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, will answer 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 will address these issues, and more.
If you have questions about caregiving, ask our expert today.
We will answer as many questions as possible, but we cannot answer all questions submitted. We will post answers on an ongoing basis throughout November. Submit your questions now and check back here for updates.
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.