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Being Your Own Caregiver When There Is Nobody Else

This issue of Mental Health News examines the topic “Addressing the Needs of Caregivers.” The response to our theme was very enthusiastic with many people indicating how happy they were that we were examining this import and timely subject. Throughout the many wonderful articles in this issue we take a look at many of the needs and challenges facing caregivers of people with mental illness and individuals with other challenging illnesses.

There is one subject that was not covered in this issue’s articles that came to me when I sat down to write my column. “How can a person with mental illness be their own caregiver when there is nobody else?” As a person who battled to overcome a serious mental illness, I can tell you from my own personal experience that this situation does occur and is not that unusual.

For me and many others, our fall into mental illness came later in life after we had left the care of our parents and entered adulthood. For adults, the onset of mental illness occurs after years pursuing a career, raising a family or following a divorce which then left us fending for ourselves as single adults once more.

In my own case, my battle with depression didn’t begin until I was almost forty years old, following a series of personal losses. As the youngest of five children, my parents were already in their late sixties. I was living at the time in Upstate New York. My mother had recently lost a courageous battle with cancer and my father lived in Florida and was rebuilding his own life. My friends, and four brothers and sisters were located in other cities in New York, Massachusetts, and Florida. I was living alone, becoming quite ill, and had no clue as to how to care for my deepening depression. My illness grew in intensity and lasted for over ten years during which time I had to learn to be my own caregiver. The same holds true to this day.

Now, some twenty years later, I am able to tell you how I learned to be my own caregiver when there was nobody else. At times it seemed like an insurmountable task, especially when my illness was interfering with my thinking and smothering me with negativity and hopelessness. I could have used a guidebook or a roadmap to give me some direction, but there was none. That’s why I eventually went on to start Mental Health News. Here are some helpful hints.

Educate Yourself About Your Illness

You can’t begin to be successful as your own caregiver or assist someone who is trying to help you if you don’t thoroughly understand your own illness. Working with and developing a trusting relationship with your mental health professional and others on your treatment team is a good place to start. Even though it’s hard to work with people you don’t really know that well, it is important that you trust in them to help you to the best of their ability. In a good recovery-oriented therapeutic relationship, your psychiatrist and other treatment team members should be willing to tell you about the nature of your illness including: what it is called, what may have triggered its onset, how it will be treated and for how long, and what are the core elements of how to manage it and if possible recover from it. Carry a spiral notebook to write down your questions and everything that you learn along the way.

Start with the Essentials

Everyone is different, but there are some essentials that all of us require to survive on our own. First and foremost are the basics such as food, clothing, shelter, healthcare, transportation, and some form of financial support. Many communities have organizations designed to helps people begin their recovery. If you have suffered a serious breakdown, have no means of supporting yourself, and end up in the hospital, you may be fortunate enough to be given some form of follow-up discharge plan. Ideally, this plan will pair you with agencies in your community that can help you with immediate needs such as housing, obtaining financial support such as Medicaid, SSI, SSD and food stamps, and provide you with outpatient mental health and medical care.

Donald Fitch, author of the Mental Health News column titled “The Economics of Recovery” has identified nine “Essential Goals for Self-empowerment in the Community for a Full and Balanced Life.” They are: (1) meaningful work, (2) a happy home, (3) financial stability, (4) family and friends, (5) spiritual well-being, (6) education and skills training, (7) good mental and physical health, (8) fun and recreation, (9) and accessibly for people with physical limitations.

Build Your Own Recovery Community

You may be your own caregiver, but that doesn’t mean you should live in a vacuum or on a desert island. One of the best things you can do for yourself is to surround yourself with the best treatment professionals, advocacy experts, coaches, cheerleaders and friends who believe in you. It will take a community of people around you to get through this difficult time in your life.

