“I can do that for you, hon.” Hubby couldn’t reach his feet due to swelling, and I offered to clip his toenails. I’m sorry to report that I may have nicked the top of his big toe. (But only because he jerked in anticipation of me clipping the top of his toe.)
In view of my tendency toward injuring the patient, I thought I’d better ask the experts what they did well while caring for a spouse, a child, a parent with cancer.
Photo credit: Pixabay
From the experts, here are 15 ways to rock cancer caregiving:
1. Ask yourself, ‘What does the patient want?’
“I shaved my head when [my wife] started chemo … Twelve years later I still shave my head so I can feel in alliance with cancer patients.”
“My wife let us know that she didn’t want any head shaving in her honor! It was enough for her to lose hers; she didn’t want any lookalikes,” wrote a caregiver husband. “The most important thing for her was to know I would be there every step of the way. So far, so good.”
One friend said she’d have shaved her head if she thought it would’ve helped. “But if [my husband] had to look at me that way, it would have made him feel A LOT WORSE!!!” No females in that household shaved their heads.
A breast cancer survivor wrote: “After my hair began falling out in chunks, we decided to take charge … [My husband’s] hand trembled as he shaved my head with tears in his eyes. Very emotional day.” And then, not long afterward, while my friend was having a chemo infusion, her husband showed up with his head shaved!
A daughter says that her mother survived 12 years with cancer, but her father declined treatment when he later was diagnosed. “He chose not to live a few extra months if it meant enduring the misery of treatment,” wrote the daughter, “and we respected that.”
2. Keep things normal, whatever normal is.
A young mom caring for her husband in a busy household with two active children wrote, “The best thing has been keeping the kids busy and in a normal routine, but at the same time accepting that we also have a new ‘normal’ for our family.”
“Keep things as normal as you can as you are loving them up and trying to make every minute count,” wrote my friend who had just a few months with her husband after his diagnosis.
“This whole experience was really tough on [my husband] whose personality was that of the ‘man in charge’,” wrote a breast cancer survivor. “We kept our activities going as close to normal as possible.”
3. Make time to just be with the patient.
One husband wishes he had taken more time off work to be with his wife. I can identify with this. I regret that I didn’t start FMLA a little sooner. But I was saving vacation days and I was so sure Hubby and I had one more season of winter holidays together — one more Thanksgiving, one more Christmas.
Another husband who worked out of a home office with some flexibility, drove his wife to all doctors’ appointments, including some that were out of state. “I consider myself very lucky to have been with her when she needed me the most.”
A young friend wrote about “going to so many of [my mom’s] appointments, cooking dinner at my parents’ house and eating with them as often as possible, and going with my mom to pick out her wig.”
“My husband did so many wonderful things,” wrote a breast cancer survivor. “Still does! The best was making me laugh, cracking jokes and being silly; making me comfortable at home, getting me tea, blankets, whatever I needed; just being with me, not even talking or doing anything, just hanging out.”
As Hubby slowed down, I (Marlys) set an intention to also slow down. I put away projects and lists, and we took slower walks together. We sat in lawn chairs overlooking the river, eating simple al fresco meals. I read more and knitted more — anything I could do in the same room as Hubby dozed. And I don’t regret a single slowing-down day.
4. Keep communication lines open.
“Talk. Be open,” said the mom of a young teenaged son who died of cancer.
“My husband [kept] my family, friends and coworkers informed via thoughtful emails,” wrote a breast cancer survivor.
Marlys: After Hubby’s diagnosis, we lost the first full year to despair. My mother lived with us and was sinking into dementia. When my younger brother flew her to Florida for a month-long visit, for the first time in a year, Hubby talked about all the side issues that accompany a terminal cancer diagnosis — death, financial fall-out, feeling like a failure as a man. And talking made all the difference in the world.
5. Keep hope alive.
“Try to keep a positive attitude,” wrote the husband of a lung cancer patient, even though he admitted this was very difficult.
