During the course of my husband’s illness, I so longed to hear “How are you doing Adrienne?” Never happened. What I did hear was “So, how’s Steve?” or “How’s treatment going?” or “What’s the next thing they can try?” I got used to it. I was the caregiver, and by assuming that role, I was also the “town crier” and the go between with all the information friends really wanted to know. They couldn’t ask their old friend because it was too upsetting for him. It wasn’t idle chatter; it was genuine concern. It was my job to fill them in.
I think I would have been happy if someone had just said “It must be hard for you,” but no, I didn’t hear any of that either. However, being in the company of friends, regardless of what the topic of conversation, was always a kind of lift for me in and of itself. Steve’s friends cared about Steve, and they loved me for being the caregiver that I was (among a multitude of other reasons, of course).
In all of the six years of caregiving, I don’t think I was ever the center of attention. So, I had to get centered. I had to be so thoroughly committed and focused on “them” that over time I created a bag of tricks that would help me cope. As much as a person in the throes of caregiving can be happy, I needed to try and take charge of that myself.
I read and read and read. There are a few books on resiliency that were very valuable to me. I can’t say that “Well, we’re going to have to do some targeted radiation” was the easiest thing to hear, but I had to integrate it and “own it.” This would happen and I would get through it. It’s how I got through it that’s important.
Breathing, meditation, and positive visualization were absolutely key to my health—both mental and physical. They helped me cope with the stress that would never totally vanish. There are many breathing techniques and they’re all good, but I suggest you look up “circular breathing” and learn how to do it. Valerie Johns has a site where you will find some instruction on “circum-respiration.” This breathing will lead you into a meditation.
Then there’s my own personal favorite, “Visualize yourself in your perfect place of relaxation,” a technique I learned in Silva Mind Control. It’s actually fun to do as well as extremely rewarding. I breathe to relax until I’m ready to picture myself on a beach; I’m assuming it’s a beach, my back is to the water, but I’m sitting in sand. I’m looking up a hill through the snow-fencing you see at the beach at the top of a dune. Beyond the fence is my perfect house—because it’s all in my mind I can make it look any way I want it to; have anything in it I want; have it full of people or just me. My house has a central foyer and five long hallways off the foyer like the spokes of a wheel. Down the corridors there are lots of doors and behind the doors I will find whatever or whoever I want to see there. Or, I can be surprised when I open the door and find whoever will be able to help me through a problem. I’ve found everyone from Marilyn Monroe to Eleanor Roosevelt to Einstein.
Sometimes I just decide to go down to my “laboratory.” The lab is an absolutely essential part of every perfect place of relaxation. I have equipped my laboratory with tons of books—it’s really more of a library than a laboratory, but I’m there for discovery and answers. I’ve been instructed, as part of this method, to have an elevator that opens directly into the lab. I’m supposed to ring for the elevator and whoever is on it is the person I need to see and ask questions. I’ve had Walt Disney, Walt Whitman and Will Rogers as guests, among others.
All of this is wonderful fun since you’re in control—even of the unexpected guests that have been conjured up by your subconscious. The idea is that talking with my visitors and finding the books with the proper references or making imaginary potions to fix things I have no real control over, leave me in a very positive state of mind.
So we get to the question “Am I happy?”
I have to say the answer is sometimes – even through all the really tough going. I have my wonderful visualizations when I meditate, so I have a place where things are as I would have them. And then there’s always the list technique. Barbara Ann Kipper has compiled a list of “14,000 things to be happy about, or The Happy Book” which is published by Workman Press. If you have trouble thinking of positive things in your life that you can be happy about while going through very trying times, it helps to be able to pick up someone else’s list of simple pleasures. Some of these are as simple as “fresh fruit pancakes,” “rural roadside stands,” “fairy tales,” and “porch swings.” The list isn’t quite endless since the title limits it to 14,000 things, but everything on the list gets you associating pleasure. Just focusing on something other than your caregiver plight will lift your spirits.
For me, the single most important thing to being happy, or at least finding moments where I found I was happy, was to keep my relationship with MY friends as far apart from life with Steve as possible. Of course they were concerned, sometimes consumed with Steve’s illness, but they were always thinking of me. We’d meet for lunch, or they’d come up to my apartment if I couldn’t leave the house. We’d just take a drive or go for a walk through the park just two blocks from my place. I needed them to be my normal. I needed to rely on my friends for news from the outside world and tales of their own families. Steve would have been uncomfortable letting one of our friends care for him, even though it might have given me a break. He was too proud for that. If I’d needed them to be there to sit with him “just in case” they would have been happy to do so. But I really didn’t want to have to call on them. When I found myself in hospital waiting rooms during surgeries, my friends were always by my side. They were always the first to visit Steve after whatever procedure he might have had. They knew that their attention would bring miles and miles of relief for both me and my husband; but after a quick “How are you feeling?” they kept the conversation light and strictly non-medical.
I know there must be a lot of you who need your friends to be part of your caregiving support network in a “Johnny on the spot” way. I was lucky. I wasn’t taking care of children and their schooling and extra curricular activities. I didn’t have to go to work every day; I could take care of business via my computer and my home office. If you have a support network of caring friends and family, they can still bring the outside world to you and your patient. Talk doesn’t have to be about hospitals and doctors and treatment.
So breathe, meditate, be grateful for small things (make a list for future reference) and let your friends bring you a bit of normal. Whatever that is!
Adrienne Gruberg is a former family caregiver and founder of The Caregiver Space. After six years of caring for her late husband and mother-in-law she conceived of an online support space all caregivers could come to. Adrienne holds a BFA from Boston University. She founded AYA Creative in 1982, an award winning graphic design, marketing and advertising company. Her design training has helped shape the website and her personal and professional experience continues to inform and influence the caregiver centric support experience she has created at The Caregiver Space.