What Are We Going to Do About It?

I don’t have to tell you things are bad in memory care. I don’t have to tell you the quality of care isn’t what it should be. I don’t have to tell you people are treated like tasks, like a chore to be crossed off the list, like a nuisance to be dealt with.

The question is, what are we going to do about it?

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What We Don’t Want

Right now, I want you to grab a sheet of paper and pen and brainstorm five things that would make it different. Doesn’t matter if you think it’s a good idea or not. Doesn’t matter if you think it would ever be implemented, or if you think you’d be outright laughed at. Whatever your ideas, write them down.

If that seems daunting, start with a list of things you don’t want to see. Often, it’s easier for us to articulate what we don’t want first. What we do want becomes clearer after we’ve contemplated all we will no longer tolerate.

Either way you go about it, I know nothing changes until we start coming up with better ideas.

I wrote about this about six weeks ago. I was howling mad after being contacted by 11 families in two countries in the space of five days–all about how crap the standards of care are in their loved ones’ memory care communities.

No Excuses

After years spent running around hollering, “This isn’t how it’s supposed to be!” to anyone who made eye contact, it finally sunk in that approach wasn’t doing anything at all to change reality.

Years of frustration with stories I was told, things I witnessed, visits to memory care communities that made me long for a bus so I could load up everyone and take them home with me.

It’s so frustrating, so enraging, because I know it can be done the right way. I’ve done it. My teams won national awards. We had an 8-month wait-list in an ugly building in a bad part of town with terrible parking, no private rooms, and abutting railroad tracks.

So I can’t accept excuses.

I can’t accept excuses about how “there’s no other option” than to put someone in a geripsychiatric hospital and load them full of drugs the FDA expressly warned against using 9 years ago now.

(Yes, I said 9 years. After the advent of the internet. And social media. There’s simply no way professionals can continue to claim ignorance on this point.)

I’m Not Having It

I’m not having it on “that’s just the way they get with dementia.” This claim, because a company is too greedy to provide necessary training to staff.

The same staff that needs to understand how to properly interact with people living with dementia–the very people who provide their paycheck. Or a company is too lazy to make sure new staff is properly trained, taking into account their atrociously high turnover rate.

I will not stand for “but she refuses to let me [fill in the blank with any/every daily task such as oral care, basic hygiene and cleanliness]” as a reason for bedhead, stink, eye boogers, chunks of food in teeth, and stained clothing.

Patience with whining about how “the competition for staff is so fierce” that a community has no choice but to hire anyone with a pulse? Not likely!

But What If We’re Talking About Kids?

I wonder if we’d be okay with how people living with dementia are treated if we were instead talking about young children. Would it be okay then, since they don’t “contribute to society,” either? Okay because their memories can be rather sketchy?

Alright because they haven’t achieved toileting mastery? Aces due to their inability to speak eloquently?

But I really want people to think about this, to think in terms of if we were talking about children. Would saying things like, “I’d rather be dead than live like that!” be okay?

Or, “My baby daughter never calls me ‘Mom’ so I don’t see the point in picking her up.” What about, “My toddler nephew gets me mixed up with his other aunt, so it’s a waste of time visiting.” Is that okay?

Is it not okay to speak–and think–this way about children because they haven’t outlived their usefulness to us? Is that the difference? Because there’s hope of children growing up out of childhood and developing language skills and contributing to society, then it’s wrong. But for people living with dementia, well….What can they possibly do for us? Is that the idea? Because that’s definitely what it sounds like to me.

And if I sound furious, good. You’re feeling me, loud and clear.

Two Ideas

In my fit of fury weeks ago, I came up with what I believe are two viable ideas that I can execute all on my own, precisely because of my experience as an insider who knows to her bones this isn’t how it’s supposed to be.

My two ideas are: I can teach you how to be an effective advocate for your parent or partner who’s already living in a memory care community. Or, I can help you devise a plan to avoid memory care altogether and teach you the skills to pull it off.

Beyond those two things, here are some other ideas I came up with, taking it a step further. Not every idea will resonate with everyone; each circumstance is different.

Still, I think it’s worth throwing all the spaghetti at the wall to come up with change we need to see, that our loved ones need to live well. If you haven’t already, please get your own ideas down on paper, and then use the comments section below to share them so we can collectively start moving in the right direction as quickly as possible.

Please.

Throwing Spaghetti

Be the squeaky wheel. That’s not a permission slip to be a jerk, but definitely make noise.
Kill (staff) with kindness. My mom’s trick: she gets other people to squirm at the idea of saying no to her.
Make friends with the staff. The more human and real you are, the more likely someone is to care about what you want.
Use your cell phone. Every community will tell you it’s not allowed. Now you know what they’ll tell you.
Be part of the volunteer program. As with being a room mother, it allows you to keep close tabs.
Model the behavior you need to see. An astounding number of staff is poorly trained. Or shouldn’t be working in that environment in the first place.
Listen carefully to what experts tell you. Ask questions, yes. But also listen.
Ask why. Why this, instead of that? Why now? Why, why, why?
Keep asking why. You’re entitled to know.
Don’t leave until you understand the answer to your questions. “It’s kind of hard to explain” is not an answer.
If your gut/instinct/intuition is screaming, listen.
If the hair on the back of your neck stands up, run.
Document. In long-term care, the rule is If it isn’t documented, it didn’t happen.
Join or start a family council. Similar to a monthly resident council, this gives you both a voice and documentation.
Attend the family support group.
Know the regulations (or how to find them).
Don’t give away your power. You are cutting a check every month. Competition is typically cutthroat. Use this to your advantage.
Use a nanny cam. Again, the community will no doubt tell you this isn’t allowed. Now you know their feelings on it.
Say no. Cash is king when it comes to choices, but Medicaid wins when it comes to regulations that will protect your loved one. Saying no to room changes is just one of those things. Take a look at the regulations in your state. You may be surprised.
Mention your attorney. Should you use this as a threat? No. Should someone be jamming your mom full of antipsychotics? No. So do what you gotta do.
Vote with your feet. Competition is fierce; use that to your advantage.
Request documentation of staff training.
Find a reporter. Make friends.
Use Twitter. Reporters really like to hang out on Twitter.
Use Google and Facebook, too. Tell a few hundred of your friends. And their friends. And their friends.
Request the Ombudsman as a support group or family council guest.
Have at least a basic understanding of regulations.
Use professionals you trust.
Make a commitment to avoid memory care placement.
Take your parent or partner seriously. Just because someone has a diagnosis of dementia does not mean they aren’t trying to tell you about something serious and real.
Stop others in their tracks when they speak disparagingly or dismissively of people living with dementia.
Ask others to explain the funny part to you when they’re telling a joke about dementia.
Share this post with a friend. Ask them to add their ideas, too.

Please add your ideas to the list in the comments section below. And don’t stop fighting. Vulnerable people are depending on us.