Tag: care

Advocacy, Annie & Cricket, Antipsychotic drugs, NHBPS

which way to the bathroom?

amazingsusan

Which way to the bathroom cropped

This is one in a series of vignettes based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia. The vignettes are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’s type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada. This vignette is called “what a shame.” There’s a link to all the vignettes at the end of the post.

what a shame

I have to go to the bathroom. I’m desperate. I really need to go.

I walk down the hall looking for the ladies’ room, but I can’t find it. What a strange hotel. It doesn’t have any toilets. The doors to the rooms are open, but most of them have stop signs in front of them. I guess I’m not allowed to go in, but I’m not sure. I’m not sure. What an odd place. Here’s a room with no stop sign, there’s an old lady inside; I’ll ask her. The old lady is in a chair. The chair is tilted back. She has a blanket across her legs. When I walk in, she leans forward, and stretches her arms out to me like she wants something.

“I have to go to the bathroom,” I say. “Do you know where the toilet is?”

Ahhhhhhh ahhhhhhh ahhhhhhh,” she says. I don’t understand what she’s saying. It looks like she’s trying to get out of the chair. But she can’t. Maybe she needs help too. Maybe she can’t hear me. I walk closer.

“I have to go to the powder room. Do you know where it is?” I repeat a little louder in case she’s deaf.

Ahhhhhhh ahhhhhhh ahhhhhhh,” she says again as she takes hold of my wrist. Her fingers are bony; her grip is light. Old ladies aren’t strong. The poor thing. I wish I could help her, but I can’t. I have to find a bathroom. I feel wetness between my legs. I put my hand there, and press it into my body. I walk knock-kneed out of the room, my inner thighs rubbing together. The hall is empty.

I can’t wait. I can’t. I’m going to pee my pants. I’m going to pee my pants. Oh no. Oh dear. Quickly now. Undo the button. Pull the zipper down. Pull the pants down. Quick. The pee is already coming. Squat. Put your hands down so you don’t fall over.

Dark yellow liquid gushes from me onto the floor. Relief. A sunny puddle spreads on the white linoleum. It surrounds my shoes. Move your hands! Move your hands!

“Annie! What are you doing?” A young woman is walking down the hall toward me. “What are you doing Annie?”

My hands are wet. My cheeks are hot. I can’t stand up. “I had to go to the bathroom.”

“I see that,” the young woman says. “But why are you doing it on the floor? You have to go to the toilet when you need to pee.”

I know. I know. I couldn’t wait. I couldn’t wait. She helps me stand up; she pulls up my underwear and pants. The puddle is still spreading. I feel sick.

“My hands are wet,” I say.

“C’mon, let’s get you cleaned up. And next time, when you need to pee, go to the bathroom, okay dear?”

“Okay,” I say. “Okay.”

More

©2016 Susan Macaulay / MyAlzheimersStory.com

Image copyright: hikpic / 123RF Stock Photo

Activities, Inspiration, Life & Living, Tips, tools & skills, Toward better care, Videos

dachshund demos 7 person-centered care tips

amazingsusan

Dachshund demos person-centered care copy

Isn’t it amazing that many animals know intuitively what some humans seem unable to learn or unwilling to apply?

Here are a few person-centered dementia care partner tips inspired by a viral video of two friends taking a walk:

1) Do stuff they like, together

2) Focus on capacities

3) Adjust your pace

4) Be supportive

5) Be patient

6) Exercise

7) Love

 