One wife shared that she and her husband started a Bible study together. She also wrote out scriptures of encouragement and placed them all over the kitchen, which not only provided hope for the patient, but also for her as the caregiver.
Marlys: Hubby was the analytical sort who first saw all that could go wrong before he saw the possibilities. He liked to refer to himself as a realist. “No, honey, you’re a pessimist,” I corrected. He’d grin his cute grin and then meet me halfway, “Okay, I’m a realistic pessimist.” (I don’t think there’s such a thing.) When it came to cancer, though, Hubby didn’t give up. He didn’t accept the physician’s deadline; instead, it was a challenge for him to beat. I loved that my realistic pessimist husband faced cancer with optimism and hope.
6. Try to see the humorous.
A breast cancer survivor says it meant a lot when her husband cried and laughed with her. “Tears came to both of us when he removed the pressure dressing after my mastectomy, something I could not do myself.” And then later, as my friend and her husband were waiting in an exam room after the reconstruction surgeon had given them a silicone breast implant to touch and look at, they engaged in a game of catch, testing the implant for strength. The absurdity of the situation caused them much laughter, “and laughter is good medicine for the body and soul!”
7. Be as organized as possible.
A caregiver with young children said they bought a large dry erase board calendar “to write all of our appointments and the kids’ activities on.” Not only did the calendar keep the family organized, it also helped ease the husband’s frustration from not remembering things.
One wife — knowing how much her husband would enjoy company but knowing how easily he tired — actually scheduled his male friends to come for a short visit. Now that’s brilliant.
8. Run interference when necessary.
A prostate cancer survivor says he couldn’t handle small things right after surgery. “[My wife] ran interference for me with all nurses, docs, friends, comfort dogs, the Pope.” Which freed him up to rest. “Only very important people got through her to me.”
9. Take good notes.
Several caregivers mentioned being at all doctor appointments and taking copious notes. The mother of a teenaged son who survived cancer wrote, “Our family became a TEAM. Each of us would hear or remember different things that at some point became critical.”
The wife of a cancer survivor admitted taking good notes because, “it seemed like [my husband] and I could be in the same room and hear completely different things or interpret them differently.”
The wife of a throat cancer survivor, when she saw depression sink in, reached out to the doctor prior to appointments so he could gently address the issue without her husband needing to bring it up.
A prostate cancer survivor writes, “I would swear on Bibles that I understood what [the doctor] said. But I was wrong more often than right. [My wife], being in hyper hyper caregiver mode, took copious notes and asked tons of questions. I just sat there and went ‘Duh!'”
10. Don’t be afraid to ask questions.
“Don’t be intimidated by the doctors,” wrote the mom of a teenager who is surviving cancer. “You are basically their employer … you have the power!”
Marlys:If you don’t understand something, ask questions: “Can you please explain it to me like I’m in eighth grade?”
11. Become a medical expert, sort of.
A kind hospice nurse took one friend aside and explained that one of his jobs was to make sure his wife received adequate pain medication. “It was better and easier to keep pain under control than it was to recapture it once the pain broke through.” This young husband said he took those instructions to heart.
One wife tells about traveling to distant medical appointments while her husband was still on IV fluids. On their first trip out of town, her husband had to use the restroom and the only place was at a fast food restaurant. “He was on crutches as well,” said his wife, “so I watched men coming out of the restroom and asked if it was empty, then I went in with him to help.”
A young mom with four children wrote, “I became an uncertified infusion nurse and an expert at feeding tubes. I calmly dealt with enemas, feeding tube failures and all the other joys of cancer treatment.”
I (Marlys) emptied nephrostomy bags, flushed nephrostomy tubes, changed dressings. And once, I made it through an entire night administering morphine through Hubby’s PICC line until a bed opened up in Hospice House the next morning. This, I’m pleased to report, without any bodily injury to the patient.
12. Get plugged into community.
The mother of a child with cancer writes that spending time with like-minded people was helpful to her. She said that she and her family made an attempt to go to activities where there would be other cancer patients. “Knowing you are not alone can bring strength.”
