The Breast Cancer Caregiver’s Survival Guide:
Practical Tips for Supporting Your Wife through Breast Cancer
Rick and Becky Kraemer
Published by Rick & Becky Kraemer at Smashwords
Copyright 2010 Rick & Becky Kraemer
Table of Contents
Allow people to help you
Get a care coordinator
Schedule and track medications
Pay for maintenance services
Stock up on convenience foods
Keep cash on hand to pay for purchases
Take responsibility for the household
Be flexible
Clear your social calendar
Create a short list of emotional supporters
Don’t let your wife attend appointments alone
Screen calls and visits on recovery days
Be frank with your children
Don’t pass around your children’s care
Maintain your children’s social schedules
Use moderation in everything
Helpful purchases
Don’t leave your wife unattended in the hospital
Helpful purchases for surgery
Chapter 3: Tips for Chemotherapy
Plan Ahead for her hair loss
Physical changes
Helpful purchases for chemotherapy
Helpful purchases for radiation treatments
Be a cheerleader
Make the tough decisions together
Build a support team for yourself
Get supernatural help
Introduction
You are reading this booklet because one of the worst possible things has happened to you. You’ve gotten the bad news from your wife’s doctor, and the two of you are either facing breast cancer treatments, or are in the middle of them now. We’re here to help.
In 2000, Becky was diagnosed with breast cancer, and completed extensive treatments (surgery, chemotherapy, radiation, hormone therapy). She is currently in remission and leading a normal, healthy, and athletic lifestyle. This booklet is in response to the questions we’ve received from men looking for practical advice on supporting their wives through this difficult time.
Chapter 1: General Tips
Allow people to help you
Many people will offer to help you. Let them. It will be difficult to admit that you need help, and even tougher to turn their offers into practical help. But you can’t do it on your own. You’re going to need other people to assist you with your wife’s needs. Admit that you have a need, and then allow friends and family to contribute. You will be too busy with the emotion and practical aspects of your wife’s care to take care of all the errands and chores during her treatment. You will have many responsibilities that only you can perform. Let others help you with the rest.
Get a care coordinator
Family, friends, and acquaintances will all offer you help, but you won’t have the time and energy to figure out who is making a genuine offer, what they can do, what you really need, and how to coordinate everything. Plus, you won’t want the awkward task of following up with people when you’re ready for their help. Instead, find a good friend or family member who is organized and has strong administrative and people skills, and make them your Care Coordinator. Whenever someone offers help, give their name and contact information to your Care Coordinator. Inform your Care Coordinator how often you want meals provided by friends and neighbors, and let them arrange the schedule. Tell your Care Coordinator what you need, and they will find the right person to help you at the right time.
Your care coordinator should also be your press agent. Have them create a blog or Facebook page, and post frequent updates for you. Stay in daily contact with your care coordinator, and then ask everyone else to get their updates from the care coordinator. You and your wife will not have time or emotional resources to keep everyone up-to-date, so use your care coordinator to spread news to all but your most intimate friends and family.
Schedule and track medications
Your wife will have many medications to take after surgeries and during Chemotherapy. Since she may be disoriented or forgetful from the medications, you will need to create a medication schedule, and purchase a portable alarm clock to reminder her when it’s time to take medicine. Write down everything as she takes it, to make sure she isn’t over or under medicated.
Pay for maintenance services
There are many maintenance tasks that you and your wife will not be able to perform during her treatments. Unless someone else has offered to do these for you, pay a professional to clean your home, cut the grass, maintain the pool, clean the clothes, wash and clean the car, care for the children, and anything else that can be hired out. These are expensive services, so you may have to dip into your emergency savings. You are in a crisis; I give you permission to spend money you’ve been saving for a rainy day. Any task that you can pay for is one more opportunity to focus time and attention where it really needs to be. If long-distance friends and relatives don’t know how to help, have them send money to your care coordinator for these services.
Stock up on convenience foods
Pay extra for simple, easy, and convenient foods. Buy packaged, frozen, and microwave meals and eat them off of paper plates. Have dinners delivered or order take-out for your friends to deliver. You and your wife are not going to have the energy to cook banquets for your family, so keep meals simple and easy.
Keep cash on hand to pay for purchases
One of the easiest ways for other people to help you is having them run errands and shop for you. Keep a list of what you need from the store, and get your helpers in the habit of calling before they go to the grocery or department store. If they are already going to the store, it is easy for them to pick up extra milk or eggs, and drop them off at your home. Keep plenty of cash on hand, so you can easily reimburse helpers when they drop off your purchases. They may not buy your favorite brands, or be the best bargain shoppers, but they will free you up to do what is really important.
