A diagnosis of cancer can have a profound effect on both the patient and his or her partner. In addition to the inevitable worry and concern, the well partner typically shoulders additional emotional and practical responsibilities within the family.
For example, the well parent often faces the additional challenge of finding a balance among the competing demands of children, partner, job, and his or her own needs.
Under the best of circumstances, finding this balance is difficult. When one parent is seriously ill, it becomes even harder.
Patience, clear thinking, and good communication can be enormously helpful at this time. The following are some suggestions that other well partners have found useful. They are written especially for you as you support your loved one.
More often than not, even the most loving of friends and family have only a limited idea of what you and your family need. People genuinely want to be helpful - but they can't do so effectively unless you are able to offer some guidance.
Generating a "help needed" list with your ill partner is a good first step-but it can be surprisingly hard to do. You'll find a step-by-step process for identifying your, your partner's, and your children's needs, and setting up a coordinated support network in The Daily Routine: Making It Work. After you review this section and talk with your partner, your list of needs might include:
For instance, immediately after your partner's surgery, you may need extra help with practical matters such as meal preparation and childcare. However, your partner may tolerate the treatment better than expected, and may wish to return to familiar routines as soon as possible. So check in regularly with your partner about what he or she wants or is able to do, and what might be passed on to others. Also think about your own needs, and how they might shift over time. That way, you can seek different types of support to match your family's circumstances and preferences.
A support system is made up of people-friends, relatives, and members of your community-who are available and interested in helping you and your family. Often, it can include groups you're part of already, such as your faith community or parent organization at your child's school. Sometimes these groups have established programs to support families within their community, such as keeping a list of volunteers who will provide meals or transportation. You, your partner, or someone else can inform these people of your family's situation and ask for specific types of help.
The Daily Routine: Making It Work offers tips on identifying a "point person" who assumes responsibility for checking in with volunteers and assigning specific tasks.
If you feel comfortable, let those in your support system know that you may need help in the future, and ask for permission to call then. For example, you might respond to someone offering assistance by saying, "We don't know yet what we'll need, but would it be all right if I, or someone else, calls you once we have a better idea?" When you set the stage in this way, you may feel less awkward asking later, when you do need something and can use that offer of support.
A cancer diagnosis comes with a range of new responsibilities and obligations, such as scheduling and attending medical appointments, filling out complicated insurance forms, and paying medical bills. Most likely, you will need some tools to help you get organized. The following ideas have worked for other people:
Record your children's schedules (school, activities, and social commitments), doctor's and treatment appointments, and names of people who are helping out that day. You can try using a different colored pen for each child or type of event to help organize the process.
Include contact information, such as phone numbers and email addresses, for anyone who is willing to help in a pinch. Make sure everyone in the family knows where to find this list: Posting it on the refrigerator is a good choice. Keep extra copies for others, and be sure to have this list with you (on paper, in a palm pilot, phone, etc.) for easy access.
Also use this notebook to keep notes on clinic visits, medication schedules and doses, and observations about your partner's physical and emotional reactions. Try to find a notebook or folder with large pockets for storing pamphlets, business cards, and other written materials.
You might set up a specific file folder or envelope for each, so that you can readily find what you need.
In all likelihood, you have a long list of responsibilities, concerns, and worries. After all, you still have your previous commitments, as well as some new duties arising from your partner's diagnosis. How will you manage?
One approach is for you and your partner (when possible) to discuss what is most important to your family, and to focus on these priorities. Then purposely try to lower certain expectations and let some things slide – at least for now.
For instance, perhaps you can tolerate a messier house or fewer home-cooked meals if it gives you more time to spend with your partner and children or to take care of yourself.
Cutting back on activities that do not directly benefit your family, such as chairing the annual school fundraiser, may make your life easier. See what you can take out of your schedule. Consider taking a walk or shooting some hoops with your kids instead of attending optional job-related meetings or activities. Or maybe you can stop at the grocery store for some prepared food instead of spending time in the kitchen cooking dinner.
In the long run, going through a crisis such as the diagnosis of cancer may strengthen the bond between you and your ill partner. However, on a day-to-day basis, it may not be realistic to expect that your partner will be as supportive of you as usual. Your children, too, may notice and react to the fact that your partner has less time and energy for them.