Advocacy, Annie & Cricket, Antipsychotic drugs, NHBPS

please remain seated for the rest of your life

amazingsusan

This is one in a series of vignettes based on the Nursing Home Behaviour Problem Scale (NHBPS), which is used to measure agitation in people who live with dementia. The vignettes are told from the point of view and in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’ type in the mid- to later-stages of the disease. Annie resides in a long-term care facility somewhere in Canada. This vignette is called “please remain seated for the rest of your life.” There’s a link to all the vignettes at the end of the post.  

~~~~~~~~~

I’ve been sitting in this chair for hours. For days. For weeks. For months. Maybe I’ve been sitting in this chair for years; I don’t know. Why does that old lady in the wheelchair keep moaning? Is she sick? Why doesn’t someone help her? Why am I here? It’s so noisy. Beep. Beep. Beep. I want to go home. What is that beep, beep, beep? It makes me nervous, all that beeping in my ear.

I’m tired of sitting in this chair with no one to talk to and nothing to do. People walk by me to and fro. What are they so busy doing? I’m busy too. I have things to do. I have places to go. I’ve got to get out of here. I’m going to stand up. My legs are a bit rubbery, but it feels good to stand. I want to stand. It feels good. Oh dear. What’s that buzzing? And more beeping. Louder beeping. Louder and louder.

“Annie!” A voice scolds me. Suddenly, there’s a hand on my shoulder. It pushes me back into the chair. I sink and sit. My bottom makes a little thump.

“Sit down, Annie! You’re not allowed to stand up,” the voice says. I try to get up again. The hand holds me down where I am. It stays on my shoulder. A face leans into mine. Close.

“You’re not allowed to get up, my love. You’re not allowed. You might fall down and hurt yourself.”

I’m not afraid of hurting myself. I sit in this chair for hours. I cross my legs. I uncross my legs. I pick the polish off my fingernails. People walk by. To and fro. To and fro. They have somewhere to go. I want to go too. Let me go.

More

© Susan Macaulay / MyAlzheimersStory.com 2016

https://myalzheimersstory.com/2018/01/23/hidden-restraints-hidden-abuse/

https://myalzheimersstory.com/2017/12/27/dont-fence-me-in-a-true-story-about-the-impact-of-physical-restraints-on-my-mom-who-lived-with-alzheimer-disease/

Take my short survey on behaviour here.

Image copyright: imageegami / 123RF Stock Photo

Advocacy, Annie & Cricket, Antipsychotic drugs, NHBPS, Toward better care

29 normal behaviours you could be sedated for

amazingsusan

dark hospital corridor cropped

The Nursing Home Behaviour Problem Scale (NHBPS) was designed by researchers in the early 1990s to measure the frequency of “bad” behaviours exhibited by people living with dementia in nursing homes; it lists twenty-nine problematic behaviours supposedly caused by dementia.

Misunderstanding picThis scale and others like it are used to rate the frequency of such behaviour, and often to justify using antipsychotic drugs to sedate people living with dementia. I was shocked the first time I read the NHBPS. Why? Because most of the items on the list describe ways any normal person would act if she or he found her or himself in similar circumstances. We blame behaviours on the disease when instead we should be asking different questions.

I have created a series of vignettes around the behaviours on the NHBPS to demonstrate what I mean. The stories in the vignettes are told in the voice of a fictional character called Annie, a woman in her mid-eighties who lives with dementia of the Alzheimer’s type. Like Judy Berry’s mother Evelyn Holly (a real person), my fictional Annie has also been sedated with antipsychotics and kicked out of several nursing homes for her “problematic behaviour.”

Click here for more vignettes.

nighttime nightmare

My eyes are closed. I must be asleep. What’s that noise? I open my eyes. It’s dark. But light is shining beside me. Is it night or day?

I’m lying down. My head is on a pillow. There’s a blanket on top of me. I must be in a bed. But where? And what’s that noise? It sounds like snoring. Listen. Listen. It IS snoring. Listen. Is it me? Am I snoring? Listen. Check. Listen some more. No. It’s someone else. Someone else is in this place wherever this place is, and that someone else is snoring.

I close my eyes. Try to sleep. What’s that noise? Someone is snoring. I pull the covers off. Sit up. Swing my legs around. Feet on the floor. Stand up. The snoring is coming from across the room. There’s a bed there. I think someone’s in it. Oh dear. Why am I in a bedroom at night with someone else? Why aren’t I at home? Mummy will be worried about me.

I walk toward the bed. My legs feel a little shaky. Something pulls me back, but I keep walking. My nightgown stretches tight across my chest. Something is holding me back. What is it? I lean forward. Suddenly the soft flannelette floats loose at the front again. I lurch a little from the unexpected release, but I don’t fall.

Whatever was holding me back isn’t anymore. A bell starts to ring somewhere. Ding. Ding. Ding. The snoring sound deepens as I get closer to the bed. I reach the bedside. Someone’s in the bed. An old lady.

