Advocating for Your Loved One (Without Alienating the Helpers)
Assisted living, skilled nursing, memory care, rehab ... when your loved one with dementia moves from their own home into managed care, it can be frightening for them and their family alike. This is especially true for the person who ends up being "the one": The one who will visit regularly, interact with staff and basically serve as their advocate from this point forward. We've all heard horror stories of neglect, or of situations where there isn't enough staff to adequately care for residents. Sometimes, though, even the finest, fully staffed facilities don't deliver the level of hands-on care that we would like. And that's because they can't.
The simple truth is that few among us are equipped to provide the level of care a loved one with dementia needs. But that doesn't mean a care facility doesn't need guardrails. And as your loved one's advocate, that's what your job is: to be the guardrail.
If you follow my blogs or podcasts, you know my story: Both parents entered memory and skilled nursing care at the same time. My dad's dementia was severe and though my mother's was less advanced, she had medical and mobility issues. It was clear I could not care for them personally in my home. Once I'd found a facility that I felt confident about, my biggest concern was how to make sure my loved ones would be well cared for. For me, the answer was to be available, engaged, and kind.
Get to know the staff.
I made it my mission to get to know as many of the staff as possible on a first-name basis: the social worker, nursing staff, charge nurses (both shifts), activities director, physician, facility director and dietitian. And I made just as sure that they knew me.
I was available and engaged every step of the way, which meant the staff could consult me about everything from what my folks would have for their meals to how their room would be arranged to how they liked their hair cut. I treated every member of their care team with kindness and appreciation, from the laundry staff to the dietitian, janitor to the charge nurse. And yes, I brought treats for the staff.
Once you know the staff (and they in turn know you), you'll be surprised how amenable they will be to your questions and concerns. And you yourself will learn how to differentiate between real issues and issues that are the dementia demons talking: "Your Dad keeps taking my shoes and giving them to the woman down the hall" (True). "Your Mom moved out" (Dementia demon, she was in the same room). "Dad doesn't have any shoes" (True but false: he was putting them under the dresser). "I don't have any pants" (True, there was indeed a serious laundry-loss issue which the facility addressed).
Visit often (and unexpectedly).
During my parents' first nine months of care, I visited two or three times a week: once on the weekend, and again on random days throughout the week. This way I experienced first-hand what their life was like there, as well as the state of their emotional, mental and physical well-being. Believe me, seeing my folks interacting with staff and joining them for meals, movie-time, games, sing-a-longs and other activities was a comfort to them — and gave me a clearer understanding of what was going on, with them and at the facility. I also gained a greater appreciation for the staff in general. Eventually I tapered the visits to once a week, because as much as I wanted to see my parents, doing so triggered Dad's anxiety and Mom's paranoia (both dementia side effects).
Answer every call and email, and attend every meeting.
If the staff called me with a concern or question about my loved one, I answered immediately. Same for an email. I also attended every care team meeting — these typically involved the dietitian, director of nursing and activities director who provides updates on your loved one's emotional, mental and physical condition. It's also your chance to ask questions about their likely outcomes and to manage or reset your own expectations about their progress. If the facility caring for your loved one does not offer these meetings ... request them on a quarterly basis at minimum.
What I learned from the staff members I came to know best was that after several months, family members often don't visit loved ones with dementia as often, if it all. And I understand: It is tough to see someone you love slowly slip away. But it is critical to keep visiting on a regular basis, even if your loved one doesn't remember it, as it enables you to understand how they are progressing and what to expect next.
Have the right paperwork on hand.
Make sure the care facility has a copy of your loved one's Healthcare DPOA (Durable Power of Attorney) and a DNR (Do Not Resuscitate) directive if you or your loved one has so chosen.
Ask questions, often.
Once you've established that you're an engaged, available, and kind advocate, you can ask pretty much whatever you want to whomever you want. I addressed my questions to the people with whom I had the best rapport. In my case that was the nurse or charge nurse, the neighborhood director or the social worker. But sometimes it was the director or my favorite CNA.
Are they engaged in social activities?
Are they sleeping ok?
Are they interacting with other residents?
Are they participating in activities?
Why doesn't Dad have any socks?
Why does Mom have a banana in the pocket of her recliner?
What do they need? (More PJs? Extra slippers? Socks? Reading glasses?)
When are their designated bath/shower days?
Be Nice.
Growling at staff and assuming everything your loved one with dementia says is 100 percent true all of the time won't get you anywhere. Here's what will (at least it worked for me):
Explain that you're overseeing your loved one's care
Have an attitude of gratitude
Ask for help and advice on how you yourself can cope and navigate the journey
Be friendly and get to know the staff
Remember they are doing the job you cannot do...or let's just put it out there, that maybe you would not want to do even if you could
Remember the work the care team does for your loved one is difficult. They often bond with their patients. When my Dad died, the charge nurse and hospice assistant both attended his funeral — and wept.
If you see something, say something.
Mom has no clean laundry. The things hanging in Dad's closet are not his. Dad's toenails are way too long. Mom needs a haircut. Another resident keeps walking into my Mom's room and using her bathroom. These are things you should ask about. When you do, also ask yourself the following. If any of these are a "no" then schedule a visit with the facility director.
Is the staff engaged or just staring at their phones?
Is the staff kind toward residents?
Is your loved one clean and well groomed?
Is your loved one's room neat and clean?
Be realistic.
Dementia doesn't play fair. What works for a sane person (or a child) does not always work for a loved one with dementia. And when the one you love is in care, trust me: everything won't go the way you wish it would. Just remember, that sometimes...
Dad is wearing the same clothes as yesterday (or still in his PJs) because he didn't want to change that day. A good care facility will not force a resident to change clothes or bathe unless they or their clothes are soiled.
Mom refused to take her bath, which means she won't get one (unless absolutely necessary) until her next assigned bath day.
The eye doctor or dentist or podiatrist didn't arrive as scheduled.
The hair stylist quit.
They ran out of Mom's favorite cake, so she didn't get any with dinner.
"If only I could take care of Mom myself.”
“If only we didn't have a two-story home. If only I wasn't still working full time.”
“If only Dad didn't wander off so often."
When your loved one with dementia moves into a care facility, you're turning their care over to someone else. But you are not turning your back on them: you're turning to others for help. Be engaged and available, and be kind. For me, it allowed me to advocate for what was best for my parents. Even when I was fatigued, sad and depressed (which was pretty much every day of their two-year journey). But one thing I wasn't: Alone. And neither were they.