Are you involved in coordinating the care of a chronically-ill loved one? If so, you’re likely well-acquainted with frustration.
Perhaps you’re a full-time caregiver, or maybe you’re just helping out. The person you love could be a child, a spouse, or an aging parent. Whatever your situation, if it involves helping to manage one or more chronic illnesses, life is probably anything but simple.
When two sets of instructions from nurses seem to contradict one another, which should your family member follow? Who should you call when a new symptom develops? And why on earth doesn’t the specialist you just spoke to know about your loved one’s recent prescription change?
Dealing with the logistics of chronic care can impact your life in negative ways. But there are steps you can take to reduce your stress levels and maintain control. Read on to learn more.
1) Clarify areas of responsibility
The treatment and day-to-day management of a family member’s chronic disease can get pretty complicated. On any given day, you may have a number of questions you can’t answer on your own.
If your diabetic son starts suffering from mild stomach pain, where should you make an appointment – at the office of his primary care doctor, or his endocrinologist? Who should you call with questions about your mother’s home care visits? Which family member is responsible for driving your mom to the oncologist this week?
As a rule, the more health conditions a patient struggles with, the more care she’ll need. A chronically-ill person with several diseases will usually interact with many caregivers and medical professionals. She may also require more help from friends and family members.
A big part of managing care is knowing who to call for help in a given situation.
To avoid day-to-day confusion, do your homework. Consider your loved one’s condition and research common issues that could arise. Ask the health care providers you come into contact with who you should get in touch with in various potential scenarios. Get answers, and keep lists.
With family members, the easiest way to create accountability is to get organized. Often, one person has to take charge. If that person is you, set up semi-regular planning sessions to clarify responsibilities and nail down care schedules.
2) Be an advocate for your loved one – and better coordinated care
Have you dealt with a care provider who was missing a key piece of information about your family member?
It can be annoying when a primary care doctor doesn’t have a recent set of test results. And when a nurse isn’t aware that the prescribed dosage of a drug has been adjusted, it can be downright scary.
Fortunately, recent changes to healthcare policy mean provincial care providers are more connected than ever before. Unfortunately, these types of changes don’t always take full effect overnight.
Luckily, there are things you can do ensure your loved one’s healthcare team acts – well, like a team. Namely: be an advocate. Observe the care your family member receives. Are all of her needs being met? Sometimes it helps to ask questions.
How are those within your loved one’s circle of care sharing updates and health information? How well are care providers working together? Can you get access to staff notes and updates?
Digital technology has the potential to make these processes very efficient. The result is more responsive care for your chronically-ill oved one. But some tools are more useful than others.
With the right app, healthcare teams can share patient information in real-time. They can also access this info wherever they are – and so can you. If your family member’s care providers are using communication technology, it makes sense to find out more.
In general, knowledge is your greatest asset. Ask specific questions about your loved one’s care and how it’s being delivered.
3) Use the many tools at your disposal
Innovative communication tools make it easy to track the care of a chronically-ill loved one. Whenever possible, it’s best to encourage those within your family member’s circle of care to connect using the same apps.
Why? Consider one of the biggest problems with electronic medical records (EMRs). Often, a hospital can’t share a patient’s EMR with another care provider because their systems are incompatible.
Sharing information in the same digital space just makes sense. But what about potential caregivers who refuse to try new apps?
You may decide to make use of some of the platforms and tools your family members are already using. Facebook messages, Google Calendars, Office spreadsheets – all of these formats can be helpful.
Whether you need help with finances from a technophobic relative, or you want to ensure everyone sees an appointment schedule, there are times when it pays off to be flexible.
4) Stay in the know, even when you’re away
There are likely times when you just can’t be with your chronically-ill loved one.
Maybe you live in a different city or province. Perhaps you need to focus on work or other family commitments. It’s also possible that you just need some well-deserved time for yourself.
Spending time apart is healthy (and in many cases, unavoidable). But it can make keeping track of a loved one’s condition more difficult – especially when there’s more than one chronic disease involved. The truth is, health-related developments can occur when you least expect them.
If your involved in managing your loved one’s care, staying up-to-date is critical. Create a plan for remaining connected to her circle of care – no matter where you are.
Does your family member receive home care services? If so, make sure nurses and personal support workers know how to get in touch with you.
As we’ve already noted, technology can help you access up-to-the-minute information about your family member’s care. One of the great things about sharing information digitally is how easily-accessible it is.
In addition to connecting you with providers, technology makes it easy for you to connect face-to-face with your loved one. Thanks to recent advances, even those with little to no technological skills can chat with family members at the click of a button.
Never underestimate the insight you can attain by monitoring your relative’s care from afar.
5) Take time for yourself
No list of tips for caregivers and family helpers would be complete without the following reminder. You can’t take care of someone else if you don’t take care of yourself.
If you have a chronically-ill loved one, you may be struggling with guilt. Perhaps you don’t believe you’re doing enough to help. These feelings can be a problem for even the most devoted caregiver. And the same is true for those who commit themselves to managing care.
You probably can’t be at every appointment, check in with every PSW, or record every doctor’s instruction. And that’s okay.
What you can do is make sure you understand the care your loved one is receiving. Stay as organized as you can, and take steps to prepare for situations that may arise when your attention is elsewhere.
Remember that caregiver burnout is real. Even if you aren’t a full-time caregiver, feelings of stress related to the care a loved one is receiving can negatively impact your wellbeing. These feelings won’t just affect your life – they’ll affect the decisions you make for your family member.
Feature image courtesy of tr0tt3r
