Caring across the miles
All’s been well for the last few years and a then suddenly, in the middle of the dinner, the dreaded phone call comes to say that mom, who lives in another province, seems lost and confused. Her helpful neighbours who watch over her well-being have taken her to the hospital and the doctors are suggesting that she needs a number of tests to determine the next steps. She can’t go home alone. You’re on the next flight. Welcome to the world of long-distance caregiving.
In today’s fast-paced world, many families find themselves separated by distance. It’s not unusual for adult sons and daughters or siblings to live in different cities or provinces, sometimes even different countries, especially if work or retirement choices have given rise to new lives in new places. Research predicts that the number of long-distance caregivers will double over the next 15 years so read on as there’s a wealth of knowledge that’s now available to help those who are for those who are trying to provide, support and assistance from another place. If you live more than an hour away from your parents, you’ll find this chapter helpful. If you’re in another town, read carefully. If you and your parent live at different ends of the country, or if you are like my daughter who has been transferred to South Africa for two years, this is your new bible.
On the road…again
The average age of a long-distance caregiver is 46, and the average age of the care recipient is 78. Adult children find themselves helping from a distance and traveling back and forth with a certain amount of regularity. If this sounds like you, you’re not alone. We know that caregivers on average spend four hours traveling to their parent and invest 35 hours of care each month. Being miles away is common and we’ve collected some valuable ideas that’ll help you to come to grips with “the rules of the road.”
Step 1. Try to put things in place before the situation is urgent.
Step 2. Don’t panic. Navigation is generally more important than speed. Think before you act and ask for guidance.
Step 3. Realize that conditions change and that, given your distance, you’ll probably find yourself recognizing more dramatic changes in the person you’re caring for than those who are involved on a daily basis.
Step 4. Gather information. Be ready to share what you know and keep track of all your conversations.
Step 5. Set aside an emergency fund that you can access for immediate travel and accommodation cost. You might need to pay for Ubers, or take-out food as well, while things are up in the air.
Step 6. Take care of yourself. Traveling and charging back and forth can be stressful. Be sure to slow down, eat well and make health a priority.
A beginner’s checklist
When you arrive on your parents’ doorstep, whip through this handy list as you jump-start your caregiving efforts. It’ll tune you into priorities and give you a quick, assessment of where help is needed this time. But a word to the wise, stay calm, ask questions patiently, and know that this is a stressful time for everyone in a different way. Your loved ones will be worried, frightened, confused, and possibly have trouble making decisions. Be the strong and organized one if you can.
• Understand current medical situation/risk factors.
• Review medical appointments and/or consultation with doctors and other health professionals.
• Liaise with other family members/significant others to determine their roles/willingness to help.
• Check medications and make sure your elder is taking them on time (is your medication list up to date?). Know the location of the local pharmacy and who holds prescription renewals. Understand any other alternative, vitamin or herbal treatments that are part of your parent’s daily regimen.
• Understand caregiving visit schedules.
• Find out about personal care such as dressing and bathing routines.
• Review meal planning (Meals on Wheels, grocery shopping, etc.)
• Assess chores: laundry, yard work and household maintenance.
• Facilitate transportation to appointments, church, social events, etc.
• Do a quick check of finances. Are there bills that need to be paid?
• Locate all essential documents, Powers of Attorney for Personal Care, wills, banking information.
• Recognize the importance of social visits from friends, family and volunteers.
• Check for financial assistance/insurance funding that might be available.
• Know where to find and who has access to house keys and any home security codes.
• Review driving safety issues, (status of license, insurance and location of car keys).
Being miles away can also mean feeling frustrated and helpless when trying to access services from afar. There are no simple answers, but there are a number of simple things you can do to make your task more manageable.
When you visit your family or friend while they are well, anticipate future health or safety problems. Privately paid case managers and occupational therapists are available through nursing agencies or, if you qualify, through provincial health authorities. These professionals can help family members and the individual themselves to decide what assistance might be needed and when. These services are called “in-home assessments,” and can be arranged through your loved ones and family doctors. Involve you’re the individual who will be cared for in the assessment of their needs and help them understand the value of being proactive. Simple changes made now and prevent accidents/crisis situations in the future.
Look for community services that are available in their region. There’s usually home care or Meals on Wheels. You can get this information over the phone or on the Internet. (See the “Let your fingers do the walking” table.) Prepare to be patient and persistent and have as much information as possible on hand about your relative’s situation. It’s a good idea to write down the name of the person you spoke to, on what day and what follow-up is needed. Get referrals, if you can, for any new services or care providers that are needed. One stop shopping with a single retail supplier or care manager is often the best way to go if you are co-coordinating from afar.
Ask key questions now
When you investigate local resources, be ready to take notes on topics like:
• How to apply for a particular housing, respite, homecare or palliative services plus any paperwork/verifications/certificates that are needed.
• Specific services that the government/provincial health system offers in the community (how often & how to qualify.)
• What private pay services are available and how easy or quickly can they be put into place.
• What assessments are needed and readily available to help with decision making?
• Fees and how they are calculated income based or the same for everyone.
• Is there is a waiting list and how do you join it?
• What not-for-profit associations exist that are applicable to your parent’s condition (i.e. Alzheimer’s Society, Heart and Stroke Foundation, Parkinson’s Society).
