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FROM THE EDITOR'S PEN / The Story of Joseph / Editorial List

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Gary Barg
The Story of Joseph

I got an email from my friend Joseph yesterday. We were inseparable friends way back in the early 80s when we worked together in Miami. He moved to New York after that. He and his wife Mary would kindly lend me their couch when I started Today’s Caregiver magazine in the mid-90s and was in New York for business. Two years ago, he joined us at the Treasure Coast Fearless Caregiver Conference where his mother and sister Maria live. Now his mom spends about half the year in Florida with Maria in the house where they grew up, and half the year with Joseph in New York.

Joseph’s story:

My mother is back here now… for six months of my turn of caregiving to relieve Maria. Mom is now 96 years old, has dementia, is hard of hearing and understanding, living with COPD, and a patient of hospice. Yet, she shares a moment now and then of clarity and wit. Upon our arrival from the airport. Me: “Mom, do you know where you are now?” Mom: “The question is, Joseph, do you know where YOU are now? I happen to be in Manhattan.” It hard to describe the feeling you get from laughing with her in the car, then to watch her incessantly folding and refolding a Kleenex for five minutes. If I interrupt her, she responds by saying, “Let me finish this first.”

Somehow, we make that work without too much upset to our mother. She has spent so much time in New York over these 27 years I've been back here that this has become her home as much as Florida. So we're fortunate the transitions aren't traumatic. But the travel itself is a bit upsetting… she gets confused with the hustle in the airport, security, wheelchairs and bathrooms. And now we have to travel with the portable oxygen concentrator in addition to the wheelchair assistance, but JetBlue gets us through quickly.

When we returned to Florida in July, she woke up on the second day terribly confused, and in a panic over a sudden realization of memory loss. She told me, "I remember this house, but have no memory of living here. Where am I and where did I come from?" I asked her, "Mom, do you feel safe, secure, loved, comfortable, and cared for?" She answered, “Yes.” I then told her, "Well, you have more than most people do and we only have the moment right now anyway. You are in Florida now after being in New York for six months." It seemed to squelch that initial panic.

Maria and I now both know how stressful caregiving is. It's non-stop every day, many times a day. When Mom goes back to Florida, I suddenly don't have to worry about meals or time or anything except what I want to do that moment. Mary and I are easy with each other so we do what we like. But when my mother is here, I suddenly have to think about someone else and it's stressful. We are both helping Mom with medicine time, showers, layering her underwear with liners, telling her when to wash her face, doing her dentures, grooming her, balancing her diet to maintain weight, waking up and checking that she has the oxygen on properly, washing her clothes, dressing her to match clothing and earrings properly…the list is absolutely endless. Whatever I do for myself, I also have to do for her now. But she is slip-slip-slipping away. It is a slow grief of loss and is very strange. I'm guiltily relieved when she goes back to Florida; I'm overwhelmingly stressed when she first arrives. Mary is commuting out to Long Island at least a few times a week to care for her father… so I do have her understanding of the invasion in our little apartment world.

So Maria and I have this caregiving to share. But I know that Maria has it much worse than me… she is depressed and has a very solitary life…hasn't gotten sick and tired of being sick and tired yet…so my mother is filling her life with purpose. I don't need caregiving for my purpose because when our mother is not here, there STILL aren't enough hours in the day to do what I want to do. Maria will be in a vacuum when our mother leaves us. I worry about that. This caregiving is tapping something caring in me I didn't think I had; but it also tells me that I only have so much energy and tenderness for it. Sharing the care is vital for both of us in different ways.

As we all know by now, there are no perfect caregiving scenarios. Even when families work together in a team, each caregiving member of the family has their own story to tell and their own needs to be met. The only truth is that we need to learn from each others’ stories, since “Once you’ve seen one caregiving situation, you’ve seen one caregiving situation.” The trick is to figure out how you can help (if possible) and what you can learn from the story being told.


Gary Barg

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