How to Maintain Privacy with Around-the-Clock Care at Home

The other day I was in my home observing the business. I had two caregivers shuffling through my bedroom and kitchen, kids running around and a spouse working. I simply went into my office, shut the door and felt the peace of being alone.

No privacy

I laughed as I said, “I don’t even get alone time in the bathroom.”

Living with spinal muscular atrophy can be challenging, especially when you require around-the-clock care in your own home.

As a wife and mother, it is essential to find ways to maintain my privacy while still receiving the necessary assistance. I wanted to share some tips I have begun to implement in our home. 

Strategies to ensure needed privacy

These are practical strategies to create safe spaces, establish good schedules, and set clear boundaries and expectations.

1. Safe Places: Creating safe and private spaces in your home is crucial for maintaining personal independence and comfort. Designate a specific area, such as your bedroom or a quiet study, where you can have some alone time. Discuss this with your caregivers, explaining the importance of having a private space to relax and recharge. Adding personal touches like photographs, decorations, or favorite books can make the space feel more welcoming and truly yours.
2. Good Schedules: I was finding days where I felt overwhelmed and stressed were often days I didn’t have personal time. These were days when I felt like my PCAs were relying on me to give step-by-step instructions for all activities. Establishing a well-structured schedule is beneficial for both you and your caregivers. Having predictable routines can help everyone involved plan their time effectively. Work with your caregivers to create a daily schedule that includes designated privacy hours. During these times, your caregivers can focus on other tasks, giving you the space you need. Open communication is key here, as it allows for adjustments when necessary.
3. Clear Boundaries: Setting clear boundaries is essential to maintaining privacy and ensuring you feel respected in your own home. Communicate openly with your caregivers about your personal preferences, such as specific times when you don't want any interruptions or assistance. Respectfully express your need for alone time, and encourage your caregivers to understand and appreciate these boundaries.
4. Clear Expectations: Open and honest communication is vital in any caregiver relationship. Set clear expectations from the beginning and be upfront about your needs and wants. Make sure your caregivers understand your privacy requirements and work together to find solutions that respect both parties' needs. Establishing mutual respect and understanding will foster a positive environment and strengthen the caregiver-patient relationship.
5. Utilize Technology: I found a few tech items that gave me independence therefore making my home felt more within my control.  Using smart home devices to control your environment, such as adjusting the thermostat or turning off lights can empower you to maintain independence even during care hours.

Advocate for your needs

In conclusion, maintaining privacy when receiving around-the-clock care at home is possible with careful planning, open communication, and understanding caregivers. Creating safe spaces, establishing good schedules, setting clear boundaries, and utilizing technology are effective things I’ve established in my own home.

Remember, it's essential to advocate for your needs and actively participate in the caregiving process. By working collaboratively with your caregivers, you can strike a balance between receiving the care you require and preserving your privacy.