Over the past two weeks I have shared letters from a therapist and a well spouse. Both of the letters gave personal insights into the process of losing hope, how we react when that happens and some ways of coping when test scores, diagnosis and just simple repetitive behavior indicate that change for the better is impossible.
Hope is what keeps us going. It carries us through the most difficult of times. It is the dream that in the end things will change, they will become better or return to the good that was (even if that “good” wasn’t so pleasant). As both letters indicate, losing that hope is beyond devastating. It requires mourning a life that is gone and forces us to go through all the stages of mourning. We experience denial(she really can change if only she wanted to, I don’t care what the test or therapist says). We have anger(and the guilt that accompanies our being angry at our spouse and everyone around us, which just makes us more irritated). We bargain as we try desperately to regain control over our lives. Then we experience depression as sadness and regret overwhelms us and there is no one there to understand or even just hold our hand. And then for some there is finally the gift of acceptance, but most of us never receive it.
For the well spouse who wrote me, couples therapy was devastating. “I could not handle getting my hopes up, and then knocked down again over and over.” Even setting it up was hard. “We tried several Psychiatrists before I found a female one that was supportive and understood a woman’s point of view and emotion.” Another well spouse told me that finding a therapist who was able to get past the sympathy for the ill spouse was difficult. To some therapists, the well spouse was the villain for wanting the sick person to consider their needs. And for another, therapy was life saving. “Therapy saved my marriage and my life. We both changed and learned how to have a marriage again. It’s a different marriage than we had before, but it’s working for us. We are a couple again.”
The therapist who wrote presented the alternative of leaving the marriage as a coping strategy. And as she relates, more often than not the reaction of the well spouses she councils is anger. But as one well spouse told me “I couldn’t even think about leaving the marriage until I forced myself to finally accept that change was never going to happen. I think that was what made me so angry. It took me a very long time and I fought against it. Finally I considered that choice, leaving. I guess that was when I accepted things were never going to get better. I decided to stay. Making the choice made my staying with her and with the situation easier somehow. I guess I just stopped fighting the situation. This was something I chose and that somehow made me feel more in control. After my rage subsided, I was grateful to the therapist for having reminded me I had a choice.” Another well spouse who decided to cope by leaving the marriage told me that she would never have seen it as a choice without the help of the therapist. She would never have been able to go through with the divorce except that her therapist “held (her) hand all the way till the end.”
But the common threads that come through for all the well spouses are that first, acceptance of the situation must come before you are able to cope. “I have (now) accepted that because of the illness, he will not be able to change his words (thinking before speaking), his actions (embarrassing us in front of others), and his lack of participation in family activities. I have come to be grateful for the fact that he is able to get out of bed every day and still work (after being diagnosed 28 years ago).”
Second, choose a therapist carefully. Make sure your therapistunderstands your unique situation as well as the implications of psycho-neurological testing and can use the results to set realistic goals in the counseling sessions. Sometimes a special education teacher can better help you and your ill spouse develop strategies based on the deficits shown in the testing than a therapist can. “It was a teacher friend who read the report and came up with all sorts of great ideas like having him keep a pad in his pocket and write down everything he needed to remember for the day. She even had him write down to remember to compliment me four times a day. He agreed to look at what he had written every hour and tick off what he had done and work on what he needed to do. It’s weird, but it worked. When he went into the hospital, she suggested we play Connect Four to keep his fingers nimble as well as his mind working and it helped us pass the visiting time more pleasantly.
Third, coping is greatly enhanced with a support group. Of all the letters I have received, the majority site a well spouse support group as the most helpful thing in learning to cope with life as it is. “My well spouse support group…. was a lifesaver for me.”