Balancing Act: Caring for Someone with Dementia While Keeping a Practice Afloat

It isn’t unusual for freelancers to end up as caregivers. To varying degrees, we’re the flexible ones in the family. Most of us, at one time or another, have been or will be caregivers of some kind.

The Best Laid Plans

I sat on the end of the bed in my parents’ guestroom, facing the small folding table that held my laptop, and began the day’s work. A few minutes later, my father walked in.

“There’s my girl,” he beamed, and started chatting about this and that. Then he stopped mid-sentence and exclaimed, “Oh, you’re working! I’m sorry, I’ll let you get back to it!” and left. Fifteen minutes later, he walked in again and the scene repeated. In fact, it repeated several times that morning. That was the first sign that my plans might need to be revised.

The second sign came just before noon. As I bent over my work, proofreading a rush translation, my mother came in to say that lunch was ready. “I’ll be out in a bit,” I told her, “There’s an anxious project manager in Houston literally waiting by his computer for me to finish.”

The full authority of motherhood flashed across Mom’s face, she drew herself up to full height, and told me firmly, “No. You need to call your client in Houston and tell them lunch is on the table. They’ll wait.”

For a split second, I was five years old again, being told I couldn’t go out to play until I ate my peas.

But I hadn’t been five years old in decades. Instead, my father had been diagnosed with Alzheimer’s. My mother was in the early stages of an unspecified dementia. And the brilliant plans I had made so I could work from their senior living facility while caring for them during extended visits were crumbling all around me.

Have Computer, Will Travel

It isn’t unusual for freelancers to end up as caregivers. To varying degrees, we’re the flexible ones in the family. Most of us, at one time or another, have been or will be caregivers of some kind. Over the years, I’ve read our colleagues’ discussions online about caregiving, the challenges they’ve faced, and the solutions they’ve found. Whether raising small children or caring for the chronically ill, whether we live with them or just near them, most of the challenges seem to be the same:

  • Meeting our loved one’s needs without losing our business
  • Finding time for self-care (and accepting that we need it)
  • Knowing when to ask for help and how to find it

But when that loved one has any form of dementia, there’s a twist: For the remainder of their lives they will never not need care, and their needs will never be static.

Backups and Redundancies

My brother, Steve Moore, is also a freelance translator. Once our parents’ medical conditions began to manifest, my siblings and I moved them from their home near me in Texas to a senior living facility in our parents’ home area in northern Indiana. There, they could start out in independent living, then transition to assisted living or memory care as needed. Steve lived a mere 10 minutes away. He and his wife (a nurse) would help my parents with their day-to-day needs, like doctor appointments, grocery shopping, and so on. I would provide respite care, traveling from Texas to Indiana to live with my parents for days or weeks at a stretch, several times a year. Our sister and brother served as sounding boards from afar and weighed in on major decisions. There were other friends and family in the vicinity who could step in for short periods. This gave us multiple levels of backup care, and over the years we used them all.

As their live-in respite care, I would need to be able to work from their home. Backups and redundancies were necessary there as well.

  • The closet in the guestroom held a stand-alone monitor so that on each visit I would have my usual two-screen setup without the need to transport one of my desk monitors.
  • Projects were not only stored on my laptop, but were also saved regularly to a large-capacity flash drive. If my computer failed during a late-night work session, I could use my parents’ computer to finish the job or contact my client.
  • Their internet service was part of the facility’s Wi-Fi network for residents. It worked fine, until it didn’t. I bought a prepaid USB satellite stick for my laptop. That put a secondary connection at my fingertips.
  • And finally, I set up remote access to Big Momma, my desktop computer at home. When the computer-assisted translation tool on my laptop developed a glitch, I was able to email the updated memory file to myself, access the program on Big Momma, and finish the job, leaving the software debugging for later, when there was more time.

Communication

With any form of dementia, things are always changing. There isn’t a lot of predictability as to when or how, either. Because of that, clear and constant communication is vital.

Part of that communication came at the start. At the time our parents moved close to him, Steve still had a preteen daughter at home. He and his wife discussed with her how Grandma and Grandpa’s care might impact his availability. I sat down with my grown sons and discussed what support I needed from them during my absences: picking up mail, depositing payments, and sending me updates.

Before each trip, I would email my clients with my travel dates and, if they were direct clients, the names and email addresses of colleagues they could contact with any urgent requests if I was unavailable.

Neither Steve nor I went anywhere without our cell phones. While we both tried to be realistic regarding delivery times, our respective clients did get the occasional request for an extension because of unexpected issues with our parents’ health. We checked messages regularly. In order to stay in business, it was important that our client communication suffer as little as possible.

Time Management and Realism

That first day of my first extended visit, it became obvious that my meticulously planned schedule (three hours of work in the morning, two in the afternoon, and two or three late at night) was completely unrealistic. While I lived with my parents, I would have to follow the rhythm of their days, not mine or my clients’.

So, taking into account the times when my parents’ cognitive functions were at their best (early in the day), when they napped, watched TV, and went to bed, I started out with a workday that looked something like this:

  • 4:00 to 7:00 a.m. (while they were sleeping)
  • 1:00 to 3:00 p.m. (while they napped)
  • 9:00 to 12:00 p.m. (once they were in bed for the night).

Messages were answered as I could throughout the day.

Over the next three years, as my parents’ health deteriorated and safety issues multiplied, this schedule changed. In fact, it changed many times. Toward the end, I was working an average of five hours a day in time segments ranging from 30 minutes to two hours during my extended visits.

