For Caregivers

The caregiver has one of the hardest jobs in the care of a cancer patient.  The difficulty occurs because of the importance of taking care of two people – the patient and you.  It is important to keep both people in mind as you prepare yourself for the lengthy time from diagnosis through treatment.  You will not be able to give your best if you forget or neglect your own needs. This will be a time of great stress and uncertainty.  We will give you ideas and suggestions on how you can best help the patient and yourself.  We will first talk about caring for yourself and an adult patient.  We will then provide tips if the patient is a young child.

Taking Care of Yourself

  • Don’t feel bad about accepting offers of help from others.
  • Don’t be afraid to ask for help from others.
  • Be specific about what you need.
  • Don’t feel guilty about setting aside a little time for yourself.
  • If you work, ask your company’s human resources department about family-leave policies.

Sarcoma is a scary diagnosis for everyone affected — the patient, family members and close friends. A somewhat chaotic future is in store with numerous doctor appointments, possible hospitalizations, and disruptions to your daily life. There will be many people interested in knowing what is going on and how they can help.  It can be exhausting to tell the story, give updates multiple times on a daily basis, even to very close friends and relatives.

Caring Bridge allows you to post information to keep others informed. You can control both the content and who has access to the information. This can be a tremendous help in reducing the number of times you have to give the latest information about doctor appointments, what is planned, and any other information you want to share.

You will also be facing tremendous challenges managing your own time.  If you have children – how will they get to school when you can’t take them, how will they get home, eat meals, etc.  What about work; How much time can I take off? You may find yourself running from home, to school, to work, to a doctor’s appointment, back to  work, an errand or two, and back home again.

You should start to think how you can simply your life. Is there something you do on a daily basis that could be done twice a week?  If someone offers to help, what would make my life a little easier, less stressful?  It may be as simple as picking up your newspaper, stop by and feed the cat, water the plants, or be a backup person if I can’t pick up the kids. Little things can make a big difference. People might ask if they can prepare a dinner and drop it off.  Don’t be afraid to tell them yes and to give suggestions of what to prepare. Cancer patients will often lose interest in some foods and enjoy others.

You should also work hard and not feel guilty about carrying on with some activities that you enjoy.  If you like to walk or run, keep it up.  You may not be able to do it as often or as long as before, but it is important to preserve a little of the “me” time so you can better take care of the patient.  Try to keep up contact with your closest friends by phone, a walk or over a cup of coffee.

Like the patient you will need, at times, an outlet to express frustrations and sadness.  Find someone who can help you through this difficult time.  It may be a friend, a social worker at the hospital, some other health care professional, or a religious leader.

Finally, as much as possible get the rest you need.  You may have to record that late night TV show you enjoy so much or shorten that visit to the hospital.  If you are well rested, you will be happier, healthier and be in a better position to provide the love and care the patient needs.

Taking Care of the Patient

  • Try to support the patient even when you two don’t agree.
  • Remember that every patient is different, as is every caregiver.
  • Help keep and organize a notebook of test results, drugs, treatments, appointments, and questions to ask at the next appointment.

A caregiver has a tremendously difficult job.  Some patients may complain about everything and others will keep all their feelings to them self.  You will want to be there every step of the way and provide support in any way you can.  If the patient is sad, depressed or frustrated, you will need to be a good listener. You will also need to be as honest as you can about your thoughts and needs but you will not want to further upset or depress the patient. It is not uncommon to find the patient providing support to the caregiver. This is a very touch balancing act.

Over time there will be lots of paper (test results, medical reports, etc) and appointments to track.  Many find putting together a notebook can be a tremendous help. A social worker may be able to give you some good ideas. The Amschwand Sarcoma Cancer Foundation and Livestrong both have notebooks available to help you organize information and documents.

Part of keeping organized is to be prepared at each doctor’s appointment. Before the appointment have a list of questions that have arisen since the previous appointment.

