Battling Cancer: 5 Essential Guidelines for Caregivers

Cancer patient visitNobody should fight cancer alone. Everyone deserves a loving caregiver. In the midst of your life’s biggest battle, you need an advocate, a rock, and a safe harbor. Why are people reticent? Simple, this transformational commitment comes with no rules. My late brother Michael Stanley was lucky. He had his wife Amy. The world has always been filled with badass women. I will go to my grave with the knowledge that my sister-in-law Amy belongs on any maternal Mt. Rushmore of badass-ness.

Michael had squamous cell carcinoma of the tongue. Star chef Grant Achatz survived it. Film critic Roger Ebert had it and it took his life. Buffalo Bills QB Jim Kelly is battling oral cancer right now.

I sat at Michael’s bedside while Amy watched the nurses clean Michael’s tracheostomy. I watched her turn ghostly white when she was told that when Michael went home, she’d be the one to clean the gunk out of her husband’s airway. I watched as she gulped, set her jaw, grabbed a swab, and cleaned chunks of mucus out of her husband’s airway.

I stood in the hall and listened as the care team removed a globbed-over tracheostomy insert and stitched a new one into place in Michael’s throat. I listened as she held Michael’s hand, helping him to fight down the panic and stay calm while the team worked briskly through this procedure. I watched as she, quite literally, stood and cheered when Michael re-learned how to sit up, how to transfer from bed to chair, and as Michael took his first steps in his return to the living.

After a month in the hospital, Michael returned home. I watched as Amy managed the house and kept the kids going to school and sports and the activities that make for a normal life. I was amazed as she continued her full workload as a corporate IT pro from the home PC and phone. She kept Michael’s feeding tube and airway neat and clean. She kept herself neat and clean.  Amy stood proudly by Michael’s side while he worked at his new job; healing and good health. That’s four full-time jobs, if you’re counting. Cancer caregivers, your love and strength is astonishing and breathtaking.

Herewith, my 5 rules for cancer caregivers…

1) There will be gross and scary stuff. Accept it.

A)  As a caregiver, you have made the choice to put the well-being of your cancer warrior first. Caregiving is not just hand-holding. It is hard, gut-wrenching work. Cancer, and its treatments, wreak havoc upon the human body. Plenty of ‘stuff’ that normally belongs on the inside of the human body will be on the outside. Mucus. Blood. Clumps of unidentifiable tissue. Tubes and drains. Pumps. Feces and urine. Steel yourself. Your cancer warrior needs every bit of your attention. You’ll have time to sort out your feelings later. Right now, you must focus on the task at hand. Complete the mission.

B)  You’ll be scared. A lot. You will be in doctors’ offices and clinics and hospitals. You’ll see too many very sick people. The sights can be terrifying. The language is nearly foreign. You need to learn to ask a lot of questions. Guaranteed, the person in your charge is scared and confused as well. If you don’t understand something, ask. If you don’t understand the answer, ask again. And again, if need be. You and your loved one need and deserve to know exactly what the care team has in mind. Knowledge is the antidote to fear.

C)  You are the link between the care team and your loved one’s non-verbal cues. Speaking for another is scary. We are socialized to not put words in another’s mouth, yet here I am telling you that you it might be necessary.  Chemo, radiation, and cancer combine to create a maelstrom. There is no way to schedule appointments which coincide with the cancer warrior’s good days and strong moments. You are the key link between what your loved one feels and thinks, but may not be able to say at the time, to the care team. Just like the biblical Moses had Aaron to speak for him, you will be called upon to speak for your charge. You know your loved one’s cancer fight better than anyone.

2)  You will receive unsolicited and unwanted advice. Deflect it.

Humans do dumb stuff. This will happen. You’ll hear about a diet, or a treatment, or ‘better’ surgery, or “the best” clinic, or about “this friend of mine.” There are three flavors of help.

A)  The well-intended.  These people want to offer help and solace. They don’t know how to ‘be’ with a cancer warrior. Silence makes them nervous. Ergo, they throw out some conversational crap they read on the Internet or heard on an infomercial. They’re scared, too. Treat them gently, and firmly:

“Thank-you for sharing that. We have our medical care team to handle these issues.” -said with a friendly smile.

B)  The ‘I’ll see your lesion and raise you a metastasis’ poker player. “My cousin had cancer and she did XYZ. Are you doing XYZ? She made it, you know. She’s a three year cancer survivor.” With these people, you need to be more firm:

“We’re glad your cousin is doing well. We have our medical care team to handle these issues.” – said with a pleasant nod of acknowledgment.

