Becoming a caregiver is not something most of us plan for, go to school for, or train for. When I became a full-time caregiver, I had no idea of how to do it well or how to deal with the difficulties I encountered. I expected to find lots of help in Florida where the population is decidedly on the gray side. Although I found a few sources, websites were confusing and hard to negotiate, and agencies were even more confusing and difficult. What I really wanted was to sit with experienced caregivers who could tell me what to do. I talked with the counseling pastor at my church, and as often happens when you point out a need, he agreed and suggested that I start a group. The short version is that after much thought, prayer, and the agreement of another couple to partner with us, David and I became facilitators of a caregivers’ support group. Following are my opening remarks from our first meeting:
When I talk to people about a caregivers support ministry, one reaction surprises me. Some people are uncomfortable talking about the difficulties involved in being a caregiver. A common response is, “Oh, we’re doing great. Mom (or Dad, or Aunt Jane or Grandpa Joe) is wonderful, and I have help from my husband (sister, brother, cousin).”
But as we continue to talk about our situations, I hear things like, “It’s hard to go out to dinner or a movie or a party without her, because I feel bad leaving her to eat alone.” Or maybe it’s “We have a running battle over the thermostat setting” or “Some days I can’t seem to do anything right.”
There is often some resistance to becoming involved in a support group. Somehow it feels disloyal to admit that you need help in taking care of your loved ones. One lady expressed it this way, “I went to a support group one time when Mother was still living with us, but I never went back. I felt like I was sneaking out on her.”
Did any of you have a hard time getting things arranged to get here tonight? And do any of you feel guilty about being here? Tonight I’d like to encourage you to give yourself permission to take care of yourself.
If you fly very often, you’re probably like I am. When the flight attendant makes the
safety announcements, you tune out. But there’s one that is very important to caregivers. “In the unlikely event we experience a loss in cabin pressure, oxygen masks will drop down from the panel above you.” After explaining the operation and use of the mask, you’re told that if you’re flying with a child or someone that needs assistance, you should put your mask on first and then help them. Why? If you’re trying to put someone else’s mask on first and, in the process, you pass out from lack of oxygen, then you’re both in trouble.
I’m sure we’ve all heard stories of missionaries who work in extremely depressed areas where people are starving. In the ultimate act of altruism, the missionary starves to death after giving their food away. This sounds very noble, doesn’t it? But my question is this. After they’re gone, who works with the outside agencies to bring in more food? And who tells them about the love of Jesus?
Some caregivers are like these missionaries. They give everything they have to the person they love to the point that they have nothing left to give. The result is burnout, health problems, and worse. I’ve been told by people who work with the aging that it’s not uncommon for the caregiver to die first, simply because they fail to take care of themselves.
How can a caregiver take care of himself or herself? That’s a question that each of you will have to answer based on your individual situation. But I’d like to offer a few suggestions.
First, arrange for some privacy. Our first experience with Mom in our home came a couple of years ago when Dad was in the hospital for 5 weeks. She would wake up in the middle of the night after having a bad dream and barge into our bedroom, turn on the lights and look for Dad. When I shared this with Aunt Fay who cared for my grandmother for many years, she said, “Linda, it may sound mean, but get a lock for your bedroom door and use it.”
A couple we knew in Texas took his mother into their home after his father died. They sold both homes and bought something that suited their needs. It was a beautiful home, and when I got the grand tour, she explained, “Mom, has her own bedroom and bathroom downstairs. The rest of the bedrooms are upstairs, and we also have a sitting area up there with a TV and stereo. We did that intentionally. Mom can’t negotiate the stairs, and sometimes we need to get away.” It was an arrangement that worked well for everyone.
Next, do some things just for you – take a bubble bath, read a good book, take a walk. David and I enjoy walking together, but it was sometimes hard to find the time. Shortly after moving to Florida, we decided to get up 30 minutes earlier so we could walk before Mom and Dad get up. We enjoy the quiet time so much that we even get up early on Saturday.
Seven years later, I’ve learned a lot more about caregiving, and I’ve found a lot more sources for help. A recent article in USA Today told about a new public service announcement campaign from AARP and the nonprofit Ad Council to raise awareness about caregiving and how it impacts families. It focuses on educating caregivers about where to turn for help. AARP has a one-stop starting point for caregiver resources for information and services. The article also gave websites to help locate care providers and respite services and a caregiving hotline (877-333-5885) for those who are less than tech savvy. Wherever you get help, it’s important to know that you don’t have to do it alone. And it’s important to remember the last thing I said in my first caregiver support meeting:
Going back to what I said earlier, please give yourself permission to take care of yourself. As a caregiver, self care is not selfish, it is essential. Remember to put your own oxygen mask on first.