“Excuse me,” I say. She doesn’t budge. “Excuse me!” Louder this time. Ding. Ding. Ding. A bell rings in the background. The bell is annoying. The snoring is annoying. The old lady in the bed doesn’t seem to notice any of it. Reach down. Put my hand on her shoulder. Shake her gently.

“Excuse me. Excuse me.”

“Mmmmmmmm, mmmmmmmm,” she mumbles. Her eyes stay closed.

“You’re snoring. Stop snoring. Wake up. Wake up.” Shake her a bit harder. She rocks back and forth. Doesn’t wake up. She’s dead to the world. Ding. Ding. Ding. There’s a bell ringing. What is that bell? This place is too noisy. It’s making me nervous.

“Annie! Someone says behind me. “Annie! What are you doing?” Who’s that!? Pull my hand back quick. Straighten up. Turn around. Slow motion. A young girl walks toward me. Or at least I think it’s a young girl. Who is she? Who is she? Her face is black because of the bright light shining behind her. Her voice is sharp: “What are you doing?”

“This lady is snoring. I want her to stop,” I say.

“Edna is trying to sleep, Annie,” the girl says. “You mustn’t disturb her, dear. You have to go back to bed. I’ll help you.”

“But–“

The young girl with the black face doesn’t listen. “Come this way, dear,” she says. “It’s the middle of the night. It’s time to sleep now…”

https://myalzheimersstory.com/2018/11/13/10-reasons-people-living-with-dementia-get-up-in-the-night-and-what-often-happens-when-they-do/

https://myalzheimersstory.com/2018/02/02/20-questions-to-ask-when-a-care-partner-or-resident-walks-around-at-night/

Take my short survey on behaviour here.

Image copyright: hxdbzxy / 123RF Stock Photo

Advocacy, Challenges & Solutions, Hope, Videos

20 paths to dementia care homes away from home

amazingsusan

Loren Shook not overmedicated

It’s time to transform care for people of all ages who live with the Alzheimer’s disease and other dementias – they deserve better than what they’re getting.Family care partners need more support, education and skills to meet the challenges they face every day.

The long-term care facilities in which we warehouse old people must be re-imagined.  We need people-focused environments well staffed by trained care workers who are devoted to providing the best possible end-of-life chapters to our elders.

The requisite dementia care revolution is slow in coming, but there are beacons of hope.I’m encouraged by people like Loren Shook, Co-Founder & CEO, Silverado, who is one of few change agents in the eldercare industry.

“The way (dementia) care services have historically been delivered is wrong,” he says. “People should not be slumped over and drooling in ‘feeder’ chairs. They should not be put in some corner, they should not be misunderstood, and they should not be overmedicated.

“Yes,” he continues. “There is a place for the proper use of medications. But medications should not be used to control the behaviours (of people who live with dementia) because we don’t know what else to do with them.”

Shook is right. Psychotropic drugs (including antipsychotics) are prescribed to elderly people living with dementia to sedate them into compliance. Experts worldwide agree this practice must stop.

We must take collective action to break down the barriers that stand in the way, and replace sedation with compassion, understanding and engagement. That’s what Shook and Silverado co-founder Steve Winner are trying to do in their facilities.

“When you reduce the medications people take, a lot of the side effects go away,” Winner says. “People who were apathetic, lethargic, couldn’t walk or were even bedridden suddenly awaken from the fog. They’re able to move around, strengthen their legs, and get out of their wheelchairs. The change can be dramatic.”

Addressing the use of dangerous and largely ineffective antipsychotic medications is the first step to better care. Here are 20 ways care facilities can improve their performance:

  1. Make love a core operating principle
  2. Leave the biomedical model behind
  3. Stop giving people with dementia antipyschotic medications
  4. Treat residents like adults, not children
  5. Call people by their names, not “pet” names
  6. De-institutionalize institutional environments
  7. Discover and cater to residents’ interests
  8. Engage residents in age-appropriate activities
  9. Encourage exercise and sensual experiences
  10. Ask residents to bring their pets with them
  11. Care more for people than tasks
  12. Support personal growth
  13. Uplift and celebrate, don’t diminish
  14. Use music, dance and movement
  15. Create a “positive-normal” environment
  16. Make days fun, not endless drudgery
  17. Hire employees based on heart, values and a desire to make a difference
  18. Invite employees to bring their children to work
  19. Be passionate and compassionate
  20. Foster a culture of innovation

Watch these approaches at work in this video by Dr. Cathy Greenblatt, sociologist, photographer, and author of Love, Loss and Laughter: Seeing Alzheimer’s Differently:

Is Silverado perfect? No, of course not.

Sadly, even a strong commitment to the highest standards of care may not eliminate the horror of elder abuse or inevitable accidents.

