Talking With Barbara McVicker: Caregiving in a Dysfunctional Family

The coauthor of Stuck in the Middle: Shared Stories and Tips for Caregiving Your Elderly Parents talks about caring for difficult parents.

Barbara McVicker has apologized to her children in advance for all the terrible things she expects to do when she's elderly and resisting their care. When she was a caregiver to her own parents for ten years, McVicker compiled a list, "I'll Be Damned if I'm Going to Do This to My Kids," which evolved into the book Stuck in the Middle: Shared Stories and Tips for Caregiving Your Elderly Parents, coauthored with her daughter, Darby McVicker Puglielli. On her website, McVicker has posted: "Even great families become dysfunctional while caregiving for elderly parents."

So what happens if your family is pretty dysfunctional to begin with? As a child, McVicker remembers lying in bed at night, trying not to cry when her stubborn, demanding mother and cruel, alcoholic father argued. As an adult caregiver to her parents, she recalls them humiliating and yelling at her while she ran ragged doing chores she would have liked to hire out, such as cleaning and mowing the lawn, because they didn't like the way other people did them.

McVicker admits that caregiving for her was less an act of love than one of duty. Her parents, she writes, "were not warm and fuzzy people. And caring for them was not a warm and fuzzy experience." She persisted, however, as her parents needs evolved, and ultimately she gained insight and even pleasure from the experience.

The McVickers' book showcases the stories of eight other caregivers, some of whom also had difficult childhoods -- one woman's mother was an alcoholic who left the family when her daughter was 12; two others were beaten by their mothers. One man openly admits, "I never loved my mother." Each of the interesting narratives includes useful information about how that person dealt with caregiving challenges on a practical and an emotional level. Also sprinkled throughout the book are tips on everything from filling the silence during parental visits to picking nursing homes to finding resources such as the Alzheimer's Association's Safe Return program, which provides help when a person with Alzheimer's wanders or becomes lost.

Most remarkably, the caregivers' stories illustrate how people who became members of what one calls "an invisible club no one wants to join" all gained much from the experience of caregiving for a parent and were even able to resolve harsh issues from their childhoods that had continued to plague them as adults.

The title of this book comes from the day McVicker -- who struggled to combine child rearing, parental caregiving, and a high-pressure job -- felt herself truly "stuck" after changing her grandson's diaper one minute and her mother's the next. Now a consultant and speaker on eldercare and the challenges facing the "sandwich generation," she spoke to about her own caregiving experience and her book.

Why did you write this book?

There were books on very specific topics -- The 36-Hour Day is the bible for Alzheimer's -- and then cute little ones about how Mom was so wonderful to me and I just loved taking care of her. But that wasn't what I was hearing from people. I felt that caregivers needed two essential things: some kind of support group, so that's why these are true stories about caregiving; and the essential facts, so that when you're initially going through it, before you've got specific diagnoses, you can just get the lay of the land.

As we care for our parents, I think we begin to get panicked that we may do the exact same things to our kids. As a speaker, if I get nothing else across to my audiences, I want them to know that we need to be prepared early. And the nicest gift we can give our kids is to get organized now and to have the conversation sooner rather than later.

Your parents fought a lot when you were a kid, and even more after you left home. Why do you think that was?

I think as people get older, they don't "gate out" anything. If it comes into their mind, they say it. In their house, they separated -- Mom to the kitchen and Dad to the room that was their office and TV room -- and I believe they spent huge hunks of their time in separate spaces. And how often did they sit down with each other for dinner?

The only negative part about moving my parents into a continuing care facility -- and they started out in independent living together -- was that they abutted each other more often because it was a smaller space. And in a residential facility, you go down to dinner, and to look right, you sit with your husband. So I think the tension got worse because they couldn't get away from each other.

What was it like for you to be thrust back into their arguing on a day-to-day basis when you became a caregiver to them?

