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October 23, 2016
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Family Affair

One thing I've learned both living with diabetes (and hypertension and everything else) and having family members with diabetes, hypertension, dyslipidemia, and other health issues is that no matter how far away you are, and whether that be in miles or in outlooks, the chronic illness of one is shared by the entire family. Here, many hands do not make "light work" -- that right goes to the bonds of love and familial obligation. While a large support network might ease the afflicted person's ability to live a full life, it means that a much larger number of people need to consider the needs of that person, that many more perceive an increase in their own risk for developing that malady, and that many more must learn to accommodate a family member's needs within their own lives.


To start with, it's hard to address diabetes without addressing diet. After all, they both start with the diphthong // dai //


Usually a diabetes diagnosis is accompanied by a diet plan. Whether this plan is carbohydrate-limited, fat-limited, portion-limited, calorie-limited, or carbohydrate-counted may vary from patient to patient. So too are other common limitations: salt and sodium to manage hypertension, wheat and gluten because of celiac, acidic foods to manage GERD. Often, wending one's way through multiple medical-needs dietary restrictions means becoming very creative with the ways one cooks. If a household is adventurous in its food choices, it may mean moving those adventures in a specific direction and away from others -- but if everyone has been stuck in the typical American diet rut of steak-and-potatoes, burgers-and-fries, spaghetti-and-meat-sauce, fish-and-chips, or pizza every night and is unwilling to change, where does that leave the person with type 2 diabetes -- or the person with diabetes and celiac, for that matter? Do you decide as a family that "Going forward, we will eat differently, because 'Ginny' needs to eat differently", or do you make "Ginny" meals separate from the rest of the family? If you choose the first path, Ginny is made to feel responsible for forcing her family away from the foods they like and will eat. If you choose the second, she may feel outcast. And if you do choose the first path, how do you stop everyone else from "picking up something at the drive-through" on the way home from school, work, or athletic practice and leave "Ginny" to eat home all alone? If you choose to present multiple meal choices at the table, how do you stop "Ginny" from succumbing to the temptation of eating something which may be unhealthy for her, or even downright dangerous?


If you migrate the entire household to a "Ginny-safe diet", do you clear out the cupboards and pantry of everything that "Ginny" cannot have? Does this change based on her age (child, teen, or adult) or her position in the household (child, wife, head-of-household, primary cook)? Overall household income?


Similarly, if you expect your children's recently-diagnosed grandfather to visit this summer, you may need to turn your kitchen upside-down to accommodate his new dietary needs while making it appear that you are not at all going out of your way to do so -- and while you're at it, teach your children how to be gracious about the changes and if need be (horror of horrors!), lie about it. On the flip side, if you are a grandparent who normally has her grandchildren for a week or two during the summer, you will need to learn about insulins, carb counting, highs, lows, and DKA in addition to a newly-diagnosed grandchild's diet and medication regimen before your daughter will be comfortable letting your grandchild out of her sight.


In addition to diet, you must add the times that one or more family members need to change their schedules to accommodate doctor visits, run to school to check a child's blood glucose levels and administer insulin, change a child's school if his needs cannot be accommodated by his current environment, or fight for the proper administration of a 504 plan.


Then there are the changes in disposable income due to the cost of those doctor visits, medications, medical supplies, and (often) higher-priced food. If, like most families, you're struggling to make ends meet or you cannot save as much as you need to for schooling, "rainy days", and retirement, you're going to have to further reduce your for-the-future savings (if you have any), choose to travel or socialize less, opt for less-expensive entertainment options, or institute other cost-saving measures. This may mean getting to see grandparents, grandchildren, or extended family less frequently, changing vacation plans to visit family rather than go sightseeing, transfer college-age students from out-of-state to local schools, and opting for a second-hand car instead of a new one. It may mean cutting down on the premium cable channels and ditching the Netflix subscription, perhaps making the non-diagnosed members of the household feel as if they are being punished for the one member's disease.


Now if it is your elderly parent or bachelor uncle who has been diagnosed, your travel and vacation plans may end up changing to accommodate more trips to see them to make sure Mom is taking care of herself, that Uncle Dan understands and adheres to what his health care team is telling him, or that Great-Aunt Dora is receiving appropriate and correct care from that team. If Old Auntie Jane lives within driving distance, you may need to increase the frequency of your visits, driving her to and from doctor visits, so you can get a doctor-direct version of her care plan -- which may differ from the plan she reports to you. You may need to coordinate these visits and information with your siblings or with Jane's children or grandchildren three states over, keeping them aware of Granny's health.


If you can still afford to dine out, go to movies, and travel, diabetes, hypertension, celiac, and other related chronic illnesses still affects your entire family's ability to enjoy those occasions. Many restaurants' acceptable food options are limited at best, and most family-dining chains are not capable of accommodating special dietary requests. That said, their idea of "low sodium" may be much more generous than your doctor's, CDE's, or dietician's; their understanding of "gluten-free" may mean ingredient choices, rather than contaminant avoidance; and their dressings, sauces, and gravies may include premixed ingredients which do not include nutrition labels. You may need to argue with bouncers who won't let you into a ballpark or museum with anything as large as your diabetes-care bag (much less accommodations for a special diet) or bullying TSA agents at an airport. You may need to arrange for onsite emergency medical accommodations before you travel out-of-town as well as extra medications and supplies -- and you may have to argue with your medical insurance carrier which, generally, will refuse to allow the pharmacy to refill prescriptions early or fill additional prescriptions of the same type before the original prescription would have been used up.


In short, diabetes -- like all other chronic diseases -- affects more than just the person with the defective beta cells. It is, well and truly, a family affair.

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