walking – 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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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.

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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, 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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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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Activities, Inspiration, Life & Living, Videos

team of four elder swimmers with an average age of 90 breaks world record

March 19, 2017March 19, 2017 My Alzheimer's Story

The four swimmers (aged 86, 89, 92 and 93) who are the subjects of the inspiring video below broke a world record in a 200-meter freestyle relay in which they each swam 50 meters. If that isn’t inspiration enough, one of the two women on the team was unable to attend the previous year’s event because she was recovering from a broken neck at the time. Asked what kept her going, she responded: “Swimming!”

If you think this post has nothing to do with dementia, you’d be wrong. Exercise and attitude are important factors in staying healthy as we age, particularly with respect to boosting brain power. Here’s what Canada’s ParticipACTION program says:

“Physical activity is protective against the onset of dementia and slows its progression. The deterioration of the brain’s prefrontal cortex and hippocampus, which play important roles in complex thinking and memory formation, is usually associated with dementia. Luckily, these two areas are very responsive to physical activity, and tend to be bigger in size among people with higher fitness levels. This means that by constantly stimulating your brain through physical activity, you can effectively extend your years of good mental health.”

It’s equally important for people who live with dementia to stay physically active and to engage with life for as long as they possibly can. Here are 101 activities you can do with your dementia care partner. Activate!

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Care Partnering, Hope, Humour, Joy, Love, Memories

happy big bird day!

January 12, 2017 My Alzheimer's Story

May 3, 2012: Caroline and Mom after they had just hung out the laundry. The colourful napkins they’ve carefully pinned on the line make me think of Buddhist prayer flags.

I didn’t know I was shaking hands with an angel when I met Caroline (aka Big Bird; pictured above with Mom), on October 31, 2011, my late grandmother’s birthday, and the day after I arrived back at Mom’s place to live with and care for her full time.

Caroline knocked at the door at 13:00 precisely. I soon learned it was her habit to be punctual. Never early, never late. Always on the stroke of the appointed hour. Initially, she came to us on Monday and Wednesday afternoons; someone else came on Tuesdays and Thursdays, and yet a third person on Fridays; all of them from 13:00 to 18:00. The rest was up to me.

Big Bird and I connected from the first minute of the first day, just as she had bonded with Mom immediately when she had begun working with her six weeks before my return. They made a somewhat comical pair: tall, lithe, 33-year-old Caroline, and short, stocky 83-year-old Mom. Their 50-year age difference made no difference at all. They loved each other from the get-go.

When an angel walks into your life, you do everything you can to keep her there. Over the next several months Caroline and I fought to have her spend more time with Mom and me. Thank God we won that battle! By the end of January, 2012, Caroline was with us from 09:00 to 18:00 five days a week. We were so blessed. Caroline accompanied Mom through breakfasts, shower times, walks, trips to the grocery store, visits to the bathroom, clothes shopping, flower arranging, snow shoveling, birdwatching, leaf raking, gardening, watering, fire lighting, lunches, laundry hanging and whatever else was on the agenda with grace, compassion and the utmost care. The did everything together, and laughed and giggled their way through life’s ups and downs like a couple of schoolgirls, despite the hardships and challenges of living with Alzheimer’s disease. Of course there were difficult times–many–and we all cried separately and together on many occasions as well. I was/am profoundly grateful for all of it.

The three of us formed an amazing care partner team. We tackled chills and spills; we celebrated small victories. None of us could have done it without the other two. Our triad was and still is a testament to feminine strength and wisdom. January 12 is Big Bird’s birthday. Here’s to her with a rogues’ gallery featuring Mom and her during various adventures — I know it will bring a smile to her face and perhaps a tear to her eye.

I love you Big Bird! My brain may one day forget all you did for Mom and me, but my heart will always remember. Happy Big Bird Day XOX Punkie

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Activities, Love, Videos

it ain’t no bowl of cherries; but it could be a basket of pompoms

September 30, 2016June 24, 2018 My Alzheimer's Story

Too often people are constrained by what they are told they can’t do rather than encouraged to do what they can.

I learned so much with respect to abilities and labels during my Alzheimer’s story with Mom. I wanted to help her engage life as much as she could for as long as she could; that was my goal. Yes, her abilities declined as the disease progressed, but there were always things she could do. Always. That’s why I never stopped trying new things or re-trying things I had tried before to keep her as active and as healthy as possible despite the degeneration caused by the disease.

On September 6, 2014, two years before she died, I experimented with a basket of pompoms of different colours and sizes. Mom started playing with the pompoms as soon as I put the basket on her lap. She picked them up, rolled them around in her hands, held them up to show me.

“This is a yellow one,” she said of the pink one pinched between her thumb and index finger.

“Yeah, it’s bright,” I replied

“It’s bright,” she echoed. Repeating what was said around her had become Mom’s way of making conversation and staying connected with people. She may or may not have understood everything that was being said, but she wanted to participate damn it! That was her character. She drew on decades as a successful real estate agent for her “social chit chat” skills. She had a hard time completing sentences from early 2014 onward, but she still had moments of astonishing clarity and a strong will to express herself.

Here’s a snippet of what happened with the pompoms:

I rarely mourned the loss of the Mom I knew: a competent, funny, fiery, fiercely independent business woman who was always on the go. Sometimes during our journey, I prayed that she would both go and stay. Her condition was sometimes heartbreaking to witness, but I didn’t shed more than the occasional tear over the things she couldn’t do — I focused my energy on the many things she still could do.

