Establishing clear lines of communication
Talk with other caregivers, and you'll quickly learn that one of the hardest parts of being in this role is dealing with guilt, anxiety, and the constant feeling that you aren't doing enough. (That's why it's essential to let yourself off the hook: You're doing all you can, and that's good enough.) To help protect yourself -- and her -- from these feelings, you're going to need to set limits for yourself. And the key to doing this is clear communication.
You may, for instance, need to explain a little more to her than you ever have before about your job -- what your responsibilities entail, when you can get away, and when you can't. You may need to set some limits around your own family time, such as asking her not to call past a certain point in the evening unless it's an emergency, or setting up a phone tree so that calls about some issues come to you, and others are directed to others who are close to her.
Establishing clear expectations with the patient and others
Another way to establish limits is to set up clear expectations with the cancer patient. What can she expect your help with, and what's beyond the scope of what you can provide? Explain that while you're going to be the "point person" for caregiving, others will help you make sure everything gets done.
Using the list you made together of all the things she needs help with, focus on working together to assemble a reliable team of helpers to get it all accomplished. If others can help, set up a communications system that enables you to delegate tasks to them. Even those who live at a distance can take on a set of obligations. For example, if your mother is the one with cancer you might give your sister on the opposite coast the job of dealing with medical insurance, or your brother could take over financial planning questions.
If you don't know all of the person's friends and neighbors, don't be shy about asking. Remind her about her bowling league, the community at her place of worship, and any support network available, and ask how to get in touch with these folks.
Friends, neighbors, and other members' of her community will ask how they can help, and when they do, suggest that they pitch in with cooking, cleaning, driving, and other household needs -- then choose a task and assign it.
Ensuring that the system works
To make everything run smoothly, you'll want to get family members and other potential members of the caregiving team on the same page. What you especially want to avoid is the "call me syndrome," where every problem that arises -- and there will be lots of them -- triggers a call to you. Protect yourself from becoming a communications hub by talking to the patient about who's doing what. You might say, "Sarah's handling insurance, so call her when you have questions about what's covered." If there's a friend or neighbor you can put in charge of coordinating driving for errands and routine appointments, then ask her to call that person directly, and only call you when it's an appointment or errand that involves you. If it's hard for her to keep it all straight, you might type up a list of responsibilities and contact numbers and tape it to the wall by the phone.
Another key to avoiding feeling overwhelmed is to marshal professional resources so that every issue that arises doesn't land on your plate. You might, for instance, need to discuss her expectations about cooking, cleaning, and other household tasks. Perhaps she could hire someone to clean once a week, or call a handyman -- rather than you -- when routine maintenance issues crop up.
One thing you'll probably start to realize fairly quickly is that there aren't any hard-and-fast rules for how involved or take-charge you'll need to be. There will be times when the person you're caring for asks you to step in and make key decisions, and other times when your role will be to provide empathetic listening and a strong shoulder to lean on while she makes her own decisions.
Very happy to find this Website. It is 2-l/2 years since dx., treatment. Our medical team was and still is terrific. It took almost a year plus to feel normal. Notice memory not what it could be, as well as fatigue. Husband had Stage IV nasopharyngeal CA., rare in Caucasian Americans. We felt we went thru treatment and recovery fairly well. The aftermath of coping was not realized until months after treatment. In the dark moments, as caregiver, I found very little support groups to talk over feelings and coping skills. Eventually, almost 1-l/2 years later, we found a hospital that had a group meeting, once a month, for people with head and neck cancer. This group helped my husband very much.
Suggestions about how to delegate care giver assistance.