Guide to Long-distance Family Caregiving

Jim Distasio
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Try these worry-free caregiving strategies if your family members live far away.

<p>On a trip from suburban Detroit to visit her 90-year-old mother, Ernestine Stewart sensed something wasn&rsquo;t right. Her widowed mother, Louise Purham, had always&nbsp;maintained a strict regimen of mopping and scrubbing to keep her home in thesmall town of Covington, Tenn., spotless. But this time the home was unkempt.</p> <p>Stewart&rsquo;s concern turned to real worry when a young man came to the door at 3a.m. that morning asking for money. Stewart spoke with the man and began torealize he may have been there before to extort money from her mother. She grew&nbsp;concerned that Purham could no longer live on her own, so far from family.&nbsp;Purham said she would prefer to stay in her home if possible. So&nbsp;Stewart enlisted the help of 10 siblings to draw up a long-term, longdistance caregiving plan that was as complex as it was compassionate.</p> <p>&ldquo;My mother said, &lsquo;Surely 11 children can figure out what to do with one mother,&rsquo;&rdquo;&nbsp;Stewart remembers.</p> <p>Since all of the adult children lived at least 50 miles away&mdash;and some much farther&mdash;they divided the caregiving tasks based on skill set and when they would beable to visit. Throughout the five years prior to their mother&rsquo;s passing, the siblings&nbsp;booked airplane tickets to visit, made long-distance phone calls to coordinate her&nbsp;care, cooked her meals and drove her to doctor&rsquo;s appointments. The daughters&nbsp;took turns living in Purham&rsquo;s home for weeks or months at a time, as their work&nbsp;situations permitted. The sons promised to handle their mother&rsquo;s finances and&nbsp;assisted with home improvements, including making the house more accessible as&nbsp;Purham became wheelchair-bound.</p> <p>&ldquo;We did it cheerfully,&rdquo; Stewart says. &ldquo;My mother used to say, &lsquo;I just want to cooperate with whomever comes because I appreciate it so much.&rsquo;&rdquo;</p> <p>LONG-DISTANCE CAREGIVING IN THE UNITED STATES</p> <p>Stewart&rsquo;s situation is not uncommon. There may be as many as 7 million adults taking care of aging parents over long distances in the United States today, according to the National Institute on Aging. While the vast majority of family caregivers&nbsp;live within 20 minutes of the care recipient (according to a 2009 survey from the&nbsp;National Alliance for Caregiving and AARP), increasing numbers of adult children&nbsp;and family members care for a senior in a different city and state.</p> <p>These are often uncharted waters for many adult caregivers who juggle theirown families, careers and personal obligations. Stress can run high&mdash;but help&nbsp;is available. The key is to match the right assistance to your unique caregiving&nbsp;situation. Use the following strategies to create a long-distance caregiving plan&nbsp;tailored to your family&rsquo;s needs.</p> <p>KNOW WHEN AND HOW TO STEP IN</p> <p>The first step is always to talk to your parent about her living situation and see how&nbsp;she is feeling. But when you live far away, phone calls and emails don&rsquo;t always paint&nbsp;an accurate picture of an aging parent&rsquo;s living situation, says Miriam Scholl, a licensed&nbsp;master social worker and eldercare manager with Westchester Elder Care Consultants&nbsp;LLC, in Westchester, N.Y.</p> <p>In-person visits tell a truer tale, so plan regular trips and thoroughly assess the situation,&nbsp;making note of how well your parent handles his daily routine. Time your visit for&nbsp;when you can accompany your parent to the doctor if he is comfortable having you in&nbsp;the room to listen in. Make sure he&rsquo;s interacting with the physician so that important&nbsp;information is conveyed directly to him.</p> <p>UNDERSTAND YOUR UNIQUE SITUATION</p> <p>Your family caregiver experience greatly depends on the mental and physical health&nbsp;of the person who needs care, as well as her personal finances and living situation.</p> <p>AMONG THE KEY AREAS TO ASSESS ARE:</p> <p>&bull;&nbsp;Finances and how they will be managed, including how much money a parent&nbsp;has set aside or has available through&nbsp;long-term care insurance&nbsp;or Medicare</p> <p>&bull; Health care needs and who will make decisions if the loved one&nbsp;becomes unable to do so</p> <p>&bull; Housing options, which can range from occasional assistance to full-time in-home&nbsp;care to&nbsp;senior living communities&nbsp;(more on this on page 6)&nbsp;There has to be a leader,&rdquo; Sheik says. &ldquo;If you get too many voices involved, it&nbsp;makes the process more complicated.