Let's Get Real About Caregiving

February 17th Lunch & Learn with the LINK Notes

Caregivers are Secondary Survivors

Michelle Bishop, a psychologist and caregiving expert, likens the BMT journey to a long road trip with many roads and pit stops. There are often unexpected detours as well. On this long BMT road trip, we cannot see the final destination and we do not really know exactly how long it’s going to take so we will need to plan differently and be mindful along the way.  For example, there is the period of transplant and early recovery at the transplant center, the transition home and ongoing recovery. Keep in mind, with a bone marrow/stem cell transplant, there may be additional roads dealing with graft versus host disease. And it is important to remember that caregivers are on this journey along with their patients. Self-care is essential, and time is limited for these precious caregivers.

It is an honor to care for those we love.  It meets a need they have in a very vulnerable season in their life and we get to grow as individuals, get the personal fulfillment of caring for them, and we get to help them beat the disease that could have taken them from us.  However, we know caregiving is a 24/7 responsibility that stretches people in ways they may never have known possible.  It is a labor of love that can affect mind body and spirit.

Today, more than 1 in 5 Americans (21.3 percent) are caregivers, this equals 53.0 million adults in the United States, up from the estimated 43.5 million caregivers in 2015.5(AARP Research)

Informal or unpaid caregiving has been associated with:

• Elevated levels of depression and anxiety
• Higher use of psychoactive medications
• Worse self-reported physical health
• Compromised immune function.

Caregivers have an evolving range of responsibilities that they may perform on a daily or as needed.

These tasks may change throughout the person’s illness and recovery. For those of you getting ready to start this journey, some of these tasks are:

• Assisting with toileting, bathing, and dressing
• Giving medications
• Assisting with meals, grocery shopping, and other errands

Helping manage symptoms and side effects- TRACKING SYMPTOMS WITH A MOBILE APP You can also easily keep track of symptoms using the free Cancer.Net Mobile app. It is available for both Android and iOS (iPhone, iPad).

• Doing household chores
• Childcare and/or pet care
• Coordinating medical appointments
• Driving to and from appointments
• Talking with the health care team
• Advocating for the person with cancer
• Handling insurance and billing issues
• Filling prescriptions
• Being a confidant
• Provide company and encouragement.
• Keeping friends and family members informed- Some ways to share updates include: Create a free website to share updates online, such as CaringBridge, Lotsa Helping Hands, or MyLifeLine (see page 32).

They do all this while trying to stay sane themselves with all the other personal responsibilities they have, trying to navigate the transitional roles in the relationship, and having extraordinarily little time to do any self-care.

TIPS FOR CAREGIVING 

1. Make your village.  Remember that caregiving is a team effort involving a group of people.   What tasks from above could possibly be delegated?
2. Be proactive, organized, and plan as much as possible. Some level of predictability can help all cope better.  Ex. Drug schedules, doctors’ rules, appts.  Etc.
3. Be a problem solver— identify problems, find out what is needed, and follow through.   Prioritize what can be put on hold and what can be simplified right now.  Kate- did not even think about bills for the hardest part.  A friend who believes in paper plate therapy.
4. Recognize your personal strengths and weaknesses. 
5. Communicate openly and honestly.  Share your concerns. Marcella- skype in night.  I statements.
6. Remember to take care of yourself and you cannot do EVERYTHING. Worst part over, can some stay with your loved one and you go get a cup of coffee with a confidant?

      10.Always have hope.

Tips from ASCO(American Society of Clinical Oncology)

My Stress Management Plan worksheet at the end of the guide from ASCO I am sending you.  Review these coping strategies-

 Set boundaries. Setting limits helps you and the person you care for. This may mean asking for help from others so you can take a break. This is called respite care.  

It is also important to say “no” when someone asks you to do something you do not want to do or do not have the energy for. 

Ask for help. Make a list of people who the person with cancer trusts and can help with specific caregiving tasks. Family, friends, members of religious groups, and people in community groups are often willing to assist. Many people want to help but are not sure you want or need it. 

You can also hire professional caregivers or people to help with chores, errands, or childcare, if finances allow, to free up some of your time. 

