6 Ways to Be an Effective Advocate When Your Parent or Partner Lives in Memory Care
No one chooses to make a move to memory care on a whim. It’s an emotionally bruising experience, often made when you’re most exhausted and vulnerable.
You really want things to go well, and you don’t want to rock the boat for fear of retribution. That said, you need to start making noise if your parent or partner isn’t getting the care they’re entitled to.
An upcoming post “What to Do When Memory Care Isn’t Working,” will provide a list of professionals and institutions you can turn to for help. It also outlines exactly what should (and shouldn’t) be happening in memory care.
Here are six strategies to help you be an effective advocate, with five pro tips thrown in, too.
Communicate, Communicate, Communicate!
When I was working as a memory care director, I always told families that I’d do everything in my power to resolve a problem. But I couldn’t fix what I never heard about.
Don’t fall into the trap of silently steaming because you think staff should be aware of a concern. Just spell it out for them.
Pro Tip: Make sure staff knows there’s a timeline for resolution. Whether the problem is relatively simple or more complex, you should expect a status update within 24 hours.
Make sure staff understands your expectations or “verbalizes understanding,” in long-term care lingo.
If It Isn’t Documented…
The rule in long-term care is, “If it isn’t documented, it didn’t happen.” Therefore, document your interactions! Use the calendar app on your phone to make a short note as you’re leaving, or keep a more extensive notebook.
How detailed should your notes be? I was trained to make notes comprehensive enough to tell a story from one entry to the next, triggering your memory if you’re ever on the witness stand(!).
Pro Tip: Avoid using pejorative language or drawing conclusions. “Dad was a hot mess, and the staff clearly doesn’t care about him,” doesn’t have the same impact as, “Arrived 10 a.m. to visit Dad. He was wearing pajamas with food on the front. His hair did not appear combed. He was barefoot. Found a staff member at 10:10 a.m.”
Documenting your visits this way will come in handy if you need to share notes with a physician, investigator or other related professional. You’ll have instant credibility, making it much harder to dismiss you as an “overwrought” family member.
It’s better to leave a written note or a voicemail than “hoping” to run into the right person to handle your concern. You (rightly) expect staff to be timely in handling your concerns; you need to be timely in pointing them out.
The longer a situation goes on, the more “acceptable” it becomes. That leaves you trying to justify why you never said you’re really not okay with Betty from down the hall helping herself to your mom’s treasured trinkets.
Pro Tip: If you leave a note, take a picture of it on your phone. If you think there’s a good chance you’ll be leaving a voicemail, write down what you want to say, then read from your “script.” Note the date and time you left the voicemail.
Email is my favorite method: it’s time-stamped, can be marked “urgent,” and some programs allow you to see if/when it’s been opened.
Keep Your Wits About You
While you may feel justified having a meltdown, it won’t help. No one likes being yelled at or feeling threatened and intimidated.
Make sure you’re talking to the right person. A nurse can’t fix a billing error any more than the office manager can make medication changes. They’re not trying to be difficult; they literally can’t help you with that.
Sometimes you can feel pushed to the point where you’ll be tempted to unload on the first staffer you encounter. Resist!
Pro Tip: Start by forming a rapport with the other person. “How’s it going?” isn’t a social nicety; it’s a conversation starter on the way to getting the result you want.
Triage Like an ED Nurse
Have multiple concerns? You’ll be most successful by focusing on one at a time. Start with the most serious, and work your way down the list.
If none are life-threatening, start with the one that has the biggest impact on quality of life. Once that’s resolved, move on to the next one, and so on.
Pro Tip: Make it a point to interact with staff when you visit – don’t save it for when you’re ticked. The last thing you need is staff labeling you difficult and avoiding you.
Reinforce a positive feedback loop by saying “Thank you.” It’s basic human nature to be more eager to help those who express gratitude.
Set Realistic Expectations
It’s emotionally difficult to watch a person you love go through the disease process. One reason that really rubs families the wrong way is appearance. Your fashion-forward mom wearing drawstring pants and kitty sweatshirts? You’re not having it!
Appearance isn’t a more easily manageable problem than virtually anything else related to the disease process. But sometimes we think it is. Ensuring quality care is the real mission. Stay focused on that, and set realistic expectations.
Memory care consists of a neighborhood of people with cognitive loss. They’ll get confused from time to time or not feel especially cooperative. That might mean seeing your mom wearing someone else’s sweater, or vice versa.
Pro Tip: Ask yourself, “How important is this?” in order to keep perspective, keep your cool, and stay focused on making sure your parent or partner gets the care they need.
The goal is always for your parent or partner to receive excellent care and for your day to be anxiety-free. With that in mind, choose the methods that you feel are the best fit for your situation and personality.
Sixty and Me readers are welcome to learn more about effective advocacy and grab a complimentary copy of Talking To Professionals: An Insider’s Guide.
What is your experience with memory care facilities? Do you have any tips to share? Please join the conversation.
Christy Turner is a speaker, guide, consultant, and the founder of DementiaSherpa.com (CTC Dementia Care Management). She has enjoyed the privilege of working with over 1,045 people living with dementia and their families. Visit Christy’s blog and follow her in social media.