Are You A Caregiver To A Person In Chronic Pain? If So, Pls Read

Discussion in 'Fibromyalgia Main Forum' started by JLH, Mar 30, 2006.

  1. JLH

    JLH New Member

    These days, caregivers play a very important role in healthcare. Not only are you responsible for the day-to-day physical support of patients with severe chronic pain, you offer important emotional support, too. You're also a problem solver, advocate for your patient, and an active member of the overall healthcare team.

    Many people who find themselves in this role, however, are unprepared and not sure of what to do. Here is a few ideas on how you can be an effective and supportive caregiver:


    Have a discussion early on about what exactly the patient wants you to do. Are you expected to talk to the doctor for him/her? Will you be accompanying the patient to medical appointments, or just be available to talk things over later? If you are going to make medical decisions for the patient, you'll need to explore the legal requirements.

    Wherever possible, involve the patient in his or her own decisions. Chronic severe pain can make people feel like they have lost control of their lives. Having someone else make all the decisions only adds to that loss of control.

    Don't be afraid to speak to medical staff on behalf of the patient, if he or she wants you to. In many cases, it will be your job to ensure that quality care is given. If problems persist during a hospital stay, ask to speak to the hospital's Patient Advocate or Ombudsperson.

    Encourage the person in your care to talk about his or her feelings, but don't force the issue. Just let it be known that you are available when needed.


    No doubt about it, care giving can be very satisfying. It can also be very stressful, especially when someone you love is in constant pain. That's why it's very important that you take care of yourself too.

    Here are a few suggestions to help you survive this often difficult job:

    Don't expect perfection from yourself. It's okay to let some things go. For instance, the house does not have to be perfectly tidy all the time, and if the laundry doesn't get done today, it'll wait till tomorrow. In other words, don't sweat the small stuff!

    Don't dwell on your mistakes. Take them in stride and move on.

    It's not uncommon to have feelings of anger, fear, or guilt. If you do, try to talk about them with friends, loved ones, and/or other caregivers. Join a support group, or get professional counseling. The point is, don't keep your feelings bottled up inside you. That'll just create more stress.

    Be good to yourself. Take a break once in a while. Go for a walk. Get a massage. Make sure you take some time to do something for you. And don't be afraid to ask for or accept help from friends, relatives, and social workers.


    Watch for outward signs of pain, such as muscle tension, guarding of body parts, facial expressions, and changes in behavior or activity.

    Try to be a friend and companion to the person you are caring for. Watching TV together, going for walks (if possible), playing cards, etc., can help someone in chronic severe pain get more enjoyment out of life.

    (or other debilitating chronic pain??-jlh)

    Being a caregiver for someone who has pain from cancer (or other debilitating chronic pain?? - jlh) brings about special duties.

    For example:

    Watch that the person you care for is not trying to downplay his or her pain. People with cancer sometimes try to hide their pain, fearing that an increase in pain means the treatment is not working or the disease is getting worse, which is not always true.

    Make sure the person with cancer is taking all of his or her pain medication. Some might want to "save it for later," thinking that if they use it now, it won't be as effective later on, if the pain gets worse. This common misconception is generally not true.ยน

    (or other chronic pain??-jlh)

    Acting as a caregiver for an elderly person or a child with cancer brings up some special issues. In general, both groups are often under-medicated, perhaps because of problems communicating their needs. As a caregiver, you'll need to be extra watchful that their pain is being treated effectively.

    When caring for an older person, keep in mind that he or she might not be comfortable expressing a need for pain medication, or might not want to "bother the doctor." Some elderly people might have problems understanding a pain scale, might not be able to see the numbers on a scale, or might have a hearing problem that makes communication difficult. When medication is prescribed, make sure that the person has the physical ability to carry out the instructions (arthritis stiffness can be a problem). Make sure that pain medications won't interact poorly with drugs prescribed for other problems. Help them set up a medication schedule.

    When caring for a child, remember that children often don't understand what is going on in a medical setting. A child might not understand that something "bad," like a needle-stick, will help them feel better and so might choose pain for fear of another needle. A child might also think that pain is punishment for misbehaving.

    In young children, if they use a pain patch, put the patch on the upper back. This will lower the chances that the child will remove the patch and put it in their mouth. The most common adverse events in pediatric patients were fever, vomiting, and nausea.

    Caregivers of children need to watch for outward signs of pain, such as muscle tension, guarding of body parts, facial expressions, and changes in behavior. Remember, too, that children under the age of 8 or so won't understand how to use a pain scale to show how they feel. An alternative is the "FACES Scale," which lets children point to happy and sad faces to show their pain.

    Source: Janssen Pharmaceutica Products website

    1. Managing Cancer Pain. Consumer Version, Clinical Practice Guideline Number 9: Management of Cancer Pain. Rockville, MD: US Department of Health and Human Services, Agency for Health Care Policy and Research, 1994. AHCPR publication 94-0595.

  2. xstew4nal

    xstew4nal New Member

    What a wonderful post and right on target, as I am in the positon of wearing a nurses hat most of the time. Everything you said is exactly what should be done, bless you for taking the time to help others.
    My husband had cancer, our son CFIDS, so I am watching both of them especially my soul mate of 38 years. He was doing great for four years but the stress of his airline filing Chapter 11 caused his immune system to crash and the energy level is 0!!
    One thing I have always done when my husband had his many operations, not related to cancer, was spend the time sleeping at the hospital in his room. Our daughter is a nurse and there aren't enough to go around to check on the patient all the time.
    Thank you for you sound advice, caring for people you haven't met. You are an angel.
    To good health!
    Suzanne (Sam)
  3. JLH

    JLH New Member

    I know there are a lot of spouses who care for their "better halves" who have fms/cfs who visit our board, just none of them have read this, I guess! I thought it would help them, though.

    I helped my mother care for my father who was a chronic pain patient for 18 months before he passed away. He was on kidney dialysis due to end stage renal failure as a result of diabetes.

    His limbs were also dying and as a result had quite a few amputations on on leg until the entire leg was finally amputated. He suffered in soooooo much pain. My heart would ache for him. He did not want to complain, yet I know he was in so much pain, and that I should be able to do more for him. Yet, I was sick at the same time, but did not want him to remember that I was sick.

    Also during this time, the stress of taking care of him, gave my mother a heart attack. Then I had to help care for both of them.

    Luckily, my mother is still living, although only has 40% of her heart function left.

    Being a caregiver to a person in chronic pain is a very important position.

    Much love,

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