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- For Caregivers: Practical Tips for Coping with Your Loved One’s Merkel Cell Carcinoma During the Holidays, Dec 10, 2019
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Every month, featured experts answer your questions about coping with cancer including specific answers to questions asked by caregivers.
For Any Cancer Diagnosis
I've been diagnosed with advanced cancer. I have five children and feel they don’t want me around for Christmas, because it makes them sad, and they don’t have the time for both me and their own families. I can’t be alone. I don’t know what to do to or what to say to them.A.
I am very sorry to hear that you are facing these challenges this holiday season. While you feel that your children are not wanting to have you with them, you don’t say whether you have spoken with them about your concerns. It may be that they are unsure of how you are feeling or what your expectations might be concerning Christmas. If you are in need of any special assistance or equipment to facilitate spending time with them, they may not feel prepared to manage those needs. The key may be to open up a discussion with them to talk about your preferences for being with family that day and to address the practical considerations that would make it possible.
As difficult as it is to cope with cancer during the holidays, it is also possible to be joyful. For many, the idea that you can feel both sad and joyful is an unusual concept. While your family may experience feelings of sadness associated with the many issues related to your cancer, there can also be joyfulness when spending time together with those who mean so much and creating memories of a special day. The challenge can be in maintaining an awareness of the pleasures that are available in the midst of a very difficult time.
Many people face challenges like yours during the holiday season. It might be helpful for you to speak with a CancerCare social worker about your unique circumstances, so please call us at 1-800-813-HOPE (4673). We’ve also compiled suggestions that might be helpful in our fact sheet, Coping With Cancer During the Holidays.
Three weeks before the holidays, my father was diagnosed with advanced cancer. Hospice care has started but I find it isn’t enough and other family members who live in town really don’t offer help. Some days seem too overwhelming - how do I focus on everyday activities?A.
Depending on your particular family and faith traditions, there can be a lot of expectations at this time of year, many of them focused around finding joy in the season. When illness or grief interrupts those expectations, it can be difficult to manage.
Be kind to yourself during this time, and consider what is truly important to you now. That can require you to adjust your expectations about everything from shopping to housecleaning. Make a list of those things that you truly enjoy and decide which of those traditions you would like to retain. Give yourself permission to “pass“ on those traditions that generate stress or involve a good amount of effort
This may also be a time that you can ask others to provide additional support. This can include a conversation with the hospice social worker concerning what other services may be available. You might use the services of a hospice volunteer or have the ability to engage additional home care supports on your own.
While it would be ideal for family and friends to volunteer their help, it may be necessary to ask them. Consider whether there are specific tasks that you can ask others to perform which can provide you a break from the day-to-day demands of care giving. Is there someone who can stay for a few hours, offer to go to the market, or bring your father to a scheduled appointment? Many times family and friends would like to help but are at a loss as to how to be helpful without being disruptive to routines.
I was diagnosed with cancer a few months ago and I don't feel much like celebrating the holidays. I'm worried I'll be a downer for my family and I'm not sure how to act.A.
It makes sense that you don’t feel celebratory–you may be coping with fatigue or pain, and feel uncertain about the future. While your self-expectation may be that you should be smiling and happy at this time of year, the truth is no one can ever be sure how he or she might feel on any given day, and cancer, especially, doesn’t go on holiday. But try not to let your fears of being a “downer” keep you from staying close to the important people in your life. Although people close to you may not know how to approach the subject of cancer, that doesn’t mean they won’t be understanding, or don’t want to help. If you are open to talking with them, you may find that friends and family are more compassionate than you anticipate. While not everyone may be equally helpful, raising the subject of cancer may bring many of your family members closer. Here are some practical tips that could be helpful to you:
Listen to your body. Gauge your physical limits to give yourself time to rest and to manage your energy.
Manage expectations. Remember that you can only do the best you can–if you are not feeling well during a holiday, remind yourself that it is just one day of the year, and that the people you want to be with will care about you just as much even if you don’t feel like celebrating. Give yourself permission to be less than “joyful” all the time.
Communicate. Talk with friends and family members a few days before you see them. Let them know how you are feeling and that you would like their understanding. Since it is likely that not everyone you know will respond the same way, spend a moment to consider how much you want to share and how much a given person will be able to hear.
