At some point in most dementia care partners’ experience they will find themselves on this battleground: wishing for their loved one the peace that comes with death, while feeling immense grief at the prospect of losing them. The resulting mix of emotions — compassion, guilt, longing, regret, sorrow and more — is exceedingly difficult to cope with.
This poem is about the heart-wrenching conversations one has with self and the powers that be at those times. It’s the second version of a poem i called “a daughter’s prayer to god,” which I first wrote in 2014, after Mom came “this close” to dying.
I’ve shared parts of this story before. It’s an afternoon in October 2015. Mom appears to be asleep in the recliner when I arrive at the LTCF to visit. 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 she’s unhappy. I also know exactly what to do to minimize the likelihood of things deteriorating further. In the space of about an hour and a half, I created conditions under which Mom and I could move from bad to good instead of from bad to worse. There’s nothing magic about what I did, anyone can do it.
I thought it might help others to be able to hear our real-life conversation and the transformation we effected together. The five-minute audio below is divided into three segments. The first one is when I arrive to visit Mom; the second is about an hour later when her mood is shifting; and in the last segment we’ve gone all the way from sad to glad.
From sad to glad: an example of BANGS in action
Click here to listen (I highly recommend listening while reading to fully “get it”):
Read here:
Susan: We were both talking about nothing
Mom: Well that’s stupid.
Susan: That was stupid. (laughs) That was stupid, Mom.
(Susan turns down the loud music, which may have been contributing to Mom’s angry demeanour)
Susan: Pardon me?
Mom: You don’t lalalalala look stupid things.
Susan: I’m a silly Billy eh mom?
Mom: Yeah, and you’re stupid.
Susan: Am I? What have you got on your face here? It’s cake. (laughs) I’m happy to see you.
Mom: Well I’m not happy to see you.
Susan: No?
Mom: No. I’m not happy at all.
Susan: Are you mad at me?
Mom: Yeah, I am mad at you. Very mad.
Susan: Are you?
Mom: Yeah.
Susan: What have done?
Mom: Well it’s stupid.
Susan: I did a stupid thing?
Mom: Yeah.
Susan: Oh. Sorry about that.
Mom: Yeah, well it is stupid.
Susan: I didn’t mean it. I didn’t mean it. Is there anything I can do to fix it?
Mom: Well no, there’s nothing I can do to fix it. (Mom starts to “tap” Susan quite hard)
Susan: Oh god, you just whacked me. (The taps get lighter) Are those love taps or mad taps?
Mom: Mad taps.
Susan: Okay. Well at least they’re not very hard.
Mom: What do you mean hard?
Susan: Oh my goodness.
Mom: That’s awful thing to do.
Susan: I don’t know what I did, but whatever it is, I’m sorry I did it.
Mom: Well why did you do whatever stupid it was?
Susan: I don’t know. I made a mistake. I’m sorry.
Mom: Well, it’s sort of stupid that you didn’t –
Susan: I know I admit it. I admit it. I was stupid. I know. I don’t know why I did it Mom. It was a mistake. Is there anything I can do to fix it?
Mom: No!
Susan: Oh. Okay. Because if there was something, I would do it.
Mom: Yeah.
Susan: Yeah that’s what happened. Sorry about that. But maybe it’ll fade over time.
Mom: Well I don’t think so.
Susan: No? Okay. Is it okay if I sit here with you for awhile? How about if we do your nails?
Mom: Well, the nails are beautiful.
Susan: Well, they could be redone I think. Shall I redo them for you?
Mom: Na na na na no I don’t want to.
(About an hour later:)
Susan: Those are nice taps.
Mom: Yeah.
Susan: Are those love taps?
Mom: Yeah, they are nice taps.
Susan: Before you were giving me mad taps. You were mad at me before Mom.
Mom: Mad at you when?
Susan: About an hour ago.
Mom: Oh well, so what.
Susan: (laughs) That’s what I said Mom – so what? It’s okay. You have a right to be mad when you wanna, Mom.
