Christina Bach, MBE, MSW, LCSW, OSW-C, Tracy Lautenbach, MSW, LCSW & Neal R. Niznan, MSW, LCSW
Abramson Cancer Center
Ultima Vez Modificado: 12 de diciembre del 2012
The following tips were taken from OncoLink Coping With the Holidays webchats.
Firstly, your feelings are not uncommon and may reappear every year around the time of your loved one's death, despite passing of time. Reaching out for help and support is a wonderful idea. Reach out to others you may know who lost someone close to them - a friend to talk to and express your feelings of loss can be very therapeutic.
The holidays are a time for giving-so give yourself the gift of acceptance. Acceptance not so much of the loss, but that the grief you are experiencing is one step in the healing process. It is natural that thinking about and remembering your loved one at this time brings pain and sadness. Do not fight this. If you need to cry–do so. Do not hide yourself away with your grief. If your grief is shared, it is somewhat diminished. Remembering your loved one on special occasions is also a way to honor him/her. Tackle what you feel you are up to doing during the holidays, but take care of yourself and have others respect whatever limits you may place.
You may want to seek out professional support for coping with your grief. Call your local hospice organization, as most hospices offer bereavement support for people in their community (whether or not your loved one was under their care). PBS put together a list of grief resources and the ACS has a publication called Coping with the Loss of a Loved One. Understand that feeling sad is ok, but if you find that these feelings don't improve and/or prevent you from functioning, talk to your doctor about a referral to a therapist to help you work through your grief.
Many patients express feeling pressured during the holidays because their mood is not consistent with others' expectations. It is important to talk with your children about how hard it is for you to feel joy right now, but it is ok for them to be happy and joyous and that you want them to be especially at this time of year. They are entitled to enjoy the holidays and they do not have to feel responsible for cheering you up or mirroring your sadness.
If the children have not been told about their mother/father's cancer please consult with an oncology social worker as a member of your spouse's treatment team about how to discuss cancer with children in an age - appropriate way. You can also get some ideas about this from Cancer Care or through the ACS booklet: "Helping Children When A Family Member Has Cancer."
Reassure the children that you love them and although you are feeling down and not into the holidays this year you are doing what you can to make it a good holiday for everyone. You may be feeling burnt out with your caretaking duties and it is difficult to feel like you have to take time off from the cancer to try and enjoy the holidays. Perhaps you need to replenish yourself physically, spiritually, and emotionally. Keep your expectations realistic. Let others help with buying gifts, wrapping, cooking, etc. Set priorities. Pace yourself and most importantly share your feelings with your family.
Get creative and put less emphasis on the amount spent on gifts as being a sign of how much you care for others. You have had enough on your plate, and coping with financial issues can be extraordinarily stressful. Here are some ideas:
All in all, remember this season is not about how much or how little you spend. Find other ideas in OncoLink's Holiday Survival Guide.
Having a sick child is a very difficult situation for you and your family. I would suggest that you continue with as many of the activities during the holidays as were normal for you in the past. However, let the child know it is ok with everyone if he/she is not up to an activity and to say when they need a break.
To make it easier for everyone, especially your child, talk with neighbors, relatives and friends to advise about what to expect so they are prepared for your child's illness and appearance. If the child is particularly tired or weak, he/she may need more assistance (perhaps even getting around by wheelchair), or have to take a rest in between holiday events - that is all ok, at least he is feeling a part of the holiday traditions. If all involved are prepared in advance and know what to expect, then I believe it will be easier on the family and the child.
This is a great time to put your internet search skills to the test. Utilize your favorite search engine (such as Google) to search for delivery services, cleaning agencies and support groups/services that are available. Utilize web based lists like Craigslist to find cleaning services, pet care suppliers etc in other cities.
There are some other cancer service organizations that provide homemaker grants and home delivered meals—but these are almost always based in local markets. Contact the American Cancer Society, the local Wellness Community branch, the Leukemia and Lymphoma Society or Cancer Care. These agencies can be great jumping off points to find local service agencies or even individuals who want to volunteer and "give back."
When your partner is dealing with the difficult diagnosis of cancer, he/she may not know what to say. It is not unusual for someone diagnosed with cancer to lack the energy needed for relationships or activities they had before cancer. Let him/her know you are there for them, but also give them space if that is what they need. He/she may need to try and get a handle on things before talking about it to someone else. Ask them how you can be the most helpful at this particular time. Being present in the moment and offering your assistance is one thing you can do. When he/she is ready to communicate their feelings, you will be there.