C)  The pushy and self-righteous. These people are offensive, and the type of offense varies widely. Suffice to say, if you’re offended, they’re in this camp. You need a nice way to say STFU:

“We have our medical care team to handle that. We have no interest in hearing about this from you again. Thank-you.”- no smile, a ‘teacher-look’ over the top of one’s glasses is helpful.

3)  Take care of yourself.

Short of having cancer yourself, life as a caregiver is the Sturm und Drang of human existence. If you cannot or will not care for yourself, soon you will not be able to care for your charge.

A)  Get some fresh air and exercise. Nothing, absolutely nothing is as good for you as getting out. Ride your bike or go for a run, get in the kayak, do a little fishing, shoot some hoops at the park, go for a walk in the park or woods- whatever moves you, get moving! You need to empty your tank of cancer angst and refill yourself with some nature.  Nothing will take care of your emotional and physical needs nearly so much. If you can’t get out, then hit the treadmill, or the Zumba class, or the weight room. Get going. I mean it.

B)  Allow yourself the courtesy of emotions. This caregiver stuff is just damn hard. It’s okay to cry. Being sad is fine. Let yourself be happy. Look into a support group via the cancer center. Find an online support group. My brother put together his own support group on Facebook. Get out with friends for a night. Play some cards, yak it up.  Go to the movies, head to the sports bar with your buddies for a beer and the game. One friend of mine swore by Drag-Queen Bingo.

As a caregiver, you deserve a break. Which leads us to…

4)  Ask for help.

What you do as a caregiver is simply exhausting. You cannot do this forever. You cannot do this alone. You are surrounded by people who want to help, but have no idea, none, of what you need done. The old military adage is, “When placed in charge, take command.” You are in charge. It’s okay to say, “I need you to go to the grocery store.” It’s fine to say, “Would you please stay with Bill for an hour this afternoon while he naps so I can go for a swim?” When my brother was ill, my wife and the other two sisters-in-law took charge of regular house cleaning. These three women would storm the house, and it would be spick and span by the time Michael and Amy were home from their appointment.

5)  Listen to your heart. Listen with all your heart.

No one set of caregiver guidelines is correct. You know your own circumstances better than anyone. When in doubt, listen to yourself. Give yourself permission to trust in your judgment. You are smart. You are capable. You are worthy of this great thing.

Most importantly, when you are with your loved one, listen with all your heart. Your cancer warrior needs you. Needs you weak. Needs you strong. Needs your wisdom. Needs your touch. Regardless of how this cancer journey turns out, you exit at the other end a person of greater wisdom, compassion, and heart.

 

When my brother Michael’s tumor recurred, for the third and final time, I drove him to the Henry Ford Hospital Throat and Neck Cancer Clinic in Detroit for a biopsy. His surgeon, Dr. Ghanem, a stand-up guy to the end, made it clear that until the lab reports were read, nothing was certain, but that he was not hopeful. Michael and I held hands for the car ride home.

I was standing there, in their kitchen, as Michael and Amy leaned forward, foreheads touching, holding hands, as I told Amy exactly what Dr. Ghanem had said. I watched my brother’s eyes widen as Amy took in the news. I watched Amy gasp, and catch herself. I saw tears begin to roll down Michael’s cheeks as he mouthed “I’m sorry, Amy. I love you.” I saw Amy begin to cry as they stared into each other’s eyes. I had to walk down the hall into their sons’ bedroom, where I sat on the edge of a bed, crying myself.

My brother Michael passed away two weeks later.

A few days after Michael’s death, I walked in on my wife Cath and Amy, crying in each other’s arms. I heard Amy say “I just wish I could have done more for him.”  No one, Ms. Amy, could possibly have done more for another human being than you did for your husband, the boys’ father, our brother, our son, our uncle, our friend Michael Alan Stanley. Thank-you.

For the rest of you who will do this great thing for someone you love, this greatest of Mitzvot, thank-you as well.

  • My book Melanoma: It Started with a Freckle will be out in spring, 2016 on the McGann imprint. You can hear me read excerpts and blurbs, read samples yourself, and keep up via Facebook; Melanoma Book. On Twitter, catch the news @MelanomaBook. Thanks.

