Friday March 20, 2020: To say these are challenging times is a massive understatement. But we have all been through challenging times, as individuals, as communities, as nations.
Yet, so far, we have managed to survive as individuals, and as a species. We have what it takes to get through seemingly impossible challenges, especially when we work together.
We can make it through this pandemic. Dementia care partners worldwide know we can, because we’ve learned how to deal with stuff like this. It’s part of the territory. Yes, there will be seemingly unbearable loss and grief. But those too are part of the territory. Part of being human.
20 things that are not shut down, quarantined, cancelled or kept at a distance when we deal with challenges such as pandemics and dementia
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Wanting to “go home” is a desire often expressed by people who live with Alzheimer disease and/or other types of dementia, even when they are in their own homes. Not being able to fulfill a loved one’s desire “go home” can be incredibly frustrating for care partners who would certainly take their family member living with dementia “home” if only they could.
In the early days of being a care partner to my mom, I didn’t know what to do when she said “I want to go home.” She would have her little bag packed with random stuff, and be ready to go out the door.
“But Mom, we are home,” I would say. “Look, Mom, this is your furniture, these are your carpets, those are your pictures on the wall. We arehome!”
When she wasn’t convinced, the conversation would get more heated as we stood arguing in the kitchen, den, or living room of her big red brick house on the hill, until I sometimes heard myself yelling at her in exasperation “Where is home then, if it’s not here?”
I soon learned that arguing with her didn’t work. It was a waste of time and energy. It left both of us emotionally drained, and no further ahead. Eventually, I found different solutions to “I want to go home,” as well as other challenges. One solutions was to put myself in her shoes, to see her reality rather than my own.
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On February 26, 2015, I received a registered letter from the facility in which my mom had resided for two and a half years requesting that I limit my visits to my mother to between the hours of 1 p.m and 3 p.m. on Monday, Wednesday, Thursday, Friday, Saturday and Sunday, and from 2:30 p.m. to 4:30 p.m. on Tuesdays.
Mom loved to have afternoon tea in the living room with me. Tea was from 3 p.m. to 5 p.m. The restrictions meant we would only be able to have tea together once a week on Tuesdays instead of every day as we had been accustomed to do. She also got a great deal of joy from Thursday morning sing-alongs; we would no longer be able to attend those either.
Furthermore, Mom was normally in a sedated antipsychotic sleep each day until about 3 p.m., which meant she would be sleeping during the time I was “allowed” to visit. I asked for the hours to be changed. My request was refused.
Denying family members access to the people they love is a form of abuse. The abuse and the number of people who are subjected to it in Canada is finally coming to light because of advocates like me, Mary, and Tanni. See our stories in the videos and links below.
There is irrefutable evidence that prescribing antipsychotic drugs to people who live with dementia does more harm than good in most cases. These drugs are NOT approved for use in dementia care in most countries.
So why are physicians still prescribing these medications to people who live with dementia?
Because physicians:
are often pressured by care partners, family members and/or care workers and nurses to provide a “magic pill” that will fix situations that care partners, family members and care workers find challenging
aren’t aware that non-pharmacological interventions are more effective than drugs in changing behaviour of people living with dementia that dementia care partners and care workers find challenging
don’t have time to properly counsel dementia care partners, care workers and others in effective non-drug interventions
don’t fully understand the negative impact and harmful side effects that antipsychotic drugs have on people who live with dementia
believe (erroneously!) that they are doing the right thing
Sometimes I lose hope that dementia care will ever change. It often feels as if we’re going backward instead of forward. Then someone such as Wendy Carr inspires me and renews my hope.
When Wendy began commenting on the My Alzheimer’s Story’s Facebook page in 2018, I was struck by her practical wisdom (see one of her quotes below). It was clear from her comments that she worked in a long-term care facility, and that she was keen to create change. I wanted to know more about her, because we need people like Wendy “on the ground,” changing the system and making a difference in the lives of people who live with dementia in care facilities right now.
I connected with Wendy, and asked her to tell me more about herself; here’s what she wrote:
“I was a Registered Nurse (RN), with experience in Theatre, Ophthalmology, Aged Care and Psychiatry. I left work to care for my sister, then my mum, and then, sadly, my husband. They all wanted to die at home, not in a hospital or palliative care setting. We were able to do this with a huge amount of assistance from Little Haven, a not-for-profit we have in my area. It was a privilege for me to care for my family members at home until they died, although it was emotionally very difficult – much more so for me than if they had been in a hospital or care home. For people to die at home is almost taboo here in Australia, so those who wish to go that route have little support. My Welsh background views death differently I think.
