (and, yes, there is laugher, too). I immediately related to her new book: Can’t We Talk about Something More Pleasant? A Memoir. That link takes you right to Amazon, but if you want to listen to Roz on NPR, you’ll find two different interviews: Here’s the All Things Considered interview; and here’s the Fresh Air interview.

I find myself thoroughly relating to much of Roz’s book. Told in a way that only a cartoonist can, I am getting great relief from enjoying another person’s tale of life in my shoes. In her memoir, Roz certainly dares to tell the often unspoken “rest of the story.”

So this week my recommendation is: Check it out and let us know what you think.

Rodney Curtis: What I wish caregivers knew

Heather Jose photo.

Heather Jose

All of us who know Rodney are thrilled that he has completed his trilogy of books, taking readers through his struggles with both unemployment—in Getting Laid (Off)—and cancer—in A “Cute” Leukemia. Millions face these dire challenges. Rodney shows us how to tackle it all with humor. Today, you can learn a lot more about Rodney’s life and work in an interview with ReadTheSpirit Editor David Crumm. You’ll find that Rodney isn’t just some goofy guy. He knows a whole lot about defeating cancer. So, today, I invited Rodney to write a guest column.

WHAT I WISH CAREGIVERS KNEW

By RODNEY CURTIS

Attitude.

That’s everything, really. The relationship between the person who needs the care and the person who is trying to give it: It all depends on attitude.

When I first learned that I had acute leukemia—and, then, all the way through my long stays in the hospital, losing my hair and eventually a bone-marrow transplant—I heard from people these words: “I can tell you’re going to make it through this. It’s in your attitude.”

And it was.

That's Rodney hugging a friend in the summer of 2010 in the midst of his leukemia.

That’s Rodney in the baseball cap hugging a friend in the summer of 2010 in the midst of his leukemia.

Remember, “attitude” works both ways. First, there is my attitude—my perception of what I was dealing with and how I would relate to the people around me.  I am a true believer that the way you approach this whole experience says a lot about the outcome you can expect on the other end. Heather Jose calls her memoir about becoming a “cancer thriver,” Every Day We Are Killing Cancer. When she was diagnosed, she wrote those words on a little sign and carried that sign with her as a kind of motto, wherever she went.

What we are saying is: You have to approach this with your own passion, your own interests, your own personality behind it. Like Heather carried her sign—I carried my humor. I used a lot of humor, but that’s me: I love humor.

Maybe your thing is music—so you carry your music with you, wherever you go. I met a guy who decided his weeks in the hospital were his job and his hospital room was his office. Every day, his work—his job—was to get better. He thought of the nurses coming in for various reasons as co-workers coming into his office to help him do his job.

Second, the attitude of your caregivers is just as important as your own attitude. Get them on board with you. Because I loved humor, my caregivers loved to play along. I remember one day, the phone in my hospital room rang and it was a nurse, who was somewhere else at that time, laughing and saying: “Rodney Curtis! Turn on channel 7—STAT!” There was something funny on the TV that she wanted me to see. Because they knew my attitude, caregivers could become a part of that, too.

You’ve got to be honest and open.

If you suddenly find yourself needing help—let’s say you’ve just heard the diagnosis: “Cancer.” Well, I can tell you: It’s a mistake to step back from your friends and all the people who love you, if you can possibly avoid that. The best attitude includes reaching out to all the people around you. Use your connections. Use your social media. I mean, just think of all the tools and software and devices we have today to keep in touch! It’s brilliant.

And, in the first experiences you have in the role as a caregiver, you should be reaching out, too. Don’t be shy. Don’t pussy-foot around. Ask questions.

Here’s what happens all too often when someone is diagnosed with cancer: People hold back and are afraid to ask questions. They’re thinking: Ohhhh, Rodney’s got cancer. I shouldn’t ask him about it! But I’ll tell you: I’m sure that people imagine far more horrible things, if they don’t ask and don’t talk honestly with you—than anything I could tell them.

Then, if you want to help—step up and suggest something. Get specific. I know that people have different responses to this issue. From my own experience, I think it’s best when people who want to be good caregivers come up with real things they can do—and then offer to do these things, specifically.

