Caregivers Are Priceless

Caregivers are Priceless

Mental health clinicians have learned the value of including families in treatment for serious mental illness such as schizophrenia. Families can provide the support and infrastructure by providing safe, comfortable environments during recovery; organizing treatment needs such as appointments and medications; giving important family history and chronology of past treatment experiences; and providing the love and acceptance that is needed in a world filled with internal confusion and external stigma. Recent research supports the importance of including family members and making sure that they develop an understanding of their loved one’s illness and find resources that they need to be useful caregivers.

Being a caregiver for a loved one with schizophrenia or serious mental illness can be challenging and often takes a toll on families. No one can be consistently supportive or perfect in this difficult role. Because recovery is so complex, rewards are not usually instantaneous and progress is sometimes hard to recognize. While finding caregiver support through special groups is now easier to find, having the time to attend groups or seek personal therapy can be an obstacle. Another obstacle for finding support is the stigma that still exists regarding mental illness. Despite these hurdles, caregivers often exhibit or develop characteristics that enable them to help in the best way that they can.

From talking with other caregivers in similar circumstances and from my own experience as a caregiver during my son’s recovery from schizophrenia, I have come to recognize the caregiver behaviors or traits that seem to be most useful to facilitate the recovery process. The traits are not presented in any special order and vary in importance depending on the individual and perhaps the stage of recovery. Certainly, a caregiver is usually more actively involved at the beginning and, hopefully, less involved when a loved one reaches a more independent level of functioning.

Persistent

One valuable trait that is observable in most caregivers is persistence. Because schizophrenia often appears gradually, parents or caregivers may have faced earlier challenges with loved ones related to inattention, social withdrawal, or depression. This means that care-giving often begins long before a diagnosis of schizophrenia.

In my son’s case, he was diagnosed with ADHD as a young child. I have talked to other mothers with similar experiences. He was never really a behavior problem at school and not really at home, but he did have trouble focusing on his homework and studies. As a result, I spent many evenings after work sitting with him at the kitchen table helping him pay attention to what he needed to do. It worked for the most part, but already our relationship was one that required me to provide extra structure. Later in high school, his more outgoing, social self gradually changed to social withdrawal and eventually clinical depression. As you may know, in 50% of the cases, clinical depression precedes the advent of schizophrenia. These changes also demanded special attention – psychotherapy, eventually medication, and extra interventions beyond the “normal” parenting of a teenager. Then at age 18, the unthinkable happened and quite literally caught me off-guard. He was diagnosed with schizophrenia. At that point, the caretaker wheels needed to be in full gear! Looking back, at any time during the 20 or 30 years of caregiving, it would have been easy to give up! And for many caregivers that I have talked with, the same thoughts have probably been there such as “I just can’t do it anymore!” What we experience as caretakers requires an enormous amount of persistence.

When a doctor says, “this is as good as it gets” and you know as a caretaker that there has to be better – it takes persistence to continue to find “the better.” Or just when you think everything is fairly stable, then a relapse occurs – that takes persistence. Sometimes when I tell others about those early years, they have said that maybe I was in denial- that I wasn’t facing reality. I heard discouraging comments about schizophrenia being a lifetime illness and that he would always be disabled. Instead of denial, I have framed my reactions as persistence. That persistence helped us find him treatment from someone who believed in the recovery model. Of course, it is true that he has a lifetime illness, but he can still reach recovery standards. Persistence eventually produced results and denial would have led to abandonment. I have a friend who withdrew her son from a long-term treatment program because they refused to give him the medication that has helped treatment-resistant schizophrenia. She brought him home and worked with a psychiatrist on an outpatient basis so that her son could have the clozapine that he needed. I am confident that there are many more stories like this. That is what defines persistence. I say “hats off” to the persistent caregiver!

Receptive

Another important characteristic of a good caregiver is acceptance and receptivity. Providing education about schizophrenia or mental illness to families can be extremely important and including families on the treatment team can improve recovery and reduce relapses. Loved ones who are able to attend a seminar, a support group, or a NAMI Family to Family program, can gain invaluable information to help the family member suffering from mental illness. Being open to learning as much as possible about the illness and finding the best treatment methods can make such a difference. In our case, I had to eliminate all the old theories of schizophrenia that I had learned in graduate school in the 70’s. My personal research brought me up to date and provided a whole new vision of what might be possible for my son. Most people, in general, are exposed to so many different stereotypical ideas and stigma related to mental illness and schizophrenia, in particular. Attending educational programs that confront these myths and explain treatment options opens new doors. Being receptive to new ideas, new treatments, new paths for loved ones is a characteristic that I see in many caretakers. And learning really never stops, because research is continuing to find new options. That is why many caregivers continue to attend programs with newer, up to date information or read about hopeful discoveries.

