Caregiving and Deferred Dreams:
Creating an Action Plan to
Help You Cope
by Sheryl Karas M.A.
Caregivers often ask for a generic list of coping strategies for coping with their lives but I often find that the best strategy is one that matches a person's individual needs and desires. For me, in working with a client, knowing why a person is caregiving and what his or her life's purpose is makes designing an action plan much more effective.
I've met several caregivers who saw their caregiving as a mission from God or as a journey of love. It gave their lives great meaning to be able to be of service to their loved one in this way. Their main motivation in coming to see me was to develop ways to do this job better for a longer period of time. However, I have worked with many other caregivers who have loved their patients every bit as much but found that, as a few months of caregiving grew to several years, their caregiving duties were depriving them of the ability to devote time to what they considered to be their true life's path. For example, they may have given up a cherished career or time to have children and raise a family in order to aid a stricken parent or spouse. Coping strategies that ignore these deferred dreams only increase such a caregiver's frustration and depression.
Ask yourself a hard question: What would I be doing if I wasn't caregiving? Pay attention to your first thought and don't censor it!
If your first thought is "nothing" and you feel good about that, congratulations! You're right where you need to be. But if you had any other reaction, it might be time to reassess what you are doing and how you are doing it. Make an appointment with your family consultant, a counselor or a good friend today!
What would I be doing if I wasn't caregiving?
My first thought: I'd be sitting in the sun sipping a tropical drink on a lounge chair with a book under a palm tree on the beach in Tahiti. I wouldn't have a care in the world. Nothing to figure out. No housework to do. No expectations to fill. When I got bored I'd explore the surrounding countryside or head to town to look for local art. Obviously, what I need is a change of scenery! If you had the same reaction to this question, it's time for a vacation! Call for a family meeting, ask for help in arranging respite and start planning! Can't afford a week away? How about a weekend? A day? An afternoon at a spa? Figure out what the essence of your dream is (in this case, time off someplace exotic) and make it happen.
A tired depressed caregiver I met last week told me about her desire to start a new business marketing clothing that she designed and hand-painted. There was a sparkle in her eyes as she talked about it and her mood visibly brightened. Yet when I asked how often she spent any time sewing, painting or taking classes related to this life dream she said "never!" She couldn't even imagine how she would have the time and energy because her mother demanded so much attention. She was simply resigned to the idea that this could not happen until her mother was gone. She originally came to talk to me about arranging respite so she could get the grocery shopping done. But I suggested that she get even more help and use the time to take a class at Cabrillo College or make time for a hobby related to her future business.
When she protested I insisted, saying that this change was essential to her patient's long-term wellbeing because her fatigue and depression might be directly related to hopelessness about her deferred dreams. This was going to affect her patient's mood and make it difficult to do this work as long as necessary. An exhausted, secretly angry, or depressed caregiver is in danger of illness or collapse herself and if that happened what would become of her mother? Maybe she couldn't dive 100% into this deferred dream but she could certainly take steps in the right direction. It had never occurred to the caregiver that this was an acceptable thing to do but I saw the color come back into her face and her energy level lift just at the thought of it.
Alcoholics Anonymous has a famous prayer that is very applicable to family caregiving:
"God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference."
Certainly illness creates loss and family caregiving requires accepting these changes so one can adjust to them and cope. It makes no sense to bang your head against the wall resisting the process. On the other hand, I meet an enormous number of caregivers who give up their lives to the process. Everything else is put on hold until the crisis of caregiving is past. It's a matter of love. It's a matter of doing the right thing. And it makes complete sense. . . until the weeks become months, the months become years or, in some cases, inch into a decade or more. When a crisis becomes a way of life because the patient isn't going to get better but is too healthy to die, deferred dreams fester. Either caregivers address these issues or allow some aspect of their own hearts to wither and die instead. Eventually, this leads to ill health, depression, and short tempers. I have heard of situations where overworked resentful caregivers stole money from their patients, illegally arranged to have their patients' houses left in their names, or abused their patients in order to be paid back for everything they gave up.
It might be hard to make the changes necessary to attend to deferred dreams but this is where having "the courage to change the things I can" actually comes in. It's a mistake to think that setting goals for yourself and clearing away space to do what is most important to you cannot be done. In reality, it's a necessity.
Step One: Decide to Make this Dream a Priority
Make the decision that at least once a week for several consecutive hours you will schedule time that is just for you. This is sacred time! Make sure that nothing other than a life-or-death emergency interferes with it. You're going to use it to rest, relax, think about those deferred dreams and develop a plan which will help you take steps towards your goal. Later, you'll need that time to actually do some of the steps you have planned.
Step Two: Get Help
Have a family meeting and make a schedule for when each person will take responsibility for caring for your patient during your sacred time each week. If that is not possible, consider paying for in-home respite care or for a day at an elderly daycare program. There are even some residential care facilities that are willing to provide daytime respite, including lunch, for a reasonable fee. Too expensive? Consider it an investment in your future! Still too expensive? Call Del Mar Caregiver Resource Center or Senior Network Services to see if you or your patient could qualify for financial help. Call your local church or synagogue and ask the parish council, the sisterhood or "shut-in" committee for assistance. There are many older (and younger) people willing to volunteer to sit with shut-in elders for short periods of time. Try the Volunteer Center or the neighbor who lives down the street.
After you have the help you need to take regular time off, figure out what help you need, if any, to focus on your dreams. Counselors and personal coaches are great resources for both clearing away emotional blocks that may be in your way and making a doable action plan. Self-help books also work. I particularly like Barbara Sher's books I Could Do Anything If I Only Knew What It Was, It's Only Too Late If You Don't Start Now, Live the Life You Love and Wishcraft.
Step Three: Break Your Big Goal Down Into Doable Mini-Goals
For example, my big dream once was to travel to exotic places at least once or twice a year and still have a comfortable secure place to call home. I worked on this for several years. First, I had to make sure I had an affordable place to live. . . which meant I needed a higher paying job that I would still like. . . which meant I had to get more training. . . which meant I had to go back to school for a higher degree. I started five years ago and I've done all those things. Then I needed to build my travel legs since I didn't have much experience traveling outside the country and I didn't have a travel companion. I started with a solo weekend away in Mendocino. Based on that trip I decided that I would prefer being with a group of people interested in the same things I was interested in, perhaps art. Then I thought I could take a painting class in the South of France. But, oops, then my life took an unexpected detour and now I have much bigger dreams. I still like to travel— and I did get to England last year!— but now I want better things than a higher-paying job whose only purpose is to pay for rent and travel. And so be it! That's what happens when you go for your dreams. You find out you have even more! And then things really get interesting.
Step Four: Be Easy on Yourself
You are caregiving. It's obvious that things take time and never go as we expect and caregiving makes that even more true. Sometimes, what would be the simplest task for other people in a completely different set of circumstances becomes a major journey for those of us with complicated interlocking sets of issues and challenges. Still, I can vouch for the fact that even taking small steps and successfully learning to unravel each piece one by one, as I shared in my example above, is a lot more fun than sitting in one's room wishing things were different. You'll have a life when you're through with caregiving and it will be a lot easier to live it if you made time during your caregiving years to set the foundation in place for your future.
Caregiving Articles
© Copyright 2007 Sheryl Karas & Paul Hood
A new version of this article can be found in Sheryl’s latest book The Spiritual Journey of Family Caregiving.
Caregiving Articles