Category: Tips, tools & skills

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 😛

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

20 expert tips for the driving dilemma conversation

amazingsusan

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

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

amazingsusan

Teepa 13 home tips pic painterly

One of the greatest challenges dementia care partners face is “I want to go home.”

People with dementia often “want to go home,” even when they are in a place they may have lived for years.

It’s frustrating for the person with dementia who is convinced he or she needs to be somewhere else. It’s also frustrating for the care partner who doesn’t have dementia because there seems to be no way to solve the problem.

We would gladly take people with dementia “home” if only we could. Sadly, we can’t because the place they want to go exists only in the reality of their minds.

But we CAN:

  1. find creative ways to deal with these situations when they arise
  2. employ strategies that reduce the stress, anxiety and pain of the “going home” problem.

Here are 13 tips that will help defuse “I want to go home” (see disclaimer):

  1. Don’t argue
  2. Try something different
  3. Agree and validate
  4. Say you’re sorry
  5. Build self-esteem
  6. Offer incentives
  7. Create collaboration
  8. Give reasons to be “here”
  9. Remember: we are the same
  10. Remember: their filter is gone
  11. Remember: value and purpose
  12. Think! How can you work together?
  13. Role play and practice

In the video below, dementia care pioneer Teepa Snow teaches a care worker a better way of handling “I want to go home” (the demo starts at about 1:15 and finishes at about 7:00):

There are more great tips here. And this is how I imagine it might feel for a person living with dementia in a long-term care facility as they experience wanting to go home.

https://myalzheimersstory.com/2015/04/19/20-questions-that-help-explain-why-people-with-dementia-get-agitated-and-physically-aggressive/

https://myalzheimersstory.com/2017/11/25/101-potential-causes-of-behaviours-by-people-living-with-dementia-that-institutional-care-staff-may-find-challenging/

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Challenges & Solutions, Family, Life & Living, Tips, tools & skills

what to say to family members who ‘can’t bear to see mom or dad this way’

amazingsusan

family 4 people

The comment wasn’t a comment, it was a plea:

“Please help me with the ‘right’ words to say to my sister,” Nancy wrote. “She won’t visit our dad or help in his care because she says she just can’t bear to see him this way and she wants to remember him how he was.”

Countless care partners find themselves in the same situation as Nancy. It’s frustrating, painful, and stressful when you don’t getting the support you need from others. But we can’t control their thoughts and actions.

My reply to Nancy came from the heart. I responded:

Everyone deals with the changes dementia produces in someone they love in different ways. Some people really can’t bear to see other people change, whatever the changes might be; some people want things to remain the same even when that’s impossible. Some people cannot abide suffering. I understand that–having to watch loved ones suffer is torture for me. On the other hand, some people don’t have an empathetic, sympathetic, or compassionate bone in their bodies. I’ve experienced the tragedy of that firsthand. So have thousands of other care partners. The only person we have control over is ourself, and sometimes we feel we don’t even have that.

If I found myself in this situation, I might try something like this:

“I understand how you feel. It’s really hard to watch Dad decline and not be able to do the things he used to do, or to relate to me in the same way he used to. I feel sad Dad is ill. Really sad. But I have found a way to see him as he is now from a new perspective. Not as someone less than who he used to be, but as someone different than he was in the past.

I still see his core and spirit, which to me remain the same. I’m happy and grateful I can still connect with him and keep him company at this time when I believe he really needs me. I think about what he would do if I were sick, or facing a challenge, or whatever. And even though it’s hard, I want to hold his hand because I think it’s the right thing to do and because I love him. I think about what I would want if I were in his place and I try to do things I believe will bring him pleasure and joy.

I understand you don’t feel the same way I do, and for you it’s too painful. My wish would be that you would try to see him in a different way, as the person he used to be and still is at the core of his being. But I understand if you’re not able to do that. Just because I wish it, doesn’t mean it will be so.