In 2010, a former Silverado employee was sentenced to life in prison for events related to the death of a resident and the abuse of others in 2007. Tragedies like these occur because it’s virtually impossible to know what happens between residents and care workers without around-the-clock CCTV monitoring, which is something I would support for all long-term care facilities.

Well-intentioned senior executives may be unaware of what really goes on in in their establishments when watchful eyes are averted. Elderly people with dementia are extremely vulnerable and unable to report how they are treated; care is only as good as the individual care workers who provide it, and individual facilities are only as good as the on-site management teams that run them.

No system or place is one hundred percent infallible.

“We had no clue of his actions,” Loren Shook is reported to have said at the time of the former employee’s trial. “In every way he looked like the model caregiver. He had all the characteristics of a sociopath. No one can determine the problems until they see the trail left behind.”

This is indeed an issue. Abuse is usually perpetrated when there is little chance of it being observed, and colleagues who witness it by chance may be reluctant to report fellow workers for fear of reprisals.

Also in 2010, a resident was found in walk in refrigerator after having “gone missing” at a Silverado facility. Accidents like these become more likely when facilities stop using physical and chemical restraints. The risk, in my view, is worth the benefit of people being enlivened rather than diminished.

Perfection is impossible.

That doesn’t mean we should stop striving to achieve it.

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

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Take my short survey on behaviour here.

Care Partnering, Teepa Snow, Tips, tools & skills, Videos

7 dementia care basics from Teepa Snow

amazingsusan

Teepa Snow 7 care partner basics

When I began my journey as an Alzheimer’s dementia care partner, I knew nothing. If only I had known then what I know now. There are many more resources available than there were when I began caring for my mom full-time, and a whole new way of thinking about the disease and the people who live with it is emerging to empower us all.

Here are seven “how to get started” tips based on Teepa Snow‘s Positive Approach to Care:

1) Learn more about the disease

Learn what it’s going to do. Learn what it’s not going to do. Learn the basics. Dementia isn’t just about memory loss. The many forms of dementia are caused by brain changes that impact a person’s capacity to process information and do things. People living with dementia have different life skills. Their abilities change as the condition changes.

2) See it as a journey

Dementia is not static. Like life, it’s constantly evolving, changing, and morphing into something new. Smart people understand that it’s a “journey,” and it’s likely to be a fairly long one – think marathon, not sprint. You’re not just going away for the weekend, it’s more like moving to a new country.

3) Don’t be a Lone Ranger

It’s hard work being a care partner with someone who lives with dementia. It’s not a one-person job. It takes a team. Care partners need as much support as people living with dementia do. Ask for assistance. Seek resources. Put the oxygen on yourself first. Get an army of help. If family won’t help, find friends who will. If you don’t have friends who will, explore every other avenue you can. You can’t do it alone. Don’t try.

4) Learn “positive approach to care” skills

I know from experience this is one of the most important things. I self-taught myself as I went, but things would’ve been much easier if I knew then what I know now. In particular, the more you know how to deal with challenging behaviours in a positive and constructive way the less stressful and difficult your journey will be.

5) Become a care PARTNER

You will make lots of mistakes. That’s okay. But don’t keep doing something that doesn’t work over and over again and expect to get different results. If something doesn’t work, you need to change what you’re doing, because the person with dementia isn’t going to change their behaviour to fit your needs – you have to change to fit theirs!

6) Find resources

I highly recommend Teepa Snow’s videos many of which are available for free online and some of which may be purchased here. Likewise, Alzheimer’s non-profits around the world provide valuable information and support.

7) Learn the art of letting go

More about that here: the “G” in BANGS: five great ways to stop dimension anger, aggression and anxiety in their tracks.

MORE “QUICK AND EASY” PRACTICAL TEEPA TIPS

https://myalzheimersstory.com/2015/06/09/10-teepa-snow-videos-on-dementia-basics/

https://myalzheimersstory.com/2015/08/28/teepa-snow-demos-10-ways-to-calm-a-crisis-with-a-person-living-with-alzheimers-dementia/

5 top dementia care tips from Teepa Snow

13 expert tips to help with “I want to go home”

10 tips to deal with hallucinations

Hand Under Hand (TM) demo

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Take a short survey on behaviour here.

Teepa Snow’s videos are available on Amazon here.

Advocacy, Death & Dying, Life & Living

what if we treated babies like this?

amazingsusan

En français ici.