Take responsibility for the household
No matter how you’ve split the household chores in the past, now is the time for you to be solely and completely responsible for keeping up the house. Don’t leave anything lying around for your wife to pick up, or clean up, or complete. Take responsibility for all of the dirty dishes, laundry, meals, cleanup, and children’s school paperwork. If your wife is usually cleaning up after everyone, then you need to change roles. Inspect the house each morning before you leave for work, to make sure you haven’t left any household task for her to complete. Each evening, make sure you’ve picked up and cleaned up after everyone, loaded every last fork and glass into the dishwasher, and dealt with all of the laundry. Take care of all the little tasks that your wife might attempt when she should be focusing on recovery.
Be flexible
This is a time to be extremely flexible. You may have to accommodate all kinds of surprises, so clear your schedule, get plenty of rest, and give yourself lots of extra margins to allow surprises. Keep a list of people who can watch your kids and pets on short notice. You may have to see additional medical professionals, or even spend a couple of nights in the hospital on short notice. Be mentally prepared to change your schedule, run special errands, or go without sleep, so you are available for all of your wife’s unexpected needs.
Clear your social calendar
Cancel everything. Go through your social calendar, and cancel every meeting and event that your wife is scheduled to attend for the next 6 months. She will be too tired to attend any activity in the evening, and the emotional toll of explaining her situation would become overwhelming. She should avoid public places during chemotherapy, since her immune system will be weakened, and a cold could be fatal. For must-attend meetings like parent-teacher conferences, go for her, or have one of your helpers go, and give her a report. Encourage her to meet friends spontaneously when she is having a good day, but don’t assume she’ll be able to attend any scheduled event during her treatments.
Create a short list of emotional supporters
Review all of your family and friends, and create a short list of people who are good at giving emotional support. These are the kind of people who are emotionally strong, and will be comfortable just sitting quietly with your wife. The people on this list will love your wife unconditionally, be good listeners, and won’t make judgments or offer unsolicited advice. They won’t be needy or draining to be around, and must be a calming, stable influence on your wife. Make sure that either you or one of these people is with your wife for doctor’s visits, treatments, hospital stays, or any other emotional event.
Don’t let your wife attend appointments alone
Never, ever let your wife attend a doctor’s appointment or chemotherapy session alone. Every one of them will be extremely emotional, and some of them may carry surprise bad news. She should never bear these burdens alone. She should not drive herself after chemotherapy, and may not be able to drive after some doctor’s appointments. These are the times that she needs you most. You may miss some work, but she needs the support. If you are not able to attend with her, arrange for a safe, trusted family member or friend to drive her to the doctor and sit with her during the appointment.
Screen calls and visits on recovery days
When your wife is recovering from surgery or a recent chemotherapy session, take the day off, and answer the phone and door for her. Get a short list of the people she will always want to talk with, and only let them talk to her if she is willing. Let everyone else know that she is resting, and talk to them yourself. Encourage callers to go through your care coordinator for information and offers of help. Don’t let her spend time with needy people or people who use her up emotionally. Chemotherapy is emotionally and physically exhausting – give your wife space to sleep and recover.
Be frank with your children
Set aside time to explain your wife’s situation clearly and completely to your children. They will need time to absorb everything, and will also need time later on to ask questions. Explain everything that you can in language appropriate to their age. Small children can know that mommy is very sick. Tell grade school children medical details, and let teenagers read the same materials you are. Adult children should know all of the exact diagnosis and treatment details. Tell all ages that some women die from this disease, but that you are fighting against it, and share your treatment plan. Discuss the changes they will be expected to make during your wife’s treatment.
Be perfectly clear about everything, because adults will expect your children to be well informed, and will accidentally tell them the things that you are trying to hide from them. Give your children plenty of opportunities to talk about how they feel, because they will not have the emotional maturity to work through their emotions alone. If your wife has daughters, be open with them about their increased risk of getting cancer, and discuss preventive medical plans with adult daughters.
Don’t pass around your children’s care
You may receive many offers to watch your children; be careful not to leave them with a different family each day. They will already be emotionally strained, so you don’t want to exhaust them by exposing them to too many new environments. If possible, arrange for regularly scheduled professional child care, so your kids can settle into a routine, and have a stable, familiar place to stay. Hire a nanny if you can, or rely on a short list of regular households to watch your kids. When possible, have babysitters watch the kids in your house, and pass on sitters that would have to bring their kids along.