Work with Your Treatment Team

In a perfect world we are all being treated by the best mental health, medical, and support team professionals available. However, due to financial reasons, location, and availability, this might not always be possible. Good treatment relies on a supportive team effort and for you to become an educated consumer. You should feel comfortable asking questions about your care. If you are expected to sit still and not have any expectations of how and when your recovery is to take shape, I would be a bit worried. Some of the top people in the field of mental health that I have met are caring professionals who are easy to speak with and encourage you to expect progress in a reasonable amount of time. Many medications can take weeks to become effective, so you often have to be patient and work with your doctor on this. If however, after several months you aren’t feeling any better, or if the side-effects of your medications are intolerable, tell your doctor and see if there is another course of treatment available.

Some of the Best Therapy Can Be Found Outside the Therapeutic Setting

One of the other best things you can do for yourself is to keep busy and keep moving forward in your recovery—starting if you can from day one. Depending on your treatment plan, you may only be assigned to going to outpatient psychiatry visits to refill your medication prescription when they run out, and one or two counseling sessions per week. Some consumers are placed in a daily outpatient treatment program which is helpful when you are in need of regularly structured care. Depending on the hours, these types of programs may only occupy your mornings or end in the early afternoon. If you are not employed or are only doing limited volunteer work during the other hours of your week, look for recovery-oriented activities to occupy the remainder of your day. Treat your recovery like it’s a full-time, nine-to-five job. The most harmful thing to do is to have hours of idle time, sitting alone in a lonely apartment, ruminating about your problems. Believe me that’s not good therapy and can quickly land you back in the hospital.

Many communities have organizations that provide other mental health and recovery-oriented resources for consumers and families. There are vocational programs, nutrition and wellness programs, drop-in centers, and advocacy programs to name few. In addition, there are organizations such as the Mental Health Association (MHA) and the National Alliance on Mental Illness (NAMI) which often have recovery-oriented programs you can participate in. Some of the best things you can do to advance your recovery can be found in the company of other consumers who are also working on their own recovery. It’s important to have friends that are non-judgmental and who can share their experiences with you on what has worked for them in their recovery. Many clubhouses and drop-in centers offer more than just a couch and TV to sit around, and have structured educational, vocational, and socialization programs for you take advantage of. Get a pocket calendar and schedule your week with activities to attend—and don’t forget weekends. A good community Public Library can also offer you relaxing time reading a good book or magazine, listening to music, or attending a special class.

Telling Your Story and Helping Others is Therapeutic

I never thought of myself as a spiritual person, but when I finally began to recover from my illness I had somewhat of an epiphany. I began telling people about my illness and how I had the idea to start Mental Health News to help others find their way through their own difficult times. Throughout my ordeal I had been filled with shame, fear and stigma about my illness. What I found was that the more I told my story, the more people I met that understood what I had gone through. Even if they were not consumers themselves, they had a brother, sister, parent or friend who had struggled with a mental illness. I found that by simply telling my story to others, I began to feel better about myself. I learned that mental illness is a medical condition that can strike anyone at any time, and that it wasn’t my fault. Since the career I had before I became ill had long since been left in tatters, I had no prospects of finding work. I didn’t realize it at the time, but my idea to start the newspaper got me working again, and at something I deeply believed in—helping others. Even though I was not getting paid to do the work each and every day, the joy and energy that it provided to me was payment enough. I called it my “labor of love,” and I think it played a major role in my recovery.

Here’s a suggestion. Find something that you really like to do or that you are very passionate about. There are people in your community that will help guide you down this path. Some are called vocational counselors, and some are called job coaches. Try lots of different things if you are not sure. Work at it a little bit every day and maybe you will find a new direction in your life. Working at something every day that you enjoy is very therapeutic.

I believe that “pulling yourself up by the bootstraps” (to the best of your ability) is not only possible but is an essential part of the recovery process. Going through this process not only helps our self-esteem, but it helps lessen our fear of being alone and fear that we cannot take care of ourselves. As my brother Jeffrey always said, to encourage me to overcome my fears, “Left Foot – Right Foot.” It was his simple and caring way of saying that everything in life starts with taking that first step. Taking your first step can be the beginning of something wonderful.

Good Luck in Your Recovery

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