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Hope Hospice is publishing a five-part monthly series about common family caregiver mistakes. Following is Part 1: Not Planning in Advance. This series is written by Debbie Emerson, MS, Hope Hospice Community Health Educator.
One of the most challenging tasks a family member will face is becoming a caregiver to an aging or chronically ill loved one. As this responsibility often presents itself rather suddenly (and usually without a lot of options), most of us are sorely unprepared for the undertaking. We’re not taught how to be caregivers in school. If we were lucky, we watched as our parents cared for an elderly family member and were able to learn by example. So, of course, without education or experience, we’re going to make mistakes. Lots of them. I certainly did when I cared for my mother.
So, based on my personal experience, research, and interactions with the wonderful family caregivers who have attended my classes at Hope Hospice, I would like to share with you what I consider to be the five biggest mistakes made by family caregivers. Over the course of the next few months, I will elaborate upon and offer suggested solutions for each, beginning with . . .
If you’re like the vast majority of those with an elderly and/or chronically ill parent or spouse, you’ll wait for a crisis to force a decision. It’s understandable. Making decisions about how to provide care for a loved one is difficult and emotionally charged. It’s much easier to think Well, let’s just wait and see what happens. Maybe we won’t ever need to make these decisions. Perhaps it’s not as bad as it seems.
While those thoughts are natural, they’re not realistic. It’s naïve to think that the responsibility of managing care for a loved one won’t happen in your family. After all, we live in a time of unprecedented advances in medicine and technology that has allowed people to live longer, thus they need more care in their advanced years.
When we wait for that crisis to dictate our actions about care, we limit our options and deprive ourselves of the freedom to make informed, well-considered decisions. Thus, as daunting as the task may seem, everyone benefits when we are proactive rather than reactive. It’s only natural to hope for the best; however, anticipating and planning for the time when our loved ones will need care will make the task much more manageable.
The problem is not that there isn’t information out there; the problem is that there is too much! How does one know what’s reliable, legitimate, and accurate? Information overload can be paralyzing. It’s no wonder so many of us wait for that crisis to force us into action.
To help you get started with your planning, following are some of my trusted resources:
This website is one of the most reliable and comprehensive sources of information for those providing care for loved ones. In addition to articles, videos, and webinars on just about every possible aspect of the caregiving journey, the site offers online support groups and strategies to connect with other families who are having similar experiences. The Family Caregiver Alliance is a nonprofit organization serving all income levels.
The website site also has an interactive tool called The Family Care Navigator, which helps family caregivers locate and access programs and services in their area.
The site’s Bay Area Caregiver Resource Center provides access to case management services. Family caregivers can make a phone or in-person appointment to speak with a trained consultant who will assess your particular caregiving situation and assist you with care planning. These services are offered at no cost regardless of your income level, and consultants will continue to provide assistance as long as needed.
This government-sponsored website provides excellent information on every aspect of care planning. It contains articles, videos, and links to other helpful resources. The NIA also offers a variety of print publications to consumers at no charge.
Next Step in Care is a program for family caregivers and healthcare providers that is sponsored by the United Hospital Fund, a not-for-profit organization. The website is easy to navigate and contains helpful resources and videos. My favorite aspect of the website are the downloadable well-designed guides and checklists for the family caregiver.
This book by Sally Balch Hurme (2015) is an excellent resource, especially for those who love checklists. It is well-organized and contains just about everything needed for successful care planning. Find it on Amazon.
This easy-to-read book by Carol Levine (2018) is another valuable one-stop resource for every imaginable component of care planning. Find it on Amazon and Kindle.
Remember that old saying? Nowhere does this apply more aptly than in the caregiving experience. Just when you think you’ve found the perfect in-home caregiver for your husband or a wonderful care facility that your dad loves. Just when you think you’ve remodeled your parents’ home so they can safely “age in place.” Just when you’ve found a primary care physician who really understands your wife’s medical condition, or an attorney whom you trust . . . that’s when the inevitable happens and your loved one’s condition or situation changes.
And, that’s when you need the back-up plan for which you really didn’t plan.
Although we can never anticipate every twist and turn we will encounter while caring for our loved ones, we can reframe the way we think about the situation. It’s important take into consideration that what’s working today may not work tomorrow. Try not to think in terms of finding the perfect solution (it doesn’t exist!), but instead try looking ahead to the what-ifs and have a Plan B in place . . . just in case.
Next month: We continue our discussion about common family caregiver mistakes with a look at tips and resources for building your support system. Remember, caregiving is a team sport!