A survivor says how much she appreciates the friendships that grew out a cancer walking group. “The exercise has almost become secondary to the camaraderie — and the coffee!” Her husband agrees wholeheartedly: “I think we all are encouragement to each other!”
13. Be more than just a cheerleader.
I (Marlys) think the best thing I did was come alongside Hubby. Not just sitting on the sidelines and cheering him on, but in the game with him, learning the plays, showing up at all the practices, helping him up when he got blind-sided, allowing him to help me up when I was tackled.
Photo credit: Pixabay
These next two points go together, perhaps under the heading of “It’s Time to Turn in the Caregiver Super Hero Cape”:
14. Accept help; or better yet, ask for help.
I wasn’t surprised that none of my caregiving friends commented on the importance of accepting help. And only two of the respondents had anything to say about taking care of themselves. Because that’s what we caregivers tend to do — not ask for help; not take care of ourselves.
The load of the caregiver can be significant as they take on more of the day-to-day responsibilities so their loved one can heal. I have a friend whose husband headed up a successful home business. When he was diagnosed with cancer, my friend became the cancer caregiver “while juggling four kids and taking over our business.”
People want to help in meaningful ways. We caregivers need to take off our Super Hero capes and allow them to do so.
15. Take care of the caregiver.
The mom of a teenager takes time for “sipping tea or coffee … or getting out of the house even if it’s just to the end of the driveway.” (They live in the country so they have a long and lovely driveway.)
“I scheduled time to get refreshed with my walks and coffee with friends,” wrote one caregiver wife. She said this helped her to be strong for her husband so he wouldn’t worry about her. Because “that’s what men do!”
Here’s a list of 34 effective self-care tips from a previous blog, if that would be helpful.
There’s this reminder from Eleanor Brownn (two n’s; not a typo):
Self-care is not selfish. You cannot serve from an empty vessel.
And there you have it. Wisdom from my cancer caregiving friends who were and are on the frontline alongside their wife, husband, child, parent, taking on extra duties to keep life as normal as possible for the people they love.
What are some of your tried-and-true caregiving tips?
If you found this post informational or know someone who could use some encouragement in their caregiving, please share, tweet or pin!
Terri
I would have to add that when the patient begins to slow keep giving them jobs. The trash, the dogs something every day. One of the hardest things to do was for my Jim to quit. Those last few days he painted a bird house, it took him 2 days and he didn’t finish but that was okay. When a man works hard his whole life his personal value still matters, I realized this when he asked me if I can’t help you then why am I still here? I never stopped him again even if the trash was heavy for his weary self or he became winded on his way to his shop.
Marlys Johnson
Excellent input, Terri … thank you. It’s challenging for our hard-working guys to feel as if they’ve become useless … or a burden. I remember in Gary’s last weeks, as I was going through the ritual of changing dressings and flushing tubes and emptying bags, he asked, “Doesn’t this get monotonous?” He’d rather have done for me, than have me do for him.
Nasus
What a touching sharing of loving, caring people and precious patients! I had forgotten until now that my husband learned well how to do a tight ace-wrap around my lessened upper measurement, in order to hold a plastic lid in place, over the breast implant which was trying to escape by rupturing the mastectomy incision. It became quite comical, at times! A knight-in-shining-armor surgeon took care of the situation, which he had not caused. So thankful for both of these men! Love to you, dear Marlys! Keep up the priceless encouragement, very useable information, and great way with words!
Marlys Johnson
I remember the story of the trying-to-relocate-itself-under-the-armpit breast implant, Nasus. Ridiculously funny … if it weren’t so sad. 🙁
Peter Howe B.E.M.
