The caregiving journey is unique for everyone, but one thing that spans across all caregivers is the need for respite, time away, and knowing that they have someone who can provide care in their absence.
Being the primary caregiver is difficult, and others don’t always recognize it. The question that always comes up is, how can I balance my needs with my loved ones? Can I take time away without feeling guilty? Could someone else give them the same care? If I get away, how do I keep them safe?
Often the case is that someone you care about has experienced a life-threatening illness; in my case, my husband experienced a stroke. Although he is recovering at this time, my journey as a caregiver began that day.
The First Step
The initial, crucial step for planning a break is to identify someone you both trust to step in while you are away. This might be a grown child, a relative, a companion, or a service. Without the right tools, stepping in as the backup can be frightening.
Once you’ve found your backup, you can start feeling guilt-free about needing time. Proper planning is the foundation of a successful time away. “Plan for the worst and hope for the best” is my guiding principle. It has helped caregivers feel more confident about their backup systems.
What to Give Your Backup
A plan of care is the usual name for the time-away plan. A straightforward way to give people information covering your loved ones’ requirements. Included in the Plan of Care, but not limited to this list:
- Provide your loved ones’ details and your contact information.
- A copy of their medical cards, doctors, and hospitals.
- Should you be unreachable, your healthcare proxy can make health care decisions, as allowed by legal documents. Your requests need review, and the care supporter must reach out. This mostly comes up concerning life or death and choosing “Do Not Resuscitate.”
- Medical History: A list of medical conditions and their onset dates.
- Medication details and administration times. Add specific instructions, like when to postpone taking medicine. There must be sufficient medicine available.
- Give a rundown of a regular day. List of favorite foods, activities, and times of sleep.
- How to cope successfully with daily struggles. For instance, anger, tips for providing proper nutrition (what they will eat), or things that they may try that are not safe.
- When to call the MD office versus calling 911 or going to the ER.
The Support You Need
Your support network might include a few people once you identify it. Rest is essential for a healthy, refreshed return to your ongoing care responsibilities. This is the moment for the primary caregiver to ask for help, even if it’s difficult. A meeting with those who offer backup care is my recommendation. This is difficult because of the primary caregiver’s sense of responsibility and reluctance to impose. Be direct and candid with others. I’ve discovered that this can make for a more productive chat and bring new solutions. A few ideas of what needs to be discussed:
- Share any new information about their progress. Make sure you explain your request and show your appreciation for their willingness to help.
- Review the care plan and discuss it together. The support person’s input can often improve the quality of care.
- What they can do and when they’re available. You might have multiple replacements while you’re gone. As long as communication exists, this will work.
- Start carrying out the plan.
Organizing Your Time Away
Finally, organize your time off. This could be a day trip, or perhaps a week-long trip. Taking care of yourself matters more than your activities or destinations. Instruct your support person to send a simple daily text–a thumbs up perhaps–to show everything’s okay. Avoid calling often or trying to return sooner. It’s time to reorganize and rejuvenate.
Most of the time, support caregivers enjoy covering shifts. They spend quality time with their loved ones and believe they’re helping the person providing care. Never refuse someone the chance to give.
A Nurse’s Insight
I have supported many patients and families in moving from crisis to home. But facing it firsthand shows how much your previous beliefs mean nothing. You are the only one who will go through this unique experience, but I have found real-life solutions that can assist you in avoiding obstacles, and I can offer that perspective, enriched by a nurse’s insight. Remember, you’re not alone, your feelings are valid, whatever they may be.
My new book, Stroke and the Caregiver, expands on my previous work, Stroke and the Spouse, sharing lessons learned since my husband’s 2021 stroke. This past year, as a caregiver advocate, I have spoken to over five hundred caregivers of stroke survivors. Stroke and the Caregiver capture their experiences, questions, concerns, resources, and inspiration.
Stroke and the Caregiver will take you on a journey from the time of the stroke event through the first few years, post-stroke. Physical, mental, and spiritual health are all crucial aspects caregivers, supporters, friends, and family should address. Even if one aspect is not quite right, focusing on all three leads to happiness and tranquility.
As for prayer, my experience as a Christian involved a difficult period of questioning my faith, feeling angry at God, and finally reconnecting with Him. I’m sharing this part of my journey because I now realize God was with me, even during the pain and doubt. We all have unique perspectives based on our beliefs and backgrounds, but we all want to pursue a healthy and fulfilled life.
My books are resources for those suddenly assuming the role of caregiver. We carry a myriad of responsibilities and no time or strength to step back and really manage the situation before us. I am travelling on this journey with you, as a health professional and a fellow caregiver.
Author Bio
Lana Wilhelm, RN, has written two books, Stroke and the Caregiver and Stroke and the Spouse, served as a nurse for three decades, and created spaces for caregivers who need support. Lana advocates for primary caregivers and worked as a case manager helping with caregiving situations.