"On Healing" July 2002

Posted on Mon, Jul. 15, 2002
Caregivers shouldn't fear seeking help for themselves
By Dan Gottlieb

Dear Dr. Dan: I have been married for more than 30 years, and have three grown children. Although two are doing quite well, one is living alone with her teenage children after being divorced for the second time. She struggles both financially and emotionally.

My husband has had chronic anxiety and depression for most of our married life. Fortunately, he is able to maintain his job. Although he is getting help, he has been with the same psychiatrist for 15 years. Despite medication, there have been many difficult times. He says he is content simply watching television and doesn't want to do anything else. As his depression worsens, his hygiene is poor and his alcohol consumption increases.

I have a sister with a developmental disability who is living with a companion. Although this arrangement works well, I am responsible for supervision, and have her at least one weekend a month and vacations and holidays. My mother is 95, in good health, in assisted living. I take care of her needs, too.

I see the pattern of my years: going from my sister's difficulties, to helping my daughter, to my husband's problems, to taking care of my mother. My children are growing estranged from one another, and family gatherings are very stressful. I have done everything in my power to diminish the stress and make everyone happy, but it is not working. One of my children has become so distant that she rarely returns calls. I know she worries that she is going to be like her father.

I need help to get myself some objective insight and to bring the family together. Now I am even isolating myself.

Dear reader: This well-known serenity prayer opens every 12-step meeting:

God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

After the prayer, the "steps" are read. The first several steps address the issue of powerlessness - realizing that you are not able to control that which you want to control.

So my first piece of advice is to find an Al-Anon meeting in your neighborhood. You can find a convenient one in the telephone directory. Next you must figure out what you can be helpful with and what you cannot.

Let's start with what you probably cannot change. Your daughter, although she is obviously having a difficult time, is an adult. I doubt you can change her circumstances. The same is true with your sister and mother. So you cannot change your loved ones' circumstances, or their suffering. But there is something you can do for them: When most of us suffer we want compassion and companionship, not intervention.

I am confident that all three of these women will appreciate your care and kindness. As far as your husband is concerned, I'm sure you know that you cannot change his depression. But perhaps you could offer him the following information and let him decide what to do:

Although research suggests that long-term therapy is more effective than short-term, some studies have found that the benefits are greater during the first 18 months of treatment. After 15 years, his relationship with his psychiatrist may be very valuable for him, but it is probably not having an impact on his depression. The department of psychiatry at the University of Pennsylvania offers a program for people who have had a long-term depression that's been difficult to treat. Your husband might benefit from a consultation that will look at both his medication and psychotherapy.

I'm not necessarily recommending he make a change - just get a consultation. However, like your daughter, sister and mother, he is an adult and can choose to live his life essentially as he wishes. Now, believe it or not, you can also live your life differently if you choose.

Out of everyone in your family, I am most concerned about you. Many of the estimated 54 million American adults who are caregivers are at risk for diminished health, stress-related disorders and depression.

Your withdrawal could be an early sign of depression or a symptom of emotional exhaustion. And there is another possibility: Your withdrawal could be your body/mind's subconscious way of quitting your job as a caregiver. In either case, the symptom must be acknowledged. Caregivers also are at risk for self-neglect. Many place other people's symptoms and illnesses above their own welfare.

I know you don't need another person lecturing you to take care of yourself. You described in your letter how this is a long pattern of behavior and may be there for a reason. If you are right (and I suspect you are), you can only begin to explore this after you have given up this apparently compulsive pattern of caregiving.

I would guess that your desires are on the other side of your helplessness. You spend many hours with others. You can begin to change your life by spending more time with you. I would also guess that you long for the same kindness and compassion you offer your loved ones. Caregivers often get neglected - not just by those they care for, but by themselves.

If I were your caregiver, I would sit with you as we talked about your exhaustion, helplessness and fear. We might hear about your emptiness and anger at the people you care for. We would talk about dreams that have died and desires that have never found a voice. And through this process you may discover that simply listening to the voice of your heart will not necessarily change anything in your environment, but it might make you less afraid to stop working so hard.

By the way, I have not forgotten your concern about your children feeling alienated and distant. I frequently tell parents that if you sell your soul, your children will be stuck with the monthly payments. The kids often see their future in their parent's behavior. On the other hand, if you have the courage to face your demons to pursue wholeness, your children will reap the benefits.

