Many Americans have and will take on roles as caregivers for an aging loved one with declining health. In this role, they're often doing the job of a professional caregiver, but they don't get paid and they're juggling a million other things. Most often, these caregivers are adult children caring for an elderly parent. If you've ever been a caregiver for an aging parent or friend, you know that it's a big responsibility — and often a stressful one. Add that to the demands of the holiday season, and things can become downright overwhelming.
We spoke with Judith Henry, a woman who understands the stress of being a caregiver. She also gets just how hard it is to switch roles with your parents and become the one caring for them. Judith talks about her experience taking care of her aging parents and gives her advice for coping.
Q: How long were you a caregiver for your parents?
A: For a total of six years. During the first year, both my parents needed assistance. My mom was diagnosed with breast cancer and my dad had a bad fall. When he passed away, I helped care for my mother for another five years.
Q: What were your responsibilities as a family caregiver?
A: I held both my parents' durable powers of attorney and their health care powers of attorney. This meant I managed their financial affairs and acted as their health care advocate.
Q: Your parents lived 70 miles away from you. What was it like being a long-distance caregiver who worked full time?
A: It meant most of my visits were on the weekends. When they had surgeries or hospital stays, though, I drove over during the week to monitor their care. I was lucky to have an employer who was very understanding, but there was always work to be done before I went out of town.
Living almost two hours away also meant that everything I needed had to be with me at all times. My purse became a caregiver's toolbox. It contained my parents' legal and health care documents, their do not resuscitate [DNR] forms, and their medical histories and drug lists. I also had a suitcase packed with my own things. It really brought home the need to be well-organized and to prepare ahead as much as possible.
Q: What did you learn from your experiences caregiving?
A: How a parent's poor health can affect the whole family. This is often the first time everyone comes together for a common cause. But each of us has a different parent/child relationship and mixed opinions about what's best for our parents. This can prove challenging sometimes. So, it's important to be understanding of everyone's beliefs.
We can't always make everything better for a parent despite our love and efforts. Sometimes just being with them is the most we can do.
Q: Being a caregiver can be stressful. How did you manage your stress?
A: Not very well, sometimes. I did find writing to be very helpful. Venting on paper was a great stress reliever. Writing also helped me to better understand myself and others.
I tried to keep a sense of humor about most things. It really can be one of a caregiver's greatest allies. For example, I used to joke about having to always change the ringtones on my cell phone, because every time it rang, my body would brace for bad news. Pavlov's dogs had nothing on me.
Q: Does holiday stress make caregiving more challenging?
A: In general, holidays can be stressful. We seem to expect more of each other. With a parent in poor health, it can create even more stress. You wonder if this will be your last major holiday with them, so you want everything to be perfect.
One year, my mother was in rehab over Thanksgiving. We took the meal to her along with lots of small gifts. There was no beautifully set table. We ate on paper plates with plastic forks and spoons, but it didn't matter. We were grateful for the time spent with her.
Q: Do you have any advice on how to connect with your parents while you're caring for them?
A: As caregivers, we're always busy putting out fires and dealing with health care crises. It's easy to forget our parents have hopes, dreams, and a life story that happened well before our time. One of the greatest gifts you can give one another is to ask your mother and father questions about their lives. For example, what are the values and beliefs that got them through tough times? Or what is the most important lesson they have learned? Even a parent with some level of dementia can enjoy talking about the past.
Conversations with your parents about end-of-life care or making funeral arrangements together can also bring you closer. I treasured the experience of helping my mother plan her memorial service. I think parents often want to talk about these things, but they worry that a child may not be able to handle it. And since they're in parent mode no matter your age, they put their desires aside. It's vital to remember that it's about them and not about us.
Q: What resources are available to caregivers?
A: Other family members would be my first suggestion. My sister, who lives out of state, visited when she could and provided much-needed emotional support. She was also great at researching medical conditions. That helped me when I was talking to doctors. My brother and mother shared a house during the last few years of her life. His presence and the help of professional caregivers allowed my mother to stay in the home she loved.
Keep a journal or find a caregivers' writing group. Writing allows you to express stress and anger on paper rather than at people. It can help you understand the emotions that you're feeling. Writing can also be a tool for processing different kinds of loss. This can be a physical loss, but also the loss of the life you had before caregiving. Caring for a parent with dementia can also create feelings of loss. It occurs when their personality and behavior are no longer familiar to you. This happened with my own father, and writing about the experience helped me a great deal.
Online and local support groups are an option. They can focus on different aspects of caregiving or the medical treatment of certain illnesses or diseases. You may also find help by checking out local hospitals, nursing homes, or assisted-living facilities.
Look into community services that will transport a parent to and from doctors' appointments. See if there are adult recreation centers in your area where a parent can spend a few hours making art or playing chess, cards, or Scrabble. It's more than okay to give yourself a break.
Q: What advice do you have for other caregivers?
A: Don't try to be perfect. You can't do it all. Feeling anxious and resentful sometimes does not mean you're a bad son or daughter. Realize that caring for your parents can affect you in many different ways.
Caregivers can find it difficult to seek help. They may feel they're the only one who understands a parent or can take care of them. They may worry that others will judge them for not caring enough. They may wonder if thinking about their own needs seems selfish. Several years ago, I gave my mother a throw pillow with a picture of a cow lying on its back with all four legs up in the air. Written underneath, it said, "I'm fine." My key advice for caregivers: Don't be the cow.
Q: Is there anything else you'd like to share?
A: Caregiving, even when it's done with great love, isn't easy. You don't need to be an expert in elder care, estate planning, or family counseling to help your parents. It takes a willingness to show up and do the work and courage to discuss difficult subjects openly. You also need to stay well-informed before and during the experience.
Take steps now to minimize the regrets that seem likely when a parent passes away. Use these three phrases whenever possible: "I love you." "Thank you." "Please forgive me." You will be amazed at the difference they can make.
For more information about caregiving and stress, please see our fact sheet on Caregiver Stress.
The statements and opinions in this interview are those of the interviewee and do not necessarily represent the views of the U.S. Department of Health and Human Services' Office on Women's Health.