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4 Tips for Caregivers of Chronically Ill Loved Ones

Being involved in the coordination of a loved one’s care is an exhausting and at times, frustrating, task.

This applies if you are a full-time caregiver, or even just helping out. The person you’re caring for could be a child, a spouse, or an aging parent. In any of these situations, helping to manage one or more chronic illnesses can make your life anything but easy.

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?

Your life can be impacted negatively when having to deal with the logistics of chronic care. However, there are steps that you can take to stay on top and reduce your stress levels. Keep reading to learn more.

1) Speak up for your loved one and their healthcare needs

Have you dealt with a care provider who was missing a key piece of information about your family member?

It can be frustrating when a primary care doctor doesn’t have a recent set of test results. And even more so when a nurse isn’t informed that the prescribed dosage of a drug has been altered.

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.

By being an advocate, you can be sure that your loved one’s healthcare team can act as one unit. Are all of their needs being met? You must observe the care your family member is receiving and ask questions on their behalf.

How are those within your loved one’s circle of care sharing updates and health information? Can you get access to staff notes and updates? How well are care providers working together?

Digital technology can definitely make these processes very efficient. The result is more responsive care for your chronically-ill loved one. But some tools are more useful than others.

Information sharing in real-time can simplify the process. The right app can allow healthcare teams to share and access information 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.

2) Use the tools available to you

As mentioned above, innovative digital communication tools make it easy to track the care of a chronically-ill loved one. When they are available, it is recommended to get all of the family’s circle of care involved on the same apps.

Why? Consider one of the biggest problems with electronic medical records (EMRs). Often times, hospitals are unable to share a patient’s EMR with another care provider because their systems are incompatible.

Mobile applications like aTouchAway can simplify this. Not only do they allow for easy communication for everyone involved in the patient’s care, but they also allow medical information to be accessed and shared securely. The simple interface allows for users of all technical skill levels to communicate with no complicated logins or unnecessary buttons.

Sharing information in the same digital space just seems like the most logical approach. 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. However, they are not completely secure and any data sent through them may not be protected, which is where using a secure app may be more appropriate.

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.

3) Stay informed, even when you aren’t there

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 work and family commitments don’t allow for frequent visits. You also deserve time for yourself once in a while.

Spending time apart is healthy (and in many cases, unavoidable). However, it can make keeping track of a loved one’s condition more difficult and confusing – especially when there are multiple chronic diseases involved. The truth is, health-related developments can occur when you least expect them.

If you’re 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. This will make it much easier and more organized when you cannot physically be there.

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 real-time information about your family member’s care. Sharing information digitally makes it more accessible than ever.

In addition to connecting you with healthcare professionals, technology makes it easy for you to connect face-to-face with your loved one. Recent advances in technology have made it possible for even those with little to no technical skills to call their caregivers with the simple touch of a button.

4) Take time for yourself

No list of tips for caregivers and family helpers would be complete without the following reminder. You cannot properly take care of someone else’s health if you can’t care for yourself.

Looking after a chronically-ill loved one can sometimes come with feelings of guilt. How do you know you’re visiting enough? Are you doing enough to help? These feelings can be a problem for even the most devoted caregiver.

You have your own personal schedules and 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 where you can’t physically be available.

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.

Featured image courtesy of One Call Alert.

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