Because I was out of paid nursing for so long while caring for my family members, I would have had to retake full training to become registered again. Financially, with three children, that was impossible. So I returned to Aged Care as a Nursing Assistant, and was offered a position in the dementia unit. It is brilliant work, albeit at poor wages. One of the things I most appreciate about being a nursing assistant is that it’s the best place to initiate change. I also love the fact that I work so closely with the residents rather than attending to RN duties that often preclude the building of the vitally important relationships with the people we care for. I could return to university now, but I’m having way too much fun in this assistant role.
I work in a large one-hundred-and-sixty bed, purpose-built facility, which is amazing for a small country town in Queensland, Australia. The facility is set in a beautiful bush environment, and is transitioning from a task-oriented to a person-centred care model. Moving to understand the person’s reality is a hard concept for some carers to grasp. Many still believe any and all behaviours are caused by “the dementia” and cannot be altered or understood, so meds or restraints are still “go to” options when staff members are challenged by the behaviour of some residents. Australia has new laws to address the use of chemical and physical restraints in aged care, which is going to be a huge breakthrough. That said, it’s relatively easy to find loop holes. As with most laws, time will tell. I must admit I am impatient with the slow pace of change.
I have worked at this centre for seven years. It is a not-for-profit, and doing an amazing job. I prefer working night shifts. Although there is traditionally less staff at night, it can be the best time to build close relationships with residents. Nighttime “behaviours” require a complete reset of our own headspace!
In short, person-centred care (or wholistic nursing as I call it), is finally making inroads, and practices are starting to change. I’m old, but I’m so glad this shift is happening because my desire to provide this kind of care is one of the reasons I became a nurse forty years ago.
Your page is so helpful in redefining attitudes especially as you had first-hand experience caring for your mother. You have helped me to realise I’m not completely mad in thinking we can do this better. Together, we can create a more positive experience for people who live with dementia, care workers and family care partners.”
We need more advocates such as Wendy Carr and Joanna LaFleur in dementia care to create new care models from the ground up! Thanks Wendy and Joanna for helping to change the face of dementia care worldwide.
During the first two years Mom was in dementia jail, she was still able to walk. I would often bring her to my house (which was a three-minute drive up the hill), for supper, a music session or just to hang out.
We would talk about everything from soup to nuts. Sometimes our conversations were light and airy, sometimes they were emotional and difficult. When they were the latter, I made a special effort to be with her in whatever space she was in so we would be connected.
My life experience has taught me that some stuff can’t be fixed, no matter how hard you try to make it better. And as a care partner, I learned that people who live with dementia are human beings with feelings just like the rest of us. They struggle just like the rest of us. They want to succeed just like the rest of us.
When Mom and I struggled, we supported each other. We found these five things helped us get through tough times (maybe they’ll work for you too):
Here’s a real life example / demonstration from a conversation Mom and I had on April 10, 2013. I had brought her to my place for supper. We were struggling, and we didn’t know what to do:
Yes, there are solutions to addressing situations and behaviour that care partners and care workers find challenging. In most cases finding a solution involves thinking out of the box, which is what the staff at this gentleman’s care home did. He wanted to tap and clap, which people around found disturbing. Staff were stumped initially, but then they came up with an innovative solution as shown in the video below.
This is an outstanding application of a “Responsive Behavior” Assessment. Our partners at Mt. Bachelor Memory Care sent us this video with the following message: “This individual has a habit of clapping his hands or rapidly tapping silverware on the table. Staff were making him wear gloves and taking his silverware away and replacing it with plastic, this caused him to disengage. I worked with the team using the form and this is what we came up.” [Shared with permission]
The innovative team at Mt. Bachelor looked at an individual’s behavior, understood it as a response to a need, and found an alternative to meet that need which is appropriate and meaningful. Rather than allowing the person to retreat or disconnect, they adapted the environment to everyone’s benefit. Well done!
Frontier Management‘s Mt. Bachelor Memory Care is a Gold Credentialed Montessori Inspired Lifestyle Community in Bend, OR. The commitment and care shown here demonstrates why they deserve that award.
The “form” they refer to above was developed by the Center for Applied Dementia Research, and is part of their training in the Montessori approach to dementia care.
I should have known better than to invite my photographer friend Edith to do a day-in-the-life photoshoot of Mom and I on a Friday.
I had intended for Edith to capture in images the wonderful time Mom had when I brought her to my place for lunch or dinner. I wanted to show how well she was able to function, how she helped me make lunch, how close we were, how capable she was, and how much we enjoyed spending time together.
