Dear Dana: I Don’t Know How Much Longer I Can Care For My Sick Husband

Granddaughter supporting her senior grandpa

Dear Dana is a bi-weekly advice column for humans who engage in romantic relationships. Please send your dilemmas, issues, conundrums, assumptions, conflicts, anxieties, worriments, obstacles, complications, predicaments, queries, questions, and any other synonyms for “problems” to deardana@rolereboot.org.

Dear Dana,

I’ve been married for five years, and my husband and I were together five years before that. We met when we were in our early-20s, indulged in typical 20-something activities (drinking, smoking pot, staying out late, watching bad movies), and have somehow managed to grow and change together into seemingly responsible and functional adults. We have a young child, a mortgage, solid jobs—all the trappings of the American Dream. While our relationship has changed, shifting from passionate to compassionate love, I wouldn’t trade him or our life together for anything.

My trouble comes from an underlying issue that has existed since the beginning of our relationship; My husband is chronically ill. To be more specific, a virus he contracted as a teenager resulted in hospitalization, a coma, and ultimately, a life-saving organ transplant. His recovery was and continues to be remarkable. (My husband is congratulated by the nurses every time he goes in for a check up, because his 20+ year organ retention is so rare.) But organ transplant comes with many life-long complications, including frequent doctors visits, invasive tests, immunity-suppressing drugs, and even more serious consequences, such as organ failure or cancer caused by the immunity-suppressing medication. In the past 10 years, he has suffered from organ deterioration and two bouts of lymphoma, one of which is currently being treated by a chemotherapy trial.

It would be an understatement to say that I didn’t fully grasp the extent of my husband’s medical problems when we met and fell in love. But we work continuously to understand the reality of his and our future together. There is no cure for my husband’s illness; the cure is the illness, and much of the future is unknown. We live for the present as much as possible, but hoping and planning for the future remains a sensitive issue.

I struggle to align this reality with my own hopes and dreams. This year has been especially difficult with my husband’s chemo and caring for a toddler. I recently took a higher paying, more demanding job that I do not like, thinking that it was prudent to consider myself the breadwinner in case my husband is unable to work. I have creative aspirations, love to travel, and am always thinking of scaling down our urban life so I could work less and spend more time with my son while he is young. Unfortunately, moving is out of the question because of my husband’s doctors and my high salary feels essential to our future livelihoods.

I find myself slipping into dark thoughts of slogging through a life of obligation, fearful of taking risks because regular life for us is risky enough. I feel selfish and callous when I talk to him about taking a sabbatical, finding a lower-paying and less-demanding job, moving to another area. How can I hope for these things when his life is on the line?

Dana, I live for my husband and child, but I do not want to be a martyr. Nobody understands that even when these chemo treatments end (and thankfully they appear to be a success), the likelihood for other complications will always remain. In my worst moments, I imagine what life would be like if my husband were gone, because I can’t bear the thought of living through his decline, but need hope that eventually this specter will be lifted.

I’m not a religious person, but do look for support and meaning in other ways. How do I find hope when our future feels so unpredictable, but most likely as sad and difficult as the present?

Regards,
RZ

 

Oh, dear RZ.

You are doing such difficult work. You are tired.

I work full-time and have a husband and a toddler and, even with everyone being fully healthy, there are days when I feel overwhelmed and over-obligated. But that is because I do not have large problems. I have tiny problems that seem large because they are not held up against a real problem for scale. A tiny problem is like a twig underneath your windshield wiper, rattling and making a weird scratching sound against the glass. And sure, you could pull over and manually remove it, but you’re on the highway and that would look weird to other motorists and probably be dangerous. And then you park and get out of your car and immediately forget about removing the twig and won’t remember until you’re on your way home and being profoundly aggravated by it and its stupid scratchy twig nature, and this cycle will repeat for at least a week because life is the worst.

But life isn’t the worst—it’s actually amazing and pulsing with possibility, but we can’t see that when we’re consumed with the minutia of day-to-day life or, in your case, shadowed by a problem that looms. If I have a twig in my windshield you have a tree trunk smashed into the hood of your car—it is large, and must be dealt with, and makes you long for the days when twigs held the power to ruin your mood. The problem of your husband’s health has its own gravitational field and you, and all of your life, orbits around it.

No one knows what they are getting into when they get married. The key part of standing up at the wedding in front of others and saying the words, making the public promise, is that you have no idea what you are saying. You are willingly agreeing to see the other person through bad times you cannot imagine, which is only made possible because you don’t understand what you’re agreeing to. This is why I cry hysterically at every wedding I attend—I am overwhelmed by the perfect, glistening, tenuous hope radiated by two people making such ridiculous promises to each other.

You agreed to be with your husband through sickness and health, but at the time you didn’t know what sickness is. I’m paraphrasing John Green’s The Fault in Our Stars—sometimes you don’t understand a promise when you make it, but part of true love is keeping that promise anyway. You didn’t volunteer to make these sacrifices or spend a portion of your life feeling this way, but you are anyway. You promised that, if the worst happened, you would stay. And you are staying. And that is, frankly, beautiful.

