Engage: Blog

Shoshanna Sofaer | Mar 2013 | 0 COMMENT(S)

My husband has Parkinson’s Disease.  That short sentence represents a remarkable change in the challenges and choices of life, for me and for him.  I have become a caregiver.  Some might say, what do you mean, you are a caregiver?  You have 24/7 home health aides in your house; how much more “caregiving” is there?  Or, you have a full-time job that keeps you very busy, how can you take on another full-time job?  The reality is that 24/7 coverage or not, busy or not, I still have lots more responsibility than I used to for my husband’s quality of life, and my own.

As a caregiver, I am terrified of falling into the slough of despond.  It becomes especially important to find and sustain a part of life that reflects continuity and pleasure.  For both of us, food fills the bill.  Not just eating it but the shopping, the meal planning, the cooking, even the clean up.  Not so earth shattering, huh?  Pretty ordinary stuff, right?  But.  Continuity.  Pleasure.

My husband and I have shared a love of good food and wine from our first date, when I unknowingly suggested we go to a restaurant that was a favorite of his.  I love to cook; he loves to eat – a marriage made in heaven.  I cook quite well; his first wife (deceased) also cooked quite well.  In point of fact, he has been spoiled rotten when it comes to food.  He has never learned to do anything in the kitchen but boil water, make scrambled eggs and sandwiches, and do a little “sous-chef” work like peeling and chopping.  But he did learn how to shop, and when we first began living together in New York City, since he was retired and I was working, he did most of the shopping.  He loves fish, which we will  only eat when fresh, one or at most two days after it is bought.  Thus, he did almost daily shopping at one of three terrific food stores nearby.

Food is an area where some things have changed and some have stayed the same.  He cannot do daily shopping any more as his mobility is too limited.  For many reasons, we have had to get help for him, and these wonderful women, and our housekeeper, do most of the shopping now.  Once or twice a week, I get to do it.  I love grocery shopping, always have.  The colors, the shapes, the scents, make me happy.  I love getting to know folks in the stores, from managers to check-out clerks to delivery guys.

I have had to train our companions and housekeeper how to shop for us.  For example, how to find one avocado that is ripe for tonight and another that will be ripe for tomorrow night, how to turn over the little package of raspberries to make sure there is no mold on the bottom, how to ask Frank, the head of the fish department at the store with the best fish, what we should and should not buy today, and what can hold until tomorrow rather than getting cooked tonight.  And probably most important, how to make sure Frank the fishmonger knows how much we enjoyed the last fish he sold us.  My husband used to do all this.  I do not sense that he notices not doing it (although he still loves the chance to buy dessert and visit Frank).  But he does care about the shopping.  He would definitely notice if the quality of the ingredients went down or if he thought our relationship with Frank was going down hill.

You will not be surprised to know that my husband is picky. He will eat almost anything, but it has to be just right.  He can tell the difference between a home made chocolate dessert made with 70% chocolate and one made with 62%, or for that matter 72%; only the 70% is “just right.”  That has not changed.  What has also not changed is that food is a reliable source of good feelings for both of us.  A source, for him, of pleasure, in a life where so many pleasures have been taken away.  A source of pleasure for me as well, but also of a sense of mastery in a life which daily slaps you in the face with the realization that the one you love has this incurable degenerative disease and there is nothing you, he or anyone can really do about it.

Once, we nearly lost food as a stable positive element in our lives.  My husband started having great difficulty swallowing.  Do you believe that in NYC there are “swallowing clinics” and “swallowing therapy.”  Yep, there they are.  They didn’t help.  Dinner time conversation ended because he had to spend so much time chewing and swallowing and turning his head to the right (why the right?) with each swallow.  We thought it was the Parkinson’s, affecting his swallowing muscles.  Turned out, praise be, that it wasn’t.  He had an odd little “diverticulum” with it’s very own name, Zenker’s, in his esophagus.  He needed, and got, a thirty minute surgery to slice it open and staple the pieces to his esophagus.  How do they think of this stuff?  How do they actually do it, in thirty minutes, through his open mouth?  I could tell you scary stories about health care, but this was your classic modern medical miracle.  The result was that soon we were able to enjoy food, enjoy dinner, again.

Why is this so important?  Why is food, which we all take for granted most of the time, such a core asset in our lives?  As a caregiver, I work hard to make sure that my husband, and I, do not have our lives defined by his disease.  Yes, he is a patient (although most of the time he is anything but patient).  Yes, I am a caregiver, although I clearly do not “take care of” him 24/7 as do some wives, daughters and other women in this role.

But part of my job as a caregiver is to help us both remain complex, multi-faceted human beings.  People who can enjoy a discussion about the relative merits of the singers Etta James and Etta Jones, or whether or not it is really possible to have confidence in the results of any medical research except randomized clinical trials.  Food remains a place where we can live much the way we used to live, and rejoice in our continuing identity as food lovers.  In other parts of our lives, I worry about doing to much for him, because it might eventually reduce his sense of independence.  I don’t worry about spoiling him with food.  I always have and I always will, as long as this joyful part of life remains for the two of us.

Shoshanna Sofaer

Shoshanna is AIR’s director of Strategic Research Planning for Health Policy Research. She is a nationally recognized authority on patient and family engagement with extensive expertise in using qualitative and quantitative research methods and translating and disseminating health services and...