Checking with community agencies or non-profits such as the Elena Tresh Foundation. Some have volunteers who can help with a number of things such as transportation and advocacy with entitlement and benefit programs. Your hospital or community social worker is a great source for local referrals to such programs.
HELP FOR CareGIVERS
Cancer is a family affair; it affects the entire family and anyone else who is emotionally involved with the person with cancer. If you are caring for someone with cancer, you are probably also experiencing pain, although of a different sort. Just as cancer pain can be managed, so can the pain and stress of being a caregiver. It may be helpful for you to become aware of some of the issues you face in your day-to-day battle with your loved one's cancer pain, and ways to cope.
What is your role as caregiver?
As our health care system changes more and more to a system of outpatient care, more of the burden of caring for patients is placed on family members and friends. As someone caring for a person in pain, you may be asked to:
Administer medication, including deciding what to give, when to give it, keep records, and encourage and remind the patient about taking medications.
Provide a number of non-drug interventions, such as massage, applying ointments and lotions, cold and heat, positioning and helping the patient's mobility, providing distraction and emotional support.
To administer medication, getting support and assistance in the following ways may help:
Understand cancer pain and pain management, to feel less overwhelmed and helpless. If you haven't done so already, it may help to read the previous sections.
Educate yourself in the pain control plan. Don't be afraid to ask the doctor or nurse for detailed information on the pain management plan, and write things down.
Make sure that you're taking advantage of all the resources available to you. There are lots of foundations and support services available to the families of the terminally ill. The Elena Tresh Foundation, for example, was created for this specific cause.
* Know which medicines are to be given around the clock, and which are to be given as needed (written on the prescription as "prn").
* Give medication at regular times to keep enough medicine in the blood stream to keep the pain away.
* Give medication before pain builds up. Pain control is harder to achieve if it is allowed to build to a severe level.
* Give pills during the night, or get on a pain control plan that does not require nighttime doses. Too much time between pills means that the amount of medicine keeps dropping and the level of pain increases.
* Do not stop the pain medicine suddenly. This will be a shock to the body and withdrawal symptoms can occur. Discontinuing any pain medication should be discussed with the doctor and done gradually.
Questions To Ask:
* How do I administer the medication?
* Can the pain medicines in pill form be crushed? Some should not be.
* What do I do if the medicine wears off and the pain returns, but it is too early for the next pill?
* What do I do if the pain is not gone even though the pills are being taken as prescribed and as early as allowed? Can more medicine be taken, or should the doctor be called?
* What happens if pain wakes him or her in the middle of the night?
* What to do if a dose is skipped by accident?
* What to do for breakthrough pain?
* What side effects should I watch for and when should I call for professional help?
* What should be done for side effects?
* Who can help? It may be possible for you to have a nurse come to your home and assist with some of these tasks, and teach you to manage the pain control plan. Insurance will sometimes pay for an R.N. to come to your home and help monitor the situation. Check with your doctor, social worker and your insurance company to see if this is available to you.
* Most importantly, whom do you call when you have a concern, during and after office hours? It will help if you feel like all the decisions do not have to be made by you, and if you are confident you have a place to go with your questions.
* Set an alarm to remind you when medications are due.
* Use a med tray. These are plastic boxes with squares for each day of the week and slots for medicine times. Many people fill the box for the whole week. You can get these at a local pharmacy. You can also use and egg carton and mark each slot with the name of the day of the week and the time the medication is to be given.
* Call the pharmacy before you try to fill the prescription. Some drug stores do not carry all pain medicines.
* Use the same pharmacy. The pharmacists will understand what the medication plan is, how it is working and have suggestions on how to handle side effects. They will also know what pain medicines to keep on hand and can answer many of your questions about the medicines.
* Call the doctor for a new prescription before the last pain medicine is given. Be sure you have at least a 3-day supply of pain medicine at all times. If it is the end of the week, you should have at least a 5-day supply. If you are planning to be out of town, be certain to have a sufficient supply until your planned return.
To provide non-drug interventions, discuss with the health care team what may help to soothe the patient.
Nurses can provide a skin care plan, information on positioning and the use of heat and cold.
* Using heat. Heat relaxes the muscles and gives a sense of comfort. Do not set heating pads on high because they can burn the skin. Do not place them over or near areas where radiation marks are on the skin even when treatments are over. Warm showers, baths, hot water bottles and warm washcloths can be soothing.
* Using cool cloths and ice. Cooling the skin and muscles can soothe pain, especially any pain that comes from inflammation or swelling. For example, many people like a cool washcloth on their brow when they have a headache.
Physical therapists can help provide information on appropriate exercises, massage or equipment that can help patients move more easily and safely.
* Massage sore spots, such as back, neck and shoulders. Use smooth, long strokes for about 3 minutes. Use a lubricant that has been warmed; place a bottle of lotion in a sink of hot water for 10 minutes.
Social workers can assist you with recommendations on providing support and distractions, and other resources that may help you in the community. Again, insurance at times pays for these services in your home. It never hurts to ask, or persist in trying to get help at home.
What else can you do to help?
When someone close to you has cancer and is in pain, you will undoubtedly have many feelings about the situation. For most people, seeing someone they care about in pain and discomfort can be almost unbearable. Being aware of the feelings you are having, and ways you might cope with the situation will help you to help your loved one.
