exercise – My Alzheimer's Story

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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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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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.

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

“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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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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Love, Resources, Tips, tools & skills, Toward better care

20 ways touch benefits people who live with dementia

November 4, 2016September 27, 2018 My Alzheimer's Story

The image above is a close-up of Mom and her BFF Gaby holding hands on July 13, 2013, when I took them to a concert in the park. Gaby was 98 at the time, Mom was 86; they sat side by side and had a grand time listening and clapping to the music, watching the band and the goings on around them and being “au plein air” on a fine summer evening.

Gaby and Mom loved to hold hands, wherever, whenever. They did it all the time. So did Mom and I. Appropriate loving physical touch (I deliberately include the qualifiers “appropriate” and ” loving” for obvious reasons), is fundamental to human health and well being, and yet the elderly, particularly people who live with dementia, and especially those in the later stages don’t get enough of it, which is sad in view of the many benefits. Appropriate loving physical touch is easy to do; it:

requires no special skill
uses no equipment
takes little time
costs nothing
feels good

Here are some of the benefits thanks to Ann Catlin, and AGEucate (watch the short slide show below for more information):

eases pain
improves sleep
lowers heart rate
decreases anxiety
increases relaxation
soothes and comforts
lowers blood pressure
gently focusses attention
helps heal both body soul
makes people feel secure
creates trust and goodwill
builds bridges and connection
immediately decreases agitation
lowers agitation for up to an hour
fosters feelings of closeness and warmth
decreases intensity of agitated behaviour
decreases frequency of agitated behaviour
makes people feel that others care about them
conveys fondness, kindness, concern and encouragement
improves relationships between PLWD and their care partners

https://myalzheimersstory.com/2015/05/29/101-activities-you-can-enjoy-with-a-person-living-with-alzheimers-dementia/

https://myalzheimersstory.com/2017/07/10/5-ways-to-help-people-who-live-with-alzheimer-not-fade-away/

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Tips, tools & skills, Toward better care

5 psyche-saving tips for dementia care partners

August 15, 2016December 29, 2017 My Alzheimer's Story

“What is the best way for a family to deal with the parent who has dementia?” someone asked me on Quora. Tough question. I continue to learn new things every single day on this journey; it would take hundreds of posts to share it all (I’m working on them!).

My top five best pieces of advice to that Quora questioner on that particular night were:

1 ) open your eyes

Reject the myth that you are losing the person; the person at their core remains until her/his spirit leaves the body when s/he dies. I wrote a poem about some of that here: i see you, i love you, i miss you, and there are some hands-on/practical ideas here: 7 ways to honour living and dying with dementia. Knowing that person is still there will save you needless grief, loss and pain. And the truth is they ARE still there.

2 ) be respectful

Treat the person who is living with dementia with the respect they deserve as your parent, spouse, sibling; do not condescend or infantalize them. They are still there and they have the same rights and freedoms you do. See more here: The 12 tenets of the Dementia Bill of Rights. The more respectful you are, even if it’s in the face of verbal abuse that comes from the disease, the better you will feel about yourself, and the better you feel about yourself the better you will feel about them, and…(you see where I’m going with this?)

3 ) ask good questions

If and when s/he doesn’t recognize you anymore ask yourself important questions before you decide it isn’t important to see or visit s/he any more. Here are some starters to get you thinking: 20 great questions to ask when a loved one with dementia doesn’t recognize you anymore. Do not, I repeat: DO NOT, let yourself fall into the trap of the ego that says it’s important for them to recognize you. What is important is for them to feel love. And they will if you love them regardless of whether they know your face, which they probably do BTW, or remember your name.

4 ) put yourself in their shoes

Do not ascribe behaviours to the disease that are in fact natural and normal responses to the environment and the way we mistakenly treat people who have dementia. More on that here: 29 normal behaviours you could be sedated for. Ask yourself what you would do if you had to a walk a mile in their shoes. And I highly recommend you take this survey.

5 ) ask more good questions

If your parent with dementia becomes aggressive, anxious and/or impatient, ask yourself why that might be. Here are some questions I asked myself that helped me to be a better caregiver to my care partner: 20 questions that help explain why people with dementia get agitated and physically aggressive (See more about asking good questions in my blog post 20 questions for better care on The Caregiver Network).

These may seem to be focused on the person on the receiving end of your care, and to a certain degree they are. BUT, and it’s a big BUT, I learned from experience that the easier it is on them, the easier it is on us. And as care partners, we need to make sure we aren’t drowning in frustration, anxiety, and hopelessness, because when that happens there’s often no one there to save our souls.

Do you have tips to share based on your experience? Feel free to share in the comments.

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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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Advocacy, Challenges & Solutions, Toward better care

#1 reason people with dementia try to escape

May 27, 2016December 26, 2022 My Alzheimer's Story

We want people who live with dementia to be safe and secure. We worry about them leaving where they are and not being able to find their way back. They might fall and break bones. They might bump into things and get cuts and scrapes. They might get hit by a car or a bus. They might fall into a river and drown. Anything might happen.

The problem is, anything might happen to anyone at anytime, and, while we prefer autonomy for ourselves, we want safety for those we love. We want to protect the people we love who live with dementia from cuts and scrapes and suffering. So we constrain and restrain them, and we restrict them from doing things we think might cause them injury or harm. We lock them in places and we don’t let them out. When they respond as any “normal” person would, we pathologize their behaviour and sedate them with antipsychotic drugs.

Most human beings don’t like to be confined. We want to be able to move around. We are curious and adventuresome. We like to explore and investigate and discover. It’s in our genes. Why do people who live with dementia try to escape the chairs, rooms, houses, institutions and stigma we lock them into? Because it’s normal human behaviour.