Related Articles:

7 Rules You Should Follow When Visiting Someone With Cancer

10 Things I Learned From Cancer

Parenting Through Cancer

 

Comments

The Beginning
About David Stanley

Teacher & science guy, writer, musician, coach, skier and bike racer, I am interested… in everything; your story, food & spirits and music and everything in the natural world, spirit & sport. My son is 22 and still needs his Dad. I am 56 and so do I.
I blog on life and death, cancer and sports, kids and education at http://dstan58.blogspot.com/

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Comments

  1. Larry says:

    This piece is both incredibly moving and informative.
    If I was in the position of caretaker, I would reread this and take notes. I could only hope to be near as amazing as your sister-in-law.

    • Larry, I’m not bad at putting my thoughts down on paper, yet when I try to express how I feel about my sister-in-law, I feel so inadequate. She was angelic. And steely. I could go on. thanks for reading.

  2. Sarah says:

    I was 32 years old when my husband and I found out he had stage III melanoma. It changed my whole world. I was unquestioningly and gladly his most steadfast, loving caregiver. It was terrifying, empowering and strange. First there was the surgery, then the months of chemo, and then the year that followed, in which he fell into a severe depression. In all of this, there was no one way to be (as you say) except to be there for him. And I was, always.

    Advice like yours would have been so helpful when we were in the thick of it, but I was too afraid to reach out to anyone about what I was experiencing. “You have to be strong for him” is what everyone kept telling me. So I believed that it was selfish and even cruel for me to think about how hard the “cancer experience” was not just for him, but for me as well.

    And so I say thank you, thank you, thank you for writing and sharing this with the world. You have brought tears to my eyes and reminded me that my instincts were good ones, and I was never, ever alone in this.

    Just yesterday my husband and I celebrated his third cancer-free year, and we have to believe that there will be many more, even if there won’t be.

    • Sarah, thank-you for leaving your thoughts. I love this: “reminded me that my instincts were good ones, and I was never, ever alone in this.”
      But I love this more:”Just yesterday my husband and I celebrated his third cancer-free year, and we have to believe that there will be many more, even if there won’t be.”
      Peace.

  3. denise says:

    Thank you for this story. After a long 9 year battle with kidney cancer, my husband died in November of 2012. We were together for 35 years. I was his sole caregiver. I had to deal with the tubes, the gunk, the stamina required as a caregiver/warrior to battle all elements, especially when he could not. One year after his death, I still second guess the same thought of Amy of if I did everything single thing I could to help. I have no regrets, just self-questioning. I, too, juggled, career, kids and the caretaking of my beloved. I don’t know if I came out stronger, but most definately wiser – and compasionate to those caretakers and badass ‘people’ that are the warriors and often unsung.

    • Denise, Thank-you. That self-doubt, I hear it from nearly everyone. We all want to know that we did everything possible. I’m certain you did.

  4. Larry Kaplan says:

    Great piece. I lost my wife to tongue cancer, so this hit home. Everyone asks what can I do? That blank is the worst. For anyone wanting to help , they should offer a suggestion. I’m going to the store can I get you [frruit].

    • Larry, Sometimes it is just the gesture; that you’re not alone in this, that someone else also cares, is enough, isn’t it? And plenty of times, you just flat-out need the help. Thank-you.

  5. Susan Knight says:

    This is one of the most honest pieces I have ever come across.My daughter was 3 and 1/2 months old when she was diagnosed with a very rare and very aggressive type of cancerous tumor.What I knew about cancer then was nada,nil.I turned the corner one day when we were having a chemo conference.I had always been one to accept what ever a doctor told me ,and never questioned.I stood up in that conference and started to ask questions and didn’t stop. I became known as the nightmare mother. If something bad happened to Karie in the way of negligence,then I had to make sure that it didn’t happen to another child.I spent more time sitting outside the office of the President than I did at home.I became the surrogate parent for the parents that had to work. I sat on the board to change hospital policy regarding grand rounds,end of life situations,taught parents how to spike and hang a bag,keeping sterile dressings sterile.I worked out my anger,and my pain,through helping others.I bought two pairs of pajamas that I wore throughout our very long hospital stays.I didn’t throw them away until four years after my daughter was considered a cure.They were a tribute and a memorial to what we had been through. How did I get past the gag,the vomit,the endless nights of rocking the babies,I tried very hard to keep a sense of humor. Later when I became a hospice volunteer,and I would be with a dying patient,we would watch funny movies together,sometime laying right next to them,or sitting their holding their hands,touch was very important to my clients.I would fight really hard with the doctors to get them the pain meds they needed to keep them comfortable,threatening them if I had to.I always asked them wheat they felt like doing. Reading to them,watching a movie,even taking them for a drive,sometimes just letting them talk and talk and talk.If there is anything that I have learned from this part of my life,it is patience…it will happen when it happens and not a moment sooner.My daughter is now in her first year of college,and a 4 time cancer survivor,and more than anything a motivatiional speaker.
    Only 4 foot 5″ half bald,and two toes left on one foot,she encourages all kids Never Ever Give Up!
    God bless you and keep you for sharing your story,I am moved.