Maintain your children’s social schedules
Try to stick with your children’s normal schedules. Your kids will need more rest and down time, but keep them in their regular athletics, lessons, and other extracurricular activities, allowing other parents to drive them back and forth for you. There will be many changes at home, so your children will need stability in other parts of their lives, and opportunities to get a break from home. They will also need friends and trustworthy adults to help them through this experience, so make sure they are spending time with friends and family.
Use moderation in everything
You will receive all kinds of useless health advice and recommendations from many people who are not medical professionals. Ignore them, and stick with your doctor’s advice. Have your wife eat healthy, and take her vitamins, but don’t radically change her diet, and don’t let her start taking high dosages of vitamins, supplements or natural medications. Don’t let her try to lose or gain weight, or start an exercise program, unless you have carefully reviewed it with your doctor. The treatments your doctor offers will have decades of research and clinical proof behind them. Put your trust in surgery, chemotherapy, radiation, and medications. Stay away from questionable “alternate treatments,” and use moderation in everything else.
Helpful purchases
During her treatments, your wife will not be able to maintain her normal exercise routine, but stretching her muscles will help recovery. Surgery and radiation will shorten her muscles in unusual places, restricting her breathing and movement. Buy her a couple of yoga DVDs, which will guide her in stretching her chest and abdominal muscles. Look for DVDs that emphasize relaxation, and stay away from “power” or “sport” yoga.
Chapter 2: Tips for Surgery
Don’t leave your wife unattended in the hospital
The anesthetics and pain killers used for surgery will leave her disoriented and forgetful. Make sure someone is with her at all times while she is in the hospital, so she will be comforted by someone familiar while she is awake. Her medications will give her short term amnesia, so keep a log to write down doctor’s comments and instructions, and don’t expect her to remember anything from the hospital stay.
Helpful purchases for surgery
After surgeries, your wife will come home with incisions, drains, and other messy staining medical conditions. Before going to the hospital, put away your nice designer sheets, and purchase several sets of inexpensive white sheets for her bed. When they get soiled or stained, you can clean them with bleach. After she has recovered, throw away the stained sheets, and use your regular sheets again, without ruining them.
Chapter 3: Tips for Chemotherapy
Plan Ahead for her hair loss
Your wife will lose all of her hair (including eyebrows and lashes) between the 2nd and 3rd chemotherapy session, but you will want to plan for this experience well in advance. Wigs are expensive, costing hundreds of dollars. Most insurance companies will pay for part of the wig, but will require a prescription written for a “hair prosthesis” before they will reimburse you, so make sure to get a prescription from your healthcare provider before starting chemotherapy. Have your wife and a friend pick out her wig before starting chemotherapy, so they can use her current hair as a model to color, cut, and style the wig.
Her skin will be extremely sensitive to sunlight, so she will need plenty of sun screen, and at least one large hat to cover her face and the back of her neck. Between her chemotherapy and baldness, she will get cold easily, and will need a warm hat to wear around the house, even in the summer. Wigs are hot and scratchy; she won’t be able to wear her wig all of the time, so she’ll need other hats for going out in public. Her skin will be sensitive, so she’ll need scarves to wear under her hats. You may want to ask a close friend to throw a “hat party” for her, where everyone brings a hat or a scarf as a gift.
When her hair starts falling out, it will come in large, messy clumps, so most women have their hair cut short or shave their heads to avoid “shedding” clumps of hair all over the house. This sudden change can be disturbing to children, so you will want to warn them in advance about the haircut, then bring them along to the haircut appointment. Many families plan a small party for this haircut, allowing older children to give mom a Mohawk or other silly cut before clipping it all short. If your wife’s hair cutter works in a large, shared facility, you may want to make arrangements for a more private appointment.
Physical changes
During her treatments, your wife will undergo many physical changes and will struggle with being unattractive. She will be disfigured by surgery, lose every hair on her body, lose her skin’s normal look and feeling, and drop muscle tone. She will not be able to get her nails done, and will have disruptions in many normal bodily functions. After all of these losses, she will struggle to feel beautiful. Encourage her to paint her nails, put on makeup, use perfume, and do anything else she can to feel pretty. This is an important time to be romantic. Get her flowers and small gifts, write her notes, plan dates, and do anything else you can to make her feel special, so she knows you love her, despite the changes in her physical appearance.
