Journey in Caregiving
Helpful tips for family caregivers
December 2015/January 2016
Some things are within our control. Some are not. Managing COPD and managing health records are things family caregivers can do to make life easier. And for those things we can’t control, get a massage! It will at least reduce the stress.
Red flags for COPD
Chronic obstructive pulmonary disease (COPD) is a lung condition that gets steadily worse over time. It frequently involves “flares,” or “exacerbations,” periods when breathing suddenly becomes more difficult. It can be very frightening and often results in a dash to the emergency room.
Our previous article identified the many things you can do in daily life to prevent flare-ups. But even with your best efforts, your loved one is still at risk of an exacerbation.
It’s important to know the early signs of a flare and to have an action plan. If you know the signs and what to do, chances are good for managing the condition at home. Skip the stress and cost of trips to the emergency room!
Develop a personalized action plan with your relative’s health care provider. They may even have classes or nurse educators to help. Ask what you should do if your family member suddenly shows symptoms such as these:
- Feeling more breathless than usual
- Extreme fatigue
- More coughing, with thicker phlegm or mucus
- Needing to use a quick-relief “rescue” inhaler or nebulizer more often
- Weight gain of three pounds or more in a day’s time. This may be due to fluid build-up. Check for increased swelling around the ankles.
- Inability to sleep well because of breathing or coughing difficulties
- Lack of appetite
Plan with the doctor what steps to take to address these symptoms. Among other things, the doctor may suggest
- special medications
- special breathing exercises
- increased oxygen
Have these on hand and ready for use at the first sign of a flare. Call the doctor immediately if these treatments don’t help and the condition seems to be getting worse.Return to top
Taking charge of medical records
You may be the only continuous thread among your family member’s various health care settings and providers. Having all the medical records handy makes you a powerful resource on the health care team.
Access the records. Every patient has the right to receive copies of all medical information. You can often get a visit or discharge summary before you leave the office or hospital. Patients may be charged a copying and/or mailing fee, but cannot be charged to search for and retrieve their records. Patients have the right to receive their records within 30 days of making the request. Your loved one may need to sign a HIPAA release so that you be given copies also.
Ask the ordering physician to instruct the lab and imaging providers to send you copies of all results. (You can also ask that the information be sent to other specialists on your relative’s care team.)
Review the records. More than 400,000 deaths occur each year because of medical errors. Patients have a right to correct mistakes in their records. Review your relative’s record. Ask for changes as needed. Also be aware of what tests have recently been done. You may be able to spare your loved one from duplicate procedures.
Organize the records. Consider getting a pocket file with compartments. Or a three-ring binder for
- primary care and specialists’ progress notes
- hospital discharge summaries
- reports of specialty consultations
- lab work (for example, blood and urine tests, biopsy or culture reports)
- images from major diagnostic tests, such as CAT scans and MRIs. These will come on a CD. You can also request the specialist’s report or interpretation of the tests.
- medication lists
Apps are available that can organize electronic data. Check out the GetMyHealthData.com campaign for suggestions.Return to top
The benefits of massage
Although massage may feel like pure luxury, it also can be good treatment for what ails you or what ails your loved one.
Today it is generally accepted that massage provides relief for pain, muscle tension, and stress. (Doesn’t that sound like something every family caregiver needs?!) Newer research is probing the benefits of massage for specific health conditions. The results are considered “preliminary.” But there is evidence that massage can play a positive role in the management of arthritis, blood pressure, cancer, and depression.
You might consider getting a massage on your next respite break. You might also consider its value for your loved one. Note that massage is NOT advised for individuals with
- bone fractures or bones that are brittle (from osteoporosis)
- open wounds (from cuts, burns, skin conditions)
- a tendency to bruise or bleed
- blood clots in deep veins
Also, care must be taken to avoid massaging tissue that is sensitive because of a tumor or cancer treatment. Even if none of these conditions is present, check with the primary care provider before scheduling a massage.
A few tips for finding the right massage provider. Ask about
- training and licensure: Massage is typically done by a licensed massage therapist. Licensing ensures he or she has had thorough training. Some physical therapists and occupational therapists also do massage.
- years of experience: How many years have they been practicing? Do they work on many people with your/your loved one’s condition?
- daily schedule: You want a therapist who is not worn out! Anyone doing more than six hours of massage a day can’t be at his or her best.