    • Susan, You are an a amazing woman. You raise an great point (I mentioned it in my previous post about “rules for visiting”) and that is humor. Humor can allay a lot of pain- emotional and physical. My brother loved Rocky and Bullwinkle. He also loved the ultra-snarky hosts on ESPN SportsCenter. There were times when we would laugh so hard at stuff that it hurt, in a totally better way. I’d love to hear from your daughter. She’s also amazing, I strongly suspect. thank-yoiu.

  6. Vicky says:

    I was a caretaker for my husband for two years before he passed. Two weeks later I became a full time caretaker for my 85 year old mother. She moved in with me when she fell and broke her wrist and hip. Both have healed but her basal cell carcinoma rages on. Although she can physically do most things, she doesn’t want to put forth the effort. She hasn’t given up on life, she just doesn’t want to do anything for herself and is resentful if I try to encourage her. Her cancer is hard and crusty all over her stomach and sides and is starting to bother her more and more. I think I have two separate problems.

    I think a caretaker support group either local or via the internet would be helpful but not sure how to go about hunting the right one down for me. Any suggestions?

    • Vicky, you certainly have two issues. One is to get medical advice about Mom’s current medical condition. For the other, I suggest: 1)Try the hospital. Our local hospitals all have a wide variety of support groups. 2) Try the local base for a cancer organization-American Cancer Society, Lung Association, etc. They often have support groups. 3) Organize one. My mom, and several of her friends-all of whom cared for aging parents-got together regularly to share ideas, provide support. They even brought in speakers. 4) On-line. Talk to the good people at Stand-Up to Cancer or Livestrong or a similar group. They have lots of information, and they also have groups available.. 5) Put together your own on-line group. My brother did. You might find that many of your virtual friends are, or have been, in similar situations. About 45% of us will get cancer. Good luck.

  7. What a touching, helpful article.

    Though I’ve only had one close friend with cancer (and helped her through her first chemo appointment), I see parallels here with the care of my elderly parents.

    Dad’s been gone two years this month and Mom is in the medical wing of her retirement community. All the points you make apply here too, like 1) There will be gross and scary stuff. Accept it. 2) You will receive unsolicited and unwanted advice. Deflect it. Etc.

    But one of the most powerful is 3) Take care of yourself. I often advise my marketing clients (as well as my friends – so this applies in business and in our personal lives) that as they say on the airlines: put the oxygen mask on yourself first BEFORE you attempt to help someone else. It does the other person no good if we are so sick or tired we can’t give the help they need with all of our attention and love.

    You’ve heard of the “sandwich generation?” Well, I’m part of what I call the “Club Sandwich” generation… looking out for my two grown kids (and son-in-law), my two grandkids, AND Mom. I often feel torn, not knowing which way to turn, which person really needs more help right at any one moment.

    But we do the best we can… and following your suggestions will help!

    Thanks for sharing this information.

    Charlie Seymour Jr

    • Thank-you Charlie, for sharing your thoughts. You are a veritable delicatessen of caregiving. Thank-you.

  8. Lori says:

    Thank you for this. I’m currently the caretaker of both my parents. My stepdad is 84 w/Alzheimer’s. My mom has been battling small cell lung cancer since aug of 2012. So many times I’ve wanted to scream and throw in the towel. Thinking selfishly that I don’t want to do this anymore. I snap out of it and I continue to carry on. My sister in law has started helping and my best friend brings Wednesday dinner for us. This article made me cry and made me realize that I’m doing the best I can and how much I truly love my parents. They wouldn’t give up on me and I’ll never give up on them.
    Thank you!!!

    • I love this “They wouldn’t give up on me and I’ll never give up on them.”
      Your attitude is incredible.
      thank-you.

  9. Nichole says:

    This is beautiful. My Mom is an “Amy” too and I am so blown away by her, and how good she takes care of my Dad. Thank you for writing this. – Nichole

    • There’s a line in a song by the Mighty Mighty Bosstones- “I’d like to think I’m a hero but I’ve never been tested.” Until we’re in that arena, we never know how strong we truly are. I’ll guess that you have that same “Amy-ness” in you, as well.

  10. Penny Preston says:

    I used humour plus music to get through chemotherapy. That old time rock and roll on full blast masked a lot of pain. Penny. Ovarian cancer survivor

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