Sjögren’s Syndrome: Reflections of a Caregiver

04.24.2019Real World Health Care

Real World Health Care_____________________________________________________________________

Sjogrens

By Jonathan Morse, MSc, member, National Board of Directors, Sjögren’s Syndrome Foundation

April is Sjögren’s Awareness Month. This article is reprinted with permission of the Sjögren’s Syndrome Foundation. It was originally published in The Moisture Seekers, Volume 37, Issue 03.

Today is not terribly different from any other day. It begins….slowly.

There is no way to know how my wife will feel. Will it be a sick day? Will it be a pain day? Will it be both?

I know these questions are not helpful. Instead, I need to know what to do and what to say. Instead of questions, I need to project happy thoughts and find the sunshine.

The role of Caregiver is demanding, unselfish and ever-present. The role requires an ability to not just listen, but to hear and then measure the appropriate response. Because my wife does not want help with everything. She still wants to preserve whatever bit of independence she can, because she has already lost so much. My tendency is to react, to offer to do everything.

It was not always like this. She used to be able to do so much more: clean the house, go for a run, take an exercise class, take a spin class, work in the garden, have a job, have a schedule – get up and go.

Over the many years of battling Sjögren’s, so many therapies and medications have been tried. And while the disease chose its own paths of advancement, the therapies and medication side effects have imposed their own blend of affect, interaction, ineffectiveness and ultimately uselessness.

The search for better and more effective treatment is endless. I spend an infinite amount of time reading blogs, web sources and drug explanations. Visits to specialists have become routine. The challenge in every encounter is to both cram as much background in as possible to set the table (mindful of the allowable 11-minute interval) then mine for gems that are actionable and deliver hope.

Difficulties managing the total body sickness are trumped by overcoming crushing fatigue, containerizing and filing pain, and the sense of loss: the feeling of what was this body, what activities used to be possible, time spent with friends and family, and possessing the energy to live are all different.

To look at my wife you may think “but….she looks fine.” Yes, she looks good. But I know the depth of the battle, the dimension of sickness, the crush of pain that no one else can see. I know the extraordinary effort it takes for her to simply get up and get ready to go. Everything hurts. The shower water hurts. Standing on bare feet hurts. Food hurts.

And still we get up and go places. We see people. And when she’s asked how she feels or told she looks and sounds better, she replies, “I’m fine.”

So many things have been taken away by Sjögren’s. Friends and even family members don’t know what to say, so many stay away. They simply can’t listen, comprehend, or empathize. They assume she is a burden, so they don’t include us in their plans. Sadly, family is precisely what my wife and I need — they serve as fuel to flush away the fatigue, silence the body sickness, and file the pain away.

So we come to a fork in the road. Should we be honest with friends and family as to the level of sickness and the level of life’s change? Or, should we withhold, internalize, and privatize as insulation to prevent any further pain and loss?

Loneliness has set in. For my wife, the loneliness comes from the thought that few — maybe no one — understands what living with Sjögren’s is like. No doctor, no specialist, no pharmacist…no one knows.

The same holds true for me, her caregiver. Dare I even say, “what about me?” Does anyone know what it’s like to watch a person you love slowly disintegrate? Does anyone understand the feelings we caregivers have — the helplessness, fear, hurt, sadness, guilt and loneliness? In a sense, we are bystanders with a close-up view of the tick-tock, tick-tock disease progression, treatment side effects, discomfort, and pain. Yet, we are powerless without tools to help.

I use the term ‘right-size’ to describe the types of activities we can do. The plans I make (suggest) are ‘right-sized’ to my wife’s daily ability level. I push aside the things we used to do, or more accurately stated, can no longer do. Instead I suggest, “let’s go shopping,” “let’s go for a walk,” “let’s go to a movie.” As caregiver, I have ‘right-sized’ my activity to the mutually acceptable level of the patient.

Through it all, we caregivers stay positive, strong, and resolute because there is no other choice.

To all the Caregivers out there, you possess the power to instill the seed of possibility, of promise and of hope. Smile.

Sjögren’s Syndrome Foundation is an organization driven to educate patients and their families, increase public and professional awareness and encourage research into new treatments and a cure. For more information, visit www.sjogrens.org.

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