November 2017 Ask the Expert: Caregiving
Caring for someone with breast cancer can be physically, emotionally and financially exhausting. A caregiver may have to play the roles of spouse, friend, lover, note-taker, driver, cook, nurse, spokesperson and more. It isn’t easy.
In November, Living Beyond Breast Cancer expert Allison Schaffer, LCSW, answered your questions about caregiving. Maybe you’re a caregiver wondering what your loved one needs or how to be a better advocate for them. Maybe you’re a person with breast cancer wondering how to communicate your needs to your caregiver or how to help your caregiver take care of him or herself, too. Ms. Schaffer addressed these issues, and more.
Remember: we cannot provide diagnoses, medical consultations or specific treatment recommendations. This service is designed for educational and informational purposes only. The information is general in nature. For specific healthcare questions or concerns, consult your healthcare provider because treatment varies with individual circumstances. The content is not intended in any way to substitute for professional counseling or medical advice.
I understand that asking for help can feel very hard, and this is a common sentiment for many people who are used to being the main caregiver. But asking for help is such an important step, as it can help you manage all of the tasks you are juggling, reduce stress, and allow you to focus on yourself and your needs. Asking for help is a sign of strength and learning how to receive help can be a valuable experience that can expand your relationships and strengthen your connection to family, friends and community.
When you are ready, you can start a conversation with your family to let them know that you need help and share with them that it feels difficult to ask them to help you. You can tell them some small ways in which you are willing to accept help, and then add to the list over time, as it gets easier to accept help. Through this conversation and experience, you may learn some new things about yourself and your family members and realize how good it can feel to receive help from other people.
Given the difference in your relationship with your wife versus your parents, yes, it may be helpful to consider a different approach as a caregiver to your wife. While some of the tasks of caring for your wife may be similar to caring for your parents, there will likely be different needs or ways in which you can step in and support your wife, due to her present health as well as the intimate connection of your relationship. This can be an important time in your relationship with your wife, in which you strengthen your connection and relationship while navigating a difficult experience together.
Don’t feel like you have to know exactly what your wife needs. It could be very helpful to have a conversation with your wife to understand how she wants to be cared for. You can revisit this conversation over time.
Many times parents try to protect their young children from events surrounding illness and minimize the impact and disruption to their lives. While these decisions are often made from a loving place, they may have unintended negative consequences of children feeling left out of what’s happening in the family, disconnected, and sad. As a family, it can be helpful to have open, age-appropriate communication about what is happening, and to include them in discussions and decision-making about ways they want to help. Allowing children to participate in caregiving can create strong bonds within the family, and positive memories, and can increase their resiliency and give them a sense of purpose and pride. Over time, it is important to check in with the kids to assess how they are coping and adjust activities and care based on their interests and their mom’s needs.
Here are some fun, simple ways to involve children in care:
- Allow kids to pick family activities or choose play dates with friends during designated times.
- Schedule regular craft activities so the children can make cards or gifts for Mom.
- Assign children a meal of the week and allow them to pick the menu, grocery shop and prepare the meal. (Adjust as needed for ages of children.)
- Plan special dates with Mom or Dad to allow for one-on-one time with each child.
- Select age-appropriate chores for the children so they can participate in the household maintenance. If you choose, you can offer children rewards for completing chores.
Some children benefit from meeting healthcare team members and seeing the medical facility, as it can give them peace of mind. If you want to do this, consider talking with medical staff in advance, so they know your children will be coming and can be prepared for them. You can prepare your children in advance with conversation and then talk with them after the visit to answer any questions.
It can be difficult to maintain your intimate/romantic relationship while also being a caregiver and it can take time to adjust to changes in your role. During this time, in which you are managing multiple roles, it is so important to make sure you are taking care of yourself and continually checking in with yourself to see what you need and how you can offer help. Staying closely connected with your partner and having open communication about role expectations, personal needs and status updates can help you to navigate your intimate relationship and caregiving responsibilities.
Here are some tips for balancing an intimate/romantic relationship with caregiving:
- Prioritize self-care to help ensure your needs are met before trying to help others.
- Communicate frequently with your partner to discuss needs and expectations.
- Schedule and plan dates to stay connected as a couple. You can find creative ways to do this even with caregiving needs and physical limitations, for example, watching a movie together while your loved one is getting treatment.
- Enlist the help of others to assist with caregiving tasks so you can maintain balance between roles and your own self-care.
It is so wonderful that you are genuinely offering to help your friend during this time. But many times, people just like you offer to help friends in that way, saying ”please let me know how I can help” or “please call me if you need something.” And, unfortunately, this puts the responsibility on the other people to figure out what they need and then to call you to ask for help. This can inadvertently create extra burden and responsibility for your friend, who is already juggling a lot, and could really benefit from your help. It might be difficult for her to know what she needs and it also might be hard for her to ask for help.
So it can be helpful to offer concrete, specific ways you can help, and then let her tell you if this works for her. And you may want to reach out to her and offer concrete help on multiple occasions, as she might need help over time.
When you offer to help:
Be specific. Say something like “Can I bring you dinner tonight? Please let me know if you have any food allergies or restrictions. I’ll be happy to drop it by tonight when you are home, or I can leave it on your front porch.” If you drop dinner off, be brief with your visit, in case your friend is not up to socializing.
