Most people have established families and careers that preclude moving back to the hometown or current location of ailing relatives to provide daily care. So what can long-distance relatives do to be helpful, short of moving back home? Let the person with Parkinson’s and the primary caregiver know you are still there for them. Here are some ideas to support both the person with Parkinson’s and the at-home caregiver.
What to Do
Learn about Parkinson’s.
You will be better able to support the person with Parkinson’s and the primary caregiver if you have at least a basic understanding of the disease. To start, explore Parkinson.org for information on diagnosis, symptoms, treatment, living well and much more, and order or download your free copy of the Parkinson’s Foundation publication What You and Your Family Should Know.
Call every week.
Set a designated day and time, and make the call faithfully. Don’t assume that “no news is good news.” Even during extremely tough times, many people do not want to bother their adult children or other relatives who are “busy with their own lives.” Pay for the call. (It’s amazing how many seniors shy away from placing any phone call that is long distance due to real or imagined monetary concerns.) Consider using FaceTime, Skype or another video call service so you can see each other on the call.
Find out whether financial help is needed.
Inquire tactfully but clearly. Many people won’t ask for help of a monetary nature, even if the limitations of a fixed income and medication costs mean doing without vital supplies. If a regular subsidy is unacceptable, offer something specific. When health insurance does not cover medication costs, offering to pay for a month’s supply can be a great relief. For the incontinent patient, someone picking up the tab for incontinence pads and products is useful. Offering to help with household utility bills, transportation costs or housecleaning or yard services will also be appreciated.
Send a surprise caregiver package once a month.
This might be a bouquet of flowers, a restaurant gift certificate or a pampering basket filled with elegant bath supplies. Be creative. Even a card with an encouraging hand-written message can mean a lot to the local caregiver in the middle of a trying day.
Visit the person with Parkinson’s.
Budget funds for regular trips to check on your family. Don’t add to the primary caregiver’s stress level by expecting him or her to take care of you, too! If crowded quarters will be a strain, reserve a nearby hotel room. You are not there to be entertained, but to provide a listening ear and a helping hand. Try to schedule your visit when your loved one has an appointment with the neurologist, so you can be there for the appointment. The doctor will benefit from hearing your observations, and you will learn about your family’s communication style and be able to reinforce the doctor’s instructions later.
Ask about the health of the caregiver. Is your mom’s mammogram overdue? Does your dad neglect his own medical check-up because he’s preoccupied with caregiving? Remind the caregiver to look after his or her own health. Offer to take over caregiving responsibilities during one of your visits so they can schedule any necessary appointments.
Provide respite for the primary caregiver.
If filling in personally is not possible, offer to pay for a respite stay in an extended care facility. Or, if your loved one is able to travel, invite them to visit you. While you enjoy your visit, the primary caregiver gets a welcome break from their usual caregiving responsibilities.
Finally, if and when the time comes, exercise your right as the out-of-towner with less caregiving burden to affirm the difficult decision to place the loved one with PD in a residential care facility. Be respectful of the fact that you are not the person providing day-to-day care, and therefore may not fully recognize how caregiving responsibilities have grown. It is a mistake to allow worries about cash flow, sibling rivalry or dwindling inheritances get in the way of doing what’s best for the people whose lives are most affected.
What Not to Do
It might feel like you need permission to help, like the primary caregiver cannot or will not delegate responsibilities. This can be frustrating and emotional. Use the strategies above to support from afar, and avoid the common mistakes below.
Friends and family members who have infrequent contact with the person with Parkinson’s often underestimate the severity of day-to-day symptoms as well as the level of caregiver burden. For example, you might not know that providing physical care to someone with advanced PD, such as repositioning or help with bathing, can be exhausting and even cause injury to the caregiver. It is also important to recognize that thinking and memory changes often prove difficult to handle and may be even more taxing than physical changes the person with Parkinson’s is experiencing.
Perhaps to assuage feelings of guilt at not being available to help meet everyday needs, some long distance family members attempt to make up in advice what they can’t offer in hands-on care. While relatives not struggling with issues of everyday care often do have a valuable ability to “see the forest instead of the trees,” this objective wisdom must be expressed with great care and without criticism for family members who live close by and carry the greater responsibility of caregiving.
While it may be well-intentioned, do not make rash promises to the person with PD that may be impossible to keep. Rather than saying, “Oh Dad, of course we’d never put you in a nursing home,” it is better to express your empathy for your loved one’s preference to live at home and affirm your willingness to discuss alternatives if the need arises.