Like most dementia care partners, Judy Berry was drafted into an unfamiliar role when her mother, Evelyn Holly, began to experience memory loss.
Both Berry and her mom lived in Minnesota, and Berry travelled extensively as a salesperson for a barbequed rib company. When her Mom’s memory started to fail, Berry was keen to ensure her mom remained safe when Berry was on the road.
“I helped her move into an assisted living facility where someone would check on her couple of times a day,” Berry told me. “She was there for three or four years during which I got regular feedback from the staff saying she was declining. But on my weekly visits, Mom had me convinced everything was okay and she was fine. “
As we speak over the Internet via Zoom, I notice a chair beyond Berry’s right shoulder. “Believe” is emblazoned across the backrest.
A woman after my own heart, I think to myself as I listen.
‘Then one day when I was in Texas for work,” Berry continues. “I got a call to tell me Mom had been rushed to the hospital and that I should come back immediately. She had overdosed on various medications she was taking. She’d forgot she’d taken them, and then just kept taking more.”
When it was time for Evelyn Holly to leave the hospital, she couldn’t go back to the assisted living facility because the disease had progressed to the point where it was unsafe for her to do so.
“I had only a few days to find a place for her to go,” Berry says. “I knew nothing about what to look for specifically, having had no experience with this kind of situation before. And the only thing that was available in such a short time frame was the nursing home attached to the assisted living where she’d been for the previous several years. So that’s where she wound up.”
Berry helped her mother get settled in the nursing home, and then flew back to Texas to continue with her work. She was back in Minnesota within days.
“My first day back in Texas, I got a call from the nursing home saying they couldn’t find my mom,” Berry says. “’ She’s in the building, they said, but we don’t know where.’”
Evelyn Holly had gotten into the elevator on the dementia care unit floor where she’d been placed, and had gone down to the basement, where, coincidentally, there there was a volunteer meeting in progress.
“They had a piece of paper hiding the elevator button, but that didn’t fool Mom,” Berry laughs about it now, but says it was frightening at the time. “The people at the meeting thought she was another volunteer and welcomed her to the group.”
“When it came time for all the volunteers to go home, Mom went to the reception with whomever she was with, and then realized she didn’t know where to go. Of course they were on the alert that she was missing, and that’s how they found her.”
From then on, things deteriorated — badly.
Over the next seven years, Evelyn Holly would be kicked out of twelve care facilities in a rollercoaster journey that would eventually result in her daughter Judy Berry becoming a dementia care advocate, developing her own dementia care model and running a unique care facility for 16 years.
Here’s the first part of the story:
Judy Berry is the Founder of DementiaSpecialistConsulting.com. She is a dementia care consultant, a comprehensive care coordinator, and an inspirational speaker. Berry conceptualized, created, built and ran the acclaimed Lakeview Ranch long-term care facility for sixteen years. Based on her experience, she developed the award-winning Lakeview Ranch Model of Specialized Dementia Care. She is nationally recognized for her highly innovative and successful approach to specialized care for persons with dementia, particularly those with a history of challenging and/or aggressive behaviours.
https://myalzheimersstory.com/2016/04/04/not-just-a-piece-of-the-furniture/
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My Alzheimer's Story 
There really needs to be more training for Alzheimer’s care and there needs to be more incentive for the people that work in those places. I don’t understand why they are always short handed and the caregivers are working double shifts. The entire system needs to be redone. I’ve seen where they let students live free in senior housing and they are only required to offer to spend time with the elderly. How great is that? There are so many people in those homes that never see their families. And are treated horrible by the staff.
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Renee,
I agree the system needs to be completely overhauled. And skilled staff need to be trained and encouraged to use innovative and progressive approaches. AND the staff needs to be properly compensated and rewarded for the work they do – it’s extremely challenging work that takes a special calling.
You’re right that many facilities are understaffed and underskilled and that’s why people with dementia end up being medicated… Judy proved that a different model can work. Stay tuned for more of her story.
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I feel so lucky that the facility where my mother lives (on the same grounds as her husband who is in independent living) isn’t anything like the places that Judy describes. Not all care facilities are alike, thank goodness!