Be dependable. If you agree to help, it is important that you follow through with your offer to help, because your friend is counting on you. And if you need to make adjustments, communicate changes clearly and without putting additional burden or distress on your friend.
Be respectful. It is important to respect their right to decline help and their right to privacy.
Be clear with how you can help. Be honest with how you can help so you don’t overcommit yourself, or offer things that are not part of your skill set. For example, if you don’t like to cook, don’t offer to make dinner. Instead, try offering to pick up dinner from your friend’s favorite restaurant.
It is absolutely normal to be scared and to be thinking about and considering how your mother's diagnosis may impact your risk and your children’s risk. Fortunately, with recent advances in science and the growth of genetic testing, there are many resources for you to get more information about your and your children’s risk of developing cancer. You may also want to talk directly with your mother’s oncology team, to determine if there are genetic testing and counseling services available through the medical facility. By accessing these services, you can get information, education and possibly testing that directly applies to your or your children’s risk. Taking action, or connecting with organizations, can provide you with important health information as well as peace of mind, and if needed, access to further resources and programs to manage risk or engage in prevention behaviors.
It is wonderful that you are supporting your mother through her illness and that you want to be involved to ensure she is receiving high-quality care and being treated with respect. As a first step, I suggest talking with your mom directly, outside of a medical appointment, to share your concerns with her and listen to her feedback. As a result of this conversation, you might learn more about your mom's experience and desires. That information can guide you to determine concrete steps that you agree on to address issues with her medical team as well as to help you support your mother's wishes as the patient.
While having these conversations, you may or may not agree with your mother's choices. Hopefully you can find a comfortable compromise that respects her choices of medical providers and treatment and supports your desire for her to be treated respectfully and receive the best care possible.
The scenario you describe is a very common one for people in the midst of cancer treatment or recovery. Often caregivers have the best of intentions and want to “do” something to help or be able to “fix” the situation. The reality is that they cannot fix cancer. That can make people feel helpless, and then they often help in ways that are not always in line with what you want or need.
I recommend that you have a direct conversation with your husband to let him know how much you appreciate his support, to be honest about how the help he is offering makes you feel and to share with him what your goals are: “to be active and healthy.” Then give him ideas of how he can better meet your needs. It is also important to give him the opportunity to share his experience and feelings about caregiving for you as this creates an opportunity for increased connection and understanding. Above all, he wants to help, and when you communicate in a clear and loving way, he will likely appreciate this information and you will feel better as well.
Tips for your conversation:
- Set a time to talk that works for both of you so that you can both be focused and present.
- Use “I” statements (like "I want to have a healthier lifestyle," not "You are stopping me from living a healthier lifestyle"), so as to avoid blaming or inadvertently making it sound like you are saying that he is doing something wrong. This is about expressing your unique needs and there is nothing wrong or bad about that.
- Speak openly and honestly and be willing to ask specifically for what you need.
- Create time for follow-up conversations to check in with each other and assess how things are going and to communicate any new desires or needs.
This is a really common scenario, and a difficult one, because it is hard to see someone you love hurting. Many women experience depression, or changes in their mood, after receiving a cancer diagnosis due to the impact of the diagnosis on life and related changes, or due to the side effects of treatment or surgery, or long-term medications. It is important to note that for some people, these feelings and mood changes improve over time as they adjust to the diagnosis or situational aspects of cancer that are creating distress. And for some people, the mood changes continue and they can benefit from increased support and mental health services.
Please note that people who have a history of depression or other mental health issues are at greater risk to develop depression or other mental health issues after a cancer diagnosis.
Many people, for various reasons, have biases about using mental health services for support to cope with difficult life events. And yet, so many people can, and do, benefit from mental health services, especially in relation to a cancer diagnosis. Mental health services can help people normalize the experience of cancer, process emotions, learn new coping mechanisms and connect to other helpful resources. Below are some resources about depression and cancer that might help your wife better understand her experience. Then she may be willing to seek further support with a licensed mental health provider, or access other support services, such as online support groups or in-person support groups. If she is interested, she can ask her medical providers for resources and local referrals.
Even if people know that help is available, they may never be ready or willing to accept help. In these cases, is it important to respect their choices, and you can continue to stay aware of any mood changes and communicate (as appropriate) with them and their medical team. You may also consider connecting with support services to help you process your experience as a caregiver and to promote your own well-being.
LBBC has many resources about depression and anxiety, including info about how it affects young women and how a breast cancer diagnosis can interact with an existing mood or anxiety disorder.
The experience you describe is a very common one, and often in stressful times of illness and caregiving, people's relationships revert to how they used to be in the past. This can create a wide variety of emotions and challenges that can be frustrating to manage. Now that you are aware of feeling like your relationship is reverting, you can take action to create a relationship with your parents that fits where you are at in life right now.
It is important to talk honestly, directly and compassionately with your parents so you can let them know how you feel and then work together to create a relationship that is based on present circumstances, versus old patterns and dynamics. It is helpful for you to clearly communicate any desired changes in the relationship and establish new boundaries that will help to adjust the relationship so it feels better for you. When you talk to your parents, it is important to ask about and listen to their experience of caring for their child during an illness. This conversation may uncover some important information for all of you, and together you can work toward creating a different, stronger relationship that feels good and meets your needs, as well as theirs. And it can be helpful over time to check in with them to evaluate how things are going and communicate additional needs or changes as they arise.