Caring for your Partner - Caring for each other

 

      

      Caring for your partner with cancer

   → Carer's Survival Guide 1

carers guide and care

 

 

Facing Cancer Together -

Approach Cancer as a “We Dis - ease.”


     

When one partner has cancer, both partners are affected, as is their relationship.  Although cancer is a health crisis that can wreak havoc on any relationship, many marriages survive, and even flourish, after cancer. Approaching cancer as “our problem” and finding opportunities to continue to connect as a couple can help to minimize both partners’ emotional distress. It is possible to fight the battle against cancer together and to strengthen your relationship.

"Cancer has a way of making you take an inventory of your life. It has made some good changes in my life. I think that my husband and I are closer as a result.”

         

Although your partner has cancer, the illness is really happening to both of you. Your life is being disrupted in many of the same ways. You are sharing many of same emotions and concerns. You are both challenged to find constructive ways of dealing with the disruptions and threats posed by cancer and with the side effects of medical treatments. It can be tremendously reassuring and comforting to your spouse to know that the two of you are facing the illness together and that your support and involvement will be steadfast and unwavering regardless of what happens.

         

The complex emotions and lifestyle changes that follow a cancer diagnosis makes communication more difficult. Even couples who communicate well may have trouble talking about cancer. Talking about cancer is difficult because it involves intense emotions and topics that couples may not wish to discuss, such as sexual problems, physical limitations, and death.

Your partner may avoid talking about cancer for fear of upsetting you. This advice goes for both the person with cancer and the caregiver.  If you feel like talking about cancer, bring the subject up and let your partner know that it’s okay to talk about it. Reassure your partner that you don’t expect him or her to have answers; you just want someone who will listen.

         

Both parties can learn to recognize the signs that you or your partner is feeling stressed. Explore the different ways you may experience stress, and help each other to relax. Make a list of questions, and attend, when ever possible, medical appointments together to develop a shared understanding of what to expect. Write down how medical decisions will affect both of you, and make treatment decisions together.However, it is important, that your partner with cancer is in charge oft the final decision about his or her treatment and should not, under no circumstance, put under pressure to follow any treatment which is not agree with him or her!

         

Here are some of the specific issues that you should try to face together: How serious is the cancer? What is the best treatment, and what are the pros and cons of different options? Are there clinical trials to consider, or perhaps complementary or holistic approaches? What roles or division of labor should we take in learning about these matters? What should we tell our children, and how can we best help them in dealing with this? What changes do we need to make in our daily routine to accommodate the need for treatments and to deal with side effects? What does our family need in the way of support and practical help from relatives, friends, and (if applicable) our religious community? How can we best reach out for the support we need?

      

Talk together about how best to balance work, family, and self-care. Write down all the tasks that need to be done to keep things running (e.g., meal preparation, paying bills) and who is currently responsible for each task. Then, be honest and realistic about what each of you can and cannot do, and accept help. Helping makes others feel good and will benefit both you and your partner. Ask friends or family to do your laundry, walk the dog, or keep others updated on your condition. You and your partner can then use that extra time to spend together.


 


        


Do not assume that you know what your spouse is thinking or feeling about the cancer, or that you know what he or she needs from you. You might think your spouse is mostly scared, when actually he or she feels more sad or perhaps guilty about the consequences of the cancer for you. You might think that your spouse is strong and resilient, when actually he or she feels vulnerable and dependent on you, but may not want to show that. You might think that your spouse wants you to offer encouragement and hope, when actually he or she just wants you to say "I'm with you in what you are feeling, and we'll face this together no matter what happens.''

         

The point of this is to talk with your spouse about his or her emotional reactions and concerns....and to ask what your spouse needs from you. Some of these needs may be concrete or practical: going together to doctor's appointments, becoming educated about his or her cancer and the treatment options, handling all the phone calls from friends and relatives, taking over more household chores. Other needs may be more emotional: being attuned and responsive to what your spouse is feeling, encouraging your spouse to confide in you, offering empathy and support during difficult times.