I remember Dad as a vital, engaged, dynamic person full of passion and energy. And I still se those qualities in him despite this disease. I want to celebrate who he is right now as well as the person he was yesterday, last year, 10 years ago and even further back.

I don’t believe this disease can take away who Dad is. I value him as he is, just as I also cherish the memories of who he was and the relationship we had. I don’t believe Dad will be gone until he dies. I understand it may be too painful for you and I’m sorry for your pain.”

That’s what I would truly feel in my heart, and that’s what I would say. I believe we have to  speak our truth, and then detach from the outcome, all of which is easier said than done.

“That’s my truth, Nancy,” I answered. “You have to find your own. When you do and when you speak it, you will be free to joyfully do what you must  for your dad and you won’t waste energy trying to force your sister to behave in the way you think she should. What is right for you may not be right for her.”

 I closed with a qualifying note: “It’s a whole other kettle of fish if your sister has legal responsibility for your dad and is neglecting his care in some way. If that were the case, a completely different course of action would be required.”

All of this said, an equally valid and necessary response in these and other situations when all the right things have been tried and failed might be to tell siblings, family members and others to “Stick it!”, forget about them and move on.

You gotta do what you gotta do.

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Humour, Life & Living, Tips, tools & skills

laughing babies better than any pill ever invented, cure for virtually everything

amazingsusan

laughing baby 8

“That’s the best idea yet!” I congratulated my cousin Liane.

“I KNOW!” She answered with a smile I could hear. “Who can resist laughing babies?”

“Not even me,” I LOL-ed.

Fifty-year-old Liane, a former nurse, care partners with her 80-year-old friend Florence who was recently diagnosed with dementia. Liane helped Florence move into an assisted living facility across from a long-term care home where the pair now volunteer for an hour or two each afternoon.

“Florence loves to be active. And she’s very social. So she and I were serving tea – having tea is one of the highlights of the day, you know.”

“I know,” I said. “There’s not much to do in those places. Everyone’s bored to tears.”

“Yeah,” she agreed. “Anyway, I had just given a cup of tea to one particular lady who always seems to be unhappy. She’s kind of grouchy and mean. Never smiles. Always complains.”

I’d probably be unhappy too, I reflected to myself. We need to do a better job of caring for the elderly, especially those with dementia. They deserve better than what they’re getting.

“All of all of a sudden I got this brain wave,” Liane continued. “I fished my iPad out of my bag, got on to YouTube, and found a video of laughing babies. Well. You can’t imagine the reaction of that cranky old lady. Within seconds she was smiling and laughing and pointing at the babies. It was great.”

“That’s BRILLIANT Liane. I wish I’d thought of it.”

“The next day, I put laughing babies on the big screen they have in the common room. All the ladies and even the few men that were there were over the moon. ‘Isn’t she cute?’ One said. ‘Look at that one,’ another said. They were smiling and cooing and oohing and ahhhing. Laughing babies. Best cure ever. Who knew?”

My Alzheimer’s Story prescribes joyful activities to create happiness in the lives of people with dementia.

Rx Laughing Babies

Better than any pill ever invented for immediate relief of boredom, depression, anger, anxiety, aggression, aches, pains, and overall malaise associated with life, aging, dementia, and most everything that might ail you or your loved ones.

Dosage:

Enjoy five minutes of laughing babies anytime day or night; before, after or with meals.

Proven results:

Mood improvement, better attitude, smiles, laughter, joy, happiness, connection, engagement, love.

Notes:

Impossible to overdose. No known negative side effects. No contraindications. Efficient; effective; costs virtually nothing.

Complementary therapies include:

Playful puppies, cats and kittens, jumping kids (too cute for words), and ballet dancing children.

https://myalzheimersstory.com/2018/03/15/turn-potential-dementia-disasters-into-fun-and-laughter/

https://myalzheimersstory.com/2019/05/07/care-partner-humour-milkin-it/

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

i’m sorry is hard, but it may also be the most powerful part of BANGS

amazingsusan

sorry-w-mas-logo

 

It’s an afternoon in October 2015. Mom appears to be asleep in the recliner. I lean over and put my hands on either side of the chair. My face is about arms length from hers.