Here’s an example: You can go up to a friend who needs help and you can say: “Hey, if there’s anything you need, just let me know.” And, yeah, that’s an OK expression of concern.

But I think it’s far better to say: “Can I make you dinner tomorrow night?” And then, “Is it OK if I make this for dinner?” Or, you could say: “Can I mow your lawn on Saturday?” Or, “Could my buddy and I come over and rake your leaves today?”

By offering specific suggestions, you’re telling the person what level of help you’re offering. You might hear back: “No, I really don’t need that.” Still, it gives that person who needs the help a good chance to say, “I don’t need that—but, I really could use this! How about doing this, instead?”

The real question is: Will we close ourselves off and back away from life and from other people? Will we become the patient in the bed? Will we give up our personalities? Or will we try, as best we can, to remain ourselves—and to help each other get through this.

To me, that’s attitude.

TAKE THAT NEXT STEP

VISIT RODNEY CURTIS’S AUTHOR PAGE IN OUR BOOKSTORE: Learn more about Rodney; read sample chapters—and use the easy links in our bookstore to buy copies of his book through Amazon, Barnes & Noble or other retailers. (Yes, you can buy print or e-editions.)

ENJOY RODNEY CURTIS’S LATEST COLUMNS: His department within ReadTheSpirit has been a favorite destination for our readers over many years.

CHECK OUT RODNEY CURTIS’S INTERVIEW: Our ReadTheSpirit Editor David Crumm talks with Rodney about how he learned to laugh in the face of fear.

SHARE RODNEY WITH OTHERS: In addition to buying his books—which we recommend, of course—please share this column with friends by using the blue-“f” Facebook icons or the small envelope-shaped email icons.

(Originally published at readthespirit.com, an online magazine covering religion, spirituality, values and interfaith and cross-cultural issues.)

Christmas gifts for caregivers: What do we give?

Heather Jose photo.

Heather Jose

It’s December and most of us already are shopping. Gift giving is the norm at this time of year to show appreciation to those who are caring for our loved ones.

But here’s the big question: What do we give?

SCENARIO 1: IN-HOME CARE 24/7

The answer to today’s question is likely to vary, depending on the caregiving situation. If you are looking for a gift for someone who is caring for a loved one 24/7 at home, then there is nothing like giving the gift of time. It might look like this:

  • Give a certificate for an afternoon or evening out that clearly states that you will stay with the person who is in need of care.
  • If you are handy, offer an afternoon of service in order to take care of needed chores around the house.
  • Give an afternoon out where you assist in helping the caregiver and the caregivee, so that they can go out for an appointment or simply for a meal. This is especially appreciated when the people involved are spouses and actively assist with the transportation and transfers along the way.
  • If you have more than one person in on the gift, provide a short getaway where one person takes the caregiver out and the other stays in with the one needing care.
  • Provide some freezer meals that are easily reheated. Better yet, take requests for favorite meals ahead of time so you can prepare foods you know the recipients will enjoy.
  • Offer to Christmas shop, wrap gifts, bake cookies.
You can find holiday fruit baskets in many stores, or you can make your own -- but did you know Amazon also sells and ships a wide array of gift baskets? Click this photo to see an example on Amazon.

You can find holiday fruit baskets in many stores, or you can make your own — but did you know Amazon also sells and ships a wide array of gift baskets? Click this photo to see an example on Amazon.

SCENARIO 2: IN A FACILITY

If you want to show your appreciation to staff members in a facility where your loved one lives, first and foremost check with the facility itself on staff policies. Some institutions have strict rules on whether staff members can accept gifts from residents or their families.

If they cannot receive gifts you can usually still get a little creative and show your appreciation by making your gift an “it’s for everyone” experience:

  • Put a decorated basket in your family member’s room along with a note that asks people to take one. Fill it with stocking stuffer items such as candy, individual hand sanitizers, or something that shows your family members personality. I once knew a gentleman that had lost his ability to talk. However, whenever we saw him he would give my kids a quarter. In his case it would be perfect to share that story and have a bowl of quarters out as a keepsake. My dad loved tractors so a perfect gift for his basket would be a bunch of miniature tractors. Staff members love to be able to get to know their patients a little better.
  • Consider sponsoring a pizza party (or something similar) for a staff during a certain shift. Let them know ahead of time that you will be buying lunch/dinner by having pizza delivered. Bringing donuts also goes over well.