Support your partners true feelings.


Most cancer patients feel pressure to maintain a positive mental attitude, and too often this pressure prevents them from expressing their true feelings. Your spouse might hold back in sharing legitimate fears because he or she does not want to disappoint or burden you, or because he or she thinks that negative emotions might jeopardize healing. Actually, it is the suppression of fears, sorrow, or anger that could jeopardize your spouse's psychological adjustment and immune response. Your spouse probably has good reasons to be worried and upset, but also good reasons to feel hopeful and optimistic. You should try to support and validate both sets of emotions (not only the positive ones).


        


              Focus your attention

          on your relationship


After diagnosis, couples often concentrate their resources and energy on coping with cancer. While this shift in focus is natural, couples need to continue to relate as spouses and not let cancer completely dominate their lives. Cancer can affect a relationship by altering roles and responsibilities, expectations, and communication patterns. Instead of looking back, look ahead. The way you handle cancer together could chart a new course for your relationship. Assure your partner of your commitment to him or her and to the relationship. Knowing your support will be steadfast and unwavering regardless of the outcome can be extremely reassuring and comforting for your partner.


               Spend Time Together


Many couples find that it helps to plan special time together. Some days may be better than others, depending on how your partner feels. So you may need to be okay with last-minute changes. You don't have to be fancy. It's about spending time together. That can mean watching a movie, going out to eat, or looking through old photos. It can be whatever you both like to do. You also can plan occasions to include other people, if you miss that.        

         

Make space. Protect your time together. Turn off the phone and TV. If needed, find someone to take care of the kids for a few hours.

Talking to each other about the quality of your relationship (e.g. how good it is, how much you appreciate your partner, etc.), about fond relationship memories and hopes for the future can help you to reconnect and reestablish emotional intimacy.  Spend quality time together by engaging in leisure activities and staying socially active, but do let others know your physical limitations.

The good news is that with thoughtful attention and honest communication, couples can not only maintain their relationships, but also develop a bond that is even stronger and more fulfilling than the bond they had before cancer.


 


Cancer will change your life and the lives of people around you.  Cancer affects the whole family, not just the person with the disease.   


Cancer has the greatest effect on marriages and other long-term partnerships. After a diagnosis of cancer, both partners may experience sadness, anxiety, anger, or even hopelessness. There may be shifts in relationships and in the way spouses organize to take care of household chores or family activities. For some couples, facing the challenges of cancer together strengthens their relationship and commitment. For others, especially those who struggled before the diagnosis, the stress of cancer may create more problems.

         

Cancer may force family members to take on new roles and extra burdens, while the person with cancer may be unable to fulfill their usual roles in the family. Children often don't know what is expected of them, parents lack emotional energy and teenagers may be torn between the need for independence and the need to remain close to a sick parent. Under these circumstances, people may feel angry, frustrated, confused or resentful. Family dynamics are strange at the best of times, and cancer brings extra pressure into this relationship. Patients often feel stressed about caring for their children, and other family members will sometimes compete for who is able to provide the best care. Patients can feel overwhelmed by the sheer number of family members who show up at their houses to help out. Family usually has the best intentions, but telling them when to get out is absolutely necessary.


 



 

It is extremely important that all lines of communications are kept open at all times between the  person with cancer and their partner!

An intimate relationship is deeply affected by cancer. Physical and emotional changes are pronounced, and a partner, because they are not experiencing these changes first-hand, often has trouble understanding what the patient is going through. This can breed a lot of hostility. Some people are afraid their partner will avoid physical contact with them. Others may fear their partner will leave them or find someone else.

Not surprisingly, many relationships end during or after treatment. Open communication, and frank discussions are necessary in order to ensure that neither partner feels alienated during treatment and recovery. Expressing your feelings, both positive and negative, is an important emotional outlet. Doing this regularly help prevent and relieve stress and frustration.