Mom: Yeah, I guess I better.
Susan: Yeah. Life is short. Do what you want.
Mom: Yeah.
Susan: Eh?
Mom: I guess.
Susan: Yep. That’s right.
(About another half hour later:)
Susan: And then we sang “Mary had a little lamb, little lamb, little lamb…
Together: it’s fleece was white as snow…etc.
Susan: I like that nursery rhyme, it’s cute.
Mom: Well, it was a nice story.
Susan: Yeah it was a nice story, Mom. How about baa, baa..
Together: Baa baa black sheep, have you any wool…
This approach worked wonders for me on many occasions. That’s not to say it always worked, because, just as we all do, Mom had days when she was just plain unhappy — who wouldn’t have been in her circumstances? No one is happy all the time — or at least no one I know, including myself! The point is, this way of engaging someone living with dementia has a much better chance of working than arguing, correcting, and dismissing. Try it and see for yourself.
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In spring 2016 I gave a webinar entitled “How to become a better dementia care detective” in partnership with a former associate. This post summarizes what we discussed in that webinar. I’ve removed the case study and poll questions that were part of the full one-hour webinar, and created a 23-minute version that explains five of the 10 ways I recommend to get to the bottom of behaviour and problematic situations in dementia care both at home and in institutional environments.
Here it is (apologies for the less-than-stellar visual quality, but the audio is fine. Also, see below the video for summaries of the tips and the bottom of the post for links to things mentioned in the clip, AND you can answer the same questions I asked in the polls at this link):
Human beings tend not to be reliable witnesses, as courts have proven time after time. One of the most reliable witnesses is a CCTV camera, and I feel strongly that all long-term care facilities should be fitted with CCTV throughout public and private areas.However, at the moment, most facilities are not so equipped, and neither are most private homes, which means we must rely on people. All of that being said, I think it’s important to not dismiss the testimony of people who live with dementia as they are the most reliable witnesses of their own experience despite the impacts of their disease. Watch the video above for a GREAT real-life story.
3) Ask questions (5Ws & some Hs)
When looking at specific situations, it’s helpful to use the five “Ws” that detectives and journalists ask: who, what, when, where, and why. In the case of situations involving people living with dementia , the “why question” is probably the most important, and yet the one that is least asked because people make the assumption that the behaviour is caused by the disease when most often it’s not (see 1) above). After the five W’s, gather more information by asking a bunch of “how” questions such as: how much, how often, how long, how many, etc.
4) Re-create the “crime scene”
Do what any good detective would do, and walk through what has happened with the players or substitute players step by step in the environment in which the situation occurred. See if you can find in the sequence potential causes for what’s happened. Try to look at it from the point of view of the person is living with dementia rather than from your own perspective.
5) Use your senses
Experience the situation, again from the perspective of the person his living with dementia, using your five senses: sight, sound, touch, smell, taste. For example, were the lights too bright? Or too dim? Were there bells ringing? Alarms sounding? Loud bangs? TVs playing violent content? Sound and noise are important factors to consider. Is it or was that too hot or too cold? Was there in the noxious smell and the environment such as bleach or other cleaning material? Did the food or water taste bad? Is the medication bitter?
Here are the five additional ways I didn’t cover in the video, with short explanations and links:
6) Ask more questions
In addition to 3) above, keep probing, particularly drilling down using “why” until you get down to the root cause. From a global perspective, here are questions I’ve developed to help me better understand what may be going on. You might find them helpful too:
This can be extremely difficult. One of the hardest things is to let go of our assumptions (see 1) above) , and listen objectively. But it’s also critically important. Try not to be judgmental, particularly with respect to what the person living with dementia says or does. Step back. Be self-aware. I used audio and video recording to help me. I watched and listened to myself to check voice tone and body language so I could hear and see what I was doing well and where I could improve. Listen with the same critical ear to others’ versions of events.
