conflict – My Alzheimer's Story

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.

One way is using the BANGS model I developed to help care partners and care workers effectively engage people who are living with dementia. Here’s what I did: 1) took several deep breaths 2) assessed, accepted and agreed, 3) didn’t argue or correct, 4) went with Mom’s flow, and 5) said I was sorry (a lot!).

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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Care Partnering, Interviews, Tips, tools & skills

alzheimer’s speaks’ lori la bey and i agree on the beauty of dementia

August 11, 2017July 12, 2019 My Alzheimer's Story

It’s hard for many people to believe any good can come from dementia, but those of us who have experienced transformation during the process of being a care partner to someone who lives with dementia know it to be true, and are immensely grateful for the rare gift we’ve received.

Fellow advocate Lori La Bey and I both experienced a kind of spiritual awakening during our time as care partners to our mothers. We touched on what that deep connection felt like to us when I was a guest on her popular online show AlzheimersSpeaksRadio.

Here’s a two-minute clip related to that part of our conversation:

During the hour-long show, we also talked about family dynamics, antipsychotic medications, transforming perspectives, and my BANGS model to help stop anxiety and aggression (watch the free BANGS webinar here).

Listen to the full show here.

More AlzheimersSpeaksRadio here, and more on Lori and her work here.

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Care Partnering, Family, Real life

daughters, dementia and drugs: finding good on the road to forgiveness

April 28, 2017 My Alzheimer's Story

Lisa had seen the face of Alzheimer disease before. But she hadn’t expected her mom Clare to get it, and certainly not at such a young age.

When I read Lisa’s Facebook account of her care partnering struggles, particularly with respect to the conflicts around medicating Clare with antipsychotic drugs, it resonated deeply with me. I asked Lisa if I might share what she had written on MyAlzheimersStory.com. She generously agreed.

Here’s Lisa and Clare’s story as told by Lisa:

My mom died of Alzheimer disease in 2016. Sometimes, I still find myself trying to accept she’s really gone.

Mom was diagnosed in 2008, at age 62. The signs were there earlier; we just didn’t recognize them. My dad did the best he could to take care of Mom, whom he loved with all his heart for 51 years. But he also did many things I didn’t agree with along the way. My father was “in charge” of Mom’s care. That’s the way it was. The decisions were his to make, and my mom’s and mine to live with. It wasn’t easy.

Dad allowed doctors to put Mom on more drugs than I can name. At various times, sometimes at the same time, she was taking Depakote and Lamictal (for suspected seizures), Seroquel and Ativan (for anxiety), Haldol (for hallucinations), Imdoor and Ranexa (for her heart), and Aspirin (also for her heart). This seemed to me an insane amount of medication. Some are contraindicated when taken together. Some, such as Seroquel and Haldol are “black boxed” for elderly people who live with dementia.

Dad placed Mom in assisted living, and later a nursing home. When I offered different options, he said no. My dad loved my mom; he believed he was doing the right thing. I loved her too, and over and over I saw what the wrong meds and/or the wrong doses could do.

In the summer of 2015, for example, the director at the assisted living told Dad that Mom was “very anxious.” As a result, Dad allowed Mom’s neurologist to double the dose of Seroquel she was on. Mom’s demeanour changed almost overnight, and not for the better: she started banging on other residents’ doors and screaming blue murder. My mother was the kindest, calmest person you could ever meet. That was NOT my mom.

She also fell twice, and was sent to hospital. No one saw her fall and therefore the cause of her falls was not known. Nevertheless, a neurologist put her on Depakote and Lamictal to stop seizures she may or may not have been having. The neurologist was well respected–chief of neurology at one of the best hospitals in the state. But he was wrong to put my mother on those drugs.

When the assisted living facility refused to keep her because of the aggressive behaviour, which seemed to me to be so obviously caused by the Seroquel, Dad placed her in a psychiatric facility for several months in the fall of 2015. The psychiatrists there confirmed what I instinctively knew: she was over medicated. As they weaned her off the antipsychotics, she improved dramatically. Once “detoxed,” she was fine.

Nevertheless, Dad and the neurologist continued to believe more meds were required. This time, instead of Seroquel it was Haldol, plus Depakote and a host of others. In a sense, they worked. Mom was no longer “aggressive.” On the other hand, she was lifeless. A zombie. I still struggle with that because I couldn’t stop it. In my heart, I knew Mom didn’t need those drugs. But I was powerless to get her off them. My Dad and I argued daily over the medication issue. In the end, it was his choice. He was the one in control of her care.

Clare loved floppy hats. Lisa held onto hers on this windy day at the beach.

One day when I went to visit Mom in early March 2016, I found her sitting in a wheelchair, so overmedicated she could not stand. It was like she was suddenly paralyzed from the waist down. My Dad was out of town and I was free to act as I wished. I immediately took her to the hospital. During the week she was there, we had lots of time alone. It was an extraordinary opportunity to love, heal and forgive. In the hospital, they took her off the drugs. She became her old self; the paralysis disappeared.

