I recently underwent my 14th surgery, to remove my pesky gallbladder. The person who is usually my rock and main support, my (ex) mother-in-law, was to be vacationing in Canada at the time. I considered moving the date up, but decided to try a new approach to securing the support I need. Having been through so many surgeries over the years, often without adequate support, "who has or hasn't been there for me" is a difficult issue that brings up a lot of past traumas. Here are the lessons I have learned about what is realistic to hope for from friends and family, and why attempts at caregiving often bring out the worst in so many people.
This time around I decided to set up an event page titled Marijani's Support Team for Gallbladder Surgery, and this is how I worded my request:
"Hi everyone! Meg will be in Canada when I have gallbladder surgery and I am concerned about not having enough support. Patients who have family and friends in the room with them, most of the time, get much better care. I'm also anxious about being there alone because of my PTSD, brought on by a lifetime of bad experiences in hospitals. So, if you can visit and help keep and eye on me I would appreciate it greatly. If the surgery is done laparoscopically I'll go home the next day, if not, I'll be there 3 or 4 days. This can be a place for you guys to coordinate and stay updated. All surgeries are somewhat higher risk for me and I want to be prepared in case of complications. If you are on this list it's because I love and trust you. Thank you in advance, also if you're unable to visit I totally understand, everyone has busy lives."
I told everyone who volunteered to help that it was important that no one person took on more than they could handle, the idea was to spread the caregiving out amongst all of them. This seemed like a smart approach to organizing and securing the care I would need, both in the hospital and back in my apt where I live by myself. Unfortunately, things did not go as planned. One friend volunteered to take on way more than anyone else and I asked her if she was sure she could handle all of it, but she assured me that she had set a few days aside and could focus on helping me get through this ordeal. In hindsight, I should have been wary, but at the time I was simply grateful. I told her several times what a great friend she is and how much I appreciated her help. Sadly, it quickly became clear that she had no idea what she had signed up for. She became overwhelmed when her very unrealistic ideas about caregiving in the hospital were obliterated by the reality of constant interruptions by nurses, stress, tedious hours of sitting around waiting, and sleep deprivation. She instantly made it all about her. Her exhaustion, her stress, and her overall discomfort. Instead of simply admitting that she had taken on way more than she could handle and then coordinating with others to cover the most necessary care, she lashed out at me, saying all kinds of hurtful things. When it became clear how much she had hurt my feelings she told me that she hadn't really meant those insults and that I shouldn't take them so personally. So, for anyone who hasn't had any surgery, and/or hasn't taken care of someone who had surgery; when people are recovering from being cut open they tend do be very emotional and easily hurt. That is normal and perfectly understandable! To attack someone in that position and then tell them not to take it personally is beyond outrageous. In short, I had to ask her to leave and an old friend stepped up to take her place. Some people want to think of themselves as great caregivers, but in reality they are quick to make it all about them instead of focusing on providing care and support. If you have committed to being there for someone in a caregiving capacity, but are feeling that you can no longer be caring and supportive the right thing to do is to leave, politely, and without making drama. Don't make the situation worse for someone who is already in pain and feeling very vulnerable.
The lesson I have learned from this is to get the bulk of my support from the small circle of people who have known me for many years, and have seen me go through one surgery after another. I still believe that no one person should ever have to shoulder all the caregiving for another, and I do have a few people who I trust and can count on for some part of what is usually needed. When someone new comes along and volunteers to take on a whole lot, don't let them. Insist on spreading the caregiving around. New people can be included in the support team, but only bit by bit, slowly, over time.
I have also learned over the years that the people who are able to help under those circumstances, without making it about them, are worth their weight in gold. I tell them often how much I appreciate them. It doesn't matter how much someone is able to help, what matters is whether they are able to do so consistently and with a truly caring and supportive attitude. If someone can only do one thing, but I can count on that person to show up and do that one thing at stressful and difficult times then that means a million times more than another person showing up with an unkind attitude.
Having to rely on others for help around surgeries has been challenging. There have been times when I was treated abusively by people who were supposed to give me care and support. They have to live with themselves, which is punishment enough. On the other hand, the people who have done a good job, or even a half-way decent job, at caring for me when I most needed help deserve my deepest gratitude. Unfortunately, there are some people who can't ever be thanked enough, that is their problem. Be sure you have given them a sincere thank you, and then let it go. Don't ever look to that person for help again.
Lastly, there are always people around, on the periphery, who will try to make it about them. Keep them at a distance. Protect your inner circle of calm and sanity. The only people who are allowed in the inner circle of support are those who have shown that they can truly be supportive without drama or selfishness. When I am able to I work at being that kind of support person for others. I wish to give back, to be of help to others in turn. Learning how to give and receive support graciously deepens our experience as human beings. While living with a CHD is often a lonely path it has taught me the importance of asking for and receiving help from others, plus the ability to apply what I have learned to being a better caregiver and a better person.