Posted on Mon, Jul. 01, 2002
Focus on who you are now
By Dan Gottlieb

A man with worsening multiple sclerosis sent me a long e-mail. He described a dramatic decrease of mobility and a lessening of strength and stamina - changes that most of us will experience, usually over a much longer period of time. In his case, the change "strikes at the core of my very being. I worked and played hard because my energy seemed almost limitless," he wrote. "Now, just that typical preparation for a day's activity (shower, shave, dressing) can exhaust my limited reserves." Because of his limitations, he left as administrator of a large nonprofit - work that had been "more than my livelihood; it was my reason for being."

He said he believes a change of thinking about his life would be helpful, but does not know how to make it happen. He wondered about exploring faith, quiet contemplation, or therapy for himself and his wife, who is now his caregiver. He feels he is floundering.

Dear reader: I read your story several times before trying to answer. As I did, the part of me that wants to be helpful was generating ideas about utilizing your knowledge and skills to help others. I wanted to tell you how this can restore what seems your greatest loss - your sense of purpose. I also wanted to say how helping others can raise endorphins - the brain's natural antidepressant.

Then the psychologist in me wanted to talk about grief and loss - about how life is loss and how we live pretending it will never happen, so when we lose things, we are surprised. I wanted to say that, eventually, all of us lose everything we love, including life itself. And that these losses must be mourned; we must give ourselves time to cry and experience the sadness of our own mortality, and that it is only in facing death that we can fully experience life. I wanted to share about how faith happens only when the ego is finally quiet - an opportunity that presents itself for you now.

When I read your e-mail the final time - well, I still wasn't ready. Your note was clear, you talked about who you were and what you lost. But not who you are. So, today: Who are you?

His reply:

Dear Dr. Dan: I haven't fully come to terms with who I am now, or how to live this life, such as it is. I remain involved at the agency part-time, paid for one day per week, though I actually go in infrequently.

I am the husband of a woman to whom I have been married for 32 years. Though my wife is neither weak nor dependent, our roles have been reversed, with the dominant partner now recessive. This refocus has deepened my love and made me better appreciate the depth of hers, but the scope and intensity of my changes frighten us both, and create increasing demands upon her patience.

I am a voracious reader, and I am also writing. And too often, I am a guy struggling to get through the day who's weak, immobile, and dispirited.

Dear reader: Like most of us, you define who you are based on your labels - administrator, husband, etc. But now all your labels have changed. Because your mind works the way it does, you still struggle to define yourself the way you were before the MS. So you find yourself frustrated, experiencing loss, floundering. I would suggest that your emotional pain is not because of your disability. It is because you have lost most of what you were once attached to - career, role, sense of manhood, even your body. Which leaves you asking that almost impossible question: If I am not my job, role, body... who am I?

When I first became a quadriplegic, I would get very upset when I dropped something on the floor, needed help with my food, or was simply fatigued. I would feel angry, embarrassed, and sorry for myself. After a few years I was at a restaurant and noticed that I was quite comfortable asking a friend to cut my food. I wondered what had created this change. And then I realized that for the first two years, my mind still believed I was an able-bodied man who was clumsy or lazy. But at some point, the Dan Gottlieb I thought I was had died. Somehow, without noticing, I had become a quadriplegic.

You and your wife would do well to be in therapy with a marital therapist who is not afraid to face your pain. He or she could provide a safe forum in which you could understand your new roles and the fear and frustration that accompanies them. Yet therapy will not tell you how to be a person with a disability. Nor will it tell you who you have become. This will evolve from carefully and nonjudgmentally observing yourself and your life. You are fighting a battle for life itself. You suffer because you cherish the life you have known - and won't give up the old roles easily. You suffer because change is painful and humans desperately try to avoid pain.

What you are learning now, what I learned years ago, is that if we live long enough, eventually we lose everything - career, health, youth, power. Those who live their lives believing those labels define them suffer greatly when they are lost.

So who are you now? The same person you were 10 years ago. Like the rest of us, you suffer, fear, flounder, laugh, love, hide, hate and live. You eat, breathe, bathe, think, feel, sleep and wake. You feel compassion, shame, rage, pride, grief and gratitude. You have lost your labels. Does that mean you are more or less than you were?

Please don't fear your suffering. It will stay as long as it stays. If you battle against it, it will stay longer. I hope you have the courage to sit inside your skin and discover the man you always were.

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