~~~~~~~~~~~~~~~~~~~~~

The way we care (or not) for our most vulnerable reflects who we are as people.

Let’s imagine you are a young mother who has just given birth to a frail baby girl, your first child. She’s seven weeks early and terribly sick.

“We’ve done everything we can,” the doctors say after a few days. “We’re so sorry. She has six, maybe eight weeks at most. There’s nothing we can do.”

You are torn to pieces. You want to be as close to her for as long as you can, your baby girl who is dying. You spend your days peering through the glass into the special care unit in which she lies next to others who have no hope. Once each day they let you in so you can touch your baby’s skin, and let her impossibly small fingers try to curl around one of yours. You feel her life force. You pour your love and energy into her like water from a pitcher into a fast-flowing stream. You are exhausted, depleted. But whatever you have left you give to her. You connect with her. You feel it. She feels it too. She is your flesh and blood.

When she is fourteen days old, you arrive to find they have taken her incubator away and she’s shivering with cold. You watch her–a wisp of life alone in a strange world she doesn’t understand–and you are enraged at the injustice. You speak more loudly than you had intended when you finally find a nurse.

“What are you doing? Where is my baby’s incubator? She’s cold!”

“There’s no point wasting money on keeping your baby warm in an incubator,” the nurse is matter of fact. “She’ll be dead in a few weeks anyway, and she doesn’t feel the cold. She doesn’t feel anything. Premature babies don’t have feelings.”

You know that’s not true. You feel her feeling, despite everything. When you hear her cry it rips you apart. You want to help her. You are her mother. But you swallow your protests to protect her from further harm. One day you notice her diaper is wet; it’s not the first time. It has soaked through to the dirty blanket on which she lies. You can’t change her yourself; it’s against the rules. If you step out of line they may not allow you to see your baby at all, even through the looking glass. So you find a nurse.

“My baby needs to be changed,” you say. “She’s wet and uncomfortable.”

“Oh,” the nurse smiles, “We just changed her four hours ago. She’s not scheduled to be changed for another four hours. And trust me, we know what’s best for her.”

But you can see they don’t. No, they don’t know what’s best at all. They only know what appears efficient, what is easy, what has always been done, or what someone has told them to do. It’s all about procedures, not people.

“But she’s wet now,” you can’t help yourself. “She needs to be changed now, not four hours from now.”

The nurse’s face becomes a mask. “We have a schedule. That’s how we do things.”