Think about some ways that you could honor their dedication to helping you through your treatment. Consider a gift card to the gas station to buy them a tank of gas, especially for those who helped to take you to appointments. Perhaps a Dunkin' Donuts or Starbucks gift card for the friend who always has to have her coffee. Recognizing their compassion and assistance is so important. You thank them everyday...but sometimes actions speak louder than words. A handwritten note will show your friends how truly grateful you are for their help!
Adjusting to the reality of your diagnosis and the changes to your life take both time and energy. It is ok to not feel up to celebrating, but you can try, as much as you can, to not let your fears of being a "downer" keep you from staying connected with the important people in your life. It is a confusing time for you emotionally too. You may be experiencing uncertainty about the future along with some positive feelings like gratitude for the support and love of family and friends. Keep your expectations realistic, delegate and let others help you, save your energy for the important stuff and share what you are feeling with others.
If you are expected to host the holiday meal but do not think you have the energy to handle the responsibility, give yourself a "time out". Try not to put too much pressure on yourself and pace yourself so that you can keep up with your traditional duties as best you can. People will understand if you ask them to bring a dish, "pot luck" style. Have someone else in the family host the holiday meal or suggest eating out at a restaurant this year. Your family and friends will understand. If you feel low emotionally or physically, you may want to postpone a family gathering or outing with friends. Give yourself permission not to join in the holiday festivities this year. There will be other opportunities. Be sure to remember to take good care of yourself!
This is really tough, but if they can't eat, they can't eat and there is no sugar coating it. It is best to address the issue. Ask him/her or their spouse if there is anything they could eat that you can have (mashed potatoes, other soft foods). Let him/her know you are concerned that they will feel left out - perhaps they are worried about "ruining" the day for others. Maybe take the focus off the meal - instead of a sit down dinner have a buffet. Have people graze all day - an "open house", so he/she won't feel out of place not eating. But most of all enjoy a day with family and friends and let him/her know that it wouldn't be Christmas without them.
Radiation and some chemotherapy medications can make your throat sore and impact your ability to swallow.
Some foods to avoid:
With those in mind, here are some tasty soft food ideas:
Technically, medical professionals (nurses, doctors, social workers etc) are not permitted to accept gifts from patients. But that doesn't mean you can't show your appreciation to the team that takes care of you! You can purchase lunch for the practice, bring in a snack, or send flowers! Write a personal note for the person who goes out of his or her way to make your treatment experience better. Those notes mean so much and really convey your gratitude and appreciation.
Consider something that would help her to feel good - a gift certificate for a pedicure or massage, a pretty tote bag she could use to put things in for treatment. Fill the tote bag with some fun reading, puzzle books, snacks, water bottle, cozy blanket, neck pillow, scented therapeutic wraps that can be warmed in the microwave, and music she would enjoy. You could also help her with holiday preparations - wrapping gifts, shopping, holiday cards. Another idea is for you to help her or to get a house cleaning/maid service or contact a catering company who can provide already prepared meals that can be frozen. See the OncoLink Holiday Gift Guide for more ideas.
This is a great place to tap into those friends that always say..."Is there anything I can do to help?"
Make your list...check it twice and DELEGATE. Give each friend an "assignment" and have them purchase 1 or 2 items on your list. Also, SHOP ONLINE! Many websites offer terrific deals you can't get in stores and will ship for free/low price. You can shop from the comfort of your couch. Finally, folks love gift cards and then THEY can do the shopping! You can purchase these online or at the local drug store (they often have gift card kiosks). You can get many different kinds of gift cards (restaurants, Barnes and Noble, Itunes, or even a Visa or Mastercard gift card).
It is fine for the patient to be around the kids. However, remember that kids can be germ spreaders - they are exposed to lots of germs at school, in the playground, etc. and that can put a person with a compromised immune system at risk. Make sure they (and all other guests!) wash their hands upon arrival and frequently. I always say the joy you get from the kids in your life is great medicine!
If it is a big gathering, suggest asking everyone to bring a dish - tell them to bring copies of the recipe for everyone and make folders for each person to take the recipes home in. Have the kids decorate the folders. Then it seems like a fun tradition and not her asking for help.
