The WVFC summer-long Special Focus on Caregiving continues with Part Three of a three-part interview with Gail Sheehy, author of the new book Passages in Caregiving: Turning Chaos into Confidence. Here, Gail gives some examples of caregiving pitfalls, and how friends can help.
Let’s take a closer look at women as caregivers, and the sort of turns that the journey can take for them.
What so often happens is, the woman in the family will move in with Mom or Dad for a temporary period of time—she thought. But then it isn’t temporary. Or she’ll move Mom and Dad in with her family, which may or may not work out because her husband and children may feel quite neglected. When it really gets tough is when when a woman becomes a seasoned caregiver and is really good at it, and the person being cared for says, ‘It’s only Bonnie who can move me from my wheelchair to the car,’ or ‘I depend on Joan, she’s my eyes and ears, I couldn’t do it without her.’
It becomes a co-dependent relationship, where the cared-for person believes that their survival depends on this one person, and the caregiver often begins to believe that he or she is saving this person day by day. That’s why I call it Playing God. It’s quite—one feels extremely important and necessary. But the problem is that this is where caregivers tend to get isolated, stop taking care of themselves, stop calling friends, and friends stop calling them because they’re not available. They gradually become depressed, and depression is an illness, and when the caregiver gets ill, you’ve got two people who are going to need care.
So my main mission when I talk about this is to say: Once you get to the second crisis, The Boomerang, this is the time when you really have to reach out to the rest of the family, who may not have been involved because you took it on. Even if they’re long- distance, there are very important ways that other relatives can help.
And there are now technological devices that make it much easier, starting with Skype and different versions of an old–fashioned answering machine, where you can leave messages. Or an email machine that doesn’t need a computer. I think one of the best ways to bring other people in is to have an online calendar that actually shows the calendar of the person who needs care: when they have their doctors’ appointments, when they’re free, when their caregiver has to go away for a conference, or a business trip, or to see a new grandchild. And the accompanying email says, Here are some times when it would be really important for you to visit.
It starts with the caregiver saying, I have a right to ask for this. I deserve to get help for this very important role. That’s where it starts. You yourself—the caregiver—may not want to ask. But your best friend can ask for you. Your best friends can send out the emails and ask for you.
What are some other ways that friends can help a caregiver?
I’ll tell you about a practical thing that we did for one friend with an incurable, irreversible illness. Friends of hers on the East Coast wanted to be helpful to her and her caregiver—her husband—on West Coast. The West Coast friends found a place that makes and delivers food. We all took a week and among us provided something like three months’ delivery of dinner. So her husband wouldn’t have to do that instead of being able to sit down and watch television with her and talk with her and be with her. And that felt really good. And then when that wasn’t necessary any more, we shared the cost of one, two, or three physical therapy treatments at home. If you’re in a position to do it, you can help with expenses like that.
That means you stay in touch with the person, so there’s social stimulation there. And the caregiver is not just waking up every morning thinking, How do I get through this day, with all the things I need to get done, and all the things I need to do to keep myself working and providing for us. Because now it’s just one of you earning for the household.
That brings up the whole financial dimension.
The financial dimension is huge, absolutely huge. Very punishing. Very often I hear about caregivers who have to give up their home because they’re paying for aides to come in and they just can’t afford that, too. And then eventually move the parent in with them to an even smaller space. It becomes very difficult.
So I say, keep your job if it’s humanly possible, because you will need your financial security after this role is over. You’ll need your health insurance, you’ll need your Social Security quarters, you’ll need the social stimulation while you’re going through the caregiving role—in the sense that you have another life, with some meaning, some importance, some productivity. And actually, half of family caregivers do work full time. It’s kind of amazing, but it’s necessary.
If you could boil it down to a phrase or sentence, what’s the message you’d like readers to take away from Passages in Caregiving?
Being a caregiver for a parent or spouse is one of the most universal and least understood passages in our lives. It is also going to be one of the most memorable in coloring the way you think about yourself as a good person. You can make it a gift, or more of a challenge, or you can hide your head in the sand and be left with a residue of guilt. What I try to do in my book is walk you through the journey, so you can see how many different phases it has and prepare yourself for a marathon and learn how to develop a circle of care.
Over the next weeks, we’ll be running videos of Gail talking with caregivers and their families, with introductions prepared by Gail and the WVFC editors.