Q&A: Lessons from facing a parent’s dementia

Many United Methodists appreciate the books of Robert Benson, author of nine works on the contemplative life, including Living Prayer and A Good Life. But he tells a very personal story in his latest book, Moving Miss Peggy (Abingdon Press). It’s the story of his mother’s descent into dementia, and the wrenching experience of moving her from her beloved home to an assisted living community.

Mr. Benson is a graduate of the Academy for Spiritual Formation; he lives in Nashville and leads retreats and workshops on prayer, writing and the contemplative life. He spoke by phone with staff writer Mary Jacobs; here are excerpts.

I read several pages into the book before I realized that Miss Peggy was your mother, and that you were talking about yourself in the third person. Why did you take that approach?

I was trying to tell the story from the perspective of the four of us— me, my two brothers and my sister—and so I was trying to tell the story from a sort of collective way. There was a kind of third-person notion about it all the way through. I didn’t want to feel like I was the only one telling the story. Part of what happened in the whole process was to watch my mother’s courage going through it. Another huge hunk of it had to do with the fact that her children fell in love with one another again. So I was trying to write for us all. That’s why I ended up in the third

Robert Benson

person. And I apologize to all of the English teachers on the planet!

One of the reasons you wrote this personal account was to help readers who may have to take care of an aging mother or father. What wisdom can you offer?

Three things. One is to run, don’t walk. The longer you wait, the worse it gets. Do not hesitate. If you can sense this about your [loved one], run, don’t walk, because next week it will be worse, and the next week it will be worse than that.

Second thing is, part of the reason I wrote the book, most often the stories that we hear about people and families who go through this, well, you only hear the stories where the people have their hands around each other’s throats, and Mom or Dad has to be dragged out the door kicking and screaming. What we discovered was, even though the four siblings are all living different lives, we could actually come together and do this. You didn’t have to be afraid of each other or to fight each other. I wanted to tell at least one story about a family who got together and held hands and took care of their parent. I thought it might encourage someone to do exactly that.

The third lesson is that is that you need professionals to help you. People who specialize in elder law care, in insurance, in long-term health care. I’m not kidding you. The 70 pages of legal documents we looked at the first day we sat down with the elder law people, they were blinding. You really need professional help to wade your way through this. We were fortunate. My mother’s sister worked at an elder law care practice. We just got lucky about that. We didn’t do anything smart. When the time came, we sat down with them.

Based on what you’ve experienced, any thoughts on how to take care of yourself if you’re the person who is caring for an elderly loved one?

Be very quiet for a long time in the morning, whatever that looks like for you. Spend some time being very quiet in the morning before your brain gets cloudy. I’m an Episcopalian so I say the Office. Take some time to be very quiet. Give your heart a chance to re-gather its energy.

Also, I think you have to be willing to say to people that you love, “This is really, really killing me. This is hurting.” If you don’t say it, then they can’t put their arms around you. And you need that, you simply do. I’m going to watch my mother die twice. I watched my father die in 1986. That was very hard, he and I were great friends, but when he died, then he was gone. I’m going to watch my mother go twice. I watched her go a month ago and I’m going to watch her go again. It’s OK to raise your hand and say, “I need you to put your arms around me.” I think that’s part of the survival and the emotional health.

Dealing with the decline of an elderly parent can be difficult. Have there been any unexpected joys?

My sweet wife said once that, “The secret to this is to keep your eye out for the essential Peggy.” And from time to time, you get to see the essential Peggy. The book begins when we decided we had to have Miss Peggy move and then ends when she moves into the assisted living apartment. Toward the end of the book, there’s a story about Miss Peggy singing show tunes. That’s one of my favorite stories about her of all time. And I’ve known her for a long time. She’s a funny woman.

In watching your mother dealing with dementia, did you ever ask God: Why?

When I use this pronoun your eyebrows will go up, but, I have no idea why She does that. I don’t think She does this. I don’t actually believe that the one who made us is figuring out what is going to happen to us tomorrow afternoon. I was raised in church all my life. I don’t believe that the one who made us is sitting around figuring out what is going to happen to us tomorrow between breakfast and lunch. If that’s the case, She should work on something better than that.

I’m saying “she” very intentionally now, because I am in a place in my life and in my family’s life where I am seeing and feeling and sensing and holding onto some sense of the nurture of God that I had not noticed before. And it feels like Mother, it doesn’t feel like Father, even though my father was a lovely, gentle man. So it’s not a reaction against, it’s being drawn toward another window. I’m very happy about it. I like talking to Her.

This is a story about your siblings as much as it is about your mother. Why did you all work together so well?

We’re pretty good people. We all live different lives. We’re all very different people. My sister is a painter, my brother is an accountant, another brother is a preacher, and I’m a writer. What happened was we ended up at Mom’s house and started telling stories and laughing and we fell in love with each other. We had forgotten how much fun it was to be one of Bob and Peggy’s kids. That’s all there is to it. We fell in love again.

At one point your mother said, “You do know I could not bear to move to a home, don’t you?” and she ended up in assisted living. How’d you deal with that reluctance on her part?

I told her, “You have to move. You can’t live here by yourself anymore.” I did not hesitate. I looked her right in the eye and said, “You can call it a ‘home,’ but we’re going to find you a nice place to live. You can’t live by yourself anymore.” We’ve never referred to it as a “home” or assisted living or anything. This is the apartment where Miss Peggy lives.

Many of us will face, sooner or later, the decline of our parents. Any wisdom you can share about how to prepare for that spiritually?

From a spiritual standpoint, I think you walk into this like you walk into anything else, whether it’s your children, a failed marriage, a difficult business position, being fired, a career change, a disaster in your hometown. The proper spiritual posture is to open your hands, hold your arms out very wide, and hope you can feel the breeze of the Holy Spirit as it passes through your fingers.

Mary Jacobs

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