Some cancer patients temporarily experience a drop in energy and a tendency to withdraw inward. If you can, talk about this with your partner and try to find ways to stay in touch. If the opportunity arises, spend time enjoying each other's company instead of finishing paperwork or mowing the lawn. Share quiet activities when your partner is not feeling well, and make the most of good days or weeks. Look for ways to involve the kids as well. Maybe you can pack a picnic dinner and spend a pleasant evening together in the local park. If you've all had a stressful day, maybe you'd rather rent a favorite movie and snuggle on the couch with your children and partner.
Doing this might feel selfish, but it's crucial. If you become depleted and exhausted, you will feel worse and be less effective. Try to continue to do at least a few things that give you pleasure and you know restore your energy. Taking a break, such as planning an afternoon away, exercising, or requesting support from friends or professionals may all be useful.
If you start to feel so tired or distressed that you have trouble functioning, consider calling your doctor to discuss your situation. You might also talk with a social worker or other clinician who is part of your partner's treatment team if you feel you are being stretched too thin. These professionals are there for you too, and can provide emotional support and help with practical problem solving.
If you have trouble sleeping for more than a few days, you may find that you are less energetic and have trouble concentrating. Tired people tend to become more easily distressed and irritated, and may also be more likely to get sick.
Many people have trouble sleeping during stressful periods. If this is true for you, tell your doctor. He or she can discuss different ways to address this problem, perhaps by changing certain sleep routines, helping you manage stress by asking for additional support, or giving you some medication that will help you sleep.
As a result, they may be unaware of your needs or unclear about how to help. Probably, you will have to ask for what you need. This can be surprisingly difficult, especially when you need the help the most.
But try to do it anyway. Think about those you can rely on for practical advice, emotional support, or encouragement. Think through how you might ask, and try to be clear about what you are asking for: advice, guidance, support, problem solving, specific assistance, or maybe simply someone who will listen as you talk.
Or maybe there is no one available to help in this way. In this case, meeting with a therapist, social worker, or other professional who is familiar with cancer-related issues may be of enormous help. Most hospitals have appropriate professionals on staff, or will know others in the community who could meet with you. So don't hesitate to ask the treatment team, or your own doctor, for a referral.
For most people, these reactions change over time, depending upon circumstances. You may respond differently when your partner is diagnosed than when his or her treatment ends. You may be discouraged when your partner has a setback, and relieved when the news is good. At times, you may feel optimistic, closer to your partner than ever before, and grateful for all that is good in your life. At other times, you will feel the opposite.
To help you understand your reactions to your partner's illness, ask yourself some questions. How do you sort out your thoughts and feelings in other, less stressful situations? Do you talk with your partner, friends, or family? If so, who is best able to be your sounding board in this situation? Or do you try to work things out for yourself by thinking, writing, or letting thoughts and feelings drift in and out of your awareness without judging or censoring them?
Some people – even those not used to seeking outside assistance – find it useful to participate in cancer support groups. Other group participants may be dealing with similar concerns and also raising children while facing cancer. Strategies for coping, practical tips, common concerns, and support are shared in groups. Hospitals, treatment centers, and other organizations often offer such support groups for both caregivers and partners, or they can refer you elsewhere.
Some people, however, are not comfortable in groups. In this case, individual counselors, therapists, other mental health clinicians, or religious leaders may be more helpful.
Sometimes coping consists of temporarily setting aside your feelings while you take care of more pressing matters. This is quite different from ignoring or "locking up your reactions" as if they didn't exist (an approach that doesn't work in the long run).
When you have other important obligations that you just can't ignore or postpone, try to allow yourself to concentrate on them without feeling guilty or uncaring. You might find this easier if you can arrange for others to be "on call" to your partner and children during this stretch of time.
If you simply cannot add one more appointment or responsibility to your day, consider reviewing other health-related websites. Many health or disease focused organizations, such as the American Cancer Society, sponsor sites containing medical updates, postings from readers, and even chat rooms. These websites are available 24 hours a day, so you can view them at your convenience. And you can spend as little, or as much, time as you have available.
The following sites are especially useful to caregivers:
You can find more suggestions and resources in our For Caregivers section.
Discuss whether you are able to, or want to, go to doctor's appointments, treatment visits, or medical tests.