Find support. 

Feeling angry, guilty, alone, afraid, and/or sad is common for caregivers. Talking with other people who are caring for a family member or friend with cancer can help you cope. Ask an oncology social worker to connect you with local resources, such as support groups. Use the list of resources on page 32 to find a national or online group. Make time for yourself and other relationships. Doing something you enjoy gives you a much-needed break. Spend time with other people who are important to you, even if in shorter periods than usual. Maintaining supportive relationships is important for your continued health and well-being. Keep yourself healthy. Taking care of your body is important to make sure you can provide the best possible care. This means making time to exercise, eat healthy foods, and stay hydrated. Get enough sleep. Caregivers often have trouble sleeping. You may be getting up during the night to help your loved one. You may be staying up late to get things done. Your thoughts and emotions may keep you awake. Feeling rested will help you stay at your best, so try to go to bed and get up at the same time every day. Also, ask friends and family to avoid calling when you are usually asleep unless it is an emergency. Make a list of priorities for each day that sets out realistic goals, listening to soothing or uplifting music, practicing relaxation techniques, such as meditation or yoga, going outside regularly for fresh air and sunlight, keeping a journal to write down your personal thoughts and experiences.

Having to make so many decisions and being pulled in so many directions can be hard. Some of the most common things couples feel stressed about when one becomes a caregiver are how to support each other, changing roles and routines, less time together, financial issues and managing daily life.  Every couple handles stress in a different way. Try to be open and honest with your spouse or partner about the way you are feeling. You may also want to:  share how you both are coping, look at things that are causing you both stresses, discuss ways you can support each other, talk about choices, and changes you can make, make time to focus on things besides cancer, talk about your hopes and plans for the future, and talk with a counselor or find a support group.

Many couples share that their relationship deepened after a transplant, however, it is important to have the tools available to work through the challenges that can be faced by the caregiver, patient, and the relationship between the two.  Remember

“Kindness can transform someone’s dark moment with a blaze of light. You’ll never know how much your caring matters.”

– Amy Leigh Mercree

Be kind to each other, yourself, and your relationship.  As the light you share in these times is what really matters.

From Caregiver, Jim Bulger

Jim and Nancy Bulger live in Woodstock, Georgia, outside of Atlanta.  In 1996, Nancy was diagnosed with diffuse large B cell lymphoma, underwent 6 months of chemotherapy, and went into full remission.  Unexpectedly, 21 years later, in 2017, Nancy’s cancer returned, she then went through another 18 months of chemo, and, since the cancer persisted, she was referred to the Blood and Marrow Transplant Group of Georgia where it was determined that a bone marrow transplant would be necessary.  In January of 2019, Nancy received an allogeneic transplant with cells from an anonymous outside donor. Thanks to the skill of her doctors and Nancy’s strength and determination, Nancy is now two years post-transplant, all her tests now show no evidence of cancer, and she is doing great. The journey that she and Jim, as her caregiver, have experienced over the last few years has re-shaped their relationship, their priorities, and the way they look at, and appreciate, the little things in life.

Jim’s Tips

• Transitioned from Protector to provider.  I was part of her team.

• Never make them feel alone, comfort/support on each step of the journey.

• Advocate with doctors, nurses, and ask questions.

• Distract them.  Try to help them feel like less of a patient and more of themselves.  Do not make it the topic of every discussion.

• Need to hit pause on everything beyond our focus.

• Expect things to change constantly.

• Pray for good days, prepare for bad days. (they had a “go” bag in the car.

• Take one day at a time.

• See this as a 24/7 experience.

• Be patient and positive.

• Allow your loved one the freedoms the doctors say are ok.

• Help the patient cope with losses and side effects, this includes emotional and cognitive ones.

• Must put pride aside and allow people to help.

• Celebrate milestones.

• Find something to laugh about each day.

• Develop a mantra.  Theirs was “do what you have to do now so you can do what you want to do later.”

• You never know how strong you are until strong is your only option.

• Make goals for yourself, little and big to guide /inspire you.  Being “well” takes time but goals like “being able to hold my grandchild” give short term gains and help keep you positive.