“What about a blanket? May I have a blanket for her?” You plead. You beg. She’s your baby.

“I’m sorry, we don’t have extra blankets,” the nurse says, her voice rising, her face tighter. “And she can’t tell the difference between clean and dirty or hot and cold anyway. No need to spend good money cleaning blankets for soon-to-be-dead babies.”

Your heart is in pieces. Your hands are tied. One day in the third week, half way to her deadline, you find your daughter limp as a rag doll. You think she might be gone. You rush to find a nurse.

“What happened to my baby?” Your voice quivers; you are on the edge of an abyss.

“Oh,” the nurse says, “She was crying too loud and disturbing the other dying babies. We gave her something to keep her quiet.”

Keep her quiet! Your mind screams. Keep her quiet? You want to shake that nurse until her bones rattle. Your words tumble out like pick up sticks.

“She’s a little baby who is dying. She’s cold and wet. She’s lying on a dirty blanket. Put her back in an incubator. Give her something clean and soft to lie on. Change her diaper so she’s dry and comfortable. She’ll stop crying lickety split.”

“I’m in charge of these soon-to-be-dead babies,” the nurse loses it. “I’ve seen more dying and dead babies than you can count, and I know what I’m talking about.”

“You don’t know my baby,” your voice is suddenly as calm and quiet as death itself. “My baby lived inside me seven months, one week, six hours, thirty-two minutes, forty-eight seconds and a million heartbeats. We shared my body, my blood, my breath. She is part of me. She is me. We are one and the same. I know her. I have seen her in my dreams. And I see her here now. You never felt her stir inside you. You didn’t birth her. You don’t know when she’s in pain.”

The nurse is unmoved. Two days later, your little girl dies. But not from the disease she lived with. From the cold, the wet and the neglect.

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

https://myalzheimersstory.com/2016/10/28/6-reasons-why-staff-in-long-term-care-facilities-dont-report-incidents-of-elder-abuse-and-neglect/

https://myalzheimersstory.com/2016/11/21/3-reasons-why-family-and-friends-of-people-who-live-with-dementia-in-long-term-care-facilities-dont-report-abuse-and-neglect/

https://myalzheimersstory.com/2016/11/23/3-more-reasons-family-and-friends-of-people-who-live-with-dementia-in-long-term-care-facilities-dont-report-abuse-and-neglect/

Take my short survey on behaviour here.

Image copyright: ondrooo / 123RF Stock Photo

Care Partnering, Challenges & Solutions, Tips, tools & skills

50 names not to call alzheimer’s me

amazingsusan

red flag to a bull cropped

“Calling me ‘dear’ is like a red flag to a bull,” I once said to a friend. “It makes me want to charge. It’s patronizing, condescending, and rude.”

It also rankles me when I hear elderly people who live with dementia being called pet names by others who could be their children or grandchildren. Maybe these folks think it’s sweet to call old people dearie and the like, but it’s not. It’s disrespectful at best, and dangerous at worst. It diminishes and demeans; it’s one of the myriad ways we rob the elderly of their dignity.

Take a look at this revealing 2008 NYT article, which says:

“…a team of researchers videotaped interactions in a nursing home between 20 residents and staff members. They found that when nurses used phrases like “good girl” or “How are we feeling?” patients were more aggressive and less cooperative or receptive to care. If addressed as infants, some showed their irritation by grimacing, screaming or refusing to do what staff members asked of them.”

And Karen Austin reports in Elderspeak: Babytalk Directed at Older Adults:

“Public health experts have found that when older adults are exposed to the patronizing language of elderspeak, their performance on tasks decreases and their rates of depression increase.  Other studies show that even people with moderate to severe dementia can tell when people are talking down to them, and it decreases their level of co-operation.” (Italics mine.)

It’s no wonder older people with dementia respond with anger and aggression. Anyone would. I can see myself behaving exactly the same way if and when I get Alzheimer’s disease and someone tells me it’s time to “wake up dear, get up dear, sit down dear, drink your juice dear, calm down dear, do this dear, don’t do that dear, give me that dear, that’s not yours dear, be quiet dear, go to sleep dear…. ” all the while patting me on the hand as if I were a child, which I won’t be when I’m 80, even if I have a brain disease.

