well being – My Alzheimer's Story

Challenges & Solutions, Resources, Toward better care

20 things that are not shut down, quarantined, cancelled or kept at a distance when we deal with challenges such as pandemics and dementia

March 20, 2020March 20, 2020 My Alzheimer's Story

Friday March 20, 2020: To say these are challenging times is a massive understatement. But we have all been through challenging times, as individuals, as communities, as nations.

Yet, so far, we have managed to survive as individuals, and as a species. We have what it takes to get through seemingly impossible challenges, especially when we work together.

Dementia care partners everywhere know that to be a fact. We have learned what it takes to survive and thrive on a day-to-day basis – sometimes even a moment-to-moment basis! Unbelievably, many of us have discovered joy and inspiration along the way.

We can make it through this pandemic. Dementia care partners worldwide know we can, because we’ve learned how to deal with stuff like this. It’s part of the territory. Yes, there will be seemingly unbearable loss and grief. But those too are part of the territory. Part of being human.

20 things that are not shut down, quarantined, cancelled or kept at a distance when we deal with challenges such as pandemics and dementia

Love
Hope
Resilience
Courage
Determination
Ingenuity
Creativity
Music
Connection
Caring
Compassion
Relationships
Interdependence
Empathy
Faith
Curiosity
Laughter
Kindness
Generosity
Ferocity

This post was inspired by Jamie Tworkowski, who blogs here.

17 links to the “other side” of dementia

a prayer for those who care worldwide

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Challenges & Solutions, Resources, Toward better care

20 questions to ask yourself when someone who lives with dementia wants to “go home” or tries to escape wherever they are

February 16, 2020February 17, 2020 My Alzheimer's Story

Wanting to “go home” is a desire often expressed by people who live with Alzheimer disease and/or other types of dementia, even when they are in their own homes. Not being able to fulfill a loved one’s desire “go home” can be incredibly frustrating for care partners who would certainly take their family member living with dementia “home” if only they could.

In the early days of being a care partner to my mom, I didn’t know what to do when she said “I want to go home.” She would have her little bag packed with random stuff, and be ready to go out the door.

“But Mom, we are home,” I would say. “Look, Mom, this is your furniture, these are your carpets, those are your pictures on the wall. We are home!”

When she wasn’t convinced, the conversation would get more heated as we stood arguing in the kitchen, den, or living room of her big red brick house on the hill, until I sometimes heard myself yelling at her in exasperation “Where is home then, if it’s not here?”

I soon learned that arguing with her didn’t work. It was a waste of time and energy. It left both of us emotionally drained, and no further ahead. Eventually, I found different solutions to “I want to go home,” as well as other challenges. One solutions was to put myself in her shoes, to see her reality rather than my own.

What I discovered through self-reflection, observation and my own research is the behaviour we find challenging in people who live with dementia is behaviour we would likely exhibit ourselves in similar circumstances.

20 questions to ask yourself when someone who lives with dementia wants to “go home” or tries to escape wherever they are

When you find yourself in an environment that makes you anxious or uncomfortable, what do you do?
How would you feel if you were kidnapped? What would you do?
If you found yourself in a place that that was too hot, too cold, or too noisy, what would you do?
If were taken from your home by people you didn’t know, and put in a strange place full of crazy people, what would you do?
Where do you want to go or be when you feel tired, overwrought, out of sorts, out of place, lonely, scared or overwhelmed by everything?
How important is it to your well-being to feel like you belong somewhere? Where do you feel your greatest sense of belonging?
How long can you stay in one place without wanting to go somewhere else? Hours? Days? Weeks? Months? Years?
If someone locked you in your house and told you that you could never leave, how would you feel?
As a child, did you ever fall and hurt yourself while playing outside? Where did your instinct tell you to go for safety and security?
Have you ever run away from a problem, a place or a situation? When? Why?
Do you ever feel like you just have to leave when things get too much for you to bear?
Do you sometimes just want everything to be other than the way it is?
Do you take holidays and vacations away from home? How does it feel to be away? How does it feel to be away when everything seems to go wrong?
How do you feel when you return home after a holiday, vacation or long visit with friends or family?
In general, where do you prefer to be most of the time: in your own home or someone else’s home?
In general where do you feel most comfortable and in control: in your own home or someone else’s?
What feelings does the word “home” evoke for you?
Given the choice, when you feel tired or sick, would you rather be at home or somewhere else?
Do you sometimes long to be somewhere other than where you are?
When do you most appreciate being “at home” wherever that is or whatever it means to you?