Plan ahead. Don’t hesitate to ask for what you need. Most often family and friends want to help, but they may not know how, or what to say. They may be relieved if you reach out to them to let them know what will make you feel comfortable. Create a list of tasks or that you can ask others to do for you that you need help with.
Keep in mind what is most important to you. Holiday traditions are important, but that doesn’t mean altering them is bad–if you aren’t able to do exactly what you have done in the past, there is nothing wrong with starting new traditions. And while gifts are nice, it is the sentiment behind them that is most memorable. Simply being with people who care about you is a gift, both to them and to yourself.
For additional tips, please read CancerCare’s fact sheet, Coping with Cancer During the Holidays.
As caregiver for my husband, I have no interest in the holidays. I know this is a disappointment to our adult children, and our young grandchildren don't understand why I just don't care about shopping, etc. What can I say to them to tell them I love them but I am just so sad, other than just that?A.
Caregiving is a difficult and an often unappreciated part of living with a person with cancer. It is physically and emotionally draining, if not exhausting, and others may not be aware of the difficulties you are facing. While the holiday season may mean time off from work for some, you may feel that there is little or no time off from your caregiving duties.
Tell your children and grandchildren that you love them as much as ever, and that you would like to do everything that you have done in the past, but that you may not be able to right now. Everyone will feel more comfortable knowing what you are thinking, and will feel reassured that while the way you need to spend your time has changed, your feelings for your family haven’t.
Explain to them what you are not up to doing, and ask them if they could help you with some of the things that you would normally do alone. Giving your adult children (and your grandchildren, to the extent that it is appropriate) new tasks and responsibilities would likely make them feel good about being able to help, and create even stronger bonds among you. You can reassure your grandchildren that although you don’t feel up to doing the things that you have normally done with them in the past, that this doesn’t mean that you won’t do those things again in the future.
If possible, see if there are people close to you who can look after your loved one while you find some rest or diversion, so that you may enjoy holiday activities with others, or just spend some quiet time alone or with a close friend.
For more general tips on how to support yourself as a caregiver, read our fact sheet “Caring Advice for Caregivers: How Can You Help Yourself?”
I'm worried about how the side effects from my treatment will interfere with the holidays. Any suggestions?A.
People view the holidays as a time to celebrate and connect with family and friends. However, the season can be stressful if you are living with cancer and trying to manage treatment side effects such as fatigue, weight loss or gain, nausea or pain.
Fortunately, doctors have many ways to reduce and even prevent side effects. At CancerCare, we often use the word “coping” to describe how people deal with cancer. People sometimes mistakenly think that coping means just living with a problem, whether you like it or not. But coping actually means managing a problem and finding a new way to take control of it.
You can maximize your enjoyment of the holidays by letting your health care team know now about your holiday plans and ask for their help in taking control of treatment side effects. Make an appointment with your doctor to discuss your concerns and ask for guidance regarding holiday meals, travel, and conserving your energy, as well as rescheduling your treatments, if possible, so that any resulting side effects will not occur on during the holidays.
CancerCare offers publications offering additional information so that you can better manage your treatment side effects and enjoy the holiday season:
- Coping with Cancer During the Holidays
- Understanding and Managing Chemotherapy Side Effects
- Coping with Cancer: Tools to Help You Live
You can find additional information through the National Cancer Institute.
CancerCare’s social workers are here to help you with emotional support and practical help. Call 800-813-HOPE (4673) or email firstname.lastname@example.org.
This is a hard time of year for us as my wife has cancer. Would you recommend any books about talking to and doing the best for our kids?A.
When coping with a cancer diagnosis, families often experience a variety of changes and adjustments during the holidays and other significant events. Discussing and preparing for these changes with your children can open up dialogue, elicit questions and help you to understand what your child is feeling. Although certain rituals or customs may change, it can also be helpful to honor old traditions as a way of maintaining a sense of normalcy for your children. Remember that cancer doesn’t have to be the focus of the holidays, and you have discretion over how much room cancer gets during your celebration.
Books can be helpful tools or supplements to reinforce language and ideas to help children cope with a parent’s cancer diagnosis, but should not replace a conversation. The holidays may be an opportunity to have such discussions, as you are likely joining together as a family to reflect on the past year and to make plans for the year ahead.
When selecting literature to help you talk to your children, consider your child’s age, developmental stage and maturity level. Being honest allows children of any age an important opportunity to ask questions and express how they feel. You may not have all the answers, but you can remind your child that you will always be available for them to ask.