But my dad didn’t see that it was the drugs that caused her to be so poorly. He blamed the Alzheimer. So did the expensive and respected neurologist I would have fired on the spot. My dad didn’t see any of her falls along the way as the fault of the aides or the meds either. He blamed Alzheimer for the falls too. I would have sued for neglect and wrongful death. Dad was unable to see what I saw. He saw things differently. He honestly thought Mom was happier on those medications and in those facilities. I couldn’t stop him from keeping Mom on the drugs, and I couldn’t bring her home to be with me.

When Mom was discharged from the hospital that last time, she went back to the nursing home. Over the next three weeks, she cried every day. It was gut wrenching to see her so miserable. I sang to her, hugged her and cherished her with every ounce of love and compassion I could find within. I did whatever I could to make her laugh and distract her from the hell she was living. I found ways celebrate the good in every minute we were together. That’s what she would have wanted. That’s what I did.

Mom died on April 12, 2016. I have grieved and missed her profoundly ever since. I still look for the good, and celebrate it wherever I find it. To honour her. Because that’s what she would have done. That’s what she would have wanted.

I love you always Mom.

Despite her grief, Lisa is beginning to come to terms with the loss of her mother. She says her father made the care choices he did out of his love for Clare, and Lisa has found forgiveness. Although our stories are similar, the aftermath of my story is markedly different. I wonder if it’s easier to forgive the well intentioned who act out of love and compassion than it is to forgive those driven by greed, self-interest, convenience and control. Maybe one day, as Lisa has, I will find my way forgiveness too. Sadly, I’m not nearly there yet.

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

10 ways to get to the bottom of behaviour and problematic situations in dementia care at home and in LTCFs

March 10, 2017June 10, 2019 My Alzheimer's Story

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):

1) Delete and replace misleading assumptions

To start with it’s important to delete the assumption that the behaviour of people who live with dementia is caused by the disease, and to replace that assumption with the understanding that the way people with dementia behave is much like how the rest of us would behave in similar circumstances. You can experience that for yourself by doing this questionnaire, which takes about four minutes to complete: A short survey on behaviour. Learn more about the biomedical and experiential models of dementia here.

2) Find reliable witnesses

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:

7) Listen carefully/critically

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.

Good luck!

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

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

https://myalzheimersstory.com/2016/04/13/29-normal-behaviours-you-could-be-sedated-for/

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

BANGS: 5 surefire ways to stop anger and aggression in people who live with alzheimer’s disease in the early, mid, and later stages

December 8, 2016September 4, 2019 My Alzheimer's Story

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.

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

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:

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

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

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.

Remember:

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

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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

October 16, 2015October 14, 2019 My Alzheimer's Story

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.

“B” is for breathe;
“A” is for assess, accept and agree;
“N” reminds us to never argue
“G” is for go with the flow, let go of your ego, get on with it and get over it.
“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:

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

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

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

August 22, 2015May 8, 2020 My Alzheimer's Story

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

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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Family, Love, Tips, tools & skills

50 ways to love your mother

November 14, 2014May 10, 2020 My Alzheimer's Story

I’d been a daughter for 60 years when I wrote the list below with the help of friends and followers. You’d think I would have been and expert at it. Nope. I was still learning. Still exploring. Still discovering what it meant to me. The previous 10 years had changed the way I thought about daughterhood.

I asked friends and followers to share what it meant to them to be a “good daughter.” The diversity of their responses reminded me how individual our paths and relationships are. Inspired by their thoughts and Paul Simon’s tune 50 Ways to Leave Your Lover, I created a list of 50 Ways to Love Your Mother.

It would seem there is no one right way to be a good daughter. Only we can be the judge of our relationships.

50 Ways to Love Your Mother

be caring, sensitive, and aware
do well in school, don’t get into trouble with the law, stay clean and sober, don’t “sleep around” or have children out of wedlock
know your daughterly duties and responsibilities
question everything and be a rebel; question nothing and be a conformist
keep in contact when you’re away
do all you reasonably can lovingly
take care of her when she’s sick
understand her humanity and your own
respect her wishes
respect yourself
advocate for her if she can’t advocate for herself
do little things for her
ensure she has good food, good shelter and good clothing
care for her out of love, even when it’s not easy
take what she taught you and build on it to become an extension of her with your own dreams, aspirations, and desires
become a beautiful friend as well as a daughter
stay close by her side to help her as much as you can
travel far and wide to seek and find your own fortune
be a good person
understand neither of you is perfect
forgive her and yourself
grow into the person God meant you to be
follow your heart’s desire and your dreams, and never forget who birthed you
make her proud
stick up for yourself and defend your rights
stick up for her and defend her rights
follow in her footsteps, replicate her life
avoid making the same mistakes she did, lead a life unlike any she would have dreamed possible
do stuff with her that brings her joy and pleasure
protect yourself, even from her if need be
know when to walk to away and know when to stay
practice patience; practice more patience
give her love and support when she needs it
visit her regularly and spend quality time with her
conquer your fears
share your joys and sorrows, laugh and cry with her
speak your mind
heal your wounds
listen, listen, listen to her
think, think, think for yourself
see and appreciate her for who she is
love yourself because of yourself and despite yourself
be loyal and compassionate
eat sensibly, call home and drive carefully
be your own person; have your own life
be a good girl; be a bad girl
live purposefully and do your best
get up and keep going after you fall or fail
hold her hand when you cross the road
tell great, funny and touching stories at her funeral

