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 (41)

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Miriam Behrens Apr 13, 2020 8:16pm
Bringing in new thoughts was uplifting to our emotional state. We were consumed by the burden of ill health and its demands, but new thoughts were like springtime to the soul. New thoughts contributed to conversation and escape for a few minutes from concerns and fears.
Nina Grebenc Mar 28, 2020 8:33pm
Thank you from our hearts, it has helped us stay connected with loved ones during the sad and dark times...given us light to look to, knowing our loved ones and their caregivers are love and taken care of too
Sara Thayer Mar 27, 2020 11:59am
Good morning from The Woodlands, Texas. Your post was so inspiring and quite informative. I had cancer when I was 3 months old and had my right kidney removed. It was called a Wilms Tumor and the surgery I had was the first successful of its' kind. I am now 70 and would like to offer hope and encouragement to others who are going through a hard time right now. Never give up as your healing could be right around the corner and with me I know I was saved to witness as a Jewish Believer in the Lord. Thank you again and may G-d bless you. I will practice your kind suggestions. Best Regards, Sara Thayer
Susan Berenson Mar 27, 2020 8:48am
Great suggestions! Thank you.
Evata Wallace Mar 27, 2020 7:52am
My niece had a similar tumor and after treatment which didn't help much she went on hospice care. Her husband was somewhat disabled having had strokes and her son lived 80 miles away. He was trying to work and do for them I lived 500 miles away and alone at 88 years old, I decided I would go and live with them as they needed someone there at night. The hired a daytime care giver but I did most of the work.cooking and the night duty. I Thank the good Lord he gave me the strength and patience to do this for them.
Jan hartman Mar 27, 2020 7:33am
I make small pillows maybe 10 By20inch pillows then pillow case for it so t can be taken off and washed. I usually Give two at a time with thoughts them using a pillow under their elbow, under their knee or any place. I make all sizes using whateverfabric I have trying to make some feminine with lace trim and some more mannish fabric. I also use fabric pieces I have a And make rice bags that can be heated in the micro oven.
Devish Mar 26, 2020 6:06am
Reach out with a phone call, just to connect, sends a message that you are not forgotten and you are loved and supported.
Peggy Donoghue Mar 25, 2020 2:21pm
Someone cut my grass. Another someone just visited. Another someone just called,....another prayed for me.....another ran an errand for me......another did my laundry.....another brought me a meal.....another sent me a special card in the mail with a little money in it. We can all be a blessing if we take the time to just do it.
Robin F Hardman Mar 25, 2020 9:55am
Awesome Information. Thank you. Blessings!
Erin Mar 25, 2020 9:30am
Kelly’s suggestions and reader’s comments are so helpful. One thing I have found to be appreciated is sending or giving the caregiver/patient/family a gift card for a service that delivers food. Even in areas where door dash etc aren’t available, there are pizza restaurants and even grocery stores that deliver. This gives families the option of using the gift when they need it. Bless you, Kelly, and your loving heart.
Julie Erdahl Mar 23, 2020 9:30pm
When my late husband had stage 4 cancer, we had began a siding project on our home. The old Masonite was removed and tyvek installed but we needed help getting started on the vinyl siding! Not only did a man from church have his son (who installed siding for a living!) come and put all the starter strips and channel up, we had about 13-15 volunteers show up at our house and got the siding DONE! My husband, who could hardly stand up at the time, came outside and sat in the shade, totally amazed! Some of the ladies brought food and beverages.. it was the most wonderful day and I don’t ever remember feeling more loved by a group of people... 💞
Jani Doctor Mar 23, 2020 3:28pm
Microwavable Thermal Neck Wrap-Can be for men or women. Could be herbal scented. A friend sent one when my husband was recovering from a stem cell transplant, and ir was avery welcome gift. Used it every day!
Bev Konz Mar 23, 2020 10:15am
Many wonderful suggestions including those in the comments section. I would like to add a few of my own thoughts having dealt with cancer myself along with several family members during the past few years. 1)Food donations are always appreciated. Be careful of highly spicy or overly fragrant dishes. Many times Chemo alters taste buds as well as aroma sensitivity. 2) Your time and visits are precious. Come often for short visits. Don’t over-extend your stay. Focus on positive topics. 3) Maybe start writing down memories of family gatherings or individual shared moments. Relaying the events verbally is wonderful but being able to re-read the stories during quiet times is uplifting for the patient and gives them the opportunity to share those memories with other visitors. (It also is invaluable to those left behind if the patient unfortunately loses the battle.) 4) Sometimes offering to pray together is welcomed. Have a priest, minister or hospice spiritual care volunteer visit and offer their blessings. 5) Sadly many patients do not survive. Keep the family and caregivers in your prayers. Make an effort to stay in touch. When the chaos subsided there is a definite emptiness ... a loss of the busyness during treatment ... a quietness when no one comes to visit anymore ... a definite loss of routine and purpose. Personally there was a recurring ebb of approximately three-month intervals when the reality and grief were most evident. Life seemed to go on as “normal “ for the rest of the world where ours would forever be “different”. Time lines of “before” and “after” measure memories. 5) Be honest. Express your love. I apologize for the length of this posting. It is therapeutic for me and hopefully offers some insight to others. In God’s name, blessings to each person taking the time to read this.
melissa ackley Mar 23, 2020 9:52am
Having our kids here and their WONDERFUL nonstop help is great!
