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Myth vs. Reality: The Truth About Caregiving

Friday, August, 30, 2013

Are you considering becoming the primary caregiver for a loved one who is in their final season of life? Perhaps you have already entered into this important commitment, and you’re wondering what will happen as your situation progresses. 

As you take on these vital duties, it’s important to approach caregiving with realistic expectations. Here are five misconceptions about caregiving that you may encounter – and responses that can help you balance your role more effectively:

Myth #1: The doctors should make all the decisions. 

As the primary caregiver, you are a vital part of your loved one’s health care team, not just an observer with no voice or control. Your knowledge and opinions are needed every step of the way. You are one of the experts here – the one who knows your loved one best. Don’t be afraid to take your place as a key participant. 

During consultations, the proper environment is one that makes you feel free to offer information, share opinions and ask any questions you may have – and there are no bad, stupid or unimportant questions. Each conversation adds to your knowledge and thus your ability to provide comfort, dignity and peace to your loved one.

As you meet with medical professionals, you should always feel that your questions are welcome and that any information you provide is helpful.

Myth #2:  I can’t change my mind. 

Many caregivers, after a few initial conversations that appear to lead to a particular decision, feel “locked into” that choice even if new information comes to light. This can be true of medical and financial issues or more personal details like household arrangements and your loved one’s daily schedule. It is important to remember that as your loved one’s condition progresses – and as you gain experience in your caregiving role – you always have the right to change your mind. 

This role is bound to be unfamiliar in many ways, especially at first. Make sure to take your time on important issues like financial, legal and insurance concerns. Your opinions about everything from pain management to entertaining visitors may shift rapidly. And your loved one’s condition will heavily influence decisions about every aspect of your caregiving role. This is new and ever-changing territory. It is normal – and often wise – to change your mind as your situation evolves.

Myth #3: If I need help, I am failing my loved one. 

It may be true that there are some things only you can do for your loved one. Your presence is a special comfort, and your knowledge is invaluable. Your full attention is required on important details. But not every task rises to this level of importance. In fact, much of your daily routine will consist of duties that are good candidates to be delegated.

Match errands with people who want to assist you, and let them go to work. Grocery shopping, laundry and housecleaning are just some of the areas that may be open to outside help. Sharing the burden frees you to focus on what you truly need to do, and allows you precious time to rest and recharge. You’ll find that you’re better able to focus on the most important duties and decisions, and – most importantly – spend more meaningful time with your loved one.

Myth #4: My needs don’t matter right now. 

The fact is, you are only able to provide the best care for your loved one when you are also making sure to address your own needs. Look for ways to build breaks into your schedule. Spend time away from your caregiving role, pursuing favorite activities or seeing friends and family outside the context of your loved one’s condition. Don’t neglect your own preferences when planning meals or scheduling your loved one’s day. 

As you communicate with your loved one, it is normal for many conversations to focus on their medical and physical needs, as well as other important decisions. But often it can be a great comfort to both of you if you also maintain connections to activities and relationships that are not directly related to end-of-life care. One of the emotions your loved one will likely experience is regret over their lack of independence, or “being a burden.” If they see that you are able to create room in your life for your own needs, it can go a long way toward alleviating their guilt.

Myth #5: Humor has no place at a time like this. 

Don’t let unnecessary guilt steal your happiness out of a misplaced sense of propriety. Often laughter and lightheartedness can appear in seemingly unlikely places. The human spirit is remarkable in its ability to find moments of joy in the midst of difficult times. Laughing your way through a special memory – or finding humor in your daily routines – does not mean you are in denial or ignoring the serious nature of your circumstances. 

The truth is, there is no single way to deal with the challenges you’ll face as a caregiving. One sure thing is the unpredictability of emotions and reactions to stress. If you find yourself acting “silly” or chuckling with your loved one over an inside joke, take it in stride and be thankful – it’s normal. You’re creating memories that you will cherish for many years to come.

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