You may be feeling helpless or out of control. Most people feel a sense of helplessness around someone who is in pain, because what you want to do most of all is make the cancer go away. Because providing a cure is not something you can do, you may feel helpless. It is important to remember what you can do, which is to provide care, meaning physical and emotional comfort. Caregivers must realize the enormous difference this makes to someone who is ill. Particularly for people in pain, there are things that can be done. Some helpful hints:
* Educate yourself on pain management
* Take part in the pain management program by learning what is needed, providing encouragement and reminders.
* Help keep daily information about the kind of pain he or she is experiencing.
* Check on the level of pain being experienced by using a 10-point rating scale.
* Ask questions of the doctor; seek consultation with a pain specialist if you are not satisfied with the doctor's recommendations.
* Provide the person in pain with distractions that help get their mind off the pain.
* Maintain open communication about pain any related concerns.
You may be having difficulty listening to concerns about their pain. Increases in someone's pain may to you signal advancement in disease. This can trigger all sorts of fears and fantasies about what may be happening. Hearing complaints about pain may make you feel annoyed or increase your helpless feelings. Consequently, it may be easier to deny the situation, or minimize it. If these feelings are occurring, it is possible that the person with pain is sensing this, and not talking about the pain, or minimizing it. Additionally, as pain is not a tangible thing you can see and touch, it is sometimes hard for caregivers to comprehend. All of these feelings are normal and understandable. Here are some suggestions of things that might help:
Remember that pain does not always mean things are getting worse, or the cancer is progressing. Many people think that medications such as morphine are only given to people who are dying. Morphine is not reserved for the dying. It is a very effective medicine for many types of cancer pain.
Pain can only be controlled if the person in pain is able to talk about it to you and the doctor. You can help by giving the him or her permission to talk about the pain, asking often about pain and encouraging them that there are solutions to it. You can also share your feelings of fear and of helplessness so the person in pain understands better why it is sometimes hard to talk about.
Good communication is essential, but can often be difficult when emotions are involved. If you and the person in pain are having trouble communicating about issues, ask for help from a social worker or other professional.
You may be afraid the person with cancer will become addicted to the pain medications. People who take narcotics for pain very rarely become addicted. People who are "addicts" take drugs for a "high" or an altered state of mind. People who take narcotics for cancer pain take them to get relief from physical pain. People who are not addicts before they take narcotics for cancer pain do not become addicts later. Sometimes even doctors have this misconception. A specialist in pain management can help you better understand. Both your understanding and the person in pain's understanding of this issue will influence the pain control plan.
You may feel overwhelmed with the responsibility of providing care to someone in pain.This is a normal feeling. Although you are not a trained health care professional, you are probably being asked to do things that health care workers do. Getting trained on the pain management plan (see previous section) and support from the home care or hospice, and the health care team will help you feel less overwhelmed. Being overwhelmed may also lead to feelings about wanting to escape the situation, or other feelings such as anger and sadness. Having people who help take care of you during this time is essential for you to maintain your perspective and strength. (See next section)
How can you help yourself?
Managing the care of a person who is ill is a full time job. It is probably a good bet that you also have other roles to fill, such as parent, employee, or spouse. Additionally, it is very important that you take care of yourself. You can help manage your own stress by:
Finding additional help to care for the person in pain. This can mean home care through an agency, friends/family to help with chores, shopping, someone to sit with your loved one while you work, or have planned time away to refresh yourself. Don't be afraid to ask your friends, church, and local agencies for help. Giving them specific tasks will help them feel less helpless. You will find that working as a part of a team will make the burdens easier on yourself.
Attending a support group for caregivers, getting counseling for yourself, finding your sense of spirituality or sharing how you are feeling with friends and other family members. Reach out and find a friend who is there just to support you. Together, create a plan to manage your stress. Talk to other caregivers. They will understand how you feel, and share how they are coping with the same situation. Click here for other resources.
Planning time away, where you do something pleasurable for yourself, even if it is just a walk around the block. Schedule it into the pain management plan, as a dose of medication for yourself.
Using the health care team for support. See or speak with the doctor often, bring a list of questions and expect for them to be answered. Ask who else on the health care team is available for you, an oncology nurse, pharmacist, social worker, physical and occupational therapist, hospital clergy, or psychologist. Click here for information on the health care team.
Taking advantage of the Family and Medical Leave Act if you are employed. This act requires employers with 50 or more employees to provide up to 12 weeks of unpaid, job protected leave for family members who need time off in order to care for a seriously ill family member. Employers are required to continue benefits during the leave period and may allow an intermittent or reduced work schedule. The act also permits employers to provide leave provisions that are more generous than the act requires. Your human resources division should be able to provide you with more information.
Asking if your insurance company can assign you a case manager. Many insurance companies will assign someone to help manage insurance concerns for someone with a serious illness. This person can be a resource for what benefits are covered, whether arrangements can be made for out of plan benefits for medically necessary care, what home care may be available, or trouble shooting when insurance problems arise. The quality and helpfulness of case managers will vary across insurance.
Obtaining legal counsel to help with financial concerns and financial planning.
Understanding your rights. Caregivers have a "Bill of Rights" too!