Mom may have bee confused, but my mission was clear to me. I wanted to help her engage with life and with others for as long as possible. We did simple things together: stood up, sat down, walked a little way, counted to three or four or five or 10 on a good day; we sang, clapped our hands, made up silly rhymes, “cooked,” had tea with friends, went for a drive, picked out the yellow and green pompoms from the basket on her lap. We listened to music, we made music, I painted her nails.

Sometimes we talked about dying. Or about love. Living with Alzheimer’s wasn’t a bowl of cherries for either of us. Just like it’s not for millions of others around the world who live with dementia of the Alzheimer’s type and other dementias right now. We could have moaned, whinged and complained about our sad lot. We could have given up. But that wasn’t in Mom’s nature, nor is it in mine. What good would giving up do? Better to keep going. When happiness fails to knock at your door, better create your own joy.

A basket of pompoms is as good a place to start as any.

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

https://myalzheimersstory.com/2017/09/11/flute-flies-love-taps/

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Care Partnering, Life & Living, Love, Toward better care

an open letter to those who think they know better

May 29, 2016September 20, 2016 My Alzheimer's Story

Dedicated to unappreciated care partners worldwide. Thank you for all you do.

Dear random person who sees my care partner from time to time and feels the need to point out s/he has bruises all over her/his body that look frightening and s/he has really declined a lot since the last time you saw her/him and s/he can barely walk anymore and s/he’s asleep when s/he should be awake and sometimes vice versa and you hardly recognize him/her as the person you used to know and you’re really shocked and feel bad seeing him/her like this and isn’t it sad and a shame and this is what you would or wouldn’t do if you were me and you would rather be shot than end up like this,

Yes; I know. I know what you think.

But you know little of me and/or the situation in which my care partner and I find ourselves. You think you do, but you don’t. Pretty much the only people who get it are those who have been through it, and you clearly haven’t otherwise you wouldn’t say the things you do and I wouldn’t need to write this letter to you.

I either live with my care partner or I visit her/him almost daily. I spend endless hours and fleeting moments with him/her talking nonsense and singing and just being together, because one day soon s/he will be gone. Every minute with him is torture; every second with her is precious. I know by the way s/he rocks back and forth when s/he wants to get up and get moving, and by the look on his/her face and the feel of her/his hand in mine if s/he is able to stand unassisted. Mostly s/he’s not, so I am by her/his side whenever I can be. When s/he is able, we shuffle around wherever we happen to be to get some exercise.

I know by the way she pats her hair that she loves the fact that it’s “done.” I know the colour and brand of her nail polish because I supply it. I know when she had her last manicure because I was the one who gave it to her.

I know by the way he touches his face that the cut just above his left brow worries him. I know the kind of aftershave he prefers, so I buy it to help him know he’s the same man he used to be: the man who was and still is the love of my life. I know by the way he reaches out to me when I’m near that my presence is important whether he recognizes me or not.

I know when his/her sleep is unnatural by the slackness of his/her mouth and the rhythm of his/her breathing. It breaks my heart that s/he is being medicated for normal behaviour which could be addressed and resolved without drugs. I can’t change that; I would if I could.

What I can change is a soiled adult brief, and I do so often. No one showed me how. I figured it out myself, just as I’ve learned everything else I wish I’d never had to learn about being a caring partner to someone who lives with dementia. I didn’t asked for this. I never wanted it. But here I am. What can I do?

I recognize her wheelchair by the stain on the seat. When she can’t feed herself, I help her to eat like she helped me when I was a baby. When she’s able to eat by herself, I celebrate a small victory. I help her engage with her shrinking world, not simply exist in it.

I see her/him in ways you can’t even begin to imagine. We are reflected in the mirror of each other. I have cried with her/him, comforted her/him and felt the sting of her/his acid Alzheimer’s tongue. I pray for her/him to stay and go. I watch her/him look death in the eye and grab life by the horns every day despite her/his illnesses. I am her/his cheerleader, her/his advocate, her/his voice. I am her/his child/parent/spouse/sibling. Our souls are linked; our destinies are intertwined. We are more deeply connected than we have ever been.

Who are you? You are a casual observer making ill-informed assumptions and coming to erroneous conclusions based on incomplete information. You mean less than nothing to me. My care partner means everything to me. I have experienced first hand the effects of decisions I’m told are in his or her best interests, but which in reality have little or nothing to do with her/his health and well-being and everything to do with convenience, reducing costs and conserving her/his wealth for someone else’s use once s/he’s gone.

The effects of the decisions in which I have no say include the cuts, bruises and other conditions about which you feel compelled to apprise me. Your thoughtless and insensitive comments add salt to other wounds you cannot see. You don’t know me. You don’t know my circumstances. You don’t know my parent/spouse/sibling/child although you may think you do, and because you think you do you also think you have a right to judge me or her/him or the situation in which we find ourselves.

The next time you feel tempted to comment, judge, berate or advise me on aspects of my care partner’s condition or my role in her/his life, please consider all of the above and mind your own business instead of mine.

I don’t need or want your judgment or your unsolicited advice.

Regards,

Unseen and unheard care partners worldwide

P.S. to all the beautiful friends and acquaintances everywhere (especially those in online support groups whom I may never meet or know personally) who support without judgment and share their wisdom and experiences without expectation: thank you, I love you and I am so grateful you are here to hold my hand ❤

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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.