Supportive

This seems like a given for a caretaker because it basically defines care-giving – an act of support. But what I am referring to here is being willing to provide the environment and structure that best helps the recovery process. For some that may be hospitalization or more long-term care. For others, that may mean living at home beyond what is culturally expected. Because of better medications and limited inpatient options, many with serious mental illness receive outpatient treatment which works best in a structured environment. Because of early interventions, my son has never been hospitalized. Not that hospitalization is a bad thing, because it can be life-saving for many. But like many in this day and age, he was fortunate to be able to live at home when he needed extra support and structure, such as when he was first diagnosed and after a major relapse. Outpatient treatment is what Treatment Advocacy Center recommends when it is possible. After a major relapse that required my son to take a break from college, he found comfort from the consistency and structure of being at home, sleeping in his own room, and the routine of being in a family setting again. His medication could be adjusted with regular visits with his psychiatrist and eventually he was able to participate in a more formal outpatient treatment program at a local hospital for several weeks. This living arrangement continued for several years while he finished college on a part-time basis. I do not think this arrangement is uncommon. Other friends who have adult children with schizophrenia also have provided a structured, consistent home environment for them during the recovery process. While the recovery process is different in length for many, I believe that this consistent support can be therapeutic and reassuring both to the loved one with mental illness and to the caregivers as well. Of course, the arrangement has its challenges, but there are many advantages to the comfort and security of a home environment. It is also reassuring as a caregiver to know where your loved one is!

Resilient

When I was practicing psychology, I often used metaphors to explain the dynamics of resilience. Learning and memory can be facilitated by pictures and images. To explain resilience, I am reminded of the Russian Nevelashka dolls. They have a rounded, weighted body and when pushed over, they bounce back up. They do not stay down! Mental health caregivers often act in the same way. Obstacles are constantly getting in the way of progress. Maybe a medication no longer works, maybe symptoms have returned because of excessive stress, maybe a trusted treatment provider has left town or retired, maybe a close friend is afraid to visit because of stigma or stereotypical ideas, and so on. If you are a caregiver, you know the list of obstacles and challenges can be endless. What caregivers usually learn is that they have to figure out how to bounce back and make it work. Sometimes that seems next to impossible and life may often seem out of control but with the help of your past experience and perhaps your own support system and resources, you figure it out. You figure out solutions out of necessity and you bounce back. Resilience can be learned and that is an important characteristic to have as a caregiver.

Spiritual

It is hard to go through any crisis without relying on or developing a spiritual explanation. Sometimes things happen that just seem like there is no other explanation or reason than a divine intervention. This is not research speaking but just my experience and the reports that I hear from other caretakers. My faith in God has deepened especially following periods of great doubt, anger, or hopelessness. Even though I pray on a regular basis for my son’s happiness, recovery, and independence, I sometimes wonder if I am praying for no reason. Is this really going to help? What seems to happen is that setbacks are turned around; problems get resolved; he figures things out; I find resources; and we all find ways to make it work. I know that he and I are both actively seeking solutions but it goes well beyond what we are actually doing about a situation. There really is no other explanation sometimes other than God answered my prayers. This spiritual experience can be described as being “lovingly rescued.”

Empathetic

Empathy is another paramount trait that describes good caregivers. Being able to understand what your loved one is experiencing can be difficult and painful. No family member likes to know how confusing and frightening their loved ones’ symptoms might be. It takes courage to listen and understand. It is frightening to hear that they want to harm themselves or that they cannot trust you or anyone, or that they are afraid that the voices in their heads will never go away. I remember finding a stack of photos in my son’s closet shortly after his diagnosis. They were pictures of very ordinary things – my husband’s workbench in the garage, our dog sleeping on the couch, me reading a book in the living room, his room, and of every room in the house. When I asked him about it, he explained that he felt like he was losing all of his memory and he wanted to hang on to the things that were important to him. How very frightening those early days were for him! Knowing what he was experiencing helped us to understand his fears and to find ways to acknowledge them and reassure him.

Also, as you probably already know, empathy can be more important than arguing about reality. One of the things that I learned was not to argue with Jacob’s belief systems, even if they did not make any sense to me. I can give you a bad example of how I handled this. I can’t remember the details of the disagreement, but it was related to a long-term school assignment. My husband and I had invited him home for dinner one Sunday after he first started college. This was still during an early part of his recovery. On our drive back to the university, we got into what seemed to me a ridiculous argument about when to complete the project so it could be turned in to the instructor on time. Both my husband and I were astonished that Jacob could even consider his plan because it was so irrational. I finally yelled, “Jacob, that is crazy thinking! That is your thought disorder getting in the way!” That was a horrible thing for me to say. Of course, he shut down. When we reached campus, we dropped him off without being close to a resolution. I will never forget looking at his face blankly staring back at me after he got out of the car. He had his own belief, and my approach completely bypassed his reality. Arguing with someone with a thought disorder is pretty useless and probably pretty hurtful. Looking back, being more empathetic and understanding before making any possible suggestions would most likely have worked better. Being open to understanding what your loved one is experiencing and accepting their viewpoint and ideas is an important part of their recovery. Learning to be a good caretaker can be a high learning curve.

A friend who has a daughter with a serious mental illness reminded me that often those with mental illness are stigmatized, ignored, or feel excluded from the rest of the world. She describes empathy as really listening to her daughter, respecting her feelings, and valuing her ideas even if she does not totally agree with them. Her daughter’s image of what is important or what constitutes recovery or a treatment goal may be very different from hers. Perhaps losing the weight gained from medication side effects or returning to a pre-diagnosis career path is not going to be as important to her daughter as it might be to her. That, too, is part of empathy and understanding.

In summary, I believe that these six behaviors -being persistent, receptive, supportive, resilient, spiritual, and empathetic define effective care-giving. These traits are not necessarily innate behaviors and they are not behaviors you engage in perfectly, even after years of being a caretaker. These are behaviors, however, that can be learned and can be helpful. Most likely there are other behaviors or characteristics not listed in this article that you may identify as helpful to you or to other caregivers. For that reason, I would like to encourage you to share your thoughts. What traits or personal factors do believe are important to assist loved ones through the recovery process?