There were days I almost didn't want to open the door. Caregiving is hard enough, keeping all the plates in the air, being stuck in the middle of career and kids. And then when Mom and Dad are in open battle, it absolutely drains you emotionally because you're trying to be the good adult.

Were you able to do anything to make it easier for yourself?

I think that's the problem with caregiving: At the time, you're so busy reacting, you don't really think about what's best for yourself. I remember driving away from their house one day, and I thought, "You know, I deserve something special today." So I went through a list of things of things I could do. I could go shopping -- but I don't like shopping. That's not something I do even on good days. Then I thought, "Well, I could get ice cream. No, I'll have to exercise three hours longer." So you know what I did for myself? I stopped and got a decaffeinated coffee. That's how bad it was.

How did you get your parents to move?

I really was hesitant to push them into some of the things I thought they needed safety-wise, and I really should have been more insistent. One of those things was moving them into a residential community, because they were so adamantly against it. Then usually it's some big crisis that forces you into some other kind of decision -- in my case, my father spent $68,000 in a telephone scam. At the time I was so angry, but it pushed them into making choices that might have been delayed for many more years. So in some ways I look back and think, "I guess that was a blessing."

As adult children, we dread moving our parents -- it's almost like when your kid is two years old and you decide you've got to take away his blanket, and you think it's going to be horrible. And maybe it is for a day or two, but then he gets used to it.

So for the most part, assisted living was good for your parents?

Once my mother got in and acclimated, it was the best four years of her life and my life.

Caregivers can be so busy paying bills, cooking, and cleaning, you forget about all this other kind of interaction that your parents need. When she moved, they got her diabetes under control and she had interaction, social networking, and the staff there all day long making her use their speech or walk places.

When my parents were in their own home, maybe they took a shower, maybe they didn't; maybe they got dressed, maybe they didn't. In a residential place, every day you get up, get dressed, use your speech and social skills, and do exercises, both mental and physical. They bounce a helium balloon around in a circle -- which is not just exercise; they're all laughing. And my mother ended up with a new best friend. How wonderful! So once she went into assisted living, we took walks, we giggled. I could just be with her, and in many ways, that's just what she had wanted from me.

It seems that her new living situation and her dementia, which softened her personality, helped you resolve your relationship with her.

Definitely. I think that caregiving has the potential, even with relationships that haven't been wonderful in the past, to kind of transform everybody. It's a chance to show unconditional love, a chance to break cycles within families. I think it's possible to get many positive things out of caregiving even when your background hasn't been the best.

When your dad went into a nursing home, you were pretty indifferent toward him after all his years of verbal abuse and negativity toward you. How did you get past that?

Even as my parents were in their late 80s, I kept thinking that I could have a Beaver Cleaver family -- that if I tried hard enough, these things would resolve. One day I just came to the conclusion that it was never going to happen. Just by growing older and having my own children, I think I realized how much emotional energy I was giving to him by being so angry, and that I had to do something. I needed my energy for other things that were much more productive.

Since I was never going to get an "I'm sorry" from my dad or my mother, I had to forgive them within myself by just understanding that they were sad souls and that I needed to let go of it because it wasn't good for me. So that's what I did. It wasn't overnight. For a while, I had to keep saying a mantra over and over again: "Just let it go, just let it go."

You write that the more difficult your childhood relationship, the less likely you are to firmly separate from your parents. This, in turn, can make caregivers more likely to become abusive. How did you handle that?

There were many times that my Dad, particularly, would say or do things that were hurting me. As a child, you have to stand there and take it -- if you walked away, you would've gotten slapped or something. But as an adult, I could set some kind of boundary and realize that it was his problem and that I had the right to say to him, "I'm not going to stand here and take this. I'm going to leave. I'll come back tomorrow because I love you, but I'm not going to stand here and take it." I tried to do it in a very calm voice. The first couple of times he was amazed. And after a while, I think he thought, "Oh, my gosh, she means it."

Had you been able to do that before you were a caregiver?