Helpful purchases for chemotherapy
If you don’t have a comfortable chair or couch in your main living area, consider purchasing a recliner. Your wife will be too exhausted to sit up on chemotherapy days, and will need to sleep most of the time, but will still want to be around the family. A recliner allows her to sit up, recline, or sleep, without getting up and walking around.
She will also be too tired to stand in the shower, but not able to take baths until her incisions heal. Buy a shower seat from a medical supply store, and trade the shower head for a removable, handheld showerhead. This will allow her to wash while sitting down.
Chapter 4: Tips for Radiation
Helpful purchases for radiation treatments
During radiation, your wife’s skin will become burned, making car seatbelts very painful. Go to your auto parts store, and buy a seat belt shoulder pad for her. These are sheepskin tubes that wrap around the shoulder part of the seatbelt, and make the belt more comfortable. They attach with Velcro, so you can easily move one of them from seat to seat, or between cars.
Chapter 5: Other Suggestions
Be a cheerleader
There is strong medical evidence to support the value of hope and optimism in cancer treatment. Keep a hopeful attitude, and constantly encourage your wife. Her treatments will be painful, discouraging, and depressing, so expect these feelings, talk frankly about them, and acknowledge them. It is normal and healthy for her to express these feelings, but still have hope for the future. During these times, remind her that you expect her to survive. Make plans together that are scheduled into the future. Remind her often what she is living for, and why you want her to survive. Plan a reward for her, like a special vacation or gift, as a prize for completing treatments. Give her many reasons and encouragements to complete the treatments, so she doesn’t fall into despair.
Make the tough decisions together
Because of the current malpractice environment, your medical professionals will not tell you what to do. They will offer you options, and discuss the advantages and disadvantages for each course of action, but you and your wife will have to decide what she can tolerate for treatments and risks. You will often have a very short time to make life changing decisions. Read everything you can, talk to cancer survivors about why they made their choices, and get a clear understanding of the tradeoffs from your doctors. When you face a difficult decision, make sure that you are well informed, and that you and your wife agree completely on your choice. No matter how you choose, you will receive criticism from some family and friends about your decision. So stay united with your wife as a team, and stand behind your decision. During her treatments, distance yourself from people who aren’t supporting your decision.
Build a support team for yourself
I’ve focused on the needs of your wife, but you will also need help with your own physical and emotional needs. Leave time in your schedule to meet with your closest guy friends, to discuss what is going on in your life. Allow friends and family to care for you. You need to accept everyone’s generosity, because the task ahead of you will be draining.
Get supernatural help
Is God punishing you or your wife? No. But he did allow something terrible to happen to you. There’s no simple explanation for why God is allowing this to happen to you. God makes his choices, and because he is God, he doesn’t always provide an explanation. Can you still be angry with God? You bet. He’s a big God, and he can take it if you need to yell at him. Here’s the important thing: God still loves you and wants to help.
Now is the time to lean on God for help
Start a personal relationship with God’s son, Jesus, by admitting that you’re distant from him, and need Jesus’ help reconnecting with God. Then start each day by asking God for miraculous healing and the strength to survive that day. Ask everyone you know to pray for you. Ask your church leaders to meet with your wife and pray out loud for her. Make a short list of people who will promise to pray for her each day, and give them frequent updates with specific requests for prayer. God hasn’t abandoned you; he wants to help, and is waiting for you to make the first move.
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About the Authors
Rick and Becky Kraemer have been married since 1989, and are the parents of three teenage children, one girl and two boys, who they’ve raised from scratch. Rick is an information technologies architect, and Becky is a substitute teacher in middle and high school. They live in northern California, where they enjoy water sports, many forms of exercise, animated conversations while walking by the lake, facilitating their kid’s social events, volunteering with community organizations, and picking up after Becky’s dog.
Discover other titles by Rick and Becky Kraemer
The following titles by Rick and Becky are available online for all popular electronic readers:
The Breast Cancer Caregiver’s Survival Guide: Practical Tips for Supporting Your Wife through Breast Cancer
The Lost Art of Parenting: Training Children for Success
Being a Real Man: A Masculine Manifesto
Becoming a Real Man: A Masculine Manifesto for Teenagers
What Does God Want Me to Do? Discerning God’s Guidance for Life’s Big Decisions