MANAGING CARE( continued)
Caring from a Distance
Susan C. Imke, FNP, GNP-C
Relatives who live far from loved ones coping with chronic neurological illness are often at a loss as to how to be helpful in ways that are both meaningful and practical. It can be tempting for family members at a distance to offer advice that may not be welcome or easily implemented.
Part of my work is facilitating family conferences for the purpose of making elder care decisions for people with PSP and related neurodegenerative disorders. Sometimes, the son or daughter who lives furthest away is the one with the strongest opinion regarding what Mom or Dad needs. This can result in friction with weary or exhausted front-line caregivers.
While relatives not struggling with issues of daily care do have a valuable perspective to share, this objective wisdom must be expressed with great tact and without criticism for family members who live close by and carry the greater responsibility.
All family members need to avoid making rash promises to the person with chronic health problems. Rather than saying,“ Of course we’ d never put you in a nursing home,” express your empathy for a parent’ s preference to live at home, and your willingness to explore alternatives as care needs change.
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So, what can long-distance relatives do to be helpful, short of moving back home? Perhaps some of the following suggestions from caregivers in support groups around the U. S. will meet needs for your family:
• Agree on a designated day and time to call each week. Do not assume that“ no news is good news.” Many older parents keep their own counsel even during tough times, not wanting to bother children who are busy with their own lives. Make the call faithfully. A short call more frequently may be better than an extended telephone visit. You may need to do most of the talking. Share your own family’ s activities since you last spoke.
• Try not to over-quiz the elders about health issues; this may put them on the defensive. If you are the son, speak for yourself. Your parents may dearly love their daughter-in-law but are likely to feel grateful to hear from you personally.
• Inquire tactfully whether financial help is needed. Many parents won’ t ask for help of a monetary nature, even if living on a fixed income and the rising cost of medication can mean eliminating basic necessities.
• If a regular subsidy is unacceptable, offer something specific.
• Picking up the tab for pads and diapers is useful for the person with incontinence. Paying for a month’ s supply of medication that is not covered by insurance can be a great relief.
• Send a creative caregiver package once a month. This might be a flower arrangement, restaurant gift certificate, or a spa basket filled with elegant bath goodies. Even a simple card with an encouraging hand-written message can mean a lot in the midst of a trying day!
• Budget funds for regular visits to see your family. Consider getting your own ride from the airport. The primary caregiver should not have to take care of you, too! If crowded quarters put a strain on everyone, reserve a nearby hotel room. You are not there to be entertained but to provide a listening ear and a helping hand.