It’s no wonder people living with dementia want to go home…

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

“wandering” is not a symptom of dementia

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Advocacy, Real life, Toward better care, You said it!

kate swaffer says: use a human-rights-based approach

February 13, 2018February 14, 2018 My Alzheimer's Story

“You said it!” is a place to discover informed comments, inspiring thoughts, short stories, good ideas, provocative opinions, quotable quotes and noteworthy snippets from across my worldwide network.

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Australia: Dementia care activist Kate Swaffer is known worldwide for her advocacy on behalf of people who live with dementia. She is a founding member of Dementia Alliance International, a speaker, and an author, as well as a wife and mother. She blogs here. The Straits Times article that goes with this video is here.

More Kate on MAS:

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Advocacy, Little things count, Real life, Toward better care

how teresa and her staff helped 90-year-old audrey walk again

January 31, 2018January 31, 2018 My Alzheimer's Story

I love to share positive stories about stuff that works to inspire others to create positive change in care environments. This one is from LPN and aging life care specialist Teresa Wheeler who shared it in a response when I posted “hidden restraints: hidden abuse” on LinkedIn:

“In my first management position in the late 1990s, I was given the task of removing all chemical and physical restraints from the residents in the two dementia units I was responsible for. While there were many success stories, Audrey’s is my favorite.

Audrey sat in a geri chair with a Posey vest on for the better part of every day because we were afraid she would fall and break a hip if we let her get up and walk around. In keeping with the goal of a restraint-free environment, I was committed to find a way forward for Audrey. First we tried removing the Posey vest. Not surprisingly, 90-year-old Audrey crawled out of the geri chair. Then we tried a merry walker, and God bless her, Audrey got out of that too.

With the blessing of her family, the staff and I finally decided to let Audrey sit in a wheelchair under the supervision of everyone’s caring and watchful eyes. Whenever she wanted to get up and walk, we would help her stand up and use the rail down the hallway to walk independently.

The result was like a miracle, Audrey walked for several years with only one fall, and that without any broken bones. She was no longer agitated and her quality of life improved substantially. She loved to walk, and we loved that we were able to facilitate her freedom.

It takes a village!”

Teresa Wheeler is the founder of Seasons of Change Consulting; she and her team provide a range of services to empower seniors and their families in Ohio.

Do you have similar success stories to share? Get in touch!

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Activities, Inspiration, Life & Living, Toward better care

meggen’s bad day ends with a light-bulb moment

January 5, 2018January 8, 2018 My Alzheimer's Story

When Australian physiotherapist Meggen Lowry forgot her keys (car, house, and others) in the glove box of her partner’s car, she wasn’t bothered. She had a spare for her Subaru 4×4, and that’s all she really needed to drive herself to a full slate of appointments that summer day.

What she didn’t know when she left her flat was the battery in the spare key was dead. That meant she’d have to unlock and lock the vehicle doors manually as she made her way around town to visit her clients.

No problem. Or so she thought.

As it turned out, the forgotten keys, the spare key battery fail, certain design features of her vehicle, and other random circumstances conspired to create a day that went from good to bad to worse. And in the end, a short scribbled note she’d written in the margins of some paperwork five years earlier would prompt her to discover dementia learning amidst the disaster. Here’s the note:

I was charmed by Meggen’s recount of her adventure; I hope you will be too. More important, I appreciated her self-reflection and spot-on connection at the story’s conclusion.

I wonder if you’ll agree…? (Meggen starts telling her story at about 01:35 into the podcast below).

Meggen Lowry is the Principal physiotherapist at Next Step Physio in Brisbane, Australia. She is passionate about healthy ageing, and serves on her state’s gerontology board of the Australian Physiotherapy Association. Meggen champions movement as medicine for both the body and the brain. She partners with aged and community care organisations to enhance access to both PREhabilitation and rehabilitation services for older adults, and promotes inclusion for those with cognitive impairment. Meggen developed Clock Yourself; an exercise program that combines brain games with physical exercise. See www.clockyourself.com.au for details.

