I am honored to present this guest post by Adrienne Gruberg, Founder & President of The Caregiver Space – “an online social network and resource library” for family caregivers. Her blog provides great inspiration for all who are caring for loved ones and discusses caregiving issues in an honest & realistic way. It also allows family caregivers to connect with each other not only online, but also by searching for them by zip code. These are two great ways to reduce isolation, even when they cannot leave the house.
Thank you, Adrienne, for your insights and for providing practical & realistic ways for family caregivers to take care of themselves!
Realistic S.O.S. for Family Caregivers (or How to Add Self-Care, Really)
By Adrienne Gruberg
Enough already—caregivers are constantly hearing “You’ve got to take care of yourself! What would happen if you got sick?” Don’t they realize we know that by now? The trick is, how to manage to do that when your primary concern is taking care of someone else.
As a caregiver, I was constantly challenged to find a chunk of time—an hour or so—to do a full workout with cardio, stretching, floor work and weights—and I was feeling myself get more and more out of shape. I came to realize that self-care was not about going to the gym or running a few miles a day; it was about lots of little things that were going unattended.
So I made a list, which is one of my sacred tools, and I wrote down what I wanted to do for myself and what I needed to do for myself. After that, I wrote down what I had to do to make things actually happen.
Eat healthy meals, don’t just snack.
I was letting my husband’s diet determine what I ate. I made sure the house was stocked with the foods he had an appetite for—bagels, chips and cookies mostly—and we were constantly ordering out for burgers, pizza and Chinese food. This was easy for me and easy was nice—but nice was not good. It took some discipline, but I managed to keep healthy foods in the house for me and when we ordered out, I made better choices about what I ate. Becoming aware of my food intake put some of the focus in my life back on me. This turned out to be a very empowering step.
Reduce stress—be mindful and live in the now.
As a caregiver, I became accustomed to being prepared for everything and anything. My head swam with all the “what ifs” about my husband’s health and I was constantly thinking about the future. I saw a quote from Thich Nhat Hanh somewhere, and was so moved by it I went and ordered some of his books online. His writings are all about living in the moment; seeing beauty in small things and finding joy and peace in what you have at any given time. I learned the importance of breathing properly and practiced by following guided exercises I also found online. One good, deep, cleansing breath is something we can all find the time to do, and it’s amazingly helpful.
Every minute Steve and I spent together was valuable—whether it was spent watching baseball or talking about the difficult topics we needed to face. We were together for the moment, and that was all that counted.
Use spare time constructively
Caregiving didn’t leave much time for planned “social” activities, so I made a list of things I wanted to do and things I needed to do. Tackling one task at a time and being able to check it off as completed, helped me feel I still had some influence over my life. Sure there were still things spiraling out of control all around us, but knowing I was accomplishing whatever I could helped relieve my stress level.
The list of things that needed doing included adding some exercise into my daily routine. I was surprised to find just how many small blocks of time I actually had. When glancing at my list I would have an “Aha!” moment and use this time to work on myself. Again…knowing you’re doing something for yourself, no matter how small, is very healthy, both mentally and physically.
Keep in touch with friends and family
It’s very easy to get out of touch with people you are close to when you are in the midst of caregiving. You don’t want to call someone to complain and it’s easy to get tired of making excuses about why you can’t meet for lunch or even coffee. What we do, frequently, by cutting ourselves off, is create an atmosphere of isolation and gloom.
Those close to you may want to help out but not know how. As hard as it is for some of us to ask for help, there are people in our lives who would be there for us if they knew what they could do.
For me, it was different. I chose to keep my friends in the loop, but I wanted them to be my “cancer free zone.” They would be my link to the outside world; the normal world. I knew though, if I asked for help, they’d be there in a flash.
Structure daily routines and try to stick to plan
Caregiving has many structured aspects to it, but most of them regard the patient and we just carry them out. When we make conscious decisions about our own routines, it’s surprising how much time we could create for ourselves. This is the time you free up for self-care—whether it’s tweezing your eyebrows or cleaning your closet—make it time you spend on yourself.
Find support groups and networks online
When I finally reached my breaking point as a caregiver, I knew I had to find support online. I couldn’t leave the house—many of us can’t. But there’s a great deal of help to be found on the Internet that’s caregiver-centric. The importance of our role is becoming more and more evident to those yet unaffected by what illness can do to a family. Eventually though, most people will be faced with this reality, and because our ranks are swelling, more and more support is becoming available.
Create a space just for YOU
Whether you have a room in your house or a chair near a window, it’s important to have a spot to call your own. Make it comfortable and surround yourself with photos, books and mementoes that make you happy. Use this space when you meditate, or knit, read or write. It should bring you some inner peace and be a refuge from your caregiving duties.
And, last but certainly not least—WRITE because the page listens
Anyone who knows me knows just how important writing became to me as a caregiver. It saved my sanity. I was housebound for the duration of both my husband’s and mother-in-law’s illnesses, and the most effective way I found to cope was also the most creative way. I journaled—almost daily. Whether I had time to write pages and pages or just a sentence, I could express myself freely and without judgment. Sometimes I wrote about the events of the day and other times I wrote about moments that were very happy and dear to me. These flights of fancy were like a little vacation. On the other hand, if I felt like screaming, I’d put all my anger and frustration down on “virtual” paper and found great relief in the sudden feeling that the page actually listens. No back talk, no advice, no criticism—just a good friend who listened to what I had to say.
Little by little, try to integrate a few of these ideas into your life and see what a difference they can make. They’ve been tried and tested by many caregivers who have gone through what you’re going through. I’m just passing what I’ve learned from others on to you, with great respect for your time and effort.
About the author
Adrienne Gruberg is one of the millions of baby-boomers now in the middle of the caregiving crisis. After six years caring for her husband and mother-in-law, Adrienne founded The Caregiver Space, an online social network and resource library, catering exclusively to a caregiver’s needs. The Caregiver Space is a non-profit organization committed to giving caregivers a space to find support, comfort, connection and relief.