Caregiving can take a lot out of a person. If you have a parent with complex care needs, you may feel like you’re constantly pressed for time.
Planning for the medical and care needs of a loved one is an often-overlooked stressor for caregivers. Complex care needs can make the process especially challenging. When a parent is diagnosed with several chronic health conditions, life can become complicated – quickly.
Medical appointments, trips to the pharmacy, attempts to keep doctors up-to-date – these tasks can take a toll. Over time, you may find that you’re not meeting your own needs – or those of your other family members.
This post will look at some of the biggest planning challenges of caring for a parent with complex care needs. We’ll include some coping tips, and discuss some promising solutions on the horizon. Read on, and take heart.
Medical appointments and care coordination
It goes without saying that providing hands-on care is taxing. But so is coordinating the ongoing help your loved one with complex care needs requires.
Medical professionals and paid caregivers are an integral part of your parent’s circle of care. When doctors, specialists, and home care staff are in sync, patients receive high-quality, responsive care.
But no health care system is perfect. The more complex your loved one’s condition is, the larger the number of practitioners likely to be involved. This could mean more prep for, and commuting to, appointments. Unfortunately, it might also mean more opportunities for miscommunication – with you, your parent, and among care professionals.
Let’s say your father has liver cancer, diabetes, and depression. He sees a primary care doctor, an oncologist, and endocrinologist. He’s visited by home care nurses and personal support workers as well as a social worker.
If you help plan his care, you’ll likely deal with various service providers. You drive him to several monthly appointments in Toronto – an hour and a half from where he lives.
For your father, these appointments are stressful. Worrying about them causes bouts of insomnia. He also has trouble remembering to bring the information his doctors request. At home, he’s visited by several different home care nurses. He has to remind them of developments related to his condition.
You oversee much of his care long distance, and you worry about how he copes alone. Is he taking his medication correctly? You take time off of work to drive him into the city – a financial burden on you and your children.
When you get to his appointments, you find out crucial test results have not been delivered to the specialists he’s seeing.
For many with a parent who have complex care needs, this is life.
Organizing family members
Many organizations that coordinate health care services are improving how they handle complex care patients. Still, you’re most likely doing a lot of legwork. Help from other family members can make life easier.
But it’s not just about sharing the burden of caregiving and care coordination. Expanding the circle of care can have a positive impact on your loved one’s mental state.
Unfortunately, the process of setting up visits and day-to-day aid can create new stressors. Each new person who gets involved needs to be brought up to speed on your parent’s condition.
Let’s return to your fictional father. After talking with you, your sister agrees to drive your father to some of his appointments. But when they get to the office, the oncologist asks questions she can’t answer.
Your brother decides to visit your father between home care appointments to make sure things are going well. But he doesn’t know some of the more subtle symptoms to watch for. He isn’t aware of the new dietary restrictions, or the possible consequences of failing to follow them.
It’s easy to believe these scenarios won’t occur if they haven’t already. But the truth is, when there are a million things to take care of, important details can get lost.
If you’re the primary caregiver, you’ll also have to followup with other family members. You’ll have to update them of medication changes, new symptoms – anything that might come up while they’re spending time with your parent or at an appointment. You’ll have to ensure you get all new information from them – and distribute it to everyone involved.
Your parent’s medical team has important information for family members in the circle of care – and vice vera. Sometimes accepting help can mean adding new things to your “to do” list.
Scheduling “you” time
Do you find yourself pulling away from the people you care about? Are you having difficulty winding down and relaxing? Maybe you’re eating or sleep habits are out of whack.
You may be suffering from caregiver burnout or anxiety. The demands of caring for a parent with complex care needs are significant. And a large portion of your stress may come from dealing continuously with many different care providers.
Planning time for yourself can be as difficult as organizing medical care and scheduling help from caregivers. Making time for the other people in your life who matter can also be a challenge. But you shouldn’t push these activities aside.
If you can’t find the time to schedule a night with your kids or coffee with a friend, something’s wrong.
Depression, anxiety, insomnia, and health problems are a few of the repercussions of caregiver stress. You may also face consequences at work. In fact, many family caregivers wind up leaving the workforce.
Needless to say, the impacts of these issues extend far beyond you and your fellow unpaid caregivers. Employers, governments, and health care departments should all be concerned about the negative effects of caregiver burnout.
If your mental health is suffering from the care you provide, you’re not alone.
According to a Statistics Canada report, 60 percent of caregivers who care for a parent feel distressed by their responsibilities. This figure is based on an assessment of people who provide two or more hours of care per week.
If your parent has complex care needs, you’re probably trying to keep a lot of appointments straight. You’re likely worried about issues like drug interactions and side effects of multiple treatments.
It’s precisely this type of stress that can lead to serious personal consequences.
Simplify scheduling for your parent with complex care needs
It’s easy forget how much time and energy coordination and scheduling can take. To streamline these processes, look to your loved one’s circle of care.
When one care provider transfers a set of test results to another, is there ever a delay?
Do you argue with relatives about who was supposed to fulfill a particular caregiving obligation?
Do you worry that your parent’s complex care needs aren’t met by paid caregivers when you’re not around?
These are symptoms of a disconnected circle of care. Luckily, there are steps you can take to improve the transfer of critical information and prevent burnout.
Ask questions to clarify areas of responsibility among all health providers and caregivers. Keep useful medical information organized and in an easily accessible place. Maintain lists of the records and updates doctors will want to see at upcoming appointments.
And please, take time to care for yourself and nurture your relationships.
These tips can make life easier. But to truly connect circles of care, we need more comprehensive solutions.
The truth is, telemedicine is the future. And communication only gets better when video and digital technology are combined. Medical updates can happen in real time, facilitating faster care. Patient reminders, caregiver check-ups, and family visits can occur remotely – and instantaneously.
Some people are skeptical about the idea that their elderly parents might benefit from technology.
But if you’re an Aetonix user, you’re already know how user-friendly digital communication tools can be. And if you haven’t considered the benefits of technology, maybe it’s time to do so.
Canadian governments and health providers are turning increasingly towards innovation to deliver better care. One of the best things you can do for your parent is be an advocate. Talk to those in your loved one’s circle of care about better ways to stay connected.
Feature Image courtesy of JogiBaer2