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The day I found out I had ALS and that my husband was now my caregiver

Kevin and kate weddingKevin and Kate on their wedding day

The state of Indiana recently made the Structured Family Caregiving program available to spouses. We applaud the state of Indiana for their support of the husbands and wives who are navigating the care of their spouse. This month, Seniorlink is publishing a series of love stories to showcase the triumphs, challenges, and emotions of the couples that care for each other.

If you are caring for your spouse at home in Indiana, find out if you qualify for this caregiver support program.

To have and to hold

Most little girls dream of their wedding day. A beautiful white dress, being surrounded by family and friends and exchanging rings with “the one.” I was no exception. And while I was not actively looking, I had found “the one” while traveling for work in November 2016. Kevin. He immediately knew I was the one, I quickly felt the same and a whirlwind courtship resulted in a perfect proposal 9 months later. I said yes, obviously, and together, we began planning our perfect wedding, enjoying our engagement and eventually moving in together. It was the happiest of times for us.

Until it wasn’t.

For better, for worse.

There I was enjoying my 30’s, when I was blindsided with a diagnosis of ALS. It is a degenerative neuromuscular disease, weakening muscles throughout the body and impacting physical function. It’s a condition diagnosed less than 20,000 times per year. It’s a life-sentence with little FDA approved treatment for symptom management– without the guarantee of a cure.

To say I was in shock, would be an understatement. I was young. I was healthy (or so I thought). I was excelling at my job, ironically, as a nurse in chronic pain management. And, I was only 3 months from my wedding day.

One question haunted me, “How am I going to tell Kevin...?”

In sickness and in health

Looking back, the signs had been there. I struggled with certain zippers, fumbling with buttons here and there. My speech became slurred in a way that suggested that something more than my relaxed California vibe and love of wine was the culprit. Most remarkably, I experienced weakness in my right hand that over the course of a few years, worsened – and eventually prompted me to visit an orthopedist and then a neurologist. This progression of symptoms, arguably spanning over 3 years, led me to the official diagnosis of ALS.

As one might imagine, I experienced all the feelings ranging from disbelief and depression to anger and guilt. All of those feelings were mine as I began to comprehend the realities of this absolute shit diagnosis. And then it hit me, Kevin didn’t sign up for this either. When Kevin proposed, it was because he believed I was his soul mate, and as a married couple we would add balance to each other’s life. My diagnosis shattered the idea of a balanced partnership. And as we discussed the impact of our future together, and cried – a lot – it was clear that from this day forward, we would be anything but balanced. Our vision of “husband and wife” would progress to “caregiver and patient” sooner than any wedding vows foreshadow.

And then I told him it was OK to leave. I begged him to leave.

He stayed.

To love and to cherish

Kevin was all-in, as both husband and caregiver and made this decision without hesitation. We had less than 3 months to complete the final prep for our big day. The invitations were sent, the bachelor/ette parties were enjoyed and the final details of our would-be “perfect day” were complete. We made the decision to share news of “our” ALS diagnosis only with immediate family and closest friends, so as to avoid a cloud of distraction to the wedding itself. I am not sure what caused more stress: keeping our secret from friends or the wedding prep. On top of it all my symptoms worsened. Despite treatment, which I started immediately upon diagnosis, I found myself increasingly worried if I would be able to speak my vows clearly and with the conviction I felt on the inside. I needed Kevin and all our family and friends to know how much I loved and cherished him. I wanted all of our guests to leave the celebration assured about our commitment to each other and optimistic about our future together.

The day of the wedding was close to perfect. The emotions of happiness and love triumphed. The details of our perfect day were executed flawlessly. And as we exchanged vows, I articulated my love and admiration for Kevin…and even thought the priest called me by the wrong name, our guests could see our love pouring out with smiles and laughter.

‘Til death do us part.

Soon after, Kevin and I began to embrace our “new normal” a term synonymous of acceptance in the worlds of those struggling to accept. Kevin is my husband but he is also, my caregiver.

We both work, but my hours have been reduced as have the scope of my responsibilities at work, and stress around the financial responsibilities of our household. My ability to help around the house is limited, some days more so than others, and Kevin has picked up the slack. On days when I need help getting dressed – zipping up my boots, buttoning a shirt or even pulling up my socks, Kevin jumps in to help. Anyone who knows me well, knows I tend to offer help more than I ask for it – so this new dynamic has been an adjustment for both of us. Translation: I continue to work on being patient with those trying to help me. I work on this a lot.

Our vision of our future had changed. Beyond adapting our everyday routine to fit our new normal, we have had to come to terms with its impact long-term. The only life milestone I dreamt of more than my wedding day was that of becoming a mom, which will sadly never come to pass. Kevin and I decided not to have children and consulting with several different medical professions and learning that the stress of pregnancy would exacerbate the disease’s progression. We abhorred the thought of creating a life that we wouldn’t be able to equally care for going forward.

We try to focus more on enjoying the present than we do planning/worrying/saving for the future – we book the vacation, we buy the event tickets and find the time to spend with each other and our village; the family and friends we cherish most.

We take new symptoms as they come, begrudgingly, but accept that as our new baseline as opposed to a longer-term concern.

We don’t go to bed angry.

 I pledge…

So, this is my story, right now. I wrote it to raise awareness for ALS and the reality of this horrible disease, to highlight that disease affects families, not just patients, and that caregivers can be in their 30s, 40s and in many cases, even younger. Most importantly, my desire to share my story is to honor my caregiver. The man I will spend the rest of my life with and true partner in crime in our fight with ALS.

I love you, Kevin.

-Kate

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