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It sounds like got lucky Heidi. My sense based on the extensive reading, research and experience I’m drawing from the groups, forums and organizations in which I participate suggests they are few and far between because our systems in the US and Canada make it hard for facilities to provide care to the standard people deserve. Also, unless one constantly monitors, I think it must be hard to know exactly what goes on… 😦
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I’d hate to know how many loved ones have been “medicated into submission” and “looked at like a piece of the furniture.” Excellent interview that will definitely help raise awareness, and hopefully help others to know they can push back against the medical “professionals” who aren’t doing a good job with patient focused care.
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Yes, you’re right Mike and it’s going to take a lot of work to change systems and perceptions that are entrenched. But Judy Berry has shown it can be done. Teepa Snow has shown it can be done. Pioneering researchers in Canada, the US and around the world have shown it can be done.
It’s a matter of having the will and the motivation to make it happen.
Thanks for your ongoing support.
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Fortunately my Mom is in a good facility in BC and is thriving. As good as it has been for Mom there are glitches that need attention and resolution. It took almost two years for my sister and I to learn to work with the system rather than fight it or just complain to the wrong person at the wrong time in the wrong way. My sister lives in the same city and ‘holds down the fort’ in person. We talk on a regular basis and make decisions together on what non-medical needs to be brought forward. We are able to get results in holding the facility staff and administration accountable; sometimes it takes awhile but persistence pays off, although it is very hard to be patient at times. Of course with medical issues my sister encounters on her visits or hears about from the facility urgency and timing is accelerated.
I don’t think we can sit back and wait for systemic changes that have been mentioned; each of us has to make the effort to make it better on a one-on-one basis.
Regarding the meds that Berry’s mother’s was given in the numerous facilities, were the prescribing doctors involved in-house or independent psychiatrists or specialists other than general practitioners? How does she handle that in her own facility?
We went with a psychiatrist that was not connected with the facility because we wanted Mom to be medicated only if necessary, only as much is necessary and only for as long as necessary and only to her benefit, not the convenience of the staff. As he had no long standing relationship with the facility we knew he would be focused on what was best for her. He works in conjunction with Mom’s GP so there are no problems with non-psychiatric meds.
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Dear Peggy, I think you’re very fortunate on several fronts:
1) you’re working with a good facility
2) you and your sister work together
3) you and your sister share responsibilities
4) you have open lines of communication
5) you make decisions jointly
6) you hold the facility accountable
7) you recognize the need for urgency
8) you understand the importance of being judicious about medication
9) you have not one but two external physicians
10) the two external physicians work together
My personal experience and my observation of many other families is that yours is by far the exception rather than the rule. Dementia care Pioneer Teepa Snow suggests that four out of five families fall apart; I have no doubt that’s the case.
Further, at least in the province of Québec, and from what I’ve read and heard of facilities elsewhere, there are many who threaten to kick residents out when families complain of poor care, lack of amenities, substandard practices, and over medication with antipsychotics. for example, if you speak French, you can hear of families who have been either restricted from seeing their loved one or bend altogether from seeing their loved one because of their justified complaints at this link: http://www.985fm.ca/lecteur/audio/que-doit-on-faire-pour-que-nos-aines-soient-mieux-317417.mp3
With respect to your question about Judi Berry’s mother, I suspect that there was a wide range of circumstances as her mother was kicked out of twelve facilities over a period of seven years. However, I will try to reach her, and ask her if she can answer your question more specifically.
Regarding your comment “I don’t think we can sit back and wait for systemic changes that have been mentioned; each of us has to make the effort to make it better on a one-on-one basis,” I couldn’t agree with you more, and that’s why I’ve become an advocate for better care and against the inappropriate use of antipsychotic medications. However, it’s unfortunate that the system and some of the people in it are so incredibly resistant to change, and that those of us who advocate are dismissed as troublemakers, whistleblowers, and worse.
Thanks for sharing your experience, and I wish others were as fortunate as you, your sister, and of course most important your mother.
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