&rdquo;</p> <p>Every situation is different, but there are a few common levels of needed care, says&nbsp;Sherwin Sheik, founder and CEO of CareLinx, an online resource that matches families with professional in-home caregivers. Some loved ones may only need assistance&nbsp;getting to and from appointments or the grocery store, while others will need help&nbsp;with daily tasks such as grooming, meal preparation and remembering to take medication. Your family member may only require a caregiver who drops in for an hour or&nbsp;two every day. Then there are those who require more intensive care due to chronic&nbsp;conditions, disabilities or disease, which can necessitate 24-hour, live-in care either in&nbsp;the home or in an assisted living facility.</p> <p>Many of the most important decisions a family makes regarding long-distance care&nbsp;will be driven by what is economically feasible. A 2007 study from Evercare and the&nbsp;National Alliance for Caregiving showed long-distance caregivers had the highest overall annual expenses, about $8,728, compared to the expenses of those who lived nearby, approximately $4,570. For families that choose in-home care, Sheik estimates at&nbsp;least $40,000 per year in care expenses through a traditional full-service agency, with&nbsp;the costs rising depending on a loved one&rsquo;s mental and physical condition. Families&nbsp;that choose to hire a caregiver privately can save money, but must educate themselves&nbsp;on the caregiver&rsquo;s background and ability to comply with caregiver laws, Sheik says.</p> <p>PICK A LEADER</p> <p>Families with multiple adult children sometimes find ways to share tasks so no one&nbsp;person carries the entire burden. But even among adults, sharing isn&rsquo;t easy.&nbsp;&ldquo;You may have family members who don&rsquo;t get along with each other, family members with different objectives and motivations,&rdquo; Sheik says.&nbsp;Either way, it&rsquo;s important to pick one person to assume a leadership role and&nbsp;coordinate care. &ldquo;There has to be a leader,&rdquo; Sheik says. &ldquo;If you get too many voices&nbsp;involved, it makes the process more complicated.&rdquo;</p> <p>That leader may be the oldest sibling, the one who lives closest to the elderly parent, or the one in whom the parent confides the most.&nbsp;Whomever is chosen to take the lead, that person should discuss with family&nbsp;members what each person is willing and able to contribute, and how each feels&nbsp;about the situation.</p> <p>ENLIST HELP</p> <p>If your parent is looking for other lifestyle options or needs more help than you&nbsp;can offer, consider assistance through:</p> <p>CONTINUING CARE RETIREMENT COMMUNITIES: These senior living communities offer multiple levels of care all in one place, including independent&nbsp;living, assisted living, skilled nursing care and memory care. This setup is ideal&nbsp;for seniors who do not want to have to move as their needs change as well as for&nbsp;situations where one spouse needs more care than the other.</p> <p>ASSISTED LIVING: Assisted living communities are for those who are not able to&nbsp;safely live alone. If you need help with preparing meals, certain hygiene tasks (such&nbsp;as bathing or dressing) or taking medication, this may be an ideal choice.</p> <p>SKILLED NURSING FACILITIES: Skilled nursing facilities (or nursing homes) offer&nbsp;a high level of medical and personal care for those with higher-acuity needs.&nbsp;Residents receive constant care and typically have access to a range of medical&nbsp;professionals, including physicians, nurses and physical therapists. If a parent has&nbsp;a chronic illness and/or requires regular attention, this may be the best solution.</p> <p>HOME CARE: Home care is as it sounds&mdash;care provided by professionals in&nbsp;the senior&rsquo;s home. Home care does not involve the services of doctors and&nbsp;nurses but may incorporate transportation services,&nbsp;meal services, cleaning&nbsp;services and so on.</p> <p>HOME HEALTH CARE: Home health care is professional medical care provided toseniors in their own homes. For seniors with medical conditions, this option can&nbsp;allow them to find treatment without relocating.&nbsp;No matter what type of assistance you settle on, this is likely an emotional time&nbsp;for your parent, who may feel a loss of independence and control. Talk about both&nbsp;of your concerns in person, and suggest a gradual transition.&nbsp;&ldquo;So much of this is a process, and there might be some resistance from your&nbsp;parent,&rdquo; Scholl says. &ldquo;Your parent possibly isn&rsquo;t going to let you change her lifestyle&nbsp;and move as fast as you want to.&rdquo;</p> <p>GET COPIES OF PAPERWORK</p> <p>If you have been given power of attorney and are tasked with managing the&nbsp;affairs and care of your aging parent from a distance, your efforts will be most&nbsp;effective if you have all of your parent&rsquo;s personal information at your fingertips, Scholl says.