The Caregiver as Stroke Survivor

The Caregiver as Stroke Survivor
By Gregory Wasson
Dave and Greg

Although it’s usual to distinguish the stroke survivor from the caregiver, as if they are somehow separate creatures, in fact, when a stroke strikes, especially in the case of a couple, there are two stroke survivors, the patient and the patient’s spouse or partner.

On March 7, 2008 my husband David, with whom I've lived and loved for over 35 years, suffered a massive stroke at 5 in the morning. He was 58. He had no risk factors, but for some unknown reason a blood clot formed somewhere in his body and went to his brain. In a matter of just a few minutes the right side of his body became completely paralyzed and he lost the ability to speak. It was terrifying and completely unexpected. Neither Dave nor I had any experience with stroke in our families. We had no idea what was happening until after the paramedics had rushed David to the hospital and he had undergone the initial scans.

Our life together suddenly changed forever.

I want to share some of what David and I have experienced on this long journey of recovery and re-imaging of our life after this catastrophic event.

Everything changed. Some of it awful, some depressing, some a cause of shame, but there have also been wonderful moments of hope and transformation.

So what happened to us? It varies, of course, from person to person and for each couple. Here are the things I have seen occur in our own unique situation, especially in the first year or two after the stroke.

  • A sudden change of roles within the relationship. David had always overseen all of our tax, banking, and everyday household concerns. He was organized and always on top of all these matters. In comparison to me, he understood it all. I took it for granted that he would insure that everything got done in this regard. Suddenly, he could no longer do this and I was cast into what I had always seen as a chaotic and frightening mess. In an instant I suddenly became a full-time form filler outer, a full-time accountant, a full-time payer of bills, a full-time go-between with Dave’s HR department, the Social Security Administration, the hospital, and long-term disability insurance company. It was overwhelming; especially in the context of the emotional turmoil I was experiencing during the initial weeks after the stroke. 
  • A diminishing or sometimes even loss of intimacy. Intimacy can mean various things, but I’m talking about sex. It seldom gets mentioned, but the loss of sexual intimacy can take its toll on a relationship already stressed by the stroke or brain injury, causing a mix of emotions: sadness, fear, resentment, and guilt. 
  • Financial worries. How was everything going to be paid? Was the mortgage paid automatically from a bank account? How could I find this out when David couldn't tell me? Check his bank account? What was his password? He couldn't tell me. Happily, he had left a list of his passwords on his computer desktop -- something computer security professionals, by the way, would not approve of. I eventually found the list as I frantically searched through his files. 
  • Loss of career. For many people the loss of a career, once cherished and enjoyed, can be devastating. Because of the circumstances, I had to quit my job at Hewlett-Packard the day after David’s stroke. It was impossible for me to handle a full-time job with everything else that was going on. And that added to my worries about our finances. 
  • Hygiene issues. Put bluntly, I’m talking about pooping and pissing. As is the case with sex, we don’t like to talk about it. It’s private, awkward, and embarrassing. I had to help David go to the bathroom. This all entailed a loss of privacy for both David and me, but as the children’s book puts it: Everyone poops. You have to get over it. We did, but it is a shock and it brought home to me in a very visceral way that our life together had undergone a major change. 
  • Stroke becomes the relationship. Everything revolves around the stroke. Everything is related to the stroke. Stroke becomes the primary focus of your life. This is especially true in the beginning, the first year or two after the stroke -- that’s not unexpected -- but it can also seem to become the core of your relationship. All else seems to pale in comparison. Nothing else matters. For a spouse caregiver, a loving relationship can tend to drift into becoming something else, based primarily on a disease. 
  • Personality changes. A stroke survivor can exhibit some personality changes as a result of a stroke. He or she might become aggressive or even abusive. The survivor can exhibit an inappropriate or excessive emotional response to things. It’s called emotional lability. Dave, for example, might start sobbing at a commercial on TV for laundry detergent. It was disconcerting and worrisome at first, but it is not uncommon. I eventually understood this, but I was not prepared for it. I thought I was doing something wrong. That I was not supporting David well enough, and was to blame somehow. 
  • Depression. All of these things can lead to a growing sense of depression and that can make an already bad situation even worse. Make it seem unendurable. 

How did I move past all of this darkness?

I came to realize a number of things:
  • Time heals all wounds. David said this once to a group of residents at the UCSD Medical Center -- when we were sharing our experiences with a group of new doctors. It sounds trite, but it’s true. Some problems that seem unsolvable or overwhelming in the beginning gradually diminish in importance over time or even disappear. It pays to be patient. You learn to be patient as a caregiver.
  • The realization that you get to start over. You don’t always get a second chance in life. But a life-changing event such as a stroke, gives you that chance -- if you take advantage of it.
  • Change is good. We like being comfortable, but change shakes that all up. What was important becomes trivial. Change also makes us delve deeply into ourselves to find the inner resources we need to face a difficult situation. You have to embrace the change and when you do, you become strengthened, empowered, and can move on.
  • You are imperfect. I’m not perfect, but my failures don’t define me. Acceptance of those failures and imperfections take away their power to paralyze and control you. I am not the perfect caregiver, but I strive to do the best I can do. It’s all any of us can do. 
  • The person you are caring for is imperfect. A stroke survivor does not become a saint by virtue of having a life-threatening event. They may not always appreciate or may under-appreciate what you as spouse and caregiver have lost, how you have suffered, the deep pain you feel. They may not see or acknowledge all that you do behind the scenes to make their recovery possible.
  • The person you are caring for can also be a source of strength. My biggest source of strength during the first couple of years after David’s stroke was David himself. When I felt overwhelmed, I witnessed David’s dogged determination and refusal to give up despite the crap he was going through, and I always regained my sense of hope from his brave example.
  • Don’t play the martyr and try to do it all yourself. Burnout is often a problem for caregivers. We want to do it all for our loved one. I felt burnout many, many times. It’s important to take care of yourself so that you can effectively continue to offer care for your partner. At one point during the first year after the stroke I had friends come in and care for David for a weekend. I rented a condo in San Clemente and relaxed for several days at the beach, watching way too much bad TV, staying up late, and staying in bed until noon. The time apart restored me. This vacation from the stroke restored me. Don’t feel like you are betraying your loved one by doing this. It’s good for both of you.

So what did I learn from all of this?

In my experience, a glorious day doesn't ever come when everything is made right and the problems that plague us as caregivers suddenly go away. The sun doesn't suddenly burst forth shining from behind the dark clouds. The process of caregiving and recovery proceeds in stops and starts. But progress does come about and you do move forward little by little, with exhilarating successes and, yes, frustration along the way.
An ancient Stoic philosopher named Epictetus, whom I have grown to admire a great deal during the last few years since David’s stroke, taught his students that there are some things in our control and some things that are not -- wisdom lies in understanding this and acting accordingly. For me this has come to mean, among other things, loving David and caring for him -- as imperfect as that love might be at times, how poorly expressed -- persevering with that imperfect love for as long as is granted to us. That’s all any caregiver can do. It’s what every caregiver should aim for.