But beautiful doesn’t help you get through the day. You work so hard. You have a stressful full-time job that takes up many of your resources, plus the adorable resource-gobbling presence of a toddler, plus your husband with very immediate and nonnegotiable health needs. These are three roaring fires that need fuel, and you are the one who feeds them. You feed them with your thoughts, your feelings, your time, your body. You are devoured each day, and you go to bed nothing but a soft skeleton, and you hope that your flesh grows back overnight so it may be consumed anew.

You know that this is unsustainable. You know you cannot do this any longer. This is evident to everyone who reads your letter and this is why you wrote to me. You are exhausted. You need, and deserve, help. You know that one day there won’t be enough of you left.

You live in an urban environment, someplace where home costs are high and childcare costs are high and more money, money, money, just a little more money is always required and all you have to provide in exchange for this rock solid financial security is the happiness of your middle years. You say, “…moving is out of the question because of my husband’s doctors and my high salary feels essential to our future livelihoods.” But there are doctors, good doctors, great doctors, in other places. And your high salary only feels essential. Not is. Feels.

Here’s something you already know but need to say out loud to yourself frequently: Money only solves the money problems. Once you are financially stable, additional money does not help you. Expenses grow to match income. You go to a job every day that you hate just in case one day your husband can’t work so, in that future, you can feel more secure while going to a job every day that you hate.

There are circumstances you can’t change, and there are circumstances you can change. Your husband’s illness is set. Your job is not. Becoming busier and more important and wealthier isn’t working, so stop walking down that path. Sit down, breathe, and, when you’re ready, stand up, turn around, and walk back.

Here’s a horrible fact: Changing jobs, and possibly moving, also means that you’re going to have to do more. You, who are so busy and so tired, must do more. It’s horrific and unfair and utter bullshit, but it is also necessary. You definitely need a new job. You probably need to move. One of those things would likely be sufficient to ease your burden, both would be ideal. The problem is that doing either thing will increase your burden in the short term and I’m so sorry for that. I’m so, so sorry. I want to sit with you on your path and stroke your hair and murmur apologies while you scream and tear at the soil and proclaim how unfair and unfair and unfair it all is. You are doing so much already and you need a change but to facilitate that change more is required and I hate it and it’s true. You must, for a short time, do more.

As for your fear of the future: You don’t have a future. No one does. The future is imaginary—it’s not real. The future is a group of hopes and fears and worries and terrors that whisper to you in your quiet moments. It’s why many people don’t allow themselves quiet moments, because they don’t want to hear what their voices say. The only tangible reality you have is today, right now, with your feet on the ground and your mind trying to peer through an impossible fog so it can recognize and solve problems that do not yet exist. But that never works because you can’t fix something that doesn’t exist. Worrying offers a small jolt of agency, followed by a long, rough tumble of anxiety. Stop solving problems in a future that is not real. Focus, instead, on solving problems that are here, now, before you.

Forgive yourself. You are neither selfish nor callous. You are kind and giving and patient and wonderful. But the kindest of us are often the most aware of, and abhorred by, their own desires for more. Of course you want time for yourself. Of course you want your flesh to stay put for a weekend. These are normal, sane, human desires. And, yes, of course you want your present moment to be done. You want to be in a world where you aren’t in orbit around this constant disease. This is why you imagine a future without your husband—not because you want him gone, but because you want this time of stress and unknowing to be gone.

RZ, you have a strength beyond strength. You are lucky because you already know what you want: more time with your child, space for creativity, a love that lasts as long as you promised it would. You know what you do not want: this horrible, soul-eating job. This stupid prison of money. These fears of a future that are only real because you are sacrificing your present happiness in hopes of avoiding them.

Stop working at a place that you hate because you’re afraid that your future will be worse if you leave. There are things that are worse than your present, but not many. You must take the strength beyond strength you’ve been using to help your child and your husband and your job and use it to aid yourself. I want you to leave your job and move away from your city and create the smaller, more simple life you crave, but that is easy for me to type. It is enormously difficult to do these things. These changes are large and take time.

But what you can do, what you can do right now, today, is turn to someone in your life and ask for help. Tell them that you are being consumed. Ask them to recommend a therapist who specializes in caregivers. Join a caregivers network. Well Spouse and the Family Caregiver Alliance are organizations dedicated to helping those who are caring for others and the Unitarian Universalist Association offers a way to seek spiritual solace outside of a traditional religious framework.

Know that there always is, and always has been, a deep well of hope within you. You had it when you stood with your husband on your wedding day and promised to be with him through this time you could not imagine, and you still have it today. Your husband’s cure is his illness. Your cure is yourself.

Dana Norris once went on 71 internet dates, many of which you may read about here. She is the founder of Story Club and editor-in-chief of Story Club Magazine. She has been featured in McSweeney’s, Role Reboot, The Rumpus, and Tampa Review and she teaches at StoryStudio Chicago. You may find her on Twitter at @dananorris.

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