</p> <p>During your visit, ask your loved one to help you collect certain items. The&nbsp;following information may come in handy when trying to access insurance or&nbsp;government benefits programs, secure financial assistance to defray care expenses&nbsp;or settle an estate&rsquo;s obligations:</p> <p>Birth certificate</p> <p>Social Security and Medicare account numbers</p> <p>Will and beneficiary information including powers of attorney</p> <p>Income statements</p> <p>Investment and asset documentation</p> <p>Bank and credit card account information</p> <p>A listing of creditors and payments due</p> <p>Designation of a medical power of attorney (also known as a health care proxy)</p> <p>Contact information for your loved one&rsquo;s friends and neighbors in case you&nbsp;need to call them in an emergency</p> <p>Contact information for accountants and lawyers</p> <p>Keep copies of this information both with you and with your parent where he can&nbsp;find it easily.</p> <p>Technology can be a huge help for long-distance caregiving. You can help monitor&nbsp;your parent&rsquo;s credit card and bank accounts online and assist with online bill pay.</p> <p>Scholl also suggests setting up alerts so that if a payment isn&rsquo;t made, you are notified.</p> <p>This is particularly important for insurance payments, including long-term care&nbsp;insurance, Scholl says. &ldquo;Missing those can be catastrophic,&rdquo; he says, noting it could&nbsp;give insurance companies reason to reject or delay claims or even drop coverage.</p> <p>STAY IN THE HEALTH CARE LOOP</p> <p>Whether your loved one is relatively healthy or experiencing&nbsp;difficulties, it&rsquo;s beneficial to remain in contact with his health care&nbsp;providers. Many doctors will update out-of-town family members&nbsp;via phone or email if your parent has given the doctor approval.</p> <p>Staying up to date is especially important if you have medical&nbsp;power of attorney. The medical power of attorney names a health&nbsp;care proxy to make medical decisions on behalf of someone if&nbsp;they are unable to do so on their own. Rules for medical powers&nbsp;of attorney can vary by state, so it&rsquo;s a good idea to first find&nbsp;out what your state requires so that your documents will be&nbsp;considered legitimate when you need them. As an example, check&nbsp;out&nbsp;California&rsquo;s requirements online.</p> <p>If your aging parent makes her own medical decisions, but agrees&nbsp;to give you some oversight of her health, she simply needs to&nbsp;complete a release form that authorizes the doctor to speak to&nbsp;you about care, prescriptions and treatments, medical bills and&nbsp;insurance-related issues. Once the document is signed and shared&nbsp;with the physician, make sure to place the document in your&nbsp;loved one&rsquo;s medical records and keep a copy for yourself.</p> <p>It is also useful to have your parent draft a living will, even if she&nbsp;is currently healthy. The living will clearly specifies what medical&nbsp;actions should be taken in the event of incapacitation. This&nbsp;can be a difficult subject to bring up with your parent. But it is&nbsp;important that, in the event of incapacitation or death, her wishes&nbsp;are clear and understood by all potential decision-makers.</p> <p>&ldquo;If they&rsquo;re happy and they&rsquo;re comfortable, [everyone is] going to&nbsp;have a better experience,&rdquo; Sheik says.</p> <p>RESOURCES</p> <p>Eldercare Services</p> <p>Find information on services in your area, including preventive&nbsp;health services, caregiver&nbsp;training and caregiver support,&nbsp;using the Administration on&nbsp;Aging&rsquo;s Eldercare Locator.</p> <p></p> <p>Help With Senior Care Costs</p> <p>Get details on state and&nbsp;federal programs that defray&nbsp;health care costs, plus resources to help pay for food, utilities&nbsp;and prescriptions for seniors&nbsp;on fixed incomes.</p> <p>&bull; Centers for Medicare &amp;&nbsp;Medicaid Services</p> <p></p> <p>&bull; National Council on&nbsp;Aging&rsquo;s benefits website</p> <p></p> <p>Senior Housing Information</p> <p>Learn more about a range of&nbsp;senior housing options offered&nbsp;by</p> <p></p>

Are you among the 7 million adults caring for aging parents from a distance? Learn how to match the right assistance to your caregiving situation, to create a long-distance caregiving plan tailored to your family’s needs.

Print and read this guide that explains:

  • How to know when it’s time to step in
  • How to involve other family members and professionals
  • Which family documents you should have on hand
Caregiving Guide
Publication Date: April 30, 2013