Persistence, hope required when seeking respite care

I often think back to January 2020, when I started a series about getting real with caregiving. Our family was adjusting to living together under one roof when we moved into our multigenerational living situation. I thought I would spend most of the year documenting real-life experiences and challenges for caregivers in our modern world.

Two months later, we were living through a quarantine and stay-in-place orders because of a pandemic.

Now, one year into COVID-19 caregiving, I’m writing about hitting the caregiving wall and the need for respite. My most recent article on this resonated with readers: Several reached out to me, so I wanted to expand the conversation — because for many caregivers, hope can sometimes be hard to hold on to.

Family caregivers are struggling

My readers and social media followers know that I regularly advocate for informal caregivers. I’m one of the 53 million unpaid family caregivers in the United States, a figure documented in the “2020 Report on Caregiving in the U.S.” from the National Alliance for Caregiving and AARP Family Caregiving.

Many family caregivers, like me, live with ever-lingering frustration and stress around their financial future. For me, as the primary caregiver for both my parents, and being in my 50s while pursuing freelance or remote work, options are limited. The lack of income and employment growth is ever-present in many caregivers’ minds.

While some families may have the income to cover basic needs, it doesn’t always provide for the cost of respite care for the family caregiver. In some areas of the U.S., there is little nonprofit, free respite care, with little infrastructure available to assist unpaid, informal caregivers in these communities. This also contributes to mental and physical health challenges for caregivers.

In addition, many families are experiencing loss of employment at record levels, in part because leaders failed to implement a national plan early on to address the pandemic health crisis. Millions of Americans have faced economic hardship. All of this is happening in family caregiving situations in every community throughout our nation, and caregivers are struggling while losing hope.

Remember that it’s never too late

My longtime readers, friends and family members would probably agree that, most of the time, my resilient thinking and persistent mind-set provide me a positive attitude.

Full disclosure: I do lose my temper and react inappropriately to stress. I’m a work in progress and will be the rest of my caregiver life.

After reading my article last month, a reader wrote to tell about her struggle to find respite for herself and her adult son. They are providing 24/7 care for her husband. She ended the email asking, why do I raise hope in my readers seeking respite, when there is none?

Her question hit home for me. As a family caregiver who has not had any respite during the past year of COVID-19 caregiving, I have had many days where I had little hope for my situation. I’ve cried, yelled, said “I’m quitting!” and told my siblings to get another caregiving plan, because I’m done. However, I know that feelings change, and they are not facts.

Caregivers need to understand that keeping hope alive is a crucial life skill that takes practice and commitment, especially when trying to find assistance and respite. When a person has not had much sleep, time off, or time away from their care recipient, it’s overwhelming, even in the best situations. We all need breaks from caregiving.

Use persistence and creativity

Family caregivers seeking respite must be creative and rethink how they approach their situation. Sometimes we enter our new caregiving situation with our old ways of thinking that might not serve us in our new caregiver life. Most family caregivers seeking respite cannot pay for services. This is another example of the broken, pro-profit healthcare system in America. Millions of unpaid family caregivers with no access to free respite create a very unhealthy and vulnerable caregiver population.

If you are an informal caregiver, be persistent and don’t quit trying to find safe, reliable respite care. Get on every single waitlist at nonprofits offering free or sliding-scale fees for services. Check daily for an opening or cancellation that might be available to you, and network in your community for resources.

I always say that people cannot get what they won’t ask for in life. You must have the courage to continually seek out respite services, because at some point, you may find what you need. There is always a new program or service starting in communities because there is more awareness of the family caregiver’s plight.

Hope leads change

Having hope and a positive attitude is a good start, but that alone won’t fix things; you have to do the work to make things better. I also realize that, to an already overwhelmed caregiver, doing more work to keep hope alive may sound unrealistic. I get it, because I am also an overwhelmed, stressed-out caregiver.

However, I have lived long enough to understand that things do change. Change is a constant in life, and I’ve learned to embrace it. Change can happen with a little bit of perseverance and continued efforts to find solutions.

Here is what I do know

Do not give up on yourself, and allow yourself to feel the feelings — just get back to finding solutions sooner than later. Realize it is a caregiver journey and not a race, so be kind to yourself and keep seeking opportunities to improve the quality of your caregiver life. Here are a few tips and reminders:

• Always try to use a company or organization for respite services, because they screen applicants.
  
• When using friends and family, please keep in mind that they can abuse or commit crimes against the care recipient. Make unannounced visits and regularly check on things.
  
• Attend online support groups and virtual educational conferences, because local resources are usually provided.
  
• Giving up won’t solve problems. It’s a signal that you need to take time for yourself to check in with your medical doctors and health care team.
  
• Evaluate your existing systems to see where you can save time and money by eliminating or changing steps in your caregiver life.
  
• Lastly, be humble and share your caregiver journey with others in your life, because you never know where and when the answers to your problems will arrive. Sometimes the simple act of sharing your story with others nets a positive result. It has for me; why not give it a try for yourself? Share your caregiver story.
  

Veronica Mitchell writes “Ask Veronica — Let’s make caregiving better, together” for caregiverSD.com; email her at veronica@veronicamitchell.com.