Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

A Caregiver's Reflection

Posted on Wed, Jun 12, 2019

CaregiverToday is not terribly different from any other day. The day begins... slowly.
Introducing a reference to time...not recommended.

Because there is no way to know how the patient will feel. Will it be a sick day? Will it be a pain day? Will it be both? Too uncomfortable for breakfast?

Questions.
Questions are not helpful.
Rather, just know what to do, know what to say.

And find the sunshine. Project happy thoughts. (no questions). Everything hurts.

The role of a caregiver is demanding, unselfish and ever-present. The role requires an ability to not just listen but hear and then measure the appropriate response. Because the patient does not want help with everything. They still want to preserve whatever bit of independence they can, why, because they have lost so much. The tendency is to react, to offer to do everything...don’t do that, the patient needs to retain any degree of independence they can.

It was not always like this.

The patient used to be able to do so much more. The patient was able to do everything. Clean the house, go for a run, take an exercise class, take a spin class, work in the garden, get-up-n-go, have a job, have a schedule.

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 imposed their own blend of affect, interaction, ineffectiveness and ultimately uselessness.

The search for better and more effective treatment is endless. An infinite amount of time is spent reading blogs, web sources and drug explanations. Visits to specialists have become routine. The challenge in each 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 can be actionable, that can deliver hope.

Now, as difficult as managing the total body sickness, overcoming crushing fatigue, containerizing and filing pain, the sense of loss trumps all. The feeling of what was this body, what activities used to be possible, a job, housework, time with friends, time with family, possessing the energy to live...it’s all different, it’s not the same.

But. The patient looks fine.
What?
The patient looks good.
I know the depth of the battle, the dimension of sickness, the crush of pain, but no one else can see it. I know the effort to be ready-to-go is an extraordinary effort. Everything hurts. The shower water hurts. Standing on bare feet hurts. Food hurts.

And so we go places. We see people. And people ask the patient: “how are you?” “you look good!” “you look better.” “you sound better.” Hmm. Patient replies, “I’m fine.”

Next comes the judgment part. The patient looks good so the patient must be fine.

So much loss.
So many things have been taken away by Sjögren’s. Friends don’t know what to say, many stay away. Friends remain out-of-touch because they have been unable to listen, to comprehend, to empathize. And this may even apply to family. They arrive at the same point, unable to listen, to comprehend, to empathize. Then, when choices are made for travel, travel to locations that exclude the patient, the feedback is “we did not think you could handle it," or “we did not want to be a burden."

So much loss.
Sadly, family is precisely what the patient needs. The presence of family serves as fuel to flush the fatigue, to silence the body sickness, to file the pain away. Here is where you come to a fork in the road: to be honest with friends and family as to the level of sickness, the level of life’s change, or, rather, choose to withhold, to internalize, to privatize as insulation to prevent any further pain, the pain of loss.

Loneliness sets in. For the patient, loneliness 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 the caregiver. Dare we 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 have, the helplessness, the fear, the hurt, the sadness, the guilt, the loneliness? We are bystanders with a close-up view of the tick-tock disease progression, the effect of treatment side effects, the expression of discomfort, of sick, of pain, yet powerless without tools to help.

I have used the term right-sizeto describe the types of activities we can do. The plans I make (suggest) are right-sizedto the level of ability of the patient. Forget the things we used to do, or more accurately stated, can no longer do, rather, “let’s go shopping,” “let’s go for a walk,” “let’s go to a movie.” As a caregiver, I have right-sizedmy activity to the mutually acceptable level of the patient.

And yet, we stay positive, we stay strong, we stay 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.

This article was first printed in The Moisture Seekers, SSF's patient newsletter for members. 

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Topics: #ThisIsSjögrens, Sjögren’s, Care Giver Burnout

9 Ways to Avoid Care Giver Burnout

Posted on Fri, Jun 29, 2018

The Sjögren’s Syndrome Foundation knows how caring for someone with a chronic illness, like Sjögren’s, can be very rewarding but it can also take a lot of out of you - physically, mentally and emotionally.

We encourage you to share this article with a friend, spouse or family member who helps support you with Sjögren’s and talk about any questions that this article brings up for either of you.

Support_

9 ways to prevent and manage burnout

Here are some tips on preventing and dealing with caregiver burnout. Always remember that if you want to take care of someone else in the best way you can, you must take care of yourself first!

Talk with someone. Find a person you can talk with about your feelings, such as a close friend, family member or colleague. You may want to seek professional help—speak with a therapist or social worker who can understand what you’re experiencing.

Write it down. Use a journal as a way to release your thoughts and feelings. Record your fears, impressions, sense of confusion and more.

Join a support group. Share what you’re going through with others in a similar situation. Whether they meet online or in person, these groups offer a great way to meet people who will understand what you’re feeling.

Make time for yourself. Just because you’re a caregiver doesn’t mean you shouldn’t make time for yourself. Enlist a friend, family member or home health aide to relieve you of your duties. Still can’t get out? While your loved one is sleeping, try drinking a cup of tea, soaking in the tub or even sur ng the Internet to relax.

Get educated. Learn as much as you can. The more you know, the more you’ll be prepared for appointments, what’s ahead and the like.

Recruit help. You don’t have to do everything yourself. If people offer help, accept it. If they don’t offer, ask them whether they will lend a hand; they’ll likely be happy to assist you. Ask a family member to shop for groceries and have a neighbor pick up a prescription. The extra hands will enable you to focus on your loved one and yourself.

Have people come to you. Make your life as easy as possible. Have dry cleaning picked up and delivered. Find a hairdresser who makes house calls. Order your groceries online and consider hiring a cleaning service.

Stay healthy. It’s critical that you see to your own needs so that you can be in optimal shape for the sake of the person you’re caring for. Eat a healthful diet with lots of fruits and vegetables, get plenty of sleep, and exercise at least 3 to 5 days a week.

Learn to laugh. Laughter really is one of the best medicines, so rent a silly movie, read a funny book or magazine or call a friend with a good sense of humor to find a way to let loose and chuckle.

 Click Here to Receive our Newsletter  by Becoming an SSF Member

This article, written by Stacey Feintuch and reviewed by Health Monitor Advisory Board, was first printed in The Moisture Seekers, SSF's patient newsletter for members, and first published by Health Monitor. 

Topics: Treatment, Sjögren’s, Care Giver Burnout

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For reprint permission requests, please contact us at info@sjogrens.org.

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