For more information about coping with the holidays and communicating with children about cancer, read CancerCare’s Coping with Cancer During the Holidays and Helping Children When a Family Member Has Cancer, or review the following books to help you navigate these conversations:
- How to Help Children Through a Parent’s Serious Illness by Kathleen McCue and Ron Bonn (St. Martin’s Press: 1994)
- Helping your Children Cope with your Cancer by Peter Vandernoot (Hatherleigh Press: 2006)
- When a Parent Has Cancer : A Guide to Caring for Your Children by Wendy Schlessel Harpham, MD (Harper Collins: 2004)
My mom is receiving palliative care currently at home. I really am feeling the pressure with this time of year with expectations (e.g., attending holiday parties and birthdays). While I mean to be attentive, I find myself forgetting to get gifts, or just not feeling like going out. I know my friends ultimately will understand, but is there a way to explain this to them without seeming completely selfish when I just need a few days to myself?A.
Caregiving is a difficult and an often unappreciated part of living with a person with cancer. It is physically and emotionally draining, if not exhausting, and others may not be aware of the difficulties you are facing. While the holiday season may mean time off from work for some, you may feel that there is little or no time off from your caregiving duties. It stands to reason that you may forget to buy gifts or not feel like going to parties. You aren’t being selfish, you are sensing that you need to take some time for yourself, which is necessary. You are spending both mental and physical energy caring for another person, and that is no small thing.
Communication is so important—without having a direct exchange with your friends it will be difficult to know exactly what their expectations are, or to what extent they understand your situation. One thing to do before you reach out to your friends, is to clarify how you are feeling and what you want to say. Perhaps you can set aside a few minutes to write down your thoughts and feelings about holiday pressures and expectations, and what it is that you would really like the holiday season to be for you. Having done this, you might call your friends—or send what you have written as a letter or email. It is likely that they will be able to empathize. You might begin the conversation by saying how much you appreciate their friendship, that the parties and events sound enjoyable, but that right now you would like their understanding–your responsibilities are too great to let you participate in all their activities. By stating these things simply and directly you are being sincere and won’t come across as selfish or thoughtless.
My father has advanced cancer and this may be his last Christmas with us. How does our family make this holiday not put too much pressure on his mental state and make the focus on just trying to enjoy the time we have left with each other?A.
Thank you for the thoughtful question. As I am answering after Christmas, I hope it will be this will be of use—perhaps at New Year’s or a birthday, but I think the same principles hold true.
The answer depends on how what your father wants—or possibly, how much you are able to figure out what he wants. If your father is aware that this may be his last Christmas (or birthday, etc.) and you feel he is able to talk with you about this, simply ask him what he wants and would make him most comfortable or happy. Would he like to have just a few people around him and a quiet dinner? Would he like to watch you and other relatives have the same Christmas routine as always? Or does he have something else in mind entirely?
Too many options can overwhelm anyone, so you may want to present only two or three choices. For instance: “Dad, what would make you feel best? Just immediate family at home? Family and close friends?” And so forth. If he can’t or won’t choose, go ahead and choose yourself. You love him. So your decision won’t be “wrong.” The most important thing is to let him know how happy you are to share this holiday with him. Tell him what you love about him. What you appreciate. Encourage other people to do so to.
If your father is unable to understand, or not willing to accept that he is near the end of his life, you will need to rely on your judgment and draw on your experiences with him. Has he ever given you his opinion about another person in a similar situation to his, or spoken about the final days of his own father? This may give you insight into what he would like now. Think back: historically, what has a holiday meant to him? Has the focus been on a family dinner, or seeing relatives from out of town or gift giving or an activity? Keeping things simple often helps. You may want to choose just one easy thing.
It sounds as if you have had many joyful holidays together, and while there is comfort in the repetition of activities from year to year, remember that not every year is the same, and that your father may not have a lot of time, but he has your love and devotion and that is the biggest, most lasting and important gift of all.
My 51-year-old husband is in the last stage of cancer. It's very difficult for all of us and specially for our teenage son. He needs some counseling and maybe groups to talk. I need help regarding this especially during the holidays.A.
A good place to begin your search for counseling for your son would be the hospital where your husband receives treatment. The social work staff may be able to provide individual counseling and/or support groups. If these services aren’t available at the hospital where your husband is being treated, they might be able to provide you with the name of a local therapist who moderates groups or who works with adolescents individually. Your general practitioner might also be a good source for referrals to these types of services. If your husband is receiving hospice care, the hospice team often provides counseling for the family.