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Inspiration, Life & Living, Videos

77-year-old ballet teacher still on her toes

January 3, 2018 My Alzheimer's Story

“It seems amazing that I’m still dancing at 77,” says ballet teacher Suzelle Poole with a smile, “I really thought that I was going to be finished in my twenties.”

Time proved Ms. Poole wrong.

At Christmas 2017, she performed with some of her students at local care homes in the UK, where, she said, she was older than many of the residents.

Seven decades after she began taking ballet lessons, Ms Suzelle Poole still dances with grace, poise, and a confidence that is wonderful to behold. See for yourself in this inspiring three-minute video from the BBC:

Coincidentally, aging, dance and dementia seem to be linked somehow for me. Find more MAS dance-related articles here.

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Activities, Advocacy, Inspiration, Toward better care, Videos

how many more steps could you take if you couldn’t take any more?

November 17, 2017November 18, 2017 My Alzheimer's Story

This post is dedicated to the late Dr. Richard Taylor, advocate Kate Swaffer, and care warrior Leah Bisiani.

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“I think I could take a few steps,” Mom said, “even if there’s not too many.”

It was her birthday. September 27, 2015. She’d been “behind bars” for almost three years, during which she had been inappropriately medicated, and forced to remain seated for “her own safety.” She spent most of the daylight hours chemically restrained (with antipsychotics), and physically restrained (in a recliner or a wheelchair), despite the fact sitting still was completely contrary to her nature. She could hardly stand anymore — her gait had become unmanageably unsteady due to the meds, and from sitting most of the time.

Exercise is essential for well being. Everyone knows that. Everyone. So, even though the distances became ever shorter, I helped her to walk each day. Or at least to try to walk. When I missed a day or two for whatever reason (which was rare), it was always more challenging at the next visit. Her legs would be shakier, she wouldn’t be as strong.

But she never gave up. Neither will I.

This video is part of a series extracted from a care conversation with my writer friend Lorrie B. “I’m keen for others to know the reality of my mother’s and my experience of long-term ‘care, and you’re the perfect one to help me do it,” I told Lorrie on Mom’s birthday in 2017.At this point, Lorrie had been the primary care partner to her own parents for three years, and they were still in their own home. She also had (and still has) her own blog called Unforgettable (I wish I were half the writer she is), which I highly recommend following (I do!). The other posts in the series are here.

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Family, Life & Living, Little things count, Love, Videos

10-day-old wyatt meets his great-grandma for the first time

May 24, 2017May 24, 2017 My Alzheimer's Story

*Trigger warning:* beautiful and moving video below. Tissues recommended.

Care partners by the thousands share their joys, sorrows, challenges and solutions in Facebook groups and FB communities–it’s one way to feel connected and be supported by others sailing in similar boats. The posts are both heart-wrenching and heartwarming, often making me laugh and cry at the same time. One of Sherri Sturm’s stood out from all the others. I asked her if she would let me “go public” with it; she generously agreed.

Sherri described what took place, and shared some video clips with me:

“My mom Sharon is in the later stages of Alzheimer disease. Still, I wanted her to meet Wyatt, my 10-day-old grandson, and her great-grandson. I wasn’t sure how she would react, since she appears to have lost the ability to communicate with words. It feels like she doesn’t understand what we say to her, and she seems not to know any of us either.

Mom has always loved babies, and I thought she might enjoy holding Wyatt. I put him carefully in her arms; she immediately and naturally cradled him. When he put his hand near her mouth, I was afraid she might bite it, mistaking it for food. Instead, she kissed it gently, and mumbled to him. When I made a motion to take him back, she clearly communicated with her body language that she wanted to hold him a little longer. These were such beautiful, precious moments:

This experience showed me that we will never know what someone living with dementia at this stage really thinks, feels or understands. My advice? Don’t discount your loved one with dementia regardless of how they appear on the outside. They are still very much whom they are deep down inside. Treasure every moment, and include them in special occasions and life celebrations whenever you can. You will never regret it.”

Beautiful and precious indeed.

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Activities, Inspiration, Life & Living, Videos

going out dancing

May 22, 2017 My Alzheimer's Story

Living well, eating well, and getting plenty of exercise are the best ways of staying healthy overall, aging well and delaying or even staving off Alzheimer disease and other dementias.

