Category: Resources

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

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
  1. Love
  2. Hope
  3. Resilience
  4. Courage
  5. Determination
  6. Ingenuity
  7. Creativity
  8. Music
  9. Connection
  10. Caring
  11. Compassion
  12. Relationships
  13. Interdependence
  14. Empathy
  15. Faith
  16. Curiosity
  17. Laughter
  18. Kindness
  19. Generosity
  20. 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

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
  1. When you find yourself in an environment that makes you anxious or uncomfortable, what do you do?
  2. How would you feel if you were kidnapped? What would you do?
  3. If you found yourself in a place that that was too hot, too cold, or too noisy, what would you do?
  4. 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?
  5. 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?
  6. How important is it to your well-being to feel like you belong somewhere? Where do you feel your greatest sense of belonging?
  7. How long can you stay in one place without wanting to go somewhere else? Hours? Days? Weeks? Months? Years?
  8. If someone locked you in your house and told you that you could never leave, how would you feel?
  9. 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?
  10. Have you ever run away from a problem, a place or a situation? When? Why?
  11. Do you ever feel like you just have to leave when things get too much for you to bear?
  12. Do you sometimes just want everything to be other than the way it is?
  13. 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?
  14. How do you feel when you return home after a holiday, vacation or long visit with friends or family?
  15. In general, where do you prefer to be most of the time: in your own home or someone else’s home?
  16. In general where do you feel most comfortable and in control: in your own home or someone else’s?
  17. What feelings does the word “home” evoke for you?
  18. Given the choice, when you feel tired or sick, would you rather be at home or somewhere else?
  19. Do you sometimes long to be somewhere other than where you are?
  20. 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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Care Partnering, Challenges & Solutions, Real life, Resources

5 things that may help when you and/or your care partner feel lost and confused

My Alzheimer's Story

During the first two years Mom was in dementia jail, she was still able to walk. I would often bring her to my house (which was a three-minute drive up the hill), for supper, a music session or just to hang out.

We would talk about everything from soup to nuts. Sometimes our conversations were light and airy, sometimes they were emotional and difficult. When they were the latter, I made a special effort to be with her in whatever space she was in so we would be connected.

My life experience has taught me that some stuff can’t be fixed, no matter how hard you try to make it better. And as a care partner, I learned that people who live with dementia are human beings with feelings just like the rest of us. They struggle just like the rest of us. They want to succeed just like the rest of us.

When Mom and I struggled, we supported each other. We found these five things helped us get through tough times (maybe they’ll work for you too):

  1. Hold hands
  2. Cry together
  3. Do what you believe is the right thing
  4. Do the best you can
  5. Share chocolate

Here’s a real life example / demonstration from a conversation Mom and I had on April 10, 2013. I had brought her to my place for supper. We were struggling, and we didn’t know what to do:

we all go through rough patches. here’s one thing that can help us get to the other side.

doing the right thing when everything seems wrong

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Challenges & Solutions, Inspiration, Music, Resources, Toward better care

they took away his cutlery and gave him drumsticks – he loved it!

My Alzheimer's Story

Yes, there are solutions to addressing situations and behaviour that care partners and care workers find challenging. In most cases finding a solution involves thinking out of the box, which is what the staff at this gentleman’s care home did. He wanted to tap and clap, which people around found disturbing. Staff were stumped initially, but then they came up with an innovative solution as shown in the video below.

Here’s the explanation behind the video, which I found on the Center for Applied Dementia Research’s Facebook page:

This is an outstanding application of a “Responsive Behavior” Assessment. Our partners at Mt. Bachelor Memory Care sent us this video with the following message: “This individual has a habit of clapping his hands or rapidly tapping silverware on the table. Staff were making him wear gloves and taking his silverware away and replacing it with plastic, this caused him to disengage. I worked with the team using the form and this is what we came up.” [Shared with permission]

The innovative team at Mt. Bachelor looked at an individual’s behavior, understood it as a response to a need, and found an alternative to meet that need which is appropriate and meaningful. Rather than allowing the person to retreat or disconnect, they adapted the environment to everyone’s benefit. Well done!

Frontier Management‘s Mt. Bachelor Memory Care is a Gold Credentialed Montessori Inspired Lifestyle Community in Bend, OR. The commitment and care shown here demonstrates why they deserve that award.

The “form” they refer to above was developed by the Center for Applied Dementia Research, and is part of their training in the Montessori approach to dementia care.

101 activities you can enjoy with a person living with alzheimers dementia

5 things I never knew until I sang with my alzheimer mom

10 tips to make the most of music in dementia care

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Care Partnering, Resources, Toward better care

20 dementia “what ifs?”

My Alzheimer's Story

The ways we see dementia and the people who live with it are changing, but not fast enough! Many of our perceptions remain distorted and damaging. These distorted and damaging perceptions result in poor care, stress and unacceptable outcomes.

What if we learned to ask better questions? What if we opened our minds to possibility and out-of-the-box solutions? What if we created a new world in which people who lived with dementia were not stigmatized, shunned, and isolated? What would that world look like? What would dementia care look like?

These 20 questions are meant to get people thinking about what the world might look like if we saw dementia and the people who live with it with new eyes:

  1. What if we weren’t afraid of dementia and the people who live with it?
  2. What if we viewed dementia as just another life challenge some of us have to face?
  3. What if we understood that people who live with dementia are people until they die?
  4. What if we knew with certainty that people who live with dementia have needs, feelings and emotions just like the rest of us?
  5. What if we knew how to communicate effectively with people who live with dementia?
  6. What if we knew that it’s really not that important if people with dementia recognize us or not?
  7. What if we understood that behaviours we may find “challenging,” “difficult,” or “disruptive” are actually ways for people living with dementia to tell us what they want and need?
  8. What if, instead of excluding, we included people with dementia in our lives?
  9. What if we learned how to step into the individual realities of people who live with dementia instead of trying to fit them into our reality?
  10. What if we created communities that brought together all kinds of people with diverse cognitive abilities instead of segregating them?
  11. What if we loved people for who they are right now instead of who they were yesterday or the day before?
  12. What if we were able to see the potential in people who live with dementia?
  13. What if we could see what people can do instead of what they can’t?
  14. What if we knew that people recognize love even if they don’t recognize our faces or know our names?
  15. What if we could learn to find healing and joy instead of pain and sorrow in our relationships with people living with dementia?
  16. What if we could see dementia differently?
  17. What if we could see people who live with dementia differently?
  18. What if we could connect instead of disconnecting with people who live with dementia?
  19. What if we learned to appreciate the time we have together now, instead of mourning (in advance) the time we won’t have in the future?
  20. What if we could see possibility and opportunity instead of obstacles and barriers?

What if all of the above?

It’s time