It would likely be helpful to discuss with your son what he thinks would be the best way for him to process his feelings. Does he want to participate in a group, or would he be more comfortable talking one-on-one with a counselor? Opening up a dialogue and eliciting questions will help you understand what your son is feeling and can deepen the connection between you. Despite the difficulty of the situation, he will also see your concern and dedication to helping him bear the reality of the situation.
Additional resources that may be helpful include:
- Our podcast Helping Children and Teens Understand When a Parent or Loved One Has Cancer
- Our publication “Helping Teenagers When a Parent Has Cancer”
Although CancerCare does not provide telephone counseling to teens, you may call us to speak with one of our oncology social workers who can help support you as you help your son cope with his father’s illness. Our social workers can also help you find local resources. We can be reached by calling 800-813-4673.
For Brain Cancer
My mother has cancer in the brain, and she is acting like a completely different person, not her normal friendly loving self. During the holidays, how can I cope with basically sitting at the dinner table with my mom not being herself?A.
Caring for family is a natural part of our life journey, and the care that we give, even when challenging, offers us a way to bond with loved ones. It may help to have people with you who can support and comfort you as you look after your mother. Having a friend at hand who is there for you could help alleviate your feelings of stress. Ask other relatives or friends of your mother to spend time with her, so that you do not bear all the weight of her needs. It may be helpful to focus on what there is to be grateful for, such as your mother’s presence, having friends and other family, and that you are together and safe. You may not be able to change your mother’s behavior, but you can schedule time for yourself to do things that will bring you joy.
During holiday time most of us would like to experience the same comforting things that we have had in years past, so it stands to reason that it would be difficult to cope with changes you are seeing in your mother. It would be helpful to know whether the changes in her behavior are the result of a physical change to her brain or are the consequences of fear and anxiety about her diagnosis.
- A person diagnosed with a brain tumor may exhibit changes in behavior and thinking that may include mild memory loss, mood swings, or intense emotional outbursts. Where the tumor is located, the type of medication (such as chemotherapy and steroids), and the amount of stress that a person is feeling could cause these types of changes.
- Talking with your mother, asking her what she is thinking and feeling, is an important first step. Is she aware that her behavior has changed?
- Then, discuss changes in personality or behavior with her doctor to rule out a medical cause and make any adjustment to medications if that is needed. The change in her personality may be a sign that she is struggling emotionally with her diagnosis. A brain tumor diagnosis can bring up many feelings, including anxiety, anger, or sadness. Since you are a person who your mother is close to and who she feels safe with, those feelings may be directed towards you. Letting her know how her behavior is affecting you and seeking support can be very helpful.
For Breast Cancer
My wife is receiving chemotherapy for breast cancer and I know the holidays will be hard. Do you have any suggestions as to what I can do to help her?A.
The holidays often represent a time of celebration and connecting with loved ones; coping with cancer treatment during this time can be stressful. Your wife may be experiencing side effects that make it hard to focus on the holidays alone, but there are many things that you can do to help her cope with the stress of treatment and to enjoy this holiday season. You can help your wife significantly by paying attention to both her physical and emotional needs, as well as your own.
Talk to your wife about how she wants to spend the holidays. You can also support her as she makes decisions about what activities she can tolerate this year. Managing expectations is an important part of coping with a cancer diagnosis, so consider what traditions she may need to take a pass on this year. Establishing new holiday traditions with close family and friends may allow her to feel more satisfied and supported.
Having an open conversation with her medical team about holiday plans can help provide guidance and support in managing side effects appropriately. They may be able to make dietary suggestions, offer advice on pain management, or make a more flexible treatment schedule if possible. This may help in keeping her focused on the meaning of the holidays rather than uncomfortable side effects.
Also, take good care of yourself this holiday season. As a caregiver, it is important that you think about your needs as well. Talk to friends, go for a walk, or spend alone time with your wife. Considering your own feelings will help to maximize the support you are able to offer your wife.
CancerCare offers publications to help you and your family cope with the holidays during cancer treatment:
You can also listen to CancerCare’s Connect Education Workshops that address coping with cancer during the holidays.
CancerCare’s professional oncology social workers can provide emotional and practical support to further help you and your family find ways of coping. Please call us at 800-813-4673 for support and practical help.