         

You may feel uncomfortable discussing the stresses of being a cancer spouse with your husband or wife, but there are so many other people you can turn to. Support groups are excellent ways to express your feelings in a setting where others truly understand your situation. Cancer mentors, counselors, trusted friends or members of the clergy are also excellent people to vent your frustrations to.

Some people are afraid their partner will avoid physical contact with them. Others may fear their partner will leave them or find someone else. If there were problems in the relationship before a cancer diagnosis, they will still be there after the cancer diagnosis.

        

If you and your family are used to sharing your feelings with each other, you'll probably be able to talk about the illness and the changes it creates. This is not always easy. Each person has to deal with their own feelings while trying to be sensitive to those of the person with cancer. Don't assume that people don't experience emotions just because they don't talk about it. Sometimes someone close to the person with cancer, particularly a partner, may feel so deeply that they are unable to express their feelings. Your partner or yourself are sometimes lashing out at each other or others in anger and frustration, particularly in the days and weeks following diagnosis. Often it is the people closest to you who bear the brunt of these outbursts - who acts as a ‘kicking board' as one person put it. Part of you both doesn't want to hurt them, but another part might be angry that you have a life threatening disease.

As family members, you may feel you should be patient and loving, but sometimes you may lash back. The possibility of losing someone you love and the burden of new responsibilities or your powerlessness may cause you to feel hurt and angry. It is much easier to deal with situations like this if people understand the reasons for your actions, and can talk about the feelings behind them.   Some people adopt a false cheeriness and rush in with assurances that ‘everything will be alright' without necessarily knowing if this is the case. Trying to bolster the person with cancer in this way may actually make it harder and cut off the person's attempts to express feelings. It may help family members and the person with cancer to know that you all share similar fears and anxieties about the future. Being open often allows you to enjoy more good days together, and gives you strength for more difficult times. Everyone needs breaks from dealing with cancer and time to do things for themselves, such as taking long walks, reading, or visiting friends.

         

Whatever your concerns and stresses were prior to the diagnosis, it is vital that the two of you talk about them. A conversation won't always fix the problem, but it will help you feel more like a team and give you both a chance to better understand each others feelings. There are strategies to strengthen the lines of communication, changing what hasn't worked in the past and keeping what has worked.

Sometimes a trained health mentor, councillor, family therapist or a social worker can help you find ways to help each other. Talking with a mentor, counselor, or joining a support group with other couples dealing with cancer can be helpful, even in dealing with intimate problems. The usual personal barriers often fall in such circumstances, and people who have coped with the stresses of cancer can often help others.


         


Here are some simple tips for good communication with your partner:


The following tips may help you talk with your spouse or partner about cancer, how it makes you feel, and how it affects you and your relationship. Because cancer changes the lives of each person in a relationship, both partners need to talk about how cancer affects them.

Pick times to talk when you are both free from distractions and not rushed. Some couples find that scheduling a daily time to sit down and talk works well.

If you have something especially difficult to discuss, it may help to practice what you want to say or write notes for yourself.

Because you and your partner probably have different ways of coping with stress, you may need different things from conversations. One partner may view cancer, as a problem to be solved while the other needs emotional support and validation. Talk about these differences and understand that both points of view have value.

         

Talk honestly about your feelings, both positive and negative. Emotions such as anger, fear, frustration, and resentment are normal reactions to cancer. Couples often don't discuss these emotions for fear of upsetting the other partner or because they feel guilty for having negative thoughts. Hiding feelings creates distance between partners and prevents them from supporting and comforting each other. You and your partner won't always feel the same way - you may be more scared while your partner may be more hopeful. Talk about these differences and respect your partner's feelings.

Tell your partner how you are feeling physically and emotionally. This sharing helps your partner understand your challenges and gives an opportunity for your partner to support you. Tell your partner often about the specific types of support and encouragement you need. One day you may need encouragement to get out of the house, while another day you may need some quiet time alone.

  • Listen more than talk. A good tip is to allow you each a specific period of time, five to ten minutes, to explain your worries. During this first talk, the other is not allowed to interrupt.
  • Ask; don't assume you know exactly how your partner is feeling at all times.
  • Give your partner the right to change his or her mind and feelings.
  • Make daily conversation, perhaps at a set time, a priority.