So many reasons to be inspired and cheerful, in spite of what ever kind of cancer is talked about. We remember well Laura’s wispy, sparse hair which she hung onto UNTIL it was head shave time!!!!. The first time, I can picture her with the razor as she ploughed through her father’s thick dark brown head of hair…. the smiles, the laughter and she was ready to have hers shaved now…. she was only 7 the first time. Each time the treatment caused her to lose her hair we’d have another head shave and music gathering as a fund raiser, with as many musicians coming together as we could get. Our ‘Barber’ would always be game to help and it was a good way of spreading a positive story to be shared with his customers. Thanks to everyone for sharing, this was a good read once again.
God Bless, Barbara & Peter
Marlys Johnson
What a great idea, Peter, to make the head-shaving a music gathering fund-raiser! I love the creativity and positivity of so many people I’ve *met* who have faced/are facing cancer.
Peter Howe B.E.M.
Thanks for more encouragement. We lost count of how many times Laura lost her hair. Another inspirational event each year, is the commemoration and celebration Christmas Services held each year at a St. Michael’s church, Newcastle-upon-Tyne, organised by and for Toma fund. The service is for anyone, mainly the children and young people who have gone through their cancer/leukaemia treatment and have come to know other sufferer friends for life. Of course not all ‘make it through’ and this service is for each and everyone to share their memories, love, joy with other friends, families as a celebration and worship. I’m sure you can imagine, it is always very moving…. some will just get up and give testimony, others will sing a song for their friend and there is something about a sufferer/survivors ability to ‘tell it how it is’ and to be able to engender ‘happiness and joy’ as well as regret and sorrow at the loss of their friend, they find so much positive strength. Hope this helps too. Our love, B & P
Marlys Johnson
What a beautiful and thoughtful event. Thanks for sharing, Peter.
Peter Howe B.E.M.
May I share what happened just yesterday. My Barbara and I went to the coast, a much needed visit. At a picturesque site a young lady asked me to take a photograph of her mother & father and child as she was over here from Canada visiting her parents. I took 4 photo’s for them and I suddenly realised that this was a ‘being there’ moment. What I mean by this is, the father who was about my age (75) told me that he was in treatment for cancer and he was in remission and that he had always been eager to help cancer/leukaemia causes with fund raisers in his life (I won’t go into detail), however I learned that they had lost their son to leukaemia when the son was 14, some 30yrs ago. There was much sharing and may I say understanding, especially when I told him that I’d been given 25% chance of survival in ’86. He shook my hand, firm it was too and he said somewhat emotionally, ‘Somehow I knew I was going to meet someone who would help by saying the right things”. Of course my Barbara was talking with his wife and she was talking about the loss of their son (as mentioned above) and Barbara shared her journey with breast cancer. My Barbara asked, “How did you deal with your grieving?” The lady said, “I remembered all the names of the children who were in treatment at the time our son was and I would sit down alone until the early hours on many an occasion and write pieces of poetry for each of our son’s friends. It allowed me to write my thoughts, feelings, concerns, worries and give them a purpose in thinking about our son’s friends who were there with him in treatment”. This lady hugged my Barbara whilst the daughter (from Canada) who is the sister of their deceased son looked on and she too understood the ‘comfort of the moment’.
Yesterday was a good day, for many more reasons (one being, at the week end my Barbara had suffered 7 very miniscule signs of a stroke and spent 2 nights in hospital to be monitored etc). The good news is that Barbara is well & will cope, not least because I won’t be far away and ‘we are one’. Our love, God Bless, Barbara, Peter & family.
Marlys Johnson
What a great story, Peter … thanks for sharing. No coincidences, right?! I love the lady’s reply about how she deals with grief; what a lovely idea.
Peter Howe B.E.M.
We certainly thought you aught to know, as you spread the word and share. Our love, B & P
Peter Howe B.E.M.
You are right ‘NO Coincidences’…. I believe those moments are ‘meant to be’ and no excuses for not doing something for someone for that reason. I just wish I had some of the lady’s poetry so that I might be permitted to find a melody and make some into ‘songs of praise/worship’ perhaps. Thank you Marly’s for letting me be involved.
Our love, B & P