In the course of answering the question, “How do I know when it’s time for memory care?” I advise clients to write down whatever their “deal-breaker” (Incontinence? Wandering? Up all night?) is so they can refer back to it later when they’re moving forward with placement.

Why? Because moving forward with placement is when the Guilt Monster shows up, threatening to eat family care partners alive. The Guilt Monster is the nasty voice that shows up as you’re drifting off to sleep, whispering Everyone else can do this; you’re just being a baby and If you were a good daughter/partner, you’d take care of him/her at home and on and on and on. And on. It just won’t shut up.

But the Guilt Monster doesn’t need to wait for placement (or the delicious twilight before sleep) to barge into your life. A reader reminded me of that last week, sending me the following email (subject line: Guilt! Guilt! Guilt!). She generously gave me permission to share it with you. I’ve made minor edits to protect privacy.

Hi Christy~~

I just got back from two days at the Oregon Coast. I ate clam chowder at Mo’s, SLEPT, spent a whole afternoon sitting on the seawall at Depoe Bay watching whales frolicking in the bay while eating two scoops (Yes!), of Tillamook Udderly Chocolate ice cream, and reading a Nicholas Sparks novel.

And the whole time, I was plagued by GUILT because I did not answer my phone!

Even though I live in Oregon while my mom lives with dementia in [another state], I micro-manage her care via phone, emails, texts. She calls me throughout the day when she is confused, anxious and/or disorientated. I talk to her caregivers two-three times a day not to mention texting, texting, texting to monitor her behavior, eating, pooping, crying and complaining.

I gave everyone the heads up when I left that I may not have cell coverage. But I did have coverage. I kept hearing the buzzing of the muted phone calls and feeling the vibration of the text messages. AND I IGNORED THEM!

So this morning, I am back [home] doing damage control. And feeling guilty for having had some rest and some fun.

Why can’t I give myself permission to take a day off?

Thanks for letting me vent!

 

Great email, right? It got me thinking about how care partners end up in this loop of being so worn out physically, mentally, and emotionally that they have to take time off, and then can’t enjoy it because they’re feeling guilty.

Once back in the swing of being the primary care partner, they often feel resentful because they’re so worn out physically, mentally, and emotionally. And then they usually feel guilty about that, too.

That first question unleashed in me a flurry of other questions about things I believe are lurking just under the surface of guilt.

Why can’t I give myself permission to take a day off? First, you deserve a day off. All of you. Sadly, your loved one never gets a day off from living with dementia. This makes it even more imperative that you take a day off!

As the primary care partner, your loved one is depending on you to make everything okay for her, to the extent possible. If you’re not okay yourself, you’re going to have a problem making it okay for her. As in, place the oxygen mask on your own face before attempting to help the person next to you!

Are you able to distinguish the difference between Your Way and the Right Way? Your Way may very well be the Right Way. Mine, too. That doesn’t mean they’re mutually exclusive.

Dads can get their young daughters ready for school, but it’s almost always in a different way than Moms would do it. End result? Daughters still go to school, clean, teeth brushed, hair done, and clothed. Just not the way Mom would’ve done it. Different doesn’t mean bad, it just means different.

Do you trust the other people involved in your loved one’s care? The answer here needs to be an unequivocal YES. I understand trust deepens over time, as relationships are built. I’m talking about understanding that although others will not do things exactly the way you do things, you can still trust them.

Can you trust your loved one will still be cared for and treated with respect, kindness, and love even if you’re not around? If your gut is telling you that won’t happen, take action immediately. That’s not a situation where you wait it out.

Is micromanaging necessary? Micromanaging is often confused with a trust deficit, but my theory is it’s really an outward manifestation of anxiety in the micromanager. It happens when you’re feeling out of control with a particular situation or person.

You’ll likely feel the need to micromanage in situations where you aren’t getting the results you want/need. This happens when expectations haven’t been clearly communicated, ie, has the staff actually read the service plan? It also happens when staff hasn’t been properly trained to do the job and work with people living with dementia.

As the now-retired (but still legendary) Director of Nursing Services Barbara Di put it, “Families deserve to go home, relax, go to dinner, to a movie, have a glass of wine, sleep through the night.” The only way that happens is when you know your loved one is getting great care. If you’re not feeling that level of relaxation, there’s a big problem.

Are you caught in a vicious circle? If you answer the phone every time it rings, you’re setting the (unconscious) expectation that’s just what you do. For others attempting to contribute to your loved one’s care, it means they don’t have to become an expert on your loved one–you’ll always be around to save the day.

For your parent or partner, it sends the signal that when ‘x’ happens, you are the (only) person who can solve for ‘x.’ No one else will do. That means a professional care partner is not going to have much success with attempting to meet your parent or partner’s needs. They’ve been “trained” that you’re the only one who can do that.  

Are you (accidentally) using procedural memory to your disadvantage? Procedural memory (which people living with dementia still have and use) is what tells people they sit at a particular table, in a particular chair, in the community dining room. (Anyone who’s ever worked in long-term care can attest to the throw-down that will happen if the new guy sits in the wrong chair!)

Procedural memory is also what prompts your mom to refuse help from staff and instead say “I’ll just wait for my daughter,” even though she’s in need of incontinent care right this moment (or whatever the situation may be).

Do you see this as a sprint, or a marathon? Please remember, you’re in a marathon. Sprinting won’t help you get through it faster, but it will wear you out faster. This disease process lasts anywhere from a few years, all the way up to 20. The average is 7-12 years. You’ve got to pace yourself to avoid injury, right? It’s not only okay for you to take a break, it’s necessary. It’s okay for someone else to take the lead.

Now, back to guilt. Here’s the definition:

Guilt is a cognitive or an emotional experience that occurs when a person believes or realizes—accurately or not—that he or she has compromised his or her own standards of conduct or has violated a moral standard and bears significant responsibility for that violation. (https://en.wikipedia.org/wiki/Guilt_(emotion) )

Tell me, honestly, what is it you’ve done that’s violated a moral standard? One you bear significant responsibility for? When I say it like that, feeling guilty sounds silly. My aim isn’t to make you feel silly; rather, to help you shift your perception even just 15 degrees so you can look at this issue differently.

I’ve promised you before, and I’m promising you again: I will never try to talk you out of your feelings. I get there’s a big difference between knowing something intellectually and knowing it in your bones, really feeling it.

I can try to help you see what’s lurking under the surface, I can encourage you to look at it differently, I can beat the drum repeatedly. Ultimately, though, how you feel is up to you. I’m here to support you, to send you virtual hugs, love, and giant buckets of patience–no matter how you feel.

But just in case you need permission to let go of guilt, here it is. This is your permission slip. Now, go sit on a sea wall, eat two scoops of your favorite ice cream, and read a book. Or whatever it is that rings your bell, go do that! You’re worth it, and you definitely deserve it.

 

Christy Turner is the founder of DementiaSherpa.com (CTC Dementia Care Management) and has enjoyed the privilege of working with 1,100 people living with dementia and their families. Follow on Facebook, Google+, Instagram, Periscope, Pinterest, Twitter, and YouTube. Content varies daily across platforms.