Brain Tumor Stories Caregiving

Caregiver-Turned-Patient Shares 14 Ways to Help That are Truly Helpful

I first became a CaringBridge author in March 2012, after my husband, Bob, was diagnosed with a rare blood disorder called POEMS syndrome. It is a shirt-tail relative to cancer, and required Bob to have a stem cell transplant at a hospital far from our home in Chaska, MN.

While we lived for months in a rented townhome in Rochester, MN—Bob could not be more than 10 minutes away from Mayo Clinic in case something adverse happened—I signed up for CaringBridge. It was by far the easiest way to keep family and friends updated on Bob’s condition. People could opt in for email or text notifications when I updated his Journal so that everyone could receive the same information at the same time. Brilliant!

A Remarkable Emotional Outlet

Kelly comes from a family of farmers, and her brain-tumor surgery was at the height of the fall harvest. She said she never would have imagined her family being able to appear at her hospital bedside … but they did.

Journaling was therapeutic for me during Bob’s medical treatments. As his sole caregiver, I found CaringBridge to be a remarkable emotional outlet. After a long day at the clinic, sometimes I sat at my laptop and wept as I wrote. But Bob has beaten the odds! Hallelujah!

Fast-forward to 2018, and the shoe has switched to the other foot: I am now using CaringBridge as a patient instead of a caregiver. In October 2018, I was diagnosed with a glioblastomaa Grade 4 brain tumorbetween my frontal and parietal lobes.

Watching our struggle to keep loved ones updated, my sweet sister-in-law, Sarah, asked if she could set up a CaringBridge site on my behalf. What a godsend! She and Bob were my CaringBridge co-authors when I was too sick to write. But as I started to feel better, I was able to make updates on my own.

Comfort Through Writing

Instantly, I recalled the comfort generated through writing. It was equally relaxing and healing for me to jot things down, especially with the way this cancer came into my life like an out-of-control curveball.

As I keep on swinging at this curveball, I have heartfelt thanks for all those who have offered encouragement and hope. It has given me a purpose—a reason to get out of bed—especially during my darkest days.

In response to my CaringBridge updates, dozens of people told me that I should I write a book. My initial response was to laugh it off and think, “Sure, in my spare time.”

But I started to feel that sharing what has happened to Bob and me could be helpful to others. So in 2019, I published a book titled, There’s Something Going on Upstairs. (The title comes from something my doctor said to me in the scary days before an MRI confirmed that I had a brain tumor.)

Healing Power of Storytelling

While writing a book had not been on her bucket list, Kelly said the process showed her that many unexpected gifts have been associated with her diagnosis of glioblastoma. Part of the proceeds from There’s Something Going on Upstairs are being donated to brain-tumor research.

Something I had not expected through all this writing is how healing it has been for me to tell my story. If these words might be able able to help even one person walking a similar path, the book will be a win.

This next bit of information I am sharing is not intended as a request for help for Bob and me. But I hope the advice might help you support a family member, friend or even a complete stranger going through something like we have been through.

So many people want to know how they can help during a time of desperate need. They ask … and we shrug in response. It is a combination of not knowing what is needed, and perhaps not knowing how it will be received. Everyone wants to help, but few know what to do.

Here are some suggestions from the other side of the fence. Please know that beyond a shadow of a doubt, any fighter and their over-extended caregiver would be eternally grateful to receive any one of these:

1. Bare Basics. Grocery Shopping.

Think paper towels, laundry detergent, bread, juice, eggs, bananas. Shop in-store or online, and have the order shipped to their home. Forget about brands, specific tastes or questioning whether it is something your loved one would like. Indecisiveness like that prevents your follow-through. When a family caregiver can’t be away long enough to run out an purpose toilet paper or milk to settle a patient’s queasy stomach, they will kiss you for bringing it to their door. Trust me.

2. Offer Rides to Treatment.

Many caregivers juggle full-time jobs and have added hurdles, such as busy meeting or travel schedules. Receiving the gift of transportation on a hectic day brings a huge sigh of relief.

3. Bring a Meal.

Basic dishes that are easy to freeze and reheat become lifesavers. Recyclable aluminum pans or reusable plastic containers that don’t need to be returned are a plus. Since even well-meaning visitors can tire out a patient, and germs are a factor, offer to leave meals in a cooler outsider their door.

4. Pet-Sit or Plant-Water.

I don’t have a pet myself, but I understand that it is expensive to board pets in a kennel. So if you know that a loved one has to go out of town for a procedure or appointment, offer to care for their furry family member. And should you be one of the green thumbs of the world wishing to help, volunteer to water interior or exterior plants.