 


Situations and Solutions      


Supporting a partner who has cancer involves approaching new situations with creative, new solutions. Here are a few examples that may be helpful:

Situation:

We are both tired from juggling work and treatment, and there is no time or energy to keep up with household duties.

Solution:

Sometimes the most supportive thing you can do as a partner is to find and ask for help. Ask family members, friends, and neighbors to help with such tasks as cleaning, laundry, and cooking. Many people are willing to help, especially when the request is specific. If you have the financial resources to do so, think about any tasks that you can contract out to others. Also, talk with a social worker for referrals to local volunteer and professional service providers, such as meal providers or transportation.


Situation:

I can't take off work to be with my partner at every appointment, but he has so much on his mind that he doesn't always remember the information his doctor tells him.

Solution:

Make a list of questions together prior to each appointment on a notepad, asking the doctor or nurse to write down the answer next to each one. Also, request that a member of the health-care team writes down any new information or instructions in the same notepad. You may also want to ask the doctor's office if it is okay to tape-record appointments. Help your partner follow up with an e-mail or phone call if any further instruction is needed. And, see if a trusted friend or family member is available to accompany your partner to appointments whenever possible.


Situation:

Sometimes, my partner and I let our worries and fears build up, but we don't say anything; I'm not sure how to start talking.

Solution:

Fears and worries are common and normal in an uncertain or new situation. It may be helpful to schedule a time to talk about the concerns you have, on a day when you are not rushed. If you are not sure how to say it, write it down and ask your partner to read what you have written. As a supportive partner, let the person you love know that you are available to talk about anything they wish to discuss. If you are still having difficulty getting started, ask a health mentor, counselor, or social worker to help you get back on track. You may also consider joining a support group to get ideas from other couples that have faced cancer.


Situation:

I miss the sexual intimacy my partner and I used to have, but I'm not sure how to get it back or even how to bring up the topic with the doctor or nurse.

Solution:

Nearly everyone who goes through cancer treatment wonders about intimacy at some point. It is natural to want to be close to the one you love, and sexual intimacy is one way to express and feel that closeness. Your doctor and nurse are used to answering questions and giving information about what the possibilities and limitations are in your situation. It may be that your usual activities are all still possible, or that sexual intimacy will need to take on new forms. Your partner may also need emotional support for changes in his or her self-image or body image; your health-care team can provide information on this, too. As a partner, the most important thing you can do is to convey your willingness to support your partner and to maintain the emotional connection that is so important to intimacy. And, remember that intimacy is much broader than sexual contact.


Situation:

Lately, it seems like all we talk to each other about is the cancer.

Solution:

Schedule a cancer-free day as often as possible, when you focus on fun, relaxing activities as a couple. Remember what activities you enjoyed as a couple before the diagnosis, and make time to engage in those same activities to help you reconnect. Surprise your partner with a romantic dinner at home, tickets to a sporting event, or a restaurant outing with old friends. These activities can provide comfort and support to both you and your partner.


Situation:

The holidays are approaching, and we're not going to be able to celebrate as we have in the past. This will be disappointing for us both.

Solution:

Each of you should write down five things that you love about the holidays, then compare your lists and decide together how to make sure you preserve the important aspects of this time. Perhaps it is attending one favorite event, socializing with friends, or having quiet time for reflection. Then, discuss ways to create new traditions that you'll both enjoy this year and in the future. Even if your celebration is completely different than previous years, it can still be filled with meaning and love. It is important to remember that, for many people with cancer, the holidays mark a milestone for comparisons, as they reflect on what has changed since the last holiday and wonder what the future holds. During this time of reflection, consider writing your partner a love letter to express what he or she means to you, and what your hopes are for your relationship. And, make a resolution to keep your relationship as the top priority in your life.


        


Although the effects of cancer vary from couple to couple, here are some changes that occur frequently in relationships.


