Confessions of a care-giving husband

Reflections as a care-giving spouse

People ask me how I am doing with some frequency these days. Sometimes, of course, they are employing the unfortunate linguistic device we Americans have devised wherein we ask how someone is doing in greeting, though we do not particularly care. At other times, the person asking the question is genuinely concerned about how I am doing. Discerning whether a person is merely offering a friendly, albeit confusing, greeting or is actually inquiring as to how one is doing is not always an easy feat. I tend to err on the side of caution and restraint when in doubt. Of course, and this will not be news for those who know me, my nature is to never tell anyone how I am truly doing.

I have learned though, that if someone takes the time to seriously ask how I am doing, they probably care and want to know. This requires me to be real with people who express a desire to be real with me. This exchange requires risk for both people but, alas, this interaction is essential for a true, human relationship.

It is sometimes difficult to get in touch with one’s own feelings when dealing with significant circumstances, let alone to communicate those feelings to another on short notice. This essay then is one part identifying the feelings that I experience as I care for a seriously ill spouse, and one part communicating those feelings – hopefully in a manner with which others can understand and identify. I hope that my experiences and realizations will offer hope and encouragement to others who may walk a similar road.

Terri during a chemotherapy treatment at SVMC

I can say succinctly that, after more than two years of caring for my wife while she battles metastatic cancer, I have come undone. Any illusion that normalcy would return to our lives has long been shattered, for things will never be as they once were. The ups and downs, the shocks and surprises – both serendipitous and horrific, the progress and the setbacks, are exhausting, deflating, and numbing. Easy hope and naive confidence give way to a realistic acceptance that borders on resignation. I am not in control of this universe, and no amount of delusional, wishful thinking or religious mumbo jumbo will make it so. Very possibly the only thing I am in control of is my response. I can respond to disaster, as did the patriarch Job, by maintaining my integrity – or not. This is my choice. Still, I have come undone.

One realization that I have been forced to accept during this journey is that I cannot make it alone. This may be obvious for many people in a similar situation – but I am not one of those people. I tend to be introverted, introspective, self-reliant and self-sufficient. Truthfully, left to my own devices, I would go through this experience alone as well, devoid of any type of human support network. However, this situation is beyond me and I need others – at least once in a while. I have several people who are available for me, people who I can call or message at any time, and they will listen. The support of loving friends and kin is essential.

This journey has also proven to be a roller coaster ride of experiences – and I don’t particularly like roller coasters. An outside observer might assume that a person proceeds from a cancer diagnosis, through treatment, and then from there, hopefully, into recovery. The reality on this journey has been far more like that proverbial roller coaster ride. Ups and downs, twists and turns, and long, slow climbs with gut-wrenching descents that feel suspiciously like a free fall. I have watched as my wife seemed to be doing well only to experience a life-threatening setback, to begin recovering again, and to then face yet another life-threatening setback. The experience just feels like a roller coaster ride.

One of the more bizarre experiences of this journey has been to find myself, at times, mourning the living. This may sound odd, indeed it probably is odd, but it is true nonetheless. There have been times, as hope was fading because treatments were proving ineffective, when I have found myself mourning and grieving a loss that has not yet occurred – and, indeed, may not occur.

The changing and redefining of roles is also an unsettling and challenging part of this journey. For instance, my wife always earned more money than I did due to a complicated set of circumstances. She has always worked more than one job for as long as I have known her, yet she is now unable to work at all because of her illness. My wife was always been the more nurturing one in our relationship, yet now I am thrust into the role of being a caregiver, household manager, and sometimes nurse. Shifting roles create an ongoing challenge that emerges as her condition changes.

Living with uncertainty has become our “normal” during this journey. Things that most couples might take for granted, like scheduling work, dinner, or a visit with friends, are now things that we find to be filled with uncertainty. With a major illness of this sort we never know what a day will bring, what she will be able to eat (or not eat), and even whether we will be at home or in the hospital (there have been more unplanned trips to the hospital or doctor than can be counted). Uncertainty has become a defining characteristic of our lives.

Riding an ATV at a ranch on the Crow Reservation where we both worked shortly before Terri was diagnosed with brain metastases

I have found that this journey has increasingly left me frazzled. This may surprise those who know me since I usually try to act like I have everything under control. However, more than two years after being thrust unexpectedly into the role of caregiver for a sick spouse, I find that my capacity for pretending that all is fine to be increasingly limited. I am frazzled, stressed, and emotionally spent. None of this should be construed as a suggestion that I regret my role or responsibility to care for my wife. However, the experience does strain the emotions over time.

The tension between paranoia and prudence can be difficult to maintain during a journey such as ours. For instance, I twice hurried my wife into the emergency room for identical symptoms – pain in her neck and shoulder, and some shortness of breath. On one occasion there was nothing wrong – a false alarm. On the other occasion she was rapidly diagnosed with a pulmonary embolism (blood clot in her lung) – a life-threatening situation that required a several-day hospitalization and a six-month course of anti-coagulants. There are many other examples that I could cite. Sometimes it is difficult to know whether my concern is paranoid or prudent. Considering what she has been through over the past two years, I err on the side of overreaction when I have any doubt.

The tension between pessimism and realism can also be difficult to maintain during a journey such as ours. Denial is one of my pet peeves. I find no value in handling difficult situations with delusion. I prefer reality. However, my wife sometimes views my realism as pessimism – and sometimes she is probably correct. I have learned through my experiences as a caregiver that, important as it may be to remain realistic, it is also very easy to cross from being realistic into being pessimistic. Realism is always helpful, but pessimism is never helpful.

Terri loves bubble baths - but turning on the whirlpool jets proved to be an interesting experience!

I have discovered, during the course of this journey, that relationships are today. It is easy to assume that one has plenty of time to say what needs to be said, to do what needs to be done, and to live what needs to be lived. We do not. None of us knows when disease or tragedy may strike. Spend time with those whom you love today. Relationships are today.

Caring for someone you love during a significant illness like cancer is both challenging and rewarding. Being unexpectedly thrust into the role of caregiver, particularly at a young age, certainly brings many changes – changes that can create tension and frustration. I hope that my own experiences and discoveries shared in this essay will be helpful and encouraging to those who are on a similar journey.

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