Overcoming the Challenge of Caregiver Isolation

Isolation for caregivers can be a real thing. However, I apply my glass-half-full observations to help me battle this unwanted occurrence.

Limited interaction or activities outside a caregiver’s immediate home can certainly lead to isolation. Managing regular activities may be difficult, so some caregivers and their families may choose to stay home more.

It takes more effort, but it is possible to manage and overcome the challenges that we face as caregivers of getting out of the house.

Just give me a little outside fun

Let me begin by saying that I am an introvert. So, the point of view that I am providing here has an I-don’t-need-much-time-with-others spin.

My husband, Lamar, likes to tease that I am antisocial. People who know me say that this is impossible, given the way that I engage and interact with them.

But my husband is right in some ways. I don’t crave a plethora of moving and shaking that extroverts like my husband enjoy.

Give me a choice to go to a party or read a good book, and I’m waving you out the door from my comfy chair.

Sabrina enjoys a book in her favorite chair. (Courtesy of Sabrina L. Johnson)

But for many, isolation adds insult to injury. Getting out of the house for doctors’ appointments or even social events takes on a different life when you have a child facing physical or emotional hurdles.

During the first year of my daughter Juliana’s diagnosis, I read as much as I could about Angelman syndrome. I gathered some helpful information from a few sources, but my internet trolling adventure didn’t last long.

Only let the good stuff in

Some things I read were confusing. Others simply made me feel sad. This is one of the reasons I write “A Glass Half Full.” I know what those first uncertain years are like, so I want to put out as much positive stuff as I can.

Caring for an Angel has its challenges. The last thing I want to read or write is a story that will make my situation feel hopeless. I just don’t believe that is true.

“Positive thinking will let you do everything better than negative thinking will.” I believe there is so much power in this quote by one of my favorite motivational speakers, Zig Ziglar.

So, my first step in challenging the isolation is to boost my positive thinking. The saying “garbage in, garbage out” comes to mind.

When I’m looking for uplifting Angelman syndrome stories, I look to the Angelman Syndrome Foundation’s Wall of Accomplishments, Mary Kay’s column in Angelman Syndrome News, or AS blogger Lisa Tanner from Maggie’s Milk.

In these places, I find things that make me smile and feel positive about my own journey.

The doing is in the planning

Next, I take real actions to avoid isolation. I stay in touch with friends. I ask for help when we need it. As a family, we participate in kid-oriented events.

From left, Jessa, Juliana, and Sabrina enjoy an aquarium visit. (Courtesy of Sabrina L. Johnson)

This keeps us from feeling that we are missing out on life outside our house.

Even when we were sheltering during the COVID-19 pandemic, we went to outdoor gatherings and Zoomed into functions that provided some connection with others.

From left, Lamar, Juliana, and Jessa enjoy an outdoor costume party. (Photo by Sabrina L. Johnson)

Our lives certainly are different since we became special needs parents. Although some seemingly regular activities, such as attending a high school graduation, are challenging to pull off, we still give it a go.

There’s a partial party where?

With the less-is-more philosophy, we manage a lot of outings by keeping things short and simple. Angels are known for having a happy demeanor, but they are not happy all the time.

Adjusting to others can be challenging for Juliana, so this is taken into consideration when we are heading out.

Who says you have to stay at an event the entire time? Sometimes, my husband and I divide and conquer. He and my 9-year-old daughter Jessa love to close out parties.

Lamar and Jessa, the party closers team. (Photo by Sabrina L. Johnson)

Juliana and I are happy to sneak out early and head home. This may not be ideal, but the only normal I’m aiming for is my own.

This plan works for us. While I may feel a little dismayed that it takes more planning for us to get out, I shake it off and hit the door for quality time away from home.

After all, my comfy chair will still be there when we get back.

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Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Angelman syndrome.