5. Text an Inspiring Quote.

We warriors need all the encouragement we can get, and hearing from you means the world to us. A few kind words—especially question-free messages not requiring a response—breaks up the day and lets us know that we are loved.

6. Consider the Caregivers.

Their lives have dramatically changed, too. Invite them to a game, a car show, a round of golf, a cup of coffee, or a simple Sunday afternoon drive, just as you did before. Even if their patient is not feeling up to leaving the house, a short break means a lot to a caregiver. If it is not a good time for a break, they will let you know. They will appreciate the gesture and the glimpse of normalcy.

7. Mail a Gift Card.

Unexpected expenses—extra gas for treatment travel, extra meals out, astronomical medical bills—take a huge toll on every patient’s budget. A gift card for gas, groceries, restaurants, hardware stores or hobby/craft stores is a welcome surprise. If your loved one appreciates reading or music, and Amazon or iTunes card could provide new entertainment to get them through long treatment sessions. A prepaid Visa gift card could be perfect for helping out with medical co-pays.

8. Take on Some Chores.

Pay for a one-time service, or volunteer a few hours to help with cleaning, moving, snow-shoveling, washing windows or holiday decorating. This also could be a perfect service opportunity for a teen-ager. If the kids have adult supervision, the chores could be done while the patients and caregivers are at the hospital or clinic or out of town.

9. Donate Some Vacation.

Unpaid leave from work is sure to cause additional financial hardship. If donating a vacation day or two is an option for you, ask some other co-workers if they also might be willing to donate time, too. This could be a huge help to a patient or a caregiver who has to be away from work.

10. Think Soft and Cuddly.

If knitting is your thing, consider making a prayer shawl, soft cap or socks. Thoughtful gifts like a new set of slippers, pajamas, pull-on pants or v-neck shirts that allow chemo-port access would be a definite plus. Pamper your loved ones with items that are cozy and comfortable.

11. Send Snail Mail.

Nothing brightens a day more than finding a hand-addressed note in the mailbox, among the medical bills. Recognizing the handwriting and return address will instantly bring you to your loved ones’ hearts.

12. Donate Blood in Their Name.

Cancer and other illnesses prohibit patients from donating, so we appreciate those of you who donate in our honor.

13. Host a Scarf and Hat Party.

If chemo is going to bring about hair loss or someone you love, bring together some close friends, serve some light refreshments and shower your patient with a variety of headwear options. It is sure to make the transition easier.

14. Help With the Kids.

Taking the kids for an impromptu sleepover or a Saturday-morning outing may give your struggling loved one a little bit of rest and quiet that they desperately need.

Kelly said that in her time of need, family and friends made her feel that she was the only person on their radar, even though she knew they all had busy lives. “I am forever fortunate to be loved by you all,” she said.

While this list doesn’t include all the things you can do to help, my hope is to inspire the countless people who don’t quite know how to be helpful. Throughout life, especially in times of hardship, we are definitely stronger together. Personally, I appreciate every thoughtful person who takes the time to act.

What Things Have Helped You?

What did others do for you or someone you were caring for? Please share what helped you most in the comments below.

Comments (6)

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Cheryl Beattie Jan 23, 2020 3:14pm
this has been very helpful and inspiring. Thanks
Arnette Wallentine Jan 23, 2020 11:58am
The Lord has blessed me with good health so far, but when there have been a few "bumps in the road" I really appreciated phone calls. Just to know someone cares enough to have a phone visit is good healing when you are hurting. I think about you and Bob a lot but sorry to be so negligent in letting you know that. Praying that all continues to go well for both of you.
Jeanne Richard Jan 23, 2020 7:28am
Kelly, I am reading your book right now, and your story is identical to my daughters. She was diagnosed one month after you in2018. She is doing optune therapy, so far so good. I pray for all who have gbm. Caringbridge is wonderful and your suggestions for caregivers are right on. Ps, my daughter had a blast at her hat party, I wish you healing and strength and the grace to accept what is
Kathy Jan 23, 2020 5:16am
Great suggestions, Kelly. I appreciated getting cards and phone calls.
Cathy Jan 23, 2020 5:02am
I too have been a caregiver and a brain tumor survivor! What helps? Stopping in for a short visit, bringing a meal, helping with yard work, giving the caregiver time to get away, offering transportation to treatments! Don't just do it one time, keep in touch weekly, let them know you care and "want" to help!! Prayers!!
Amy Hammers Jan 22, 2020 9:43pm
When my husband died the kids were 11, 11 and 9. Their schools/classmates gave the kids gift cards put into a homemade crafted turkey as it was close to Thanksgiving-so kind. When the twins started driving a man from church took them out practice driving several times-so helpful toward getting those mandatory hours. We have been shown many kindnesses through the eight years sine he passed (from kidney cancer)