A GP Partners Guide - by Guest Blogger Wayne Jarvimaki

We all have days when we are in low spirits. Some days we experience pain, some days it’s mental exhaustion, and some days are a fog from loss of sleep. When it becomes the norm, this is life with GP.

A couple of definitions before I start;

A GP partner is a better word to describe a spouse, parent, friend or family member who is close to a GP patient.

A partner sometimes finds themselves wearing the hat of a caretaker when their spouse or significant other becomes ill or disabled.  We become a key part in their overall treatment plan, working side by side with doctors and medical schedules and possibly assisting in managing medications, even medical supplies.   When the person you love has been diagnosed with Gastroparesis you might find yourself trying to both understand what it is, what it means and how to pronounce it.  By the time you hear this word and the quick brief description of what it is and the series of  additional tests that may follow along with treatment plans, you are thankful for a diagnosis but left unsure and questioning what it all means.  Now, imagine what your partner who is experiencing all of these symptoms of Gastroparesis and has been handed, most likely a photocopied definition and description of what GP means, is thinking and feeling.  Sure, it’s a diagnosis and the symptoms and chaos has a name but what does it mean? What will it mean for the two of you as a couple, as parents?

While you can both be told what Gastroparesis is and is not, the truth is the symptoms and overall impact on life is different for everyone and your partner may experience it as a textbook case or very different.  She/he will be eating almost normal one day and then barely able to keep baby food or a glass of juice or toast down.  She may become so exhausted from hunger or dehydration that hours are spent in bed, on the couch, a day or two spent in pajamas or simply trying to make it through the day dragging slower then you have ever witnessed in your life.  You might watch as your partner declines to a point where medication is a round the clock schedule and as frequent as she is running to the bathroom to vomit. 

The hardest part is holding her hand or wondering if you can stay in the room, the house, the same space when you watch, as she fights with the physical pain, nausea, dizziness, vomiting, sedation from anti-nausea medications and side effects from any of the multitude of prescriptions that have out balanced her actual food intake.  As men, we want to fix the problem and the reality is that with Gastroparesis, there is nothing we can do to help except to be there, supportive, understanding and educate ourselves with what GP is and what it is not.  We cannot think that if we can make them eat that we will have somehow fixed the problem, our partner cannot eat herself to wellness.  If it were that easy, I would not be writing this article.

My wife has Gastroparesis and Chronic Intestinal Psuedo-Obstruction with ‘global motility’ along with a few additional rare and idiopathic neurological, genetic and soft muscle conditions. We have lived the GP Lifestyle for many years and it has not been easy with having to become an expert in Latin and Medical Speak, as I have come to think of it.  I have watched and sat in the waiting room as my wife has undergone some of the most draconian and barbaric of medical tests. 

There have been discussions shared around topics and decisions that I never imagined a couple would ever have to consider.  For the most part, I have respected her wishes but questions where I draw the line, put my foot down and say, “wait, this is what I think you should do.”  Why do I allow her to make some of the medical decisions that she does?  She is the one with Gastroparesis and she is the one that must live with what her body is putting her through, so how can I tell her what is best when I am still able to go to work, eat a steak and potato and maintain energy thought out my day?

Together we try to understand what is and seems to continue to decline in her body.  I take time periodically to look up new findings on Gastroparesis and when I do find something new I share it with her.  I try to understand and support her on days when she is particularly down, even if it is a phone call or text from work that asks how her day is going, how she is feeling, doing.  I leave communication open but not try to focus daily on her medical conditions but more on her as a person, my partner, the person I love and care about.  I see that as she declines the hope wanes, and I acknowledge her blue moods and listless days and while not trying to again, be a man and ‘fix the problem’.  I just go about our day or evening without making a big deal out of anything.  The more normal our relationship and day to day experience is the more absorbed in to the norm the illness is and the less GP is allowed to take over our relationship and our lives.  Gastroparesis effects everyone related in the person who has been diagnosed so in being aware of that important fact partner, friend, caretakers must not focus or allow the power to be in the grips of GP but rather GP to be as one present as a nuisance at times.  Don’t take me wrong, Gastroparesis is a major medical diagnosis but life is so wonderfully important that it should be the focus, as should your relationship, over the medical condition. 

I have talked about the relationship and a small primer on what a partner can possibly expect but the reality is that life changes on a social level for your loved one.  So much of our lives centralize around food focused events.  With that now in mind it is best not to excluded family and friends or overly dismiss invitations to events but rather approach them differently.  We often go with a smaller appetite and that way I can support my partner in eating a small amount which also takes the obvious smaller portion of food.  If an event includes a meal followed by a gathering or movie, etc. we just plan on showing up after the scheduled meal time.  Of course, as the years have passed and more people are aware of my wife's Gastroparesis, we find that invites come with an accommodations of food items that are known GP friendly (if there ever is a real GP friendly food) or she simply puts a little of this and a little of that on her plate and then discreetly exchanges the plate with me at some point during the event after snacking what she can.  This is what we have found to work for us in social food related situations.  Each couple can find their team approach to social and food gatherings, whether in public or home hosted events.

One of the biggest challenges after taking the time to truly learn about what Gastroparesis is and how it affects the life of your partner and then how to support her in a very food focused public is to adjust home life to accommodate this new and challenging lifestyle.  Start helping with the shopping by noting and discussing what she/he feels to be GP friendly foods and if you notice items that she has been able to keep down share those with her.  Create a list of foods that you carry with you in your wallet or notebook so that if you are out shopping you can make sure these items are quick to remember and are included when you plan on making a meal or stopping by to stock the fridge and cupboards.  It also can come in handy if you stop to pick up a drive-thru quick meal, you might know she can tolerate yogurt or pancakes and it just happens that where you are at they have it ready to go and everyone is included for the ‘take out’ meal.  One last but very important tip that I would like to share and it comes back to communication; never just bring food home to your partner with Gastroparesis, call first and ask how her appetite or tummy is feeling.  She may not want to even smell food or she might be hungry but her stomach is just not playing fair and bringing food home will only be cruel for her to have to smell and not be able to eat.