8) Re-examine the “facts”
Don’t take what you have been told, or even what you observed yourself at face value. Ask yourself if the “fact” really is a fact, or is it an “alternative fact,” or even a lie. What evidence is there to back up the facts? If there is no evidence, can you source any? If not, it may be best reconsider how much weight you give to that particular piece of information.
9) Consider motives
Ask yourself what is driving behaviour – not just that of the person who lives with dementia but also of those reporting the behaviour of the person who lives with dementia. Did the care worker say she had changed the client’s brief when in fact she hadn’t? Who benefits most when someone is sedated rather than engaged with life through activities and socializing?
10) Look outside the box
Keep an open mind. Consider all possibilities and remember that reality is sometimes stranger than fiction. Sometimes the thing that appears to walk and talk like a talk is actually a swan in disguise.
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I knew less than zero about dementia care when I returned to Canada from Dubai in 2011 to care for my mom who lived with dementia of the Alzheimer’s type. I learned a lot in a short time; I learned even more in the five years leading up to her death on August 17, 2016, and I’m STILL learning.
One of the most challenging aspects of care partnering is creating and maintaining a positive relationship between care partners – the one living with dementia and the one (or several) who help him or her to navigate living with the disease. Things can get tense and stressful and sometimes they spiral out of control.
Based on my personal experience with my mom, I developed a model to help myself and others minimize anger and aggression and thus reduce stress. I call it BANGS, which is a mnemonic for ways to defuse conflict with people who are in the early, mid and even later stages of dementia of the Alzheimer’s type.
The one-hour webinar below, which was made during a live online event in spring 2015 when Mom was still alive, explains the BANGS model using personal stories and examples. It show what kinds of things may spark aggression in someone who lives with dementia of the Alzheimer type, and what care partners can do to avert it.
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These five links will take you to short excerpts from the video; they home in on each of the five techniques with one to three minute clips and short examples:
I hope you enjoy the webinar, which I invite you to share with colleagues, care partners, care workers and/or to use as a training tool. I also deliver interactive half-day, full-day and two-day workshops on the BANGS(TM) model. Contact me here. And if you want BANGS cards like the ones in the video, contact me here.
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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.
“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.
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.
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.
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Purple/pink Gerbera daisies enjoying spring by a window
Dementia care partnering involves ample give-and-take, and even more important, a lot of letting go.
The more the care partner who does not have dementia can free themselves of unproductive thoughts, feelings and behaviours the easier it is on everybody. We must be sensitive to the fact that the capacity of a person with dementia to use logic, reason, and common sense may decline as the disease progresses. That doesn’t mean their humanity diminishes or that they become any less a person. It simply means their abilities differ from ours. It’s up to us to adjust our behaviour to fit theirs to reduce stress and anxiety, as well as to enhance communication, connection and well-being.
I belong to about a dozen great Facebook dementia caregiver support groups. Cheryl Morris Siciliano, one of the members of “Memory people” posted a list of the things she had let go of in the process of caring for her parent who has Alzheimer’s disease. Her “no longers” generated hundreds of comments from people who agreed with the importance of letting go of stuff that isn’t useful.
Here’s Siciliano’s list:
I no longer have to be right about anything
I no longer insist on matching clothes
I no longer try to explain everything
I no longer cry in front of Mom
I no longer correct her
I no longer apologize for her actions
I no longer mention outings or parties more than a day in advance
I no longer think I am the only one in this battle
I no longer get mad or frustrated
I no longer try to control her spending
I no longer question
I no longer feel guilty
I no longer feel bad about the past
I no longer fear her
I am no longer uptight
.Others added:
I no longer feel the need to be truthful about the loved ones who have passed on
I no longer care about what others think or say
I would tack these on:
I no longer feel bad if s/he says hurtful things to me
I no longer wish s/he were someone other than who s/he is
Do you care for someone with dementia? Or have you in the past? What do/did you no longer do to make your life and the life of your care partner more joyful and less stressful?
My Alzheimer's Story 