Balancing care for a loved one with medical professionals, residential staff or home health employees can get complicated quickly. Defining your role as a care partner can be difficult. How do you let go and trust "those professionals"? How do you know who should take the lead and when?
I've cared for my mother with dementia over 30 years and my father with brain cancer for 4 ½ years. During this period, I found myself standing at a crossroads several times over care standards. I was raised to believe professionals know best. That's why you hire them, right? But is that always true?
RELATED: AARP's Caregiving Resource Center
I have found the saying, "The doctor knows best," has not always been accurate. In fact, in one specific case with my father it could have cost him his life, because I know my father in ways the doctors didn't. I say this to help you appreciate the knowledge you have and responsibility you hold as a caregiver.
Over the years, I've learned that you need to listen to your inner barometer. You know that inner voice that screams at you and turns your stomach into a knot. It's important to remember that although professionals have special training, they don't know your loved one like you do. They don't know those little things that can make big differences. Like what's "normal" for them? What do they like or don't like? What causes them fear or ignites joy? Your role as a care partner is a critical one, because your knowledge can make a difference.
Your voice needs to heard, acknowledged and taken seriously. To be on an even playing field with "those professionals" and protect your loved one, you need proper documentation - such as multiple copies of original powers of attorney, healthcare declarations, living wills. These documents will help guide you to provide the best possible care for your loved one. So complete them early in the process. Don't wait for a crisis, when it may be too late to get them signed.
Families and professionals working as a collaborative team must have a care plan that includes:
- Allowing the person you are caring for to be part of the conversation.
- Keeping your loved one's needs first and centered.
- Communicating openly and honestly in a respectful manner.
- Having a clear understanding of the lines of communication:
- The chain of command - within the family and the professionals you are working with.
- Agreed upon communication modes - phone, email, text, fax, video, letters, etc.
- Timelines for communications.
In my personal experience, some of the most beneficial and beautiful collaborations came through difficult decisions with miraculous outcomes because we had mutual goals.
-- Lori La Bey