Walking is among the best exercises you can do (I walk for about an hour and a half each day), but more fun than walking in my opinion is dancing – especially when you do it in a group. It’s energizing and fun. Plus, learning something new like these seniors are with the hip-hop moves in this video helps create new pathways in the brain, which is thought to be a great way to develop “brain muscle.” AND, If that weren’t enough exercise like this releases endorphins that help people maintain a positive attitude.

So it’s all good. No downside. Yay for music. Yay for dancing.

By the way, can you guess which one of these hip-hop dancers has dementia?

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

20 questions to ask yourself when you blow up

June 5, 2016June 5, 2016 My Alzheimer's Story

It happens to everyone at one time or another: we lose our temper with someone we love, we say things we didn’t mean in the heat of the moment, and we’re wracked by guilt afterward.

Care partners to people who live with dementia are no different from anyone else. We too lose our temper and say things we don’t mean. We are only human. We’re often drafted into the role of care partner without training, without knowledge and without the proper skills. Guess what? That takes its toll.

When we “lose it” the impact on the people we love who live with dementia can appear devastating. We feel doubly guilty because the behaviour that drives us crazy is not intentional on their part. They don’t do what they do maliciously, Alzheimer’s disease or another form of dementia reduces their ability to behave in ways to which we are accustomed. We worry for their safety, we want to protect them. We are stressed beyond reason and we snap. We lash out, just as they sometimes do, because we feel angry, frustrated and powerless.

It’s often hard to let go of what we’ve done and to forgive ourselves when this happens.

Here are 20 questions to ask yourself when you blow up:

Are you doing your best? If you are truly not doing your best, how could you do better? Are you trying to do too much? Are you stretched too thin? Do you have enough support?
Do you expect other people never to lose their patience and/or get angry? If you do, is that a realistic expectation and are others always able to achieve it?
Are you sorry? Is there an opportunity to say you’re sorry? Have you taken it? (Hint: if you haven’t, try it now. Find seven specific ways to phrase it here.)
Do you love the person you care for? Did you intentionally want to hurt them, or make they feel bad, sad or upset?
Did you intentionally yell at them, berate them or blame them? Or were you simply at the end of your proverbial rope?
Has anyone ever been angry with you for any reason? Has anyone ever yelled or spoken to you in a harsh way when you didn’t deserve it? While it might have been unpleasant at the time, did you get over it?
If you answered “yes” to #6, were you able to forgive the person who was angry or berated you? What helped you to forgive them? If you couldn’t forgive them, why not?
At your core, are you more “good” than “evil?” As a rule, do you tend to be abusive or compassionate?
Has your care partner who lives with dementia ever behaved in ways that were hurtful to you? Were you able to forgive him or her? What helped you to be forgiving? What stopped you from forgiving?
Is it helpful to feel guilty and/or beat yourself up over something you have done? Instead of feeling guilty and/or beating yourself up, what actions might you take to heal what has happened? Be specific.
Have you given some thought to the circumstances that led to the blow up? What happened exactly? Can you step back and analyze what went down in a cool and non-judgmental way? How good a detective are you? Can you turn this into a learning opportunity?
Did you blow up after a long string of small incidents (i.e. was this the straw that broke the camel’s back)? Or was it one BIG incident “out of the blue?”
Do the answers to #11 and #12 suggest what you might do differently the next time to avoid a similar result? (For example: Perhaps deep breathing would have helped calm you and diffused the situation. Might the triple “A” in BANGS have been useful?)
Are you mentally and/or physically exhausted? Are people who are mentally and/or physically exhausted able to perform at peak levels?
Do you pat yourself on the back every time you do something good, kind, compassionate, and loving for your care partner who lives with dementia? If not, why not?
Do you do more “good” things than “bad?” How often do you praise yourself and tell yourself what a great person you are for the good things you do? Is it more or less often than you feel guilty about the “bad” stuff?
What rewards do you give yourself for the amazing work you’re doing?
Can you let it go? Are you able to forgive yourself? If yes, what would be the result? If not, what would be the result?
Overall, do your actions and care make your care partner’s life better or worse? More livable or more miserable? Easier or harder?
Are you a superhuman superhero?

Let me know if these questions help by commenting below. Find more “20 questions” posts here.

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