by Michael Plontz
A family member has just been diagnosed with an illness that will eventually require round-the-clock care. Of course you want to be the one giving that care. This decision is usually made without hesitation; of course we want to be our loved one’s caregiver. Who else could take better care of them? However, when the reality of your decision sinks in, your head will be swimming with uncertainty, anxiety, and maybe even fear. Certainly you will have many questions. Welcome to Caregiving 101, a primer for first-time caregivers.
First of all, arm yourself with knowledge. An old maxim states that “Knowledge is power,” and it’s true. Knowledge will empower you to take the best care of your loved one and yourself. Learn all that you can about your loved one’s condition, illness or disease. There are local branches of national organizations like the Alzheimer’s Association and the Cancer Society all over the country. Use them as a tool to find out all about your loved one’s present condition and what the future may hold for both of you.
Another reason to learn is to take better care of your loved one. You may educate yourself through health care manuals, books and videos. The Internet is also a good source of information, but navigate carefully through that material because not all of it is valid. Also, ask lots of questions of your health care professionals. They are the best people to show you proper techniques like transferring, lifting and bathing. When you learn all that you can, you will be more confident in your caregiving abilities.
Caregiving can be an isolating experience, so it’s helpful to talk to others who are, or have been, in your shoes. You will feel that you are a part of a growing community of caregivers. You may also learn about options and community resources that you were not aware of from other caregivers. These people can also help with difficult decisions concerning your loved one. Determining your responsibilities will probably be one of the first things you struggle with, so talk to others who’ve been there before. You must remember to take regular breaks from your caregiving responsibilities. You can’t be good to someone else if you’re not good to yourself. Use your relatives. They can help in several ways—financially, socially, and as respite support. If relatives are unavailable or do not exist, try community services like a volunteer group at your local church. Try and follow these guidelines for caregiving breaks: take half-an-hour a day to practice yoga, meditation, needlepoint, reading, etc.; spend a couple of hours a week away from the house at the mall, coffeehouse, library, etc.; monthly you should have an evening out with friends, go to a play or concert, etc.; on a yearly basis you should go on a well-planned (and well-deserved) vacation. These guidelines will help in avoiding “caregiver burnout.”
Your community most likely has organizations about which you never gave a second thought until now. These may include, but are not limited to, Meals on Wheels, day care centers, and home care agencies. If applicable, contact your local Area Agency on Aging for a list of services and organizations. Your local medical supply store may have gadgets and devices to enhance your loved one’s abilities, at the same time making your life a little easier. You might also inquire about local, state or federal programs that might provide financial aid for you and your loved one. As needs increase, so do costs. Understanding which programs can help and what you can afford, will allow you to plan for the future.
One way to deal with the emotional roller coaster you may experience is to get your feelings down on paper. Some journal entries might address the following subjects: How do you feel now? What are your fears and/or concerns? What outcomes would you like? What losses have you noticed so far? What changes in your relationship with your loved one have cause you to feel sad? What changes have given you comfort? Journaling is a healthy way to put your feelings “out there” and to possibly alleviate some of the anger, frustration and helplessness you may be feeling.
Caregiving need not be a lonely and emotionally debilitating experience. According to the latest statistics on caregiving for the National Family Caregivers Association, nearly half of the U. S. population has a chronic condition. From that number 41 million are limited in their daily activities while 12 million are unable to live independently or even leave the house. One can deduce from these numbers that there are millions of family caregivers out there. So keep in mind that you are not alone, and best of luck to you and your loved one.