If specific staff members can receive gifts, then anything goes. Wondering whether money is appreciated? Keep in mind that many of these employees are not making much money for the work that they do. A gift of money along with a note that says “Thank you—spend this on yourself” gives the person permission to do just that. Gift cards are also nice. Talk to your family member about who should receive such a gift. As an occasional visitor, you may not know which staff members have the closest relationship with your loved one.

With any of these ideas, it really is the thought that counts. Big or small they really will be appreciated.

Have you got ideas to share? Add a Comment below—or share this column with friends via Facebook (click the blue-“f” icons) or email (the small envelope-shaped icons).

Giving thanks to all of you … and a request!

Heather Jose photo.

Heather Jose

We began WeAreCaregivers about a year ago to discuss issues that are central to the lives of 1 in 3 Americans.

We share stories, offer tips and generally get the conversation going. If you share our columns—as we urge you to do each week—then you’re helping to spread this very important conversation.

So how do you think we are doing?

We have covered topics like thriving while recovering from cancer, introduced you to a young caregiver (millions of caregivers are 20- and 30-somethings), discussed death and family transitions, and have been blessed with great wisdom from Ben Pratt.

HELP US IDENTIFY TOPICS THAT MATTER TO YOU

As we move toward the new year we are working to help you access specific topics are areas of interest more easily. We are also constantly talking about what matters the most to you, the reader. We want to be respectful of your limited time and help you along your journey.

I am thankful that you are here and I look forward to more interaction in the future. Keep in mind you can “like” our WeAreCaregivers page on Facebook and follow us on Twitter.

And as always, we would love to hear from you in the comments section. Is there something you would like more of? Is there a topic we have neglected or maybe talked about too much? Nothing is off limits here.

How to have a happy Thanksgiving with a wheelchair or walker

Heather Jose photo.

Heather Jose

Will there be a wheelchair or walker coming to your Thanksgiving dinner this year?

This week, I’m keeping the column short and to the point: I’m sharing some very helpful tips that are well known to veteran caregivers, but aren’t so well known to the occasional caregiver.

PLEASE, think about friends and family coming to your holiday celebrations—and send them this column. Put it up on Facebook by using the blue-“f” Facebook buttons. Or, email it using the envelope-shaped icons. You can even print this column and physically hand it to friends.

Trust me: If you’ve got relatives volunteering to bring a disabled loved one to the family celebration—they need to see today’s column.

TIPS FOR A HAPPY THANKSGIVING WITH A WHEELCHAIR

Put away any throw rugs, especially those that don’t have a rubber backing. They can cause people to trip if they catch the edge. Uneven surfaces are more difficult to negotiate whether walking or in a wheelchair.

Clear away clutter and leave the widest pathways possible inside and outside of your house.

Have a couple of nice sturdy chairs ready that aren’t low to the ground. Lazy boys and cushy couches are great but they can be really hard to get out of.

Do a bathroom check. If there are no grab bars available keep in mind that people often will take hold—and push hard—on anything that’s available when they try to stand. This often leads to breaking toilet paper holders off the wall. The lack of a grab bar also can lead to falls that are not only dangerous, but can suddenly transform your whole holiday weekend in a tragic way.

If stairs are a must allow the person to hold on to a sturdy handrail rather than taking your hand. Permanent objects are more secure and you can be there to steady along with their hand on the solid railing.

Plan ahead for the best placement for your guest at the dining room table.

Finally if you aren’t familiar with transferring your loved one from one place to another—check out this video. Proper technique and a gait belt can make all difference. (If no one has introduced you to this common device, sometimes called a “transfer belt,” you’ll find that it’s a very useful, adjustable belt that aids in careful lifting of a disabled person. Amazon sells many varieties.)

