Help your caregivers (and help yourself) with an Advance Care Directive

Heather Jose photo.

Heather Jose

Some of the toughest questions caregivers face arise when our loved ones are unable to talk with us in a meaningful way. The process known as Advance Care Planning (or “Advance Healthcare Directive”) helps us to talk about the kinds of medical procedures we want—and those we don’t want—as we near the end of life. If you are caring for a loved one, this is something you may want to undertake now. And, if you’re a veteran caregiver, then you know what can happen. You should complete one for yourself.

In 2014, we plan to share occasional short videos with our readers. Some excellent videos are being produced by healthcare providers, nonprofit groups and leading authors. We plan to bring you only the best we’ve spotted. You can help by recommending a good video. Stop by my Facebook page, where it’s easy to share ideas with me, anytime.

The hospital-system team that produced this video was coordinated by Drew Weil, a friend of our WeAreCaregivers project. When the video was recently released, Drew recommended it to us. He writes that his team felt compelled to make this particular video because, “A recent study by The Conversation Project found that most Americans know they should have a conversation about their healthcare—yet less than half of us have done so. When we do this, we leave decisions up to family members, loved ones, or doctors who may not know our wishes.”

CLICK THIS VIDEO SCREEN TO VIEW …

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LEARN MORE …

The video provides a link to one website offering free materials for Advance Care Directives. Depending on where you are seeing today’s column, you will want to ask about this process in your own region. For our overseas readers: This Wikipedia article on Advance Care Directives explains some of the variation people find in these policies around the world.

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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).

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

Tips for Caregivers: Keep Up vs. Catch Up

Heather Jose photo.

Heather Jose

As readers, you’ve told us that you enjoy our useful tips. That’s why my column last week—about the point at which families must give up their “home”—included some inspiring quotes and tips from others. And, that’s why we collected that big list of fall-and-winter ideas for helping caregivers. Please remember: The invitation to add to those lists is wide open. Add Comments below, or email us at [email protected] with your ideas.

Today, I’ve invited Benjamin Pratt, author of the Guide for Caregivers, to share another of his tips. These columns are perfect to share with friends, or to discuss in your small group. Feel free to print them, email them, share them on Facebook or even repost an entire column. We hope you’ll get involved!

Let a SEAL be your guide: “Keep up!”

US Navy Seals face the waves

By BENJAMIN PRATT

U.S. Navy SEAL training is spiritually, intellectually and physically rigorous, rugged. SEALs have a saying about running, which they do as a group.

“It’s easier to keep up than to catch up.”

This succinct, crisp phrase captures wisdom relevant for our lives in so many ways. Students know that it is easier to keep up with their studies than to languish through a term and race to catch up at the time of finals. It is easier to exercise regularly than catch up after years as a couch potato; easier to keep our bodies at a proper weight than catch up with endless diets; easier to limit our spending by restrained buying than recover from mounting debt. It is vibrant, necessary advice that promises us success in our primary relationships, our finances, our health and our life goals.

It is a basic life guideline.

Living by this sage advice is of inestimable value for caregivers. We caregivers can become so focused on serving our beloved that we ignore caring for ourselves. We isolate ourselves and do not run in a group as the SEALs do, thus making us vulnerable to a life of forever struggling to catch up.

We must care for ourselves by engaging in relationships where we can share our story, feel nurtured, experience the comfort and compassion of others while we extend the same to our care recipient. It is vital that we keep up with good food and adequate sleep and exercise to sustain body and soul. Our well-being requires soul-nurturing with humor, song, poetry, gratitude, prayer, manual labor and frequent respites.

Be a wise self-caregiver by running in community.

Don’t attempt the job alone.

Practice the good advice of the SEALs: “It’s easier to keep up than to catch up.”

Please, share this column with friends! Add Comments with your own tips.

Thanks go to Shane T. McCoy for today’s photo of US Navy Seals. He released it for public use via Wikimedia Commons.

Print, share with friends: Caregivers Tips for Fall and Winter

Heather Jose photo.

Heather Jose

Thank you to all who contributed to our list as we prepare for the upcoming seasons. Feel free to print this set of tips; or, share this via Facebook, email it to friends, republish this in your congregation’s newsletter. We want to spread this collected wisdom. Many of these ideas will spark fresh excitement in your community.

Caregiver Tips
as Leaves, Snow and Year-End Holidays
Blow into Our Lives

Winter walk in the woodsGive the gift of time. Whether it is a social visit with the caregiver—or respite time, filling in for the caregiver, so they can get away a bit. Time is appreciated! If it’s possible, offer to take the one who requires care out for a while—so that the caregiver can have some time at home alone.

Plan a short fall color tour with an accessible bus for caregivers and the people for whom they care.

