A Caregiver’s “Worry Guide”
By Rick Lauber
Are you up at night trying to decide what to do? Is the situation worth making a fuss about or should you just stay quiet and see what happens? Will your family members agree or do you need to persuade them to get on side? Are you getting more and more anxious?
We all have personal concerns, including family baggage and difficult situations to sort out, when we take on the responsibility of caring for someone else. Inevitably, there are short- and long-term decisions to be made, preferences to be considered and issues that arise on all fronts—and time is sometimes of the essence. Learning to pick our battles and choosing how to respond in the pressure of the moment is both an art and a science for busy caregivers. However, there are some matters that should take priority. Here are some of our top-down thoughts on when to sound the alarms, when to take decisive action and when to simply walk away to keep the peace.
The challenge: How do you determine where Mom/Dad should live?
Expect strong resistance here and plenty of opinions from both elders and siblings. Older adults often dig in their heels and refuse to leave their own home, even when they’re at risk. For them, abandoning a familiar home where they’ve raised family, have memories and feel safe usually means acknowledging that help is needed and “the end is near.” The potential upheaval seems to far outweigh the benefits.
Brothers and sisters, on the other hand, may dwell in nostalgia, be worried about their parents’ unhappiness, try to manage from afar without all the facts or have concerns relating to financial matters or an inheritance if you list the property for sale.
Stand firm here and thoroughly weigh the alternatives. Where is your loved ones’ current home? Is it still affordable, and close to you and the help and activities they need? Is it convenient to visit? Are they safe and can they (or you) manage the maintenance? (A private home might have too many stairs, inaccessible bathrooms or require too much upkeep.) Can any necessary modifications be done quickly and easily? Who will take care of your parents’ meal preparation, shopping and cleaning as time goes on?
What to do: Don’t push too hard at first. Gently discussing the options, costs, upsides and social possibilities can help everyone get on board with the program you have in mind. It might be a harsh or uncomfortable reality check for some, but it is better to take action and form a plan now than to have to make decisions in a crisis.
The challenge: When will you know if driving should stop?
Owning your own vehicle provides mobility and convenience with getting around, and is often a last bastion of independence. Operating a motor vehicle, however, requires acute senses and quick reaction times—both of which can be negatively affected by frailty, medications, and declining physical and mental health.
(My mother lived and drove with Parkinson’s disease. Her condition reduced her flexibility and it was painful for her to check over her shoulder, so she didn’t. This not only made passengers like me increasingly nervous, but was unsafe.)
When conditions change, older drivers are not only a risk to themselves, but also to others. Encouraging someone to give up the car keys—or taking the keys away entirely—doesn’t come easily, but when it’s time it has to be done quickly. My sisters and I approached our parents on a unified front and explained our joint worries. They tried to argue, but couldn’t win that battle in the end. However, others I know have had to go to more extreme measures, such as taking away the car to stop their mom or dad from getting behind the wheel.
What to do: Ask the family doctor to get involved (aging parents may be more likely to listen to medical professionals rather than to their own, seemingly meddling children). But be sure you don’t leave your parents stuck at home. To avoid them becoming socially isolated and the taking risks in walking alone, be ready to offer viable alternative transportation. Set up an Uber or a taxi account and order by remote from your phone if necessary. Arrange grocery deliveries and volunteer drivers for medical appointments, and see if any of your parents’ neighbours might want to help out.
Signs of abuse
The challenge: How will I know if Mom and Dad are being taken advantage of?
Elder abuse can take any number of forms: Physical, mental, emotional and financial. If you notice unexplained injuries or bruising; more anxiety than usual; fear of going out or a departure from regular activities; sudden or mysterious bank account withdrawals; a new partner moving in very quickly; or new contractors onsite or renovations you didn’t know about, it’s probably time to stop worrying behind the scenes and become involved.
What to do: Depending on the nature of your concerns, you should try to chat with your loved ones to find out what’s really going on. Are they confused in any way? Is someone pressuring them? Are they scared? How can you help? Based on what you find out, take action by meeting with and reporting to an appropriate authority right away. But, be sure you’re right and have substantiated proof before you make any assertions. These matters are delicate and, if family is involved, you’ll want to tread carefully.
Help at Home
The challenge: How do we find the help we need and choose the “right” community services?
Depending on where you live, any number of community services (e.g., senior’s associations, driving services, adult day senior’s programs) can be available free of charge or for a fee to provide both support and companionship. Often, seniors resist household help to protect their privacy, for fear of intrusion by strangers or because they are uncomfortable spending money, even if they have the means. Consider that care-service companies may not routinely send the same worker, but whoever is available. This can cause confusion or anxiety for older seniors.
What to do: Don’t rush your loved ones. Consider what type of help is needed and the type of person that will be a good fit. If you can, introduce the concept of outside care slowly with a once a week trial. With your loved ones’ permission, remove valuables if they are afraid of something precious going missing. Be there with them when the carer arrives if possible, or call to check that everything is okay. Make a list of tasks and responsibilities together that you can monitor. Be prepared for reluctance or negativity, and be sure to listen to and respect your loved ones’ feedback. Last but not least, expect it to take a few tries before you find the right solution.
The challenge: I have a busy job and active family—how can I do everything?
Caregiving tasks can mount up, depending on the needs of those we are caring for. Research tells us that caregiver burnout is real, and it’s better for both the loved one and the carer if the burden doesn’t fall on just one person. Being organized and determining who does what may seem daunting at first, but it can make a big difference if you can divide and conquer. However, if a sibling chooses not to help out with a specific job or finds it uncomfortable for any reason, choose someone else to do it if possible rather than trying to convince your sibling to take on the work reluctantly. Accept the fact that some family members may not be able to help as much as others.
What to do: Make lists of what has to be done and keep in mind that some tasks are routine and regular, while others are occasional. Be creative and don’t be afraid to ask for help. Understand what services you and your loved ones are entitled to from provincial health plans, insurance or employers. Involve old friends, younger family members, church and community groups, and support groups when possible. Try to remember that situations change, and that alterations can be made and turns taken.
The challenge: What do we do when our parents are confused about what’s true?
My father had Alzheimer’s disease, and I learned very quickly that his stories and his understanding of a situation would often became quite twisted or completely false. But, instead of arguing with him, I simply smiled, agreed with him and became a good listener. There were also times when he couldn’t find the right words or got stuck on the same topic, and I gently moved him onto the next subject or next place he needed to be. After all, at the end of the day, does it really matter if Mom or Dad remembers the family vacation as being in Florida rather than Hawaii, or if they think it’s one or three o’clock? It was my job simply to keep my dad well cared for—warm, safe, dry (so to speak) and free from wandering.
What to do: Don’t sweat the small stuff. Find humour where you can. Introduce necessary change gradually, avoid confrontation, and put your energy into creating a comfortable routine and a stress-free environment for those you are caring for—and for yourself. If you can stay cool, calm and collected, your loved ones will instinctively feel safer and well cared for, regardless of what’s going on.
Not by the book
There often isn’t a right or wrong answer in the world of caregiving. A lot of decisions you make will be based on your gut instinct, your upbringing and your loved ones’ needs. By thinking things through ahead of time, and wisely choosing when to speak up and when to hold your tongue, you’ll be better equipped to focus on what needs to be done and maintain family harmony—and you’ll have more energy to tackle those all-important tasks.
Rick Lauber is the author of Caregiver’s Guide for Canadians, available at bookstores and on self-counsel.com/default/caregiver-s-guide-for-canadians.html. Get more info at caregiversguide forcanadians.com.