PAULINE DOHERTY Mar 23, 2020 9:09am
Thank you. Wonderful suggestions. God speed your recovery!
Kaethlyn Elliott Mar 23, 2020 8:49am
Most helpful to me during lung cancer treatment was getting prayers ad loving comments in response to my journal entries. That they told me they enjoyed my entries, that they were up-beat and funny, gave me a smile knowing I’d given them a smile too.
Stephanie Mar 23, 2020 8:45am
I love baking and sharing. I know the patient can’t always eat what I make, but family, friends, and nurses can enjoy it. Also, just holding a hand or rubbing their arm - the human touch factor - makes me feel better, so I try that. I guess I just try things that make me feel better and sometimes they are what helps the person going through the trauma.
Joanne Lovrek Mar 23, 2020 7:33am
Knowing that I was prayed for ; along with cards , calls and food.
Linda W Mar 20, 2020 11:38pm
Our kids came to the hospital with a pair of elastic pajama pants, new socks and a new T-shirt after we had had a tremendous car accident in the mud
Pch Mar 20, 2020 4:55pm
Nice ideas.
Meg Nauss Mar 20, 2020 11:19am
I was the caregiver for my husband who recently died of glioblastoma in January 2020. He was 88 years old and treatment was not advised or wanted. WOW, this is wonderful to be able to share ideas. Friends wanted to stop by but it was hard saying he didn't want visitors (to view him in a deteriorated condition). Use a holiday gathering if the patient is up to it, to allow others to come and visit (and say goodby). This was good for nieces and nephews, and younger children. Family members should come by whenever they are able. I was very fortunate to have a sister nurse who was able to take the place of the 24/7 hospice nurse when it came down to the last week. Most importantly, don 't insist on anything unpleasant or uncomfortable for the patient, even if you think it is important. Give them permission to say NO. Also, I think it would be advisable to make a short video when they are having a good day and are agreeable. Wish I had done that. Maybe a close friend or family member would like to volunteer doing that. Make it like an interview and ask about long lost relatives and their memories of that person. Have someone offer to take time by the bedside so caregiver can sleep, at least 4 hours. Send messages and cards often, early in the illness, and weeks after the death when most of the cards have stopped. The beautiful cards and messages with memories recounted brought tears of joy to my husband and made a fitting memorial. A family member should reach out and contact all the out of state friends and request communications, and include a recent photo if possible. Another helpful idea was to make a playlist of all their favorite and meaningful songs over the years and play it to soothe and relax the patient. I agree heartedly with another's suggestion for Communion for Catholic patients, and caregiver as well.
Katy Pawlowicz Mar 20, 2020 7:58am
Love all your suggestions and are doing several of them. A woman in our neighborhood passed on a wonderful suggestion for the kids in our area. To get the kids out of their homes and doing something healthy for their body, mind, and spirit this is what was posted for St. Patrick's Day. Over the next few weeks we will be increasing our time spent home. If you have children it can be hard to find things to do . . . and not lose your mind. So I was thinking about a way for our community to still get outside, and do something fun, without touching or coughing on each other. . . . I thought it would be fun to have a Shamrock Hunt! All you have to do is put a Shamrock on your door or window on March 17. Color it, paint it, cut it out, print it from the printer, whatever. Then we can go around and walk and see how many shamrocks we can find. It's easy, no human contact. All you have to do is put a shamrock on your door or window. For the next 2 weeks this is what our community will be posting for these walks. March 20 - silly faces March 23 - animals March 26 - encouraging words March 29 - flowers April 1 - jokes Hope this helps!
Jerra Alexander Mar 20, 2020 7:48am
I am a Urcharistic Minister in our church. Whenever their is a friend that is Catholic whether a member or not, I offer to take them communion. It gives me an appointed time to bring them a treasured gift and a short visit after. I have seen patients with tears running down their cheeks they are so grateful to be receiving the Lord! It is certainly a gift to me as well, knowing I have brought them such comfort. I always try to leave them with a holy card or some little phamplet to read, maybe a prayer for recovery., or holy water. One of my friends always sends a fruit basket to their home. Anything is appreciated. It's just knowing that someone cares!! My daughter has breast cancer and her boyfriend put her Christmas tree up, one friend came and mopped all her floors. Her uncle came and did a complete list of handyman jobs! Some suggestions: clean the grill, wash the windows, clean up the yard, weed, plant flowers, clean the bird feeder and refill. Just be creative! Just be present!!