But Friday was bath day. That meant Mom was more likely to be even more drugged than usual. Why? Because she “resisted” being undressed and put in the noisy whirlpool bath with a sling-like lift that must have frightened her. Sometimes she resisted “violently,” just as 98 per cent of “normal” people would under similar circumstances (per my Short Survey on Behaviour). Adding fuel to the fire was Betsy,* the nurse who gave the baths; she was as mean as a junkyard dog. I don’t recall ever seeing her smile during my four years of daily visits to Mom’s dementia jail. On several occasions, she mocked Mom right in front of me; in one instance making fun of the fact that Mom had to pull herself along with her feet in the wheelchair to which she eventually became confined. Mom wasn’t the only resident I witnessed being subjected to Betsy’s abuse, and one of the care workers confided in me that she would sooner send her mother to hell than place her in a home that Betsy worked in.
Betsy was close to six feet tall, and solid. Real solid. They called her “the sergeant major.” Mom, on the other hand, was five foot two, osteoporosis having shrunk her a couple of inches in the previous decade. She was in her mid-eighties, living with dementia, and sedated with antipsychotic drugs because some of the staff–the ones who failed to engage her in ways that worked for her–found her challenging.
Mom’s bath time aggression was carefully recorded in the nurses’ notes I got copies of when I launched a legal bid to get control of her care in August 2013.
On April 12, 2013, for example, Betsy wrote:
Then a week later:
Hmmmm. So it wasn’t okay for Mom to call out for help when she felt threatened, and under attack, but it was perfectly fine for Betsy to do so?
I know Mom’s reactions could have been prevented with the right approach; I know it with one hundred per cent certainty. But Betsy either didn’t know the right approach, didn’t have time to use it or didn’t want to use it. Caroline or I helped Mom shower every morning for more than a year, and Mom never hit, slapped, kicked or pinched either of us. Ever. Sometimes she was slightly reluctant, saying she didn’t need a shower (for example), but we always managed to convince her, and the process always unfolded without incident. In fact, mostly it was a pleasant experience for her and for us. But Betsy didn’t use the right approach, and everything went pear shaped as a result.
Of course Mom and dementia were blamed for the “bad bath time behaviour,” and when things got really out of control, they gave her an extra dose of whatever to subdue her. That’s why and how she ended up like this on that failed photoshoot Friday in 2014:
This video of my catatonic mom haunts me. I can’t imagine anyone watching it without being shocked, even horrified. It reminds me of the final scenes of One Flew Over the Cuckoo’s Nest in which Jack Nicholson’s “troublemaker” character Randle McMurphy is made vegetative after being lobotomized. I remember crying when, out of love and compassion, McMurphy’s big native friend (Chief) kills him by smothering him with a pillow. I never dreamed I would one day see the same vacant look in my mother’s eyes.
“It was a barbarous procedure with catastrophic consequences, and yet it was once widely accepted and even earned a Portuguese doctor a Nobel Prize. In the annals of medical history, it stands out as one of medicine’s biggest mistakes and an example of how disastrously things can go wrong when a treatment is put into widespread use before it has been adequately tested.”
Maybe one day we will also stop giving antipsychotic drugs to people living with dementia for the same undeniable reasons, and they won’t be tortured and abused like my mother was for the last four years of her life.
Many of the comments people make on my posts, and the stories they send me by email and snail mail break me heart. Some literally bring me to tears. This is one of them – a comment CL made when I posted “an open letter to the dementia community worldwide” on the MAS Facebook page:
“When my father was in the hospital for a stroke, a gentleman used to show up every day. He was an older patient, and he used to tell my dad great stories and jokes from his younger years. My dad thoroughly enjoyed these daily visits.
One day my dad asked me to check on “Robbie” because he hadn’t seen him in a couple of days. So I checked with the nursing staff and they said he was moved to a different ward. So I went to look for him. I found him restrained in a chair, in a zombie daze and drooling. It was heartbreaking!
When I questioned the nurses, they said someone complained about him walking around talking to other patients, so they did this horrifying drugging and restraining!. I cried. Then I told my dad he had died. I couldn’t tell him the truth. It was awful!.
P.S. Robbie never hurt or touched anyone. He just stood at the bottom of the bed and talked. Still haunts me to this day. Five years now.”
The very same thing happened to my gregarious and fun-loving mom: she was physically and chemically restrained for being friendly and sociable. Just the thought of it still makes me cry. Imagine the state of poor “Robbie,” who had brought others joy with his “wandering,” if his friend’s daughter felt it was better to tell her father Robbie was dead rather than tell him the truth of what had happened. Better to say he was dead. Think about that.
I believe it’s a crime to do this to vulnerable people, and in particular to vulnerable elderly. We must stop it. And we must #BanBPSD.
Many of the comments people make on my posts, and the stories they send me by email and snail mail break me heart. Some literally bring me to tears. This is one of them – a comment CL made when I posted “
My Alzheimer's Story 