Space to Breathe, Time to Laugh

A staff member at a care facility recently told me to “pay attention when the overwhelm hits. Caregiver burnout is real.” Being a caregiver and at the same time a self-employed professional is a balancing act, and part of doing it effectively is to consciously find ways to de-stress.

My brother is a bonsai artist. “Playing with my trees was one significant way” to relieve stress, he told me. “Or sometimes just sitting on the deck, looking at them.”

For me, the magic formula is writing—but social media helped as well. Those short, easily controlled interactions with friends and family pulled my focus away from the immediate situation for just a moment and gave me perspective.

And then there’s humor. There’s nothing quite so de-stressing as a belly laugh.

During my first long-distance stint, I sat down one night to access a file that was back home on Big Momma. I logged in remotely, opened the file, and…it instantly disappeared. I tried again. And again. And again. Each time, the file opened and then promptly closed.

Just as I was at my wits’ end, my cell phone rang. It was my younger son. “Mom!” he said in a worried voice, “I think you have a virus! I’m at your computer and this file popped open all by itself, and it just keeps opening no matter how many times I close it…”

Whatever the method of choice, the importance of finding space to breathe and time to laugh cannot be understated.

“Your Loved One Needs Care, but They Also Need You”

Lisa Englander is the director of residential services at Presbyterian Village North, a Dallas facility that offers independent living, assisted living, and memory support care. I spoke with her about recognizing when at-home solutions are no longer viable for the care of a loved one with dementia.

“The first thing is safety,” she said. “Can they be left alone without wandering off? Could they pose a danger to themselves or others? Do you find that all your time is spent supervising them?”

Second, she pointed to the need to connect as yourself. “Your loved one needs a caregiver, yes, but they also need you as you,” she stressed. In other words, if an adult child’s sole interaction with their parent is as a caregiver, the parent-child relationship may be lost. Not everyone has access to the same services or support, but the more we can rely on the solutions that are available to us, the more we are free to fill the need that no one else can: our presence as their loved one.

In the End

As I said before, when someone has dementia, for the rest of their lives they will never not need care.

My father’s Alzheimer’s was interrupted by pancreatic cancer and he died before he lost the memory of us. Mom followed him 11 months later when her broken heart gave out. After her funeral, after sharing precious time with my siblings, I packed up my car and—seven weeks after I’d last slept in my own bed—drove back to Texas.

My business survived the years of travel back and forth, the interrupted nights, and hectic days. The lessons in flexibility and adapting to circumstances helped prepare me for the pandemic and its challenges.

If caring for a loved one with dementia is on your horizon, please know this: it’s a balancing act, and one that will be unique to you and your situation. But in the end, it can be a gift.

Resources for Caregivers

If you find yourself facing this or a similar situation, Presbyterian Village North and, I’m sure, other facilities can offer counsel and downloadable information. Here are some other resources for caregivers:

AARP

This is a nonprofit, nonpartisan organization offering services and information to aging people. AARP offers legal checklists, information on care options, an online community, and a page of local resources and links to medical services, Alzheimer’s programs and more. The organization also offers a Family Caregiving guide.

Alzheimer’s Association

This group offers resources for those with Alzheimer’s and dementia, along with their caregivers. Included is information on symptoms, diagnosis, stages, treatment, care, and support resources. The group’s online tools page features an online forum called ALZConnected, e-learning workshops, a planning aid called Alzheimer’s Navigator, and more.

Alzheimers.gov

This site from the federal government provides free information about Alzheimer’s Disease, including information on Medicare coverage, treatment options, and referrals to local community resources.

Caregiver Action Network

This group offers resources for caregivers, including forums and tips.

Caregiver Nation

This Facebook group offers family caregivers support, information, and resources.

Community Resource Finder

This combined project of AARP and the Alzheimer’s Association provides access to Alzheimer’s and dementia resources, community programs, medical services, and local long-term care options.

Dementia Friendly America

This group offers support for those with dementia and their caregivers. Featured are a list of resources and toolkits for becoming a local advocate.

Department of Veterans Affairs

This agency serving military veterans also has a Caregiver Support Program that offers caregiver training programs, a helpline, mentoring, and peer support.

Family Caregiver Alliance

This site from the National Center on Caregiving provides resources for caregivers providing care to people with a variety of health conditions and disabilities. The Dementia Caregiver Resources section offers guides, tips sheets, and caregiver stories.

Federal Resources for Caregivers

This is a collection of resources from federal agencies.

U.S. Department of Health & Human Services

Caregiver Resources and Long-Term Care
The Department of Health and Human Services provides information on resources, assistance, support, and government health resources.

U.S. Food and Drug Administration

This agency offers tools and tips for those caring for people of all ages.


Carol Shaw, CT is an ATA-certified Spanish>English translator and holds a Texas Master Court Interpreter license. She serves on ATA’s Professional Development Committee and on the Interpreters Division’s Leadership Council, managing the division’s blog. A believer in associations, she is also active in the Texas Association of Judiciary Interpreters and Translators, American Association of Interpreters and Translators in Education, and Metroplex Interpreters and Translators Association. Raised in Ecuador, she and her laptop sometimes spend a few weeks working from her sister’s home in Quito. carol@carolshaw.net

2 Responses to "Balancing Act: Caring for Someone with Dementia While Keeping a Practice Afloat"

  1. Helen Eby says:

    Thanks for sharing. We went through this with my mother in law, and it was not easy.

  2. Adjo Agbossoumonde says:

    Thank you for sharing this with us. I have been supporting several family members with mental health
    for years and I can totally relate.
    Maintaining a balance life as a caregiver is challenge. The disease burden is real and it takes its toll
    on the patient as well as the caregivers.

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