• How to bridge gaps between service providers – Public, private, live in/live out?
• Banking and bill-paying opportunities (find out about banking and bill-paying using online/direct deposit if its not already in place.)
Keep records of everything
You need to know the who, what, when, where and why of medical, financial, personal and other issues. Take a blank journal or exercise book or make a separate place on your computer/electronic organizer and start collecting this information so that it is both readily available and portable. Make a list of all family members and their key contact information, as well as the names and numbers of all caregivers and family doctors.
Neighbours and friends
Plan ahead and start meeting neighbours, friends and care agencies next time you are in town so you are better prepared should an incident or emergency occur.
It is virtually impossible to go it alone when arranging care. Instead, work to build a reliable network of caregivers for your loved one. This could be paid help, through a nursing agency, accountant or geriatric care manager, as well as assistance from neighbours, caring cousins and friends. If you can’t reach the person you’re caring for, calling these people may be a godsend.
Even though dealing with parent-care issues and logistics can be time consuming and frustrating, it’s important to try and maintain a positive focus and reach consensus. One of the best ways to influence decision-making is to help the person understand the benefits and, of course, the risks of what you’re proposing. Explain any services or support that is available. It could be helpful to have someone your parents respect like a pastor, lawyer or accountant recommend/help explain the services that are needed and available. If your family member is able to understand, it’s important to share schedules, and services agreed to details, costs etc. to help them feel more secure. In many families, it is a challenge to get people to initially accept help, so don’t be surprised if you encounter resistance.
What about you
Long-distance caregiving has its own special challenges for both the caregiver and the care receiver, so here’s a few things to consider along the way:
• Does the person have a relative or friend in the community who can help them and you?
• As a family caregiver, is your energy level up to the stress and fatigue of traveling back and forth?
• How will your caring commitment and time away affect your job and/or your family?
• Are you in a career or work situation that allows you to take time off at the spur of the moment in an emergency.
• Are you financially able to handle the costs of long-distance caregiving and traveling back and forth?
• Are you strong emotionally and able to take charge if things get chaotic.
• Are you patient and assertive enough to be able get things done from afar?
• Do you have siblings who can help?
• Who will assume the lead? And will you be able to find back-up
Considering a move?
Sometimes family discussions are centered around a “quick fix solution”; moving a loved one closer to you or in the same space as you and other family members. This may be a good idea, but keep in mind a number of key issues:
1) Will mum or dad be happy in a strange community?
2) Will they have enough social connection during the day if they are living at your house?
3) Will your brothers and sisters be able to maintain visiting time?
4) How do your spouse and kids feel about your increased involvement?
5) Is your home suitable for them?
6) Are they better off in their local nursing home, surrounded by friends and activities or will it be better to start again in a home closer to yours?
7) What happens if you get a job offer that involves a transfer?
Not so fast! Too often, we uproot and disrupt our loved one’s lives, only to find that the families they moved to be with are divorcing or moving again. Obviously a second move or breakup of households will create a whole new set of problems so be sure when you offer the “live with us” solution that its stock steady.
Making Other Arrangements
Sometimes caregivers prefer to have a trusted observer look in regularly on their parent. This is especially helpful when “formal care” is not really needed on a regular basis. Often, financial arrangements can be made with building superintendents, neighbours or local students who can run errands, shop and provide regular visits, and keep you involved and up to date in the person you are responsible for life.
Despite the hurdles that being miles away creates, staying in touch is much easier these days. If you use the phone wisely, the cost of even frequent calling shouldn’t be too expensive. If your elder is on-line friendly, send regular, easy-to-read e-mails that are more like the letters that they are used to. Avoid short, snappy business lingo. For most of our parents, the written word is still treasured and reread. Send a card, include photos of the kids, pets and day-to-day events.
Keep in touch
Regular contact or visits are key. If you are unable to reliably manage frequent visits and calls try to arrange for others to provide this service. Things can go downhill very quickly and it is important that people are not left alone for extended periods of time. Commit to calling on a routine basis and be disciplined about sticking to this. Remember, a personal call is the best way to check in with a few discrete questions.
Notwithstanding the reality of your over hectic life, the importance of paying visits to an aged or ailing parent cannot be stressed enough. The less frequently such visits take place, the more extended they ought to be. These visits are crucial to re-assessing a situation, providing respite for other caregivers and reconnecting. These are times to establish whether their driving is still safe, they are managing with meals and that medicines and personal care is on track.
Medicinal emergencies or accidents usually require an immediate visit and perhaps a longer stay. It’s a good idea to have a contingency fund and a few days of holiday banked for such eventualities.
The earlier you can meet and chat together, the better. Often, due to logistics, relationships, etc. one family member (usually an older daughter) will assume a leadership role, especially when it comes to talking to health professionals. Do this as soon as you can to ensure that everybody who wants to be is involved in the decision-making process and has a common understanding of goals, tasks and responsibilities. It is also an opportunity to ask each other for support and air feelings or concerns. Focus the discussion on care issues and avoid accusations and blaming. If the meeting is likely to be difficult, consider inviting a trusted person or health professional to facilitate.
Circulate a tentative list of tasks that are expected such as accompanying relatives to doctor appointments, handling grocery shopping, managing finances etc, so that all will understand the duties involved and be able to ask questions and volunteer.