Changing roles and responsibilities


Cancer may change your and your partner’s roles, often in unexpected ways. Some partners become overprotective or controlling. This tendency may also affect the exchange of information both at home and with the medical team. Although it is may seem normal or even generous to try to spare your spouse some details of the diagnosis or treatment, keeping secrets usually turns out to be isolating for both. Often husbands or wives of those affected by cancer try to gain some control by becoming ‘experts’ in some area of the disease or by keeping the schedule or treatment and communicating with the medical team. If this is comfortable for both, then it may help in coping with the illness, but it is important to remain flexible and listen to each other’s needs.

        

Adjusting to a shift in roles does not come easily. A person who has always been in charge or served as the caregiver may have trouble adjusting to a more dependent role, while a person who has not served in those roles may struggle to take charge and provide care. These role changes often affect one’s self esteem. Either partner may feel frustrated by the other's over protectiveness or feel isolated when decisions aren't discussed. It is important to talk with your spouse or partner about your feelings, and work together as best as you can to make decisions about treatment, caregiving, and other issues. It may help you to think about it as teamwork and plan your strategy together. With pen and paper, jot down what tasks or chores need to be done and negotiate who should assume primary responsibility for each.

People with cancer may have to hand over responsibilities for a while. It can be disheartening to feel that you are not being an effective parent or earning an income at the moment, or that you can't do the things you would normally take for granted. These changes can alter the way members of the family relate to each other. Parents, for instance, might look to children for emotional support at a time when the children need it most. Some children may react by becoming disruptive to cover up their anxiety and uncertainty, withdraw through fear of being hurt or become clingy through anxiety that something might happen to you while they are not there.

       

In most relationships, each partner is responsible for specific chores. One partner may do the garden work and cook, while the other cleans and pays bills. A person with cancer may not be able to do some chores, which will need to be done by the other partner. If the partner with cancer has to stop working, the other partner may need to go back to work or work extra hours and, in many cases, take on the responsibility of care giving. These added responsibilities can become overwhelming, and may lead to feelings of frustration, resentment, and guilt. The person with cancer may also feel guilty for burdening his or her partner and feel sad and frustrated by his or her own limitations. Both partners may benefit from switching more active jobs, such as housework, for less strenuous tasks, such as paying bills. Although it may be difficult for both partners, accepting outside help from friends, family, or professionals can be invaluable. Most importantly, talking openly about limitations and brainstorming possible solutions may make the situation better.


 Changes in needs


Since physical and emotional needs change frequently as couples cope with cancer, it is important for both partners to communicate their needs. Asking for help getting dressed or telling your partner you need some time off from care giving can be difficult. But if you assume your partner knows what you need, your needs will likely go unmet, leading to frustration and anger. Both partners may also need extra reassurance that they are still needed and loved. You may think your partner knows how much you love him or her, but he or she may need to hear it more often.


Take Care of Your Partner who takes Care of You.


Cancer and its treatment are hard on everyone, even the people who take care of you. Sometimes your partner or caregivers become run down and get sick from the stress. Encourage them to take time off so they can do errands, enjoy hobbies, or simply have a rest.

Your partner / caregivers might want to join a support group and meet others who are also caring for people with cancer.

Watch for signs of depression in your caregivers. If you think that one of them is depressed, talk to him or her about it. Urge your caregiver to seek professional help. Let him or her know that other people can help you while they are taking care of themselves.


  Changes in Intimacy and Sexuality

Personal traits, such as a person's sense of humor, attitudes, honesty, and spirit, are a large part of what makes someone attractive to their partner. Cancer treatment may seem to change these qualities. It is important to remember those traits are still there, but for the moment may be overshadowed by the cancer experience.


Confronting sexual issues.


Side effects of cancer treatment can also affect a person’s sexuality. Some side effects that can do this are fatigue, lack of desire, and feeling physically unattractive. Women may have vaginal dryness, and men may notice the inability to have or keep an erection. Physical side effects, such as fatigue and nausea, can decrease a person’s desire for sex. Fear, anxiety, or depression can affect your sexuality, too.

