Family Support Dynamics

When someone is very ill, family dynamics can be delicate. There are burdens placed on family members and resentment can brew if the weight is not evenly distributed. The problem is, not everyone is equipped to be the down-and-dirty caregiver. Not everyone lives in the same town or state as the patient. Reality dictates that an even distribution is just not going to happen.

Nonetheless, I have found that no matter what, every family member brings their unique skills and gifts to the table. If these skills and gifts are recognized, they can be an integral part of the support network, even if part of that network can’t stand needles.

Example 1:

Luckily for me, my mother can handle needles, blood and other unpleasant bodily byproducts. My father, on the other hand, tried to be in the room a few times when I was getting an IV and he fainted each time. He doesn’t have the constitution to be the person who will hold my hand when things are being pulled out or poked or cleaned up. There was a time when that might have made him feel bad, but it became clear at some point that there were other things he could do that made a big difference.

My father has always handled the headache of insurance and hospital paperwork. When I was sick, I never had to deal with the annoyance of getting things approved or sorting out the complicated payment issues. I am forever grateful for that.

In addition, Dad did a great job of pitching in when he could to make life easier on Mom and me. I often had to do IV therapy at home and a few of the drugs had to be mixed up less than 1 hour before the dose was given. This was very aggravating, especially in the middle of the night! Nonetheless, my father took this on as his job and I never had to worry about mixing up my meds again. They were always waiting for me when the time came. What a relief.

My father also did a good portion of the spoiling. My appetite was often very poor so when I had a craving for something it was an event to celebrate. Unfortunately, those cravings didn’t always happen at convenient times. My dad was always willing to run out, no matter what time, and track down the food I desired. I remember one time when he actually convinced my favorite Italian place to make me a pizza after they had closed! His willingness to do this made me feel very loved.

Dad avoids direct contact with all things medically painful or physically distressing. (Better that than to scrape him off the floor!) Mom holds my hand during all the procedures while Dad does many other valuable things to support me in my times of need.

Example 2:

Sometimes the contribution a person makes to a difficult situation is entirely unpredictable. My two sisters and their families live nearby and have seen me weekly through all my highs and lows. My brother, on the other hand, lives far away and we only gets to visit a few times a year. Despite the distance, he turned out to be extraordinarily helpful after both of my transplants.

Jay flew down and was by my side, with the rest of my wonderful family, the day after both surgeries. During that time I was intibated and could not speak. This was an especially distressing time for me as I had many questions and comments that had to remain silent. I attempted my version of sign language, more like a morphine-inhibited game of charades, but nobody could understand me. Except Jay.

I don’t know what it was or how he knew but he always comprehended my silly hand signals. Whenever I started trying to communicate, people learned to go get Jay. It was so soothing to know there was someone who could answer my questions and even get my hand signal jokes!

There was no way to predict that Jay was going to be so helpful in that capacity but it was very sweet that he was. It made me feel so much closer to my brother and I will never forget all of our mute conversations; no matter how hazy the drugs were making me feel!

The Lesson:

Support can come in many forms. Taking care of a sick loved one requires a team. It’s easy to place expectations on people that do not match with what they are good at. Families and patients should keep on the look out for what an individual naturally gravitates towards. Would you rather run errands than spend long hours sitting by the bedside? Would you rather have long heart-to-hearts about life and death in lieu of dealing with the insurance company? Everyone has a part to play. The trick is figuring out who does what and honoring each other’s roles as equally valuable.