The day of, I think the best you can do is to be there and just do - don't make her ask for your help or even ask her for direction. You know what goes on every year, just jump in and do - have the kids help (if they can) - even something as small as setting the table or putting out the napkins & snacks. Plan to come early and stay late so you know it is all done when you leave and she can rest without worry.
Ask for what you really need, don't be embarrassed. It is ok to say "I have a million casseroles, but what I really want help with is shopping and cleaning!" Yes, many people are well intentioned but sometimes are clueless as to what would really benefit you and your family. By telling them what would help the most it becomes a win/win situation. They now know what they can do to help and you get what you really need.
You can imagine what it would be like if you were in the hospital during the holidays. Your loved one may be trying to be polite and not want to put anyone out or take away from your celebration. Even if she is insistent about being alone, the family can still be present on Christmas. First, talk with the nursing staff about what would be allowed. You can possibly decorate her hospital room, have cards and gifts for her to open on Christmas, phone calls and even a video by family and friends wishing her well would help her feel connected to others.
It is perfectly fine to have a drink or two at the holiday dinners. If a person has tumors in their liver (either liver cancer or another cancer that has spread to the liver), they should check with their doctor first. Have a toast to successful treatments and a holiday dinner with your family.
I think that is it not that things seem to happen more around the holidays, but that it is a more stressful time of year and therefore even harder to deal with such a difficult situation like a new cancer diagnosis. While it is a frustrating situation to be in, particularly with the added stress of holiday preparation, remember what is most important about the holidays. Focus on what is important to you-your faith, your family, loved ones - in addition to dealing with the new cancer diagnosis. Take care of yourself and let others help you with what you need. You may also find it helpful to talk to a social worker, especially at this difficult time with so much going on around you.
According to our lymphedema expert, Lora Packel MS, PT, massage can help relieve pain, help with relaxation and decrease anxiety and stress. However, when diagnosed with cancer, you need to be more careful when choosing your massage therapist. You should look for a therapist who has experience working with people with cancer. The therapist should have a state association certification, although not all states have a governing body. Finally, they should be aware of the precautions when working with a person who has cancer. Some of these precautions are:
It is ok to go to the mall if you feel up to the trip, but just be mindful of being in a public place. Make sure to bring along hand-sanitizer and use it especially after making contact with others, handling money, and before eating. Try not to touch your mouth and nose as this is a common way to spread the germs on your hands. Try to go during non-peak hours where the mall will be less crowded. Also, remember to go at a time of day when you are feeling good and have the most energy. Rest when you need to and pay attention to what your body is telling you... You may not be up for an entire day of shopping right now.
It is important to be thinking about this before you leave! It is possible to get a "vacation override" through your drug plan to get more than a one month supply of medication; but often your physician or physician's office will need to call your insurance company to request this over-ride. Be sure you communicate clearly with the doctor's office about 1) where you are traveling to, 2) the dates you will be gone, and 3) which drugs you will need a supply of while away. Sometimes, you may be asked by the insurance company to supply a copy of your itinerary, plane tickets or travel plans. It is best to start this process EARLY-at least 2 weeks before you leave for your trip. With clear communication, it is very easy to get this issues resolved so that you can enjoy your trip!
Make sure you travel with your doctor's phone number should you need medical attention while out of town. It's a good idea to have a written summary of your treatment to carry with should you need to go to an ER while out of town. Get forms to create your treatment records. Carry your medications in your carry-on bags so you don't risk losing them in checked luggage.
Do you wonder how you will make it through the holidays when it involves traveling from one house to the next, sleeping on pull out couches and staying up late when you are beat up from 6 months of cancer treatments? Well, start by practicing how to say No! People will certainly understand that you aren't up for going all over town. Can one family host a few others and you only need make one stop? Can you stay in a nearby hotel so you can get your needed rest and take a break when you need to? Or stay home and make it a more intimate family gathering with just the immediate family. Whatever you do, don't do things you know you aren't up for just because that is the tradition. Start a new tradition!
Only you know what your level of energy is and what activities are potentially too draining. Every family has longstanding traditions but maybe this year you can change things to meet your needs. Can others travel to you this year? Would your family understand if you did not do all the traveling? Is there one location that everyone can meet?