Mj Sparrow Mar 20, 2020 7:40am
Your suggestions are all good and would be helpful. While also recovering from brain tumour surgery, a friend had his crew start. Mowing our yard weekly. An AMAZING gift and break for my husband. While appreciating meals that were brought,, we kept getting meatloaf. I’ve since seen how giving train that sets it up for everyone to list what they’re bringing allows for variations. Simply a suggestion. MeatLoaf on a daily basis became tiresome after multiple days.
Brenda J Briana Mar 19, 2020 7:35pm
FABULOUS suggestions ... thank you for sharing the information
Beth Mar 16, 2020 2:55pm
Clearly, this is ready to print & publish! So informative & exactly what friends & family, church community need!
Brenda Fitch Mar 16, 2020 2:44pm
Such wonderful suggestions - some I had not thought about. Hoping you and husband are doing well. Bless you and your large supportive family . 💕💕💕💕💕
ANTONIO J. CANIANO Mar 16, 2020 7:41am
CARING FOR YOUR LOVED ONES IS SO IMPORTANT TODAY WHEN YOU STAY AT THER SIDE OR HOLD THEM IN YOUR ARMS FROM BED IN THERE HARD TIMES FROM BEING SICK AND HAVING SURGERY FOR A BRAIN TUMOR YOU SHOW ALL YOUR LOVE FOR EITHER FOR YOUR WIFE OR HUBBY OR MOTHER OR FATHER OR FATHER IN LAW OR MOTHER IN LAW I RETIRED TO TAKE CARE OF MY WIFE WHO HAD A BRAIN TUMOR AND HAD SURGERY AND STOOD WITH HER THROW EVERYTHING EVERYDAY SHE WAS VERY STRONG DURING HER SURGERY AND RECOVERING AFTER 13 YEARS OF BATTLING HER BRAIN TUMOR SHE COULDN'T HANDLE THE PAIN AND SUFFERING ANY MORE AND PASSED AWAY ON JUNE 10. 2002 IN MY ARMS AT 10;30AM I HAVE HER IN MY HEART EVERYDAY AND THATS WHAT GETS ME THROW THE DAY I KNOW GOD IS TAKING GOOD CARE OF MY ONE AND ONLY WIFE AND LOVE OF LIFE UNTIL WE MEET AGAIN IN HEAVEN .
Lisa McGarry Feb 18, 2020 8:12pm
Just having someone come by (with or without lunch). Tell me that they would be here to visit with my sick father for 2 hours and I should go do what I want to do. They even told me this ahead of time so I could plan. What a wonderful thing to have the 2 hours to get things done and know that my dad was happy and cared for!
Becky J. Lang Feb 12, 2020 10:20pm
I have enjoyed reading of the love and support on this site. I am a thirty year survivor since being diagnosed with a brain tumor. The tumor was benign meaning not cancer. The tumor was in an area that made it life threatening though. I have a shunt in the brain that keeps me alive. It has been a rough journey and Kelly gives some excellent tips!
SunnyCA Feb 10, 2020 2:41pm
When a woman in our bookclub shattered her elbow and couldn't cook for her children, our leader sent around a schedule on which we could all sign up to bring her a meal for her husband and 2 kids for the week after her surgery. It could be take-out food or homemade. I brought cooked lasagna and ravioli from my favorite Italian market and it was a huge hit. I was so happy to have a tangible, organized way I could show I cared!
William Cameron Feb 05, 2020 11:29pm
I love you all, you made me happy. My first day with Caring Bridge. Bill
Valerie Smith Feb 05, 2020 6:11pm
This is so helpful and the tips for assisting and showing support are heartfelt and brilliant. You have captured so many of the "little things" that we as cancer patients and their caregivers don't even know to think about to ask for that are a huge help. For example, my nephew offered to visit weekly to vacuum for us. I would never have asked for this help. But, it has been such a gift of his time and so appreciated! My children, my family and friends have given us their time to help in the small and large ways. I have been overwhelmed by their support and love. All of this is like a warm blanket wrapping me up with encouragement and love.
Gay Travis Certain Feb 01, 2020 8:47am
Send your love not your solution. Many people are problem solvers . Take this vitamin, go to this doctor, you must have more faith. These thing are their way of dealing with their own uncomfortableness. It’s understandable but is not helpful . Tell them you love them and maybe a reminder of a joyful time you had together.
Amy Jan 27, 2020 6:23pm
Kelly--Like you, I started a Caring Bridge site for my husband, who had been diagnosed with brain cancer - in his case, a gliosarcoma. While being his caregiver, I broke my humerus (shoulder bone), and modified the site so that it now supports both of it. Between my broken bone and his brain cancer, out biggest need is transportation - neither one of us should be driving. I'm going to put a link to your posting on our site and encourage people to be creative in their offers of help. Thanks for posting. Amy Henchey Silver Spring, Maryland
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)