People who live with dementia are just like people who don’t live with dementia: we want to go where we want, when we want. We want to do what we want, not what other people want us to do. If we are prevented from going where we want and doing what we want, we may get agitated, anxious or angry. It’s not rocket science. It’s more like child’s play. No one wants to live in a box, figuratively or literally. Painting a prison the colours of the rainbow doesn’t change the facts that it’s still a prison and that people don’t like to be locked in.

It’s normal human behaviour to try to open closed doors, leave confined spaces and explore our environment. It’s natural to want to be free. We need to find ways to help people with dementia do what we all do naturally, and to stop punishing them for being human. Sedation is another form of prison. The bars aren’t made of plastic, wood or metal, but they are just as real.

https://myalzheimersstory.com/2017/05/02/wandering-is-not-a-symptom-of-dementia/

https://myalzheimersstory.com/2016/05/24/20-questions-to-ask-yourself-about-wandering/

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Advocacy, Antipsychotic drugs, Toward better care

20 questions to ask yourself about “wandering”

May 24, 2016April 3, 2019 My Alzheimer's Story

Here’s a fictional story based on dozens of real-life stories recounted by care partners worldwide:

As a child, Cricket’s mother Annie never sat still. She loved to run and jump and play. As an adolescent, she skipped and cycled and swam. As a young woman, she took up golf and skiing, both of which she enjoyed until she couldn’t anymore.

Annie raised four children–of whom Cricket was the youngest–while she worked as a sales rep for a clothing company. After the kids went off to seek their own fortunes, Annie took up running. She completed her first triathlon at age fifty-five. She played soccer and badminton with her gaggle of grandchildren when they were young. And she always walked. Always. She loved it.

Alzheimer’s disease didn’t slow Annie down. She continued to golf and swim as well as to hike in the mountains with friends, and, as the disease progressed, she walked more than ever. In fact, long walks became part of her daily routine when Cricket moved in to become her full-time care partner. Cricket saw the immediate benefits in Annie after their walks: Annie was calmer, more relaxed, more focussed, and happier. Cricket felt better too.

When the time came to make the difficult decision to place Annie in long-term care, Cricket was heartbroken. She explained to the Director of Care at the facility how important it was to Annie’s attitude, well-being and demeanour to be physically active and socially engaged.

“She loves to be on the go and doing things, and she adores people,” Cricket said. “She’ll never sit alone in her room. Never.”

“Oh, she’s a wanderer,” the Director of Care smiled. “We have quite a few of them. It’s not a problem. We know exactly how to deal with wandering.”

Cricket later discovered that “how to deal with wandering” actually meant “how to sedate them so it’s hard for them to stand up or walk without falling over.”

Like fictional Cricket, I hadn’t known that using antipsychotics to chemically restrain people with dementia was and still is common practice around the world, despite the fact antipsychotics should only be used to treat the small number of people with dementia who have psychosis, and then only as a last resort.

Antipsychotics are of no benefit in stopping people’s desire to walk and move–which is a normal human need–other than by making them physically unable to do so through sedation.

I shudder now when I hear the word “wander” or any of its derivatives associated with people who live with dementia. No one should be forced to remain seated for the rest of her or his life. No one should be chemically restrained for convenience using safety as an excuse.

Labels affect how we see and treat people. I believe we must cease using the word wandering, which has a negative connotation attached to it, to describe in people who live with dementia what is perfectly normal behaviour in anyone else: walking, exploring, searching, discovering, etc.

We should encourage people who live with dementia to exercise and engage life, not stop them from doing so.

20 questions to ask yourself about “wandering”

Here are 20 questions designed to help reframe and refrain from using the word “wandering” and the label “wanderer” in association with people who live with dementia. (Download the PDF here)

How many times a day do you get up from what you are doing, and go to do something else?
How many times a day/week/month do you leave the confines of your living space to go out for whatever reason (e.g. put the garbage, go shopping, go for a walk, go to a movie, go out to eat, visit a friend, go to the corner store, etc.)?
Have you ever misplaced something in your home, and spent a good amount of time going from room to room looking for it in places you think it might be?
Did you ever get lost in the woods or in any other unfamiliar environment as a child? Have you ever gotten lost while walking or driving?
Were you ever separated from your parents during an outing in an unfamiliar environment? How did you feel? What did you do?
Have you ever gone sightseeing? Have you ever spontaneously explored an unfamiliar environment?
Can you imagine never leaving your room, apartment, or house ever again? How would that feel?
How would you find your way to a destination without maps, reference points, access to GPS, a phone, a compass, or any other navigation tools?
Do you ever go somewhere (to another room for example) to get something or do something and then when you get there, you find you have forgotten what you wanted to get or do?
Have you ever gone out for a walk for the sheer pleasure of walking without any destination in mind?
If you had a pet and you couldn’t find it anywhere in the house, would you go outside to look for it?
If you woke up in a strange place with no people in it, and no way to communicate, what would you do?
Have you ever been confined to a room or hallway, or locked in a house and told you could never leave?
Do you ever walk alone? Why? Do you enjoy it? How would you react if you were told you weren’t allowed to walk alone? Ever?
If you were told you had to stay in a strange place, full of people you didn’t know, and you had no way to contact your family or friends to tell them where you were, how would you react? What would you do?
Might you get up and leave if you found yourself in an environment in which you were uncomfortable? How would you feel if you were told you had to remain regardless of how you felt?
If you were being held prisoner, would you try to escape?
What are the benefits of exercise? What is the best form of exercise regardless of age?
Why are the normal activities of walking, exploring, searching, and becoming lost thought to be pathological and labeled as “wandering” if you live with dementia?
If you were made to sit in a chair with nothing to do for long periods of time, might you become restless, want to get up or start to fidget? How long can you sit in a chair with nothing to do without feeling restless or starting to fidget?