Ask your partner how he or she wants or needs you to be involved. If it would be difficult to honor your partner's requests (for example, if you cannot take time off from work without losing pay or risking your job), think together to find solutions.
Perhaps you could ask a friend to go with your partner once in a while, or talk with your supervisor or employer to figure out how you might manage this during work with the least disruption.
Your involvement also may change over time. For instance, you may not want, or need, to go to each treatment appointment, but you and your partner may decide that you should attend meetings with the oncologist or other members of the treatment team whenever the discussion will focus on planning, test results, or progress.
If you and your partner decide that you will go to doctor's visits and treatments, you may need to take time off from work. You may hope to keep your work and private lives separate, but this can become difficult to do. It may help in the long run to be clear and upfront about what you are trying to manage.
When approaching your employer, be specific about what you need and when you need it. If you say, for instance, "I would like every third Thursday morning off for the next 12 weeks," both you and your boss will find it easier to make the necessary adjustments to minimize any loss in productivity or concerns among co-workers.
You may need to accompany your partner at a time when your children are usually at home. Finding childcare during a weekday can be tricky, so give yourself lots of time to make these arrangements. Ask relatives and neighbors to pitch in, call local organizations that provide one-time or last-minute childcare, such as Parents in a Pinch, or see if someone in your official support system can help out.See The Daily Routine: Making It Work.
For instance, many well partners report that paying bills takes a back seat to managing the more pressing demands of the patient and children's needs. While this is understandable, ignoring financial responsibilities can damage your credit rating and result in large interest and penalty charges.
So try to think ahead. If possible, sit down with your partner and review your finances. If you are able, consult with a trusted friend, credit counselor, accountant, or financial planner. It may be helpful to meet with a social worker to review your current situation and stresses. He or she may be able to help direct you to other resources and assistance within the hospital or the community.
In addition, hospitals and treatment centers usually have financial information offices to help you with a variety of billing and insurance concerns. If you are not sure how to reach this office within your treatment center, ask a member of your health care team or connect through the hospital's operator.
It often is helpful to review details of your health, disability, and other insurance policies, including coverage, deductibles, options for increasing or changing coverage, and payment plans. This way, you won't be caught off-guard by unexpected expenses or coverage exceptions. Most people are not familiar with these details, and it will be helpful to get a better understanding of these important documents.
Once you have a clearer understanding of your financial situation, decide with your partner if you can delegate any part of your financial management to someone else. If you are comfortable with this, you might ask a close friend or relative to temporarily take over paying the bills and responding to other immediate financial concerns. If you are in the position to hire someone to assume responsibility for managing household expenses, consider this as well. Some banks and law offices offer this service.
By federal law, hospitals must ask all patients if they have named someone to make medical decisions, including decisions about life support, for them in the event that they become unable to do so themselves. In Massachusetts, this is called designating a "health care proxy." Other states refer to this as naming a "medical power of attorney." Often patients select their partners as their health care proxy, so you might prepare for this possibility.
As a first step, consider bringing this up with your partner. If he or she wants to name you, the partner, as the health care proxy, this will be a time for a conversation about preferred treatment options and to consider with the patient what care decisions would be consistent with his or her wishes, religious or moral beliefs. It is helpful if your partner puts these guidelines in writing and gives them to you (or to whomever is named the proxy).
While patients often complete a form called a "Living Will" that includes this type of information, these documents are not legally binding in Massachusetts. Recording general guidelines about the decisions of care and leaving them with the proxy is considered a more reliable approach. In any case, it is critical that the proxy understand what is important to the patient.
If your partner is being treated in a Massachusetts facility, you can obtain a copy of the Health Care Proxy form through your health care team. Forms and related information also can be downloaded from a variety of websites, including:
After completing the proxy form, your partner should sign it in the presence of two adult witnesses, make multiple copies, and then file the original in a place where it will be easily found. Your partner should also provide copies to all interested parties (physician, proxy, family, and/or attorney). A copy needs to go into the patient's medical record. If your partner is hospitalized, bring a copy for the inpatient record. If you need more information, ask your partner's treatment team.
This option is guaranteed by the federal Family and Medical Leave Act (FMLA). If you have questions about this law, or the implications of your requesting a leave, contact a hospital social worker, the treatment center's financial information office, the Human Resources department at your workplace, or an attorney.
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