“Patti?” I say to check if she’s really sleeping or just resting.

When she opens her eyes, I know immediately things won’t be easy today. But I have a proven five-pronged strategy to help: BANGS.

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

BANGS is a mnemonic for ways to defuse conflict with people like Mom who live with Alzheimer’s / dementia.

  1. “B” is for breathe;
  2. “A” is for assess, accept and agree;
  3. “N” reminds us to never argue
  4. “G” is for go with the flow, let go of your ego, get on with it and get over it.
  5. “S” is for say you’re sorry

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

“Wa wa wa wh what are you talking about?” Mom says before I have a chance to say anything at all.

“I was talking about nothing,” I say agreeably.

“I didn’t think you were talking about nothing because I was talking about nothing,” she says, sharp.

“We were both talking about nothing,” I chuckle.

“Well that’s stupid!” She spits at me, face taut, eyes blazing.

“It was stupid, Mom,” I laugh again. I’m delighted she’s awake, which she mostly is not when I come to visit. “I’m a silly billy eh Mom? What’s that on your face Mom? It looks like cake.” I smile. She glares back. “I’m happy to see you Mom,” I say.

“Well I’m not happy to see you.” Mom’s face is a storm cloud.

“You’re not?”

“No. You’re stupid.”

“Are you mad at me Mom?”

“Yeah.”

“What have I done?”

“Well, it’s stupid.” I have no idea what stupid thing she might be talking about, or what she believes I have done, but I know what to do.

“I did a stupid thing?” I say.

“Yeah.”

“I’m sorry Mom. Is there anything I can do to fix it?”

“No. You can’t fix it.”

“I’m sorry Mom.” I genuinely AM sorry. I really wish I could fix it. In no way am I pretending or fibbing. She lifts her right hand hand and starts tapping my cheek like she does when she gives me “love taps,” but harder. It stings ever so slightly, but doesn’t hurt at all. It’s a more intense version of the love taps she adores giving. She is a wheelchair-bound 87-year-old woman living with dementia. She can’t hurt me.

“Sorry. Sorry. What difference does that make? It was stupid,” she says as she keeps “slapping/tapping” me.

“I know Mom. I’m sorry. Are these love taps or mad taps?”

“Mad taps. Mad taps.” She taps faster, grits her teeth. I don’t care that she’s tapping/slapping me; it helps release whatever is bothering her. No harm done. Once she gets up, out of the recliner, and rolling in the wheelchair, her mood gradually improves. Mom loves to be on the go. It takes about 45 minutes and a whole lot more ‘I’m sorry’s’ to get rid of the crankiness, but that’s okay with me, we all have bad days – why should she be any different? The thing about “I’m sorry” is that it’s hard for anyone, even someone with dementia, to stay angry at somebody who keeps apologizing.

See the 7 tips on saying I’m sorry from Teepa and me here.

If you don’t want to end up in a “shoot-out” with a person living with dementia, use BANGS to get through the rough patch and onto higher ground.

Remember:

  1. “B” is for breathe.
  2. “A” is for assess, accept, and agree.
  3. “N” is for never, never argue
  4. “G” is for go with the flow, let go of your ego, get on with it and get over it.
  5. “S” is for say you’re sorry

See also: Teepa Snow demos 10 ways to calm a crisis with a person with dementia

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Challenges & Solutions, Resources, Tips, tools & skills

is your dementia glass half empty or half full?

amazingsusan

Glass half full

“This time next year she won’t remember me,” I thought in the autumn of 2011 when I abandoned my life as an expatriate businesswoman in Dubai to come back to rural Canada to care for my Mom who lived with dementia of the Alzheimer’s type.

After a year she would be placed in a facility where they would take better of her than I could (at least that’s what I imagined), and I’d leave to restart my life somewhere else. That plan was based on what I knew about dementia and dementia care at the time, which was next to nil.