  1. Changes in symptoms
  2. Questions about medications
  3. Changes in physical or mental well being
  4. Anything else for which you have a question or concern.  No question is too small or “stupid”.  If there is anything that you don’t understand or have any concern, the physician should gladly help.

Also, be prepared to take notes about future appointments, medications, medication schedules, foods to avoid, rules for contact with other people (maybe no visitors if they have a cold).  It can be very hard to remember everything that is said at a doctor’s appointment so writing things down will be a big help and reduce stress.

Although the caregiver can provide much support, the patient may want to connect with others who might have similar experiences.  The Sarcoma Alliance has a very active discussion board.  You can post information about diagnosis and treatment and you will get lots of good information in return. Our Chatroom is open 24 hours each day and on Wednesday and Sunday evenings the chat is moderated by a Sarcoma Alliance Board member.  Finally, our Peer to Peer program matches individuals one on one for more personal support.

What if the patient is a young child

One of the most difficult experiences anyone can face is a serious illness of a young child. A sarcoma diagnosis is particularly difficult because of the many questions about treatment and the ongoing uncertainty how long the treatment process will take.  Many ideas in the section for adult patients apply with one significant difference.

For any child under 18 years old, the parent or guardian caregiver has to serve as the primary advocate for care decisions including all diagnosis and treatment procedures.  The age and maturity of the patient will determine the extent of the patient in the decision making process.  This will vary from one patient to another and will often vary over time as more treatment decisions are discussed and made.  There is no one right answer or approach but it is important that the patient as appropriate understand what is going on and the reasons for decisions.

Thoughts on supporting an adult child

By Kathy Chambliss

“Parents have to make all the decisions for young children, but it’s different when your child is grown up. Like other adults, he may feel a need to control what he can in a situation that takes away so much autonomy.”

Once cancer has metastasized, she thinks doctors should talk to the patient about quality of life, side effects from further treatment, and what options are available if treatment fails.

She had to recognize the suffering of other family members and his many friends, “who were just like family. Everyone is working in their own way, and other caregivers are hurting just as much as you are.”

Every day for several years, she lit a candle in her kitchen for Bob, and still does it at least once a month. A ritual like this can help those who are grieving, she said.

 Resources

Sarcoma Alliance

Sarcoma Alliance Discussion Board – http://sarcomaalliance.org/discussion-board/

Sarcoma Alliance Chatroom – http://sarcomaalliance.org/chatroom/

Sarcoma Alliance Peer to Peer Program – http://sarcomaalliance.org/peer-to-peer/

Ways to make support easier

Caring Bridge – http://www.caringbridge.org/

Food Tidings – a way to manage food deliveries for someone;  http://www.foodtidings.com/

Lots of Helping Hands – a way to mangage visits and chores; http://www.lotsahelpinghands.com/

Legal Considerations

Family Leave; Federal – http://www.dol.gov/dol/topic/benefits-leave/fmla.htm

Family Leave, California – http://www.paidfamilyleave.org/

Notebook to organize care

Amschwand Sarcoma Cancer Foundation – http://www.sarcomacancer.org/index.php?page=sarcoma-survivor-starter-notebook

Livestong – http://www.livestrong.org/Get-Help/Learn-About-Cancer/LIVESTRONG-Guidebook

Do you have excess unused medical supplies?

Afya Foundation – The Afya Foundation is a public health non-profit that recovers surplus medical supplies and equipment for a variety of sources to promote ongoing health initiatives in the developing world.  They have recently launched an initiative to involve childhood cancer patients called Kids Help Us Help Kids.  This program is a way for children who are sick to be able to give back to others in need.   As these children progress through their treatment and recover, they want to give them this opportunity.  Kids can give their extra or no linger needed supplies to children receiving care abroad.  The sense of empowerment and benefits that will come from this experience of giving are priceless.  By working together, everyone can make a significant difference in reducing unnecessary waste locally while building access to health abroad.  Donations can be sent to (indicate on the outside of the box that it is for Kids Help Us Help Kids Program):
140 Saw Mill River Road
Yonkers, NY  10710
http://afyafoundation.org/