Caring for Caregivers
As the parent of a young adult with cancer, you face specific challenges relating to your role as a caregiver. Your child is old enough to contribute to the decisions made on their behalf, or they have been independent for a number of years. You child may also be a parent! Open communications will help you help your child, no matter their age.
In most cases young adults are capable enough to make their medical decisions, however, it is wise and helpful for them to include their parents and/or others in the process. Parents often have a great deal of experience in managing healthcare and can be an enormous help in navigating the maze of information and decisions that need to be dealt with. Open, honest, positive, realistic, and hopeful discussion is very important. No matter the young adult’s age, it is not unusual for a parent to tend to want to make the decisions for their child and to protect them.
Parent and child must talk openly. It is vital to your relationship to define your role as a caregiver and important to remember that “caregiver” can mean any number of things. Your child may want help in research, keeping records, taking notes, making medicine charts and food preparation to help alleviate stress. You could act as a sounding board to provide emotional support, or provide childcare for your grandchildren when your child has appointments or is recuperating from treatment. In addition, every person dealing with major illness, regardless of their age, needs an advocate, a buffer and a person to field questions from the many people who call expressing care and concern. Anyone close to the situation can serve in these important and useful ways. Young adults should be encouraged to express their needs and desires to those around them and let people know what they find helpful and what boundaries they want to set.
Your child may ask you to be the point person for keeping the community up to date on their diagnosis and treatment. There are several websites that allow folks to post about their illness so that friends and family can follow the journey easily and you can avoid the many calls and conversations that you might not be able to handle. Check out caringbridge.org and mylifeline.org.
As a parent, you may have to bring up challenging topics with your child, including documents that ask questions nobody wants to ask. It is important for individuals with all diagnoses and stages of life to consider legal documents such as advanced directives and naming medical powers of attorney. Documents such as Five Wishes and Voicing My Choices help you ask these questions in an approachable and conversational manner.
Remember to take time for yourself and to accept help when it’s offered and appropriate. Self care includes both physical and emotional care, such as taking some time for yourself to exercise or meditate. You know have significantly more responsibilities on your plate, so it is worth it to take some time to evaluate and ask for assistance. This may mean taking time off work or shifting your responsibilities or asking loved ones for help with specific tasks. There is no “right” way to be a caregiver and it is not a linear process. At Ulman, we assist everyone impacted by young adults with cancer, including caregivers. Please reach out to our navigator below by clicking “Talk to Us.”
The patient who has siblings is extremely fortunate. These family members are privy to all that is going on. Being that they are also young adults, or close to it, they can more easily relate to the stresses, fears, and concerns that the young adult with cancer might be facing. Siblings play a very important role in the support process. Hopefully, they are in close proximity or can communicate regularly, and can let the patient know that they are available for support. Young adult patients lean on their siblings for the kind of support that only a sibling can provide.
Siblings must find a way to face their own feelings. Watching a brother or sister struggle with a life-threatening disease makes one face his or her own mortality, or may bring up issues such as survivors’ guilt. In addition, the realization that their sibling may not always be around for them can be very frightening. While the family’s focus is on the sick sibling, the others have less attention from their parents and may need to fend for themselves much more than usual. All of this upheaval can be difficult and stressful. It is imperative that family members create a support system for themselves. That support system could be a close friend, a support group, or a professional counselor.
Spouses and significant others become caregivers, emotional supporters, advocates, and confidants for their loved ones facing cancer. Because they too are young adults, who often have not yet had to deal with or manage life-threatening illness, it is extremely challenging and difficult. Their personal fears have to be put aside as they help their loved one, but it is vital that they find an outlet for their own emotions. Help is available from other family members, medical practitioners, friends, caregiver support programs, or professional counselors.
Many young adults are in serious relationships, but may not be married or have a legal status. It is important for the patient to make their caregivers clear to the medical team, and to provide formal approvals for sharing information.
Caring for a sick spouse is hard. The most important thing I would tell anybody is to take time for yourself. It can be very frustrating trying to work, take care of home, keeping up with appointments and trying to care for your sick loved one. You have to take care of yourself too. Even if it’s an hour out of your day to read your favorite book or take an hour long bubble bath DO IT. I remember being so stressed out because I never took time to just breathe. That’s the only thing I would have changed. Other than that, you will make it through this tough storm. If I could, I know you can too! – Safiya Wise
Cancer creates an upheaval in young adults lives and the lives of their loved ones. This includes the trajectory of plans that a young couple may have made. Perhaps they are considering marriage, or starting a family, or having another child. They may be living paycheck to paycheck as they get their careers off the ground, or enjoying active lives. Spouses and significant others are not only taking care of the person they love, they are also thrust into a role that may include duties that had previously been split with their partner.
It is important for the couple to prioritize the health of their relationship. Issues involving intimacy and sexuality are common, but are not always asked about by their medical teams. Some of these issues may be medical, and some are an emotional result of the cancer diagnosis. Know that you are not alone, and consider talking to a licensed counselor or a doctor.
Friendships are some of the most important relationships that we all have. When a friend is diagnosed with cancer, it’s hard to know what to say or how to provide comfort. Many patients struggle to articulate what it is that they need from their friends. Among the patients served by Ulman, social isolation is consistently one of the top barriers that adolescents and young adults with cancer face.
Friends may play different roles in a patient’s cancer experience, which depends on the individual’s desires and emotional needs. Some young adults want their friends to make them feel “normal”, to ignore the treatment or the bald head or the achy joints and just allow them to take a break from cancer. Others simply need a shoulder to cry on. Some need logistical assistance, such as help after surgery or during treatments, or help with meals. A friend should actively listen to their friend’s needs. Trust yourself that you truly know your friend, and try to provide the most appropriate support you can.
My roommate, Andy, had an extremely challenging task in living with me right after I was told I had cancer. My moods and emotions changed from moment to moment. Sometimes was I was withdrawn and quiet. He often found himself trying to anticipate my frame of mind. I hope he and all my friends know how much I appreciate their patience with me. – Doug Ulman
Coworkers fulfill a unique role in the life of someone facing cancer. While this is not a family member, you spend 8 hours together every day. You know that your coworker is out of the office for their cancer treatments, and you are looking for a way to help. Recognize that it is up to the patient, and the patient alone, to notify leadership, human resources, or other coworkers about their health status. While your coworker will appreciate offers of assistance to alleviate duties, make sure that they still feel valued as a contributing member of your team. Respect any boundaries that the patient sets regarding their health status and the workplace.
It is important to listen to your friend or coworker. It is ok that you may not be able to relate directly to the challenges they face. You play an important role in your friend’s life, which is why they want to have you around. Understand that your social gatherings with your friend may not look the same way they used to, but they want to see you and maintain a relationship.
Download a copy of No Way! It Can’t Be!
A guidebook written by our founders, Doug & Diana Ulman, as a resource for young adults and their families.
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