Like most people, I saw Alzheimer disease and other dementias as a terrible tragedy in which those who live with dementia are on a journey that is nothing more than a long slow, tortuous train through hell – a journey in which they are robbed of their very selves as they disappear into a black hole of oblivion. I was mistaken in those beliefs. Today, based on my experience with people who live with dementia, I see the disease and those who have it in a completely different light.

But I was right about one thing. On November 16, 2012, a little over a year after I came back to Canada from Dubai, Mom was placed in a long-term care facility. Once I saw the reality of institutional care, I again abandoned my own life plan to stay close by her side and be her advocate.

To say that my advocacy was not well received would be an understatement of gargantuan proportions. It took another year before I understood some of the fundamental reasons why the powers that be and I were at such serious odds. The roots of the conflict around my mother’s care lay in perspective, power and control. On the issue of perspective, this chart, from Dr. G. Allen Power’s book “Dementia Beyond Drugs: Changing the Culture of Care,” captures the essence of where experience took me:

Biomedical vs Experiential models of dementia

When I first read down the right-hand column I found myself nodding in agreement on every point.

My dementia glass is half full. I am 100% sure, based on my own experience, that people with dementia still have great potential for life and growth, they can still learn, and their responsive behaviours are attempts to cope, problem solve and communicate their needs. This is no theory. I know it to be true because I’ve experienced it first hand.

As a result, I am completely convinced that individualized, person-centered living that engages people who live with dementia is critical to their well being. Positive approach to dementia care advocates worldwide share my view; research supports our position.

On the other hand, I suspect that many institutions and people in the medical profession still subscribe to biomedical model that leads to the high use of medications (particularly antipsychotics such Risperdal and Seroquel), and produces needless suffering and decreased well being.

The biomedical model is outdated and out of step with the reality and the needs of people living with dementia as well as their care partners.

It’s time for a change. People living with dementia deserve better. So do the people who walk with them.

Download a pdf of the models chart here.

https://myalzheimersstory.com/2017/05/28/10-pieces-of-wisdom-from-dr-allen-power-dementia-beyond-disease/

https://myalzheimersstory.com/2018/05/19/we-need-a-paradigm-shift/

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

Teepa Snow demos 10 ways to calm a crisis with a person living with Alzheimer’s / dementia

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Teepa Snow calms crisis no video

When people feel trapped and terrified, they get agitated, anxious, and sometimes aggressive. It’s normal behaviour for human beings to lash out when they feel threatened, whether they have dementia or not.

Unfortunately, many people who care for people living with dementia (PLWD), including family, friends, healthcare personnel and caregivers, blame this normal behaviour on the disease rather than finding and addressing the real underlying causes.

More often than not, something in the environment or in the way the person with dementia is being treated or approached prompts the aggressive behaviour, which is in fact a perfectly normal response to something the PLWD may perceive as a threat of some kind.

In the video below, dementia care pioneer Teepa Snow tells the story of de-escalating a situation in which an 89-year-old woman with dementia became violent when care facility staff and EMS personnel tried to get her onto a gurney.

I have personally gone through similar events. At the time, I had no idea what to do. I have since seen others in versions of the same scenario; it’s clear they either don’t know what to do or if they do know what to do they aren’t doing it.

 

Instead of blaming the PWLD and the disease and then “drugging them up” as Snow says in the video, we need to learn how to:

1) prevent crises from happening in the first place

2) de-escalate if and when they occur despite our best efforts

Here are 10 techniques anybody can use to calm a crisis in which a PLWD becomes distressed and/or aggressive (see disclaimer):

  1. Remove the threat
  2. Create space
  3. Get on her/his side
  4. Get at or below eye level
  5. Use Hand Under Hand™
  6. Breathe in sync
  7. Calm your voice
  8. Relax your body
  9. Attend to her/his needs
  10. Be willing to go where he/she is

Learn how to put the tips into practice by watching this five-minute video with Teepa Snow:

More here:

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

https://myalzheimersstory.com/2016/12/08/5-surefire-ways-to-stop-anger-and-aggression-in-people-who-live-with-alzheimers-disease-in-the-mid-and-later-stages/

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

the “G” in BANGS: 5 great ways to stop dementia anger, aggression and anxiety in their tracks

amazingsusan

Before I lived with and cared for someone with dementia, she and I had both lived alone  – I for six years and she for about 20.