 

IF YOU DON’T SEE A VIDEO SCREEN, in your version of this column—or if you’re printing out this column to share with friends: You also can access the YouTube video directly by going to http://m.youtube.com/watch?v=71WzN6oO6s4

In his newest book, ‘The Art of Healing,’ Dr. Bernie Siegel says: ‘Laugh out loud! It’s healthy!’

Heather Jose photo.

Heather Jose

WELCOME Dr. Bernie Siegel!

He’s the best-selling author, teacher and retired pediatric surgeon who has been helping us all rethink—and expand—the healing process for three decades. I’m especially thankful to Dr. Siegel for encouraging readers to get my memoir, Every Day We Are Killing Cancer. One of his major themes is the importance of doing everything we can to raise our spirits—and keep ourselves focused on happiness. That’s very much my message, too, in my writing and in my own workshops, Go Beyond Treatment. I know you’re going to enjoy this brief excerpt from Bernie’s new chapter called simply: Laugh Out Loud

LAUGH OUT LOUD

By DR. BERNIE SIEGEL

Click the cover to visit the book's Amazon page.

Click the cover to visit the book’s Amazon page.

(From his new book, The Art of Healing: Uncovering Your Inner Wisdom and Potential for Self-Healing)

LAUGHTER may be one of the purest of the healing arts. What I am telling you is that laughter is one of the best therapeutic activities Mother Nature provides us with, and it doesn’t cost a cent. True laughter is an outburst of expression of breath that involves the vocal cords and comes from deep in the belly. It’s caused by an irresistible urge to express surprise, mirth, joy and delight. Laughter stimulates the release of endorphins. These chemicals flood the body with a feel-good sensation that reaches every cell, delivering a message that says: Life is worth living, so do everything you can to survive.

Unlike the days when I was training as a physician, today we have studies documenting that cancer patients who laughed or practiced induced laughter several times a day lived longer than a control group who did not. Even so, in medical school doctors still aren’t taught the value of laughter as therapy. I certainly wasn’t in medical school; my patients were my teachers. They, the natives, taught me, the tourist.

I recall one day walking into the room of a patient, a lovely woman who I cared about, and she was dealing with a serious illness and several associated complications. I approached her room thinking about how I was going to help her and worrying about her treatment. When I entered her room she asked, “What’s wrong?”

“Why are you asking me that?” I responded.

“Your face and forehead are all wrinkled.”

“I am thinking about how to help you.”

“Think in the hallway, then,” she said. “I need you to smile when  you come in here.” She was right. I needed an attitude adjustment to be a better physician for her, and it was an adjustment I happily made. The best doctors learn from the critiques and coaching supplied by their patients, nurses and families.  I learned from all of these people that when I lightened up, encouraged laughter in others, and practiced it myself, everybody benefited.

Scientists have studied the effects of laughter on the body and identified a number of psychological benefits. Laughter increases activity in the immune system, giving “good” killer cells a boost, especially in their ability to target viruses, some tumors, and cancer cells. Measurements of immune system components show a lingering beneficial effect from laughter that lasts into the next day. Laughter appears to fight infection and abrasion or chemical insults to the upper tract of the respiratory system. Laughter is a natural muscle-relaxant; at the same time, it provides a good cardiac and diaphragm workout, improving the body’s capacity to use oxygen. This makes it an ideal activity for those whose ability to exercise is limited. Laughter also improves mood and decreases patients’ perception or awareness of pain. As in the case of appropriate exercise, there are no negative side effects to laughter.

So I recommend that you practice the expression of giggles and guffaws; become an artist, and fill your palette with laughter. Remember it’s not healthy to be serious and normal. Trying to be normal is only for those who feel inadequate. So be an infectious carrier. Spread joy and healing, and keep the artist within you alive.

CARE TO READ MORE?

OUR IN-DEPTH INTERVIEW WITH DR. BERNIE SIEGEL: Read The Spirit Editor David Crumm talks at length with medical pioneer Dr. Bernie Siegel about his life’s work, his new book—and the importance of encouraging good humor.