“Stick in your ear dear!” I hear my future self snap. To lessen the possibility that I may be labeled violent and aggressive, and then medicated into submission, I’m laying some ground rules ahead of time. Here are 50 names I don’t like being called now (unless you’re my mother or lover), and will like even less when I’m old and living with dementia; use them at your peril:

  1. Angel
  2. Angel face
  3. Baby doll
  4. Baby cakes
  5. Buttercup
  6. Beautiful
  7. Beauty
  8. Cutie
  9. Cutie pie
  10. Darling
  11. Darlin’
  12. Dear
  13. Dear one
  14. Dearest
  15. Dearie
  16. Doll
  17. Duck
  18. Duckie
  19. Gorgeous
  20. Honey
  21. Honey bun
  22. Honey bunch
  23. Honey bunny
  24. Honey cakes
  25. Hun
  26. Love
  27. Love bear
  28. Love bug
  29. Lovely
  30. Lovey dovey
  31. Peaches
  32. Petal
  33. Pet
  34. Poops
  35. Poopsie
  36. Pumpkin
  37. Pussycat
  38. Precious
  39. Sugar
  40. Sugar pie
  41. Sugar plum
  42. Sugar puss
  43. Sweetie
  44. Sweetheart
  45. Sweetness
  46. Sweet pea
  47. Sweet cheeks
  48. Toots
  49. Tootsie
  50. Treasure

Prefacing any of these with “My” makes them even worse (e.g. My darling, My dear, My love, My precious, My duck, My pet, etc.). You may call me Susan. S-U-S-A-N. Susan. That’s my name. Not dear. Nor lovey. Nor sweetie. Nor Hun.

And by the way, don’t tell me what do either. Consider yourself warned. In a nice way. Sort of 😛

Take my short survey on behaviour here.

Care Partnering, Challenges & Solutions, Resources, Teepa Snow, Tips, tools & skills, Videos

20 expert tips for the driving dilemma conversation

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Two of the biggest among the multitude challenges facing many Alzheimer’s dementia care partners are:

  1. “I want to go home.”
  2. trying to get a person with dementia who can no longer drive safely to stop driving

This post is about how to get a loved one to give up their car keys. Why? Because we all want to avoid head-on collisions (and BANGS) both off and on the road.

Top tip #1:

DO NOT attempt the “driving conversation” on your own with a loved one living with dementia.

 Instead, do this:

  1.  Enlist the help of an “expert” outsider whom your loved one respects
  2. Ask the expert to watch the Teepa Snow video below BEFORE the conversation
  3. Give the expert the list of “Tips for Conducting the Driving Dilemma Conversation” (you can download the PDF at the link below the video)
  4. Do a practice role play with your expert (you act the part of your loved one)
  5. Identify pitfalls, develop responses to use with the tips below

Tips for the expert whom you will enlist to conduct the driving dilemma conversation (see disclaimer):

  1. Create a connection
  2. Use “hand under hand”
  3. Make eye contact
  4. Identify the issue
  5. Flag the emotion
  6. Acknowledge competence
  7. Ask questions
  8. Praise & agree
  9. Show you know what they value
  10. Understand their position
  11. Invite them to consider consequences
  12. Offer options
  13. Build self esteem
  14. Be respectful
  15. Be on their side (against common “enemies”)
  16. Accept and value their input
  17. Identify external threats
  18. Offer solutions
  19. Give support
  20. Be a partner

See how many of the 20 tips you can spot in Teepa’s video:

You must give all of this information (i.e. the tips and the video) to the “expert” BEFORE the conversation, because even experts need support to get the job done. Success depends on a team effort.

Key words/questions:

Could we try?

What do you think?

As Teepa suggests:

“Use what you know about their values and what is important to them to help them make hard choices.”