       

Your spouse's cancer or the treatments have probably affected his or her sexual interest or functioning or feelings of attractiveness. Some common examples are the loss of libido caused by chemotherapy and hormonal therapy, the impotence caused by prostate cancer treatments, and the body image effects of mastectomy and reconstructive surgery. Even without such specific problems, the depression that cancer can cause can reduce libido and sexual functioning. The bodily or mood changes in your spouse can also cause you to lose interest.

Changes in the way you look can affect your feelings about your sexual appeal. You may feel as if you are no longer sexually attractive. It is not unusual for people with cancer to withdraw from their partners when they have changes in their body and self-image. People with cancer who have changes that affect their sexuality want to know their partners still care for them and are still attracted to them.Both partners may feel anxious about their sexual relationship, but may be reluctant to talk about their feelings. 

       

The key to dealing with these issues is open communication. Talk with your partner about your concerns about causing pain or discomfort. Because your spouse might be reluctant to broach these topics, you could take the lead by acknowledging these issues and conveying your desire to face them together. You might also go out of your way to reassure your spouse of your love and devotion (because of who he or she is as a person, not because of physical attractiveness or sexual performance), that your main priority is his or her survival, and that you continue to desire an intimate physical relationship. 

When sex becomes possible, let your partner know what is comfortable for you and when you feel up to it. Your partner may want to give you the space and time you need to adjust to changes in your body and self-image. Your partner may not want to rush you or seem to be insensitive, so it helps if you tell them of your desire for physical contact. Be specific about what you want. While he or she may not feel like having sex for a time, cuddling, holding hands, and other gentle forms of touch are ways to show your love. Tell your partner how you are feeling and find ways to maintain intimacy through gentle touching, kissing, and physical closeness.


Changes in thinking about the future


Cancer can drastically change the dreams and hopes that couples share. You or your partner’s plans for retirement, traveling, or even parenthood may change, causing difficult feelings such as sadness and anger. The process of working together to meet new, short-term goals, such as finishing cancer treatment, can help couples feel more connected. For some, re-evaluating priorities may result in a better outlook on life. Things that seemed important before the cancer diagnosis may give way to new priorities, such as enjoying more time together. Putting some goals on hold rather than abandoning them completely can help. 


Finding Meaning


Cancer may have become a part of who your spouse is, but it certainly doesn't define them. Focus on the qualities you love so much about them - a contagious laugh, beautiful smile, compassion for others. Those qualities are still there! Look through photo albums or home movies together and share memories. Make plans for the future. These are special moments that can help you to remember your spouse when they weren't cancer-stricken and also revive your spirits.

Many caregivers find that the cancer experience causes them to look for meaning in their lives. Taking time to think about your life and your relationship with your loved one may help you feel a sense of closure, accomplishment, and meaning. You may want to share your thoughts with your loved one or others, or you may just want to write them down or tape-record them for yourself.



Here are some questions to ask yourself or your loved one:


  • What are the happiest and saddest times we have shared together?
  • What are the defining or most important moments of our life together?
  • What have we taught each other?
  • How has being a caregiver affected my life?

When you're ready, you may want to step back and take a further look at life together. When someone you love has cancer, you may begin to rethink the things that are important to you. Some caregivers and their loved ones may do things together that they had always planned to do. Others don't make a lot of changes. Instead, they enjoy the life they have together much more. Life can become more about the person, not the disease.


Some things you and your loved one can do to celebrate your life together are:


  • Make a video of special memories.
  • Review or arrange family photo albums.
  • Chart or write down your family's history or family tree.
  • Keep a daily journal of feelings and experiences.
  • Make a scrapbook.
  • Help write notes or letters to other friends and family members.
  • Read or write poetry.
  • Choose meaningful objects or mementos together to give to others.
  • Write down or record funny or meaningful stories from the past.

You, the patient, and other family members can do whatever brings joy and meaning to your lives.

 


 Carer's Survival Guide 1

        carers guide and care

 

 

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