All of a sudden we were together in close quarters: two fiercely independent women each of whom had run her own business for several decades, each with a mind of her own, each accustomed to doing what she wanted when she wanted and not having to accommodate anyone but herself, each very much her own person.

Plus, one of us had a brain disease about which the other new little.

It was a miracle we didn’t kill each other. But we didn’t. We found a way to get out of conflict and on to safer ground. It wasn’t easy, and I hope the tips below will help you to do the same…

BANGS is an acronym for five ways I wish I hadn’t had to learn from experience about how to defuse conflict with people who live with Alzheimer’s / dementia.

“B” is for breathe.

“A” is for assess, accept, and agree.

“N” is for never, never argue

“G” is for let go

“S” is for say you’re sorry

In the bangs webinar I talked about “G” standing for two things:

  • go with their flow,
  • let go of your ego

1) Go with their flow

Most of us are accustomed to doing things according to schedule(s). We have agendas, literal, figurative, and physical.

We create lists of things to do and time frames within which we must do them. Alzheimer’s/dementia taught me that agendas, schedules and lists are artificial. We create them and we think we need to stick to them when in reality we don’t.

The quickest way to conflict with a person with dementia (PWD) is to try to force them to fit your agenda. In fact, if you think about it, mostly everybody wants to do what they want, not what others want them to do. Why would PWD be any different?

Conversely, the easiest way to create peace and harmony is to let go of your agenda and let the PWD run with theirs, however strange and uncomfortable it may seem to you.

2) Let go of your ego

Tough. Extremely tough to do — especially for family members. Your loved one with dementia might say horrible and hurtful things to you. Not out of malice, but because their brain isn’t functioning properly.

For example, parents with dementia often vehemently tell their children they don’t have children. Some call their children stupid or idiots or worse. they may say you are mean to them or abusive. They may chastise you for not calling when you live in the same house 24 seven and have done for years! That’s the disease talking.  They may be be mean to when you try to help Them. They may chastise you for all kinds of things you may or may not have done.

Rather than allow yourself to be devastated, try choosing something different. Learn to let go of your ego, and to not be hurt by their hurtful words. It makes things easier. Not easy. Easier. Every little bit counts.

Besides everything else I talked about in the webinar, here are three “bonus” ideas to add to the “G” in BANGS: get over it, get on with it and get down to it.

3) Get over it

This is an extension of letting go of your ego: when you let go, let go completely. Don’t harbour any resentment. Don’t seek revenge for the way you may have been treated. Don’t bully. Get over it. If you don’t get this one, The Eagles explain it more fully here.

This is a hard pill to swallow when you feel like the wounded party, but believe me, it works.

4) Get on with it

Self explanatory I think: keep going. Don’t let the disease get the best of you.

5) Get down to it

By this I mean get down physically so you are at or below eye level of the person with dementia.

Let them have the power position above you to make communication easier and less threatening. This works a treat.

Teepa Snow demonstrates getting down and “hand under hand” here.

Don’t want to end up in a “shoot-out” with a PWD? Use BANGS.

Remember:

“B” is for breathe.

“A” is for assess, accept, and agree.

“N” is for never, never argue

“G” is for let go

“S” is for say you’re sorry

See also: Teepa Snow demos 10 ways to calm a crisis with a person with dementia

And: 10 ways to use improv to improve life with Alzheimer’s (more about “going with the flow” as well as a live demo of what it looks like).

https://myalzheimersstory.com/2015/06/18/b-is-for-breathe-in-bangs/

https://myalzheimersstory.com/2015/07/19/the-triple-a-in-bangs/

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