OUR RESIDENT EXPERT IS RABBI BOB ALPER: Bob is the only active rabbi in the U.S. who also is a full-time standup comic. Millions enjoy his routines on satellite radio as well. His new book is Thanks. I Needed That. (Perfect for holiday gift giving in November and December!)

CAREGIVING EXPERT & AUTHOR BENJAMIN PRATT: Ben writes an entire chapter on the importance of laughter in his book A Guide for Caregivers. More recently, Benjamin wrote a column on Interactive Laughter.

COMEDIAN & INSPIRATIONAL AUTHOR SUSAN SPARKS: ReadTheSpirit interviewed Susan on her amazing career in ministry and humor, especially her book Laughing Your Way to Grace.

 

CATHOLIC WRITER JAMES MARTIN SJ: ReadTheSpirit’s David Crumm also interviewed the famous Catholic journalist Father James Martin about his book on “holy humor,” Between Heaven and Mirth.

Learn your food traditions now; they’re powerful ‘medicine’

Heather Jose photo.

Heather Jose

LAUGHTER may be the best medicine—even my colleague Dr. Bernie Siegel, who graciously endorses my book, says laughter has healing power. But, the power of a favorite recipe? Well, that certainly ranks with laughter for raising our spirits—and our overall well-being.

HANDING DOWN THE CORNISH PASTY

I just saw this happen in my home. My father-in-law arrived at my door last Saturday to catch some sporting events that my kids were participating in that day. I was happy to see him, but I didn’t know he was coming.

“You came a day early,” I told him, “I am making pasties tomorrow.”

The sound that he uttered in response was someplace between a moan and a groan, followed by a coherent explanation: “It’s been a long time since I have had a pastie. I’ve been out for a while now.”

I proceeded to tell him that I had gotten a bunch of turnips in my CSA box that week so I decided to take that as a sign and make some.

Century-old postcard from Cornwall celebrates the local delicacy: pasties.

Century-old postcard from Cornwall celebrates the local delicacy: pasties.

“Oh they sound sooo good,” he replied. “Let’s not talk about it anymore. All this talk makes me want them even more.”

My husband’s family has Cornish roots. They came from Cornwall, England, to work the mines in Michigan’s Upper Peninsula. Eventually they were wooed downstate to work in the automotive industry. This is textbook Michigan history, complete with the tradition of pasties. My father-in-law grew up eating pasties on a regular basis. After he married, his wife learned how to make them and the tradition continued.

I only learned how to make pasties five or six years ago. My mother-in-law cooked all the time, but I never saw a recipe. Although I asked a few times how to make them, I knew the only way for me to really learn was to actually do it. We picked a Friday after Thanksgiving and I told her I would bring anything that we needed. My sister-in-law decided to check it out as well. It took the entire day, but by the end I felt confident that I could replicate her pasty.

I have made pasties a couple of times a year since I learned how to do it. It always surprises me how time consuming it is. And how much my husband loves them! I don’t care for them myself, especially eaten with ketchup as the family eats them—but I will never stop making them.

Being able to make a pasty matters even more since my mother-in-law passed away in 2012. I am so glad I can continue the tradition and pass it on to my children as well. I must say I find it interesting that my biological child doesn’t care for pasties, yet my adopted one (whose roots are definitely not Cornish) devours them right along with his father. I think that more than anything for me it is what they represent.

Pasties are years and years of love on a plate.

Oh, and yes, there is a bunch of them waiting just for my father-in-law in the freezer.

WANT MORE ON THESE THEMES?

COME BACK to ReadTheSpirit next week! My reference to Bernie Siegel, above, was not gratuitous. A new interview with Bernie will be the cover story in ReadTheSpirit on November 4.

CHECK OUT our FeedTheSpirit department in ReadTheSpirit. Every week, food columnist Bobbie Lewis brings readers a fresh story about the relationship between delicious recipes—and family, faith and culture. (And, for those of you wanting to know more about the traditional Cornish pasty right now, Wikipedia also has an extensive page on the tradition.)

GOT A FAVORITE FOOD STORY TO SHARE? Email us at [email protected] or leave a Comment below. (And, please, share this column with friends by using the blue-“f” Facebook icons or the tiny envelope-shaped email icons.)