This is by no means an exhaustive list. What would your mother’s list for you look like? What would your list for your daughter(s) look like?

Thanks to these daughters who collectively have about 1,000 years’ experience as such for sharing their thoughts with me:

Sally M, Belinda B., Joan L., Tami Beth L., Alice J.D.Y., Mona N. Rosario V.B. Wyld H., Kathleen M., Sheila S., Helen J. M., Mary M., Joan L., Kathy B., Glenna C., Suzette S., Edith R., British D.S., Alice J. D. Y., Jan R., Kim A. S., Denise A., Siempre M., Stephanie R. J., Alison R., Rebecca B., Beverly D., Suzette S., Sally M., Kathy B., Debie O., Carolyn T., Molly C-K.

Thanks to Tami Beth L. for this particularly touching story. And oh yeah, thanks also to Paul Simon for helping us in our struggle to be free 🙂

https://myalzheimersstory.com/2015/11/16/joys-and-tears-these-last-three-years/

https://myalzheimersstory.com/2018/11/16/a-daughters-rendering-and-remembering/

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Life & Living, Memories, Videos

5 years ago there was war and peace

September 20, 2014June 21, 2017 My Alzheimer's Story

Mom & I wearing green ribbons in support of the Green Revolution in Iran (2009) — Mom & I wear ribbons in support of the Revolution in Iran (September 20, 2009)

September 20, 2014: On June 20, 2009, people around the world watched one young woman die in the streets of Tehran in the midst of a revolution. Her name was Neda Agha Soltan. Her story is here. Time described her killing as “probably the most widely witnessed death in human history.” Neda’s dying breath still resonates in the hearts and minds of millions of Iranians.

During the summer of 2009, when Mom was in the early stages of Alzheimer’s disease, she and I made a trio of videos. I asked her what she would say to the government of Iran, what she thought of a government that would torture its own people and what she would say to a victim of torture. Despite living with dementia, she was focused, articulate and spot on in her responses. Here’s how she answered the first question:

She had no problem discerning right from wrong, and she was crystal clear about what people must do to make positive change. In one of the blog posts that accompanied the videos I wrote:

“She knows it takes strength and conviction to stand up and fight for what you believe in. It may even take a revolution. But in the end, if you have enough determination, you will prevail.”

Five years ago today, on September 20, 2009, Mom and I tied green ribbons around our wrists because we both believe people should live together in peace and harmony. Somebody took the picture above. At the time, there was a tentative peace between me and my only other sibling. Now there is nothing but ongoing war.

Ironically, our family has been torn apart over the issue of my mother’s care, and sadly, our situation is not unique. I am fiercely determined and have no doubt in my ability to create change, but I fear it will be too late for my Mom. My hope is others will benefit from the sharing of our experience, the fruits of my ongoing advocacy and the echo of my mother’s voice long after she’s gone.

There is a reason for everything. There is purpose in the telling of this story. I hope it touches and inspires you and many others.

September 20, 2014

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Tag: conflict

how being sorry and stupid turned mad into glad

From sad to glad: an example of BANGS in action

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alzheimer’s speaks’ lori la bey and i agree on the beauty of dementia

daughters, dementia and drugs: finding good on the road to forgiveness

10 ways to get to the bottom of behaviour and problematic situations in dementia care at home and in LTCFs

1) Delete and replace misleading assumptions

2) Find reliable witnesses

3) Ask questions (5Ws & some Hs)

4) Re-create the “crime scene”

5) Use your senses

6) Ask more questions

7) Listen carefully/critically

8) Re-examine the “facts”

9) Consider motives

10) Look outside the box

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BANGS: 5 surefire ways to stop anger and aggression in people who live with alzheimer’s disease in the early, mid, and later stages

More useful links:

Remember:

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

Remember:

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

1) Go with their flow

2) Let go of your ego

3) Get over it

4) Get on with it

5) Get down to it

Remember:

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50 ways to love your mother

50 Ways to Love Your Mother

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5 years ago there was war and peace