Updated 9/14/17

Have you heard this one? Mom lives in a care community, and every time Mom’s approached for care, she screams and strikes out. Because Mom is so uncooperative with care, caregivers use restraints. Additionally, the care community is requesting the family hire private caregivers.

I wish I could say this is a really bad joke. But here’s the truth: A woman asked a colleague of mine in an allied profession what to do about her mom, who’s living with dementia and enduring what I describe above. Said colleague contacted me.

[Cue my full-throated virtual scream]

Should you ever find yourself in a similar situation, here’s what to know and do.


1. Get Mom out, ASAP

In the situation above, the staff is clearly showing they have zero understanding of dementia. Mom’s in the wrong place. The staff is also signaling they can’t meet Mom’s care needs by requesting you hire extra staff.

Again, Mom’s in the wrong place. Contact a placement consultant for help. In Oregon, go to OSRAA.com for a list of qualified consultants.


2. Treat pain

So-called “behaviors,” such as screaming, biting, striking out, kicking, etc. when care is offered are a sign of pain, or poor approach on the caregiver’s part, or both.

People living with dementia are notoriously bad at accurately reporting pain verbally. Insist the PAINAD scale be used to determine pain accurately. This was designed especially for people living with dementia.


3. Say NO to PRNs

For reasons surpassing my understanding, pain medication orders for people living with dementia are still mostly written as PRN–meaning the person must be able to request the pain medication!

Refuse a PRN order; instead, insist it be written for routine administration. If you really get into a tangle with an uncooperative PCP, request a 72-hour trial that’s given routinely. That trial period will show it’s working, and then you can request it become a regular order.


4. YOU are the responsible party

That means you can say yes or no to a wide range of things, such as PRNs and restraints. You have way more power than you think you do, so start using it. If you’re feeling bullied, that’s yet another sign this is the wrong placement. Because just imagine how your parent or partner feels when you’re not around.


5. Get a professional involved

Contact me, or someone like me. You need someone who understands the professional geek-speak, is on your side, and isn’t going to try to make you feel like you’re overreacting.



6. Call the Ombudsman

This person’s job is to look out for people who live in care communities. He or she will investigate and arrange a meeting between you and the community staff. Posters should be on prominent display in the care community; if you can’t find one, Google “long term care ombudsman” + your city.


7. Call hospice

Sometimes people suffer from what’s called “terminal agitation,” and hospice can help with this. The hospice team can do an evaluation and determine if service is appropriate for your person at this time.

The hospice team is yet another set of advocates for your parent or partner (and you). Many people feel like hospice is “giving up,” but it’s no more giving up than if you concede you need a cardiologist for heart problems. You want the expert in any given field on your side, right? Hospice=experts in end of life.


8. Just calm down

Ha! Doesn’t your blood pressure spike every time you hear that idiotic directive? Especially when you’re already upset? Now, imagine having dementia and someone tying your arms to the bed, or your body to a chair.

Feeling calmer?

I didn’t think so. See #4 above.

Dementia can last for 20 years, so you definitely need a strategy! If you don't already have one, be sure to schedule your complimentary Dementia Caregiver Strategy call with Christy: Schedule Appointment


Christy Turner is a speaker and consultant, founder of DementiaSherpa.com, creator of the online program Memory Care at Home, and a regular guest on The Alzheimer’s Podcast. She’s enjoyed the privilege of working with over 1,200 people living with dementia and their families…including multiple experiences in her own family.