Test furnaces early. Start them and run them for a day to see if they’re in working order for the winter.

Organize volunteers in your community to check on wheelchair ramps at neighbors’ homes to ensure they’re in good repair for the months of leaves, ice and snow.

Survey caregivers in your area to see if leaf, ice and snow removal is arranged for fall and winter in the homes where they provide care. Consider organizing volunteers to help out where the caregiver is the one who’ll wind up having to rake leaves and push snow, if you don’t help.

Organize a volunteer crew to help caregivers winterize their vehicles. Got snow scrapers? Check windshield wiper blades? Want some teenagers to give the car a good vacuum inside? Busy caregivers often wind up with vehicles jammed with stuff that they never have time to clean up.

Tech Savvy? How about helping caregivers get setup with Skype or FaceTime or Google-Plus Hangout for the holiday season so that, if they can’t attend a gathering, they can still join in.

Plan a “thanks for the caregivers” Thanksgiving-theme meal in November complete with substitute caregivers to cover their responsibilities at home. This is a great way to get local caregivers in your area to meet and begin forming a support group of friends.

Plan now for just the right holiday gifts to give to the caregivers in your life. Buying local products is wonderful of course. Looking to sites such as NoMoreRack.com and EndOfRetail.com might help you stumble upon a bargain that can express appreciation without breaking the bank.

Organize respite care to give caregivers in your area a “day off” to shop for their own holiday gift giving.

Have a family caregiving arrangement? Consider putting together an album of photos so that the primary caregiver—and the person who they care for—can look through the images and reminisce.

If you are in a close-knit caregiving relationship in your family—and gatherings are planned over the holidays—offer to be the one who goes home early so the primary caregiver can enjoy the entire event. All too often, we simply assume that the usual caregiver will always be tethered to the schedule of the person who needs the care.

Plan a holiday-decorating party for caregivers and shut-ins, after checking on what is appropriate in each case. This can be a fun boost for the whole household and may help weary folks actually get a little decorating done, when they might never find the time.

Share fun holiday music with your community’s caregivers. The gift of music makes an uplifting addition to the environment in any home. Think of burning a mix-CD of music to give to caregivers.

Make a plan now so that caregivers can choose holiday services to attend and can have the time free. Christmas Eve services are extremely popular, yet caregivers rarely have a chance to find replacement caregivers. And, consider having a service in your community at which caregivers—and the men and women they care for—can attend. This may involve planning transportation and a sensitivity to the needs of everyone who gathers.

Thanks for these ideas go to many of our readers, including Suze and Jenny Brown of Chicago, Nance Edwards from San Diego, MaryAnne and Jake from New York, and Bob W from St. Petersburg, Florida.

Worried? Got an empty jar? Remind yourself of this truth …

Heather Jose photo.

Heather Jose

A note of thanks: Before I start today’s column—and the wonderful video that goes with it—I want to thank Kathy Macdonald for the four-part series on her journey as a cancer thriver. I also want to thank our growing readership for pitching in. As we move into the fall season of We Are Caregivers, please help us to reach new readers. If you have not done so already, get our free weekly email by clicking on the green “Subscribe” button, above. You can share favorite columns by clicking on the blue-“f” Facebook icon or the envelope-shaped email icon. Millions of Americans are full-time caregivers. Let’s help!

By HEATHER JOSE

Mason glass jar with lidThere is nothing like a little time spent lying on a scanning machine to help me reevaluate my priorities. Acutely aware of the fact that the results of the scan could send my life spiraling off in a direction I prefer it not go, I assess everything.

What do you think about in the midst of such check ups?

I think: “I could have done a better job eating, working out, or spending time with God.”

Then the wagering begins: “If the results come back ‘clear’—I will do better. I promise.”

A few hours later—when I’ve hear the outcome and know that things still are going well, so no immediate changes are required—I reflect once again. It occurs to me that the way I spend my time is more important than anything else in my life. Time is irreplaceable.

What if the results had been different? I am quite sure that I wouldn’t have found myself saying: “I wish I had spent more time on things that are unfulfilling, on people who are negative, or in situations that don’t matter.”

No, I want to think about time differently.

On the evening after my scan, I went for a jog—which I don’t really enjoy—but even that jog held a new meaning. I was grateful that I could do it. Sure it was hard, but I was pain free and able.

All of this reminded me of the Lesson of the Jar. I found a YouTube version that I can share with you.

Hope you enjoy it!

NOTE: The person who posted this video did place a brief advertisement in the video. It’s short, you can click an “X” to close it—and frankly this is such a great version of the story that I recommend watching it. If you don’t see a video screen in your version of this story, try clicking the headline to reload this column.