No. I didn't even know there was such a thing as boundaries. I took in everything.
It was pretty late in life when I realized that all those things he said weren't necessarily true. And it was so freeing to realize that I could set up boundaries. Those are pretty adult concepts. So I came to them late, but I really had a good chance to practice what I'd learned with my parents.

Were you nervous the first time you did it?

Yes, but that's part of why I said, "I'll be back tomorrow." Some families need to get help -- a mediator, a negotiator, a psychologist. Or hire someone to come in and take care of the some of the duties. I think my mom and dad kept firing the people I hired partly out of manipulation -- if I had to be there every day taking care of them, I was wrapped up in their lives, and it was a way to make certain they didn't lose me. Many times they were helpless about things that they could have done themselves, but they were very smart -- their helplessness kept me tied to them.

Does "breaking the cycle of dysfunction" have an impact on your relationship with your children?

I used to come home and take them in my arms and say, "I want you to know now how much I love you and how sorry I am for some of the things I'm going to do in the future." And because they were around watching me go through this, many times they would just hug me when I was crying. My daughter coauthored the book, and my son was my Web master, so the kids really were a part of this. I am very hopeful that they learned something from it, and that I learned something from it.

Why wasn't your sister involved in caring for your parents?

She was in the middle of caregiving for her in-laws, and, in fact, her in-laws moved into her family's house with them. She was stuck in the middle in another state, so it wasn't from lack of wanting to help. The nicest thing she did for me was to always support me. And she thanked me all the time.

When you speak before audiences of male and female caregivers, do you find that they have different concerns?

I believe that the face of this is changing. I think that more and more men will be primary caregivers to their parents. But in my audiences now, most men either have a helpmate in their wives or in reality she is the primary caregiver.

In terms of issues, I think we ask different questions. The men I've met tend to be more like, "Let's get this done," while the wives are saying, "What does Mom need?"

I speak a lot to human resources departments because 44 percent of caregivers are in the workplace, so a lot of HR departments are seeing this as part of their wellness programs. In fact, there's already a term, "presentism," which means that employees are at their desk, present, but they're not really there because caring for Mom and Dad is such an overwhelming distraction.

You were a classic "sandwich generation" caregiver. What do you wish you had done differently?

I should have given myself some days off -- physically and mentally. I was there every day because I thought that's what a good daughter did. I never said, "I'm not going to let caregiving encroach on my mind today. Today is my day to be with my nuclear family or my day of mental vacation. Today is my parent-free day." I wish I'd felt I had the right to do that. Between having them in my mind 24-7 and being physically there on a day-to-day basis, I lost energy and zeal for life. When we look back on it, my kids say, "Mom, you quit laughing."

Despite all the difficulties in your relationship with your parents and in caring for them, you and the people in your book turned caring for parents into very positive experiences. To what do you attribute that?

The human spirit. I've probably heard the stories of thousands of caregivers now, and it's remarkable to me how ordinary people do extraordinary things -- sometimes out of duty, sometimes because there is a void and somebody has to step in. People can rise above their own history and maybe understand why their parents did what they did.

It was surprising to me how many people thanked me after an interview because they said nobody had ever listened to their stories. At cocktail parties, people don't really want to hear about you diapering Dad. And I think that's where a lot of the isolation comes from. It's fun to talk about your kids because tomorrow's going to be better, but realistically, with Mom and Dad, tomorrow could in fact be worse than today. So I felt that it was quite an honor to be able to listen to people's stories. Maybe that's something those of us who have been through it can do for each other -- just listen.


over 7 years, said...

I have not found any stories about adult children caring for parents that were abusive to them as children. I felt more connected knowing I was not alone in this caring for parents journey. Thank you.

almost 8 years, said...

reference to her book, which I will read. hearing about "presentism" in the workplace, that's me. hearing about taking a day out for myself.

over 8 years, said...

Validation of the need for a mental break. I do not get one even when my husband is home.

over 8 years, said...

I am a caregiver and the article was great! I am experiencing many things she touched on. Thank you.