November is National Caregiver’s Month and this year the theme is “Caregiving Around the Clock.” This has been a topic of conversation within my own family recently, so thought it might be helpful to have a “cut to the chase” post for caregivers outlining some “take home points” to consider:
You have the ability to change but you can’t change them: How you respond to situations and to others is up to you. Spending time trying to change others' behavior-no matter how good you think it is for them- leads to incredible frustration for all involved. Keep in mind that just by changing how you respond can have a greater impact than you may realize.
You aren’t alone. There are approximately 40 million Americans who are currently active caregivers. Isolation doesn’t make you better at your job. It makes you weaker and more vulnerable. Join an on-line or in person support group. Check your local hospital, health care center as well as local community resources for in person caregiver support groups. For on-line groups, check out:
You can’t do it all. You need breaks from caregiving. Many condition specific organizations (e.g. Cancer Society) offer respite care. Take advantage of them. Some insurance companies also offer respite care options. Ask family and friends for help. Check out ACaregiver’s Guide to Creating a Respite Care Plan.
You need financial support. Keeping a job not only provides financial stability but it also can be a way to stay connected with the outside world. However, if you find you need to be a full time caregiver, check out options for reimbursement for your time. Depending on the state, Medicaid may provide it. Some insurers will cover it, particularly long term care insurance. Seniors who have life insurance policies can use them to pay for care. The Veterans Standard Medical Benefits Package may be used to provide homemaker or other care as an alternative to nursing care. Finally, family members need to kick in if at all possible either to share the load and/or to help with costs. If this becomes a major problem, don’t try to settle it yourself. This is when a professional mediator is helpful. Check out Can I get Paid to Be a Family Caregiver?
You are not an extension of the person you are caring for. Take good care of yourself as much as possible as you are more than deserving of it.
You may need to make decisions that you never thought you’d need to make but there are resources to help you. Whether it’s putting your charge in an inpatient long term care setting-such as nursing home, or making difficult medical and end of life choices, the book Hard Choices for Loving People by Hank Dunn is very helpful. Check out the online video of Dunn’s one hour lecture highlighting the contents of the book.
You don’t need to put up with platitudes- e.g.“I know just how you feel.” There are a long list of pat phrases that people say to caregivers. Well meaning though they may be, they can make you feel bad about yourself or really piss you off. As much as possible, let it go. But.... here are a few responses to consider
Call if you need help: Make it easy for people who want to help you do so by setting up a Lotsa Helping Hands website, where you can identify what you need and people can register accordingly. This is a free site and does the work for you. If you don’t have the time or have concerns about setting up such a site, ask a friend or family member to do it for you. In some ways it’s better if someone does it for you but definitely be a co administrator. When someone says call if you need help, say Register on the Lotsa Helping Hands website and you’ll know what and when I need help.
I know just how you feel: Sometimes peoples experiences with caregiving can be useful so ask them pointed questions about concerns you may have without giving them time to wax poetic over their time as a caregiver.
God doesn’t give you more than you can handle: Don’t let this make you feel inadequate, less worthy or in some ways unfaithful. If you feel like a snappy comeback, you can say something along the lines of what Rabbi Gerald Wolpe, also a caregiver, points out. Mrs. Job, the caregiver, is disdained and disregarded, and the new children given to Job do not replace those she has lost.
I just couldn’t do what you’re doing. That’s easy, no one is asking you to do it.
You are a saint. You are like everyone else dealing with frustration, depression, anxiety, exhaustion and fear. The next time someone tells you that “you’re a saint,” tell them the halo has slipped and what you really need is help.
You worry, but chances are in your favor that your worse fears wont happen or if they do, they aren’t as bad as you fear: In fact the data shows that 97 percent of what we worry over is not much more than a fearful mind punishing us with exaggerations and incorrect perceptions. As Michel de Montaigne noted 500 years ago, “My life has been filled with terrible misfortune; most of which never happened.” Caregivers worry about a host of issues. It’s normal but don’t over indulge.
You need your sleep: Sleep deprivation is the worse. Check out 4 Tips for Better Sleeping While Caregiving from AARP
Your best is more than Good Enough: You will make mistakes, be upset with yourself and even feel ashamed for how you handled a given situation. All part of the process. Check out the post Your Best is More than Good Enough
Essential Websites for the Daughterhood Journey (caregiving): Good break down of websites for caregivers by topic. This site is run by Ann Tumlinson who has spent the last two decades working on improving how America cares for its frailest, most vulnerable older adults.