Download 20 Tips for the Driving Dilemma Conversation

Find more great tips here.

Good luck and let me know how it goes!

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Care Partnering, Challenges & Solutions, Resources, Tips, tools & skills

10 things to remember when you interact with people who forget

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Flo & Nico cropped logo

Many of the challenges of interacting with or being a care partner with someone who lives with dementia stem from our own behaviour and expectations.

Memory expert and author Dr. Bill Beckwith suggests 10 key things to keep in mind to help ease the stresses and reduce the anxiety levels of everyone involved:

1) People with dementia (PWD) are not lazy

Rather, many lack the initiative they may once have had. They may become apathetic and less likely to initiate activities or discussion than they previously did. They need environment and social interactions to encourage them to participate in activities and engage with others.

2) Memory loss is not intentional

PWD do not display “motivated forgetting.” They do not remember what they “want to” or “have to.” They do not have “selective memory loss.” They have no control over what they remember and what they forget, which may change from one minute to the next.

3) QTIP (Quit Taking It Personally)

Don’t take comments, anger, or lack of appreciation personally. Despite the fact that those with dementias may reflect your mood back to you or say offensive and hurtful things, they are not acting with deliberation. Besides memory loss, dementia is marked by poor judgment, a decline in the ability to think “logically,” and a tendency not to follow social conventions. Dementia produces a developmental shift to child-like behaviours and reasoning.

4) Inconsistency is the rule

Even as the disease progresses, PWD experience lucid moments as well as flashes of insight, and, while these moments become less frequent and less clear as decline progresses, they may occur until the very end.

5) Don’t challenge delusions or hallucinations

Arguing and/or using logic to counter false beliefs or perceptions (e.g. someone stole my car, there are strangers in the house), is a waste of time and energy. Most delusions and hallucinations are harmless and if not confronted will resolve if approached with compassion and distraction. Confrontation is likely to increase confusion, frustration, agitation; it may trigger anziety and/or aggression and result in PWD being unnecessarily medicated; that’s why it’s so important to never never argue.

6) Don’t try to force memory

Persons with memory loss forget that they forget. Repetition and reminders do not help recall as the disease progresses and the memory becomes more severely impaired. Trying to force recall or asking “Don’t you remember?” may elicit frustration, depression, or agitation. Don’t ask questions, make statements instead.

7) Stick with it!

Interactions with someone who lives with dementia can be uncomfortable. It’s tiring to constantly deal with repetition, lack of initiative, and self-focus. However, PWD need social interactions as much as the rest of us. In fact, they may need us to connect and engage with them more than ever. Don’t abandon those who live with dementia just because it’s the path of least resistance.

8) Be realistic

Don’t hold onto false hope that PWD will improve. Dementia is irreversible and often progressive. Current medications may slow the rate of decline but they do not reverse or stop the deterioration of brain cells. On the other hand, don’t give up on someone who has dementia. Opportunities for growth, healing and beautiful life experiences remain for all of us until we finally die. Take advantage of what skills remain.

9) Don’t compare

Although there are similarities among individuals with dementia, there are a multitude of individual differences as well. Not everyone becomes incontinent, aggressive, unmanageable, subject to sundowning, or forgets who loved ones are. People are unique. People with dementia are also unique – they are still people!

10) Go with the flow

Those with severe memory loss live in the moment – they may not recall the recent past or be able to anticipate what comes next. The environment and people around them must draw them in and simplify their interactions with the world. More about going with the flow here.

Besides these 10 important things to remember, it’s also vital for caregivers not to forget their own needs.

Bill BeckwithDr. Bill Beckwith is a professional psychologist and speaker. He has his MA in experimental psychology and a Ph.D. in clinical psychology; he was a university professor for 12 years. He earned many teaching awards and developed a memory disorders clinic and a center for excellence in memory care. He has completed more than 3,000 memory evaluations, and is the author of Managing Your Memory. 

https://myalzheimersstory.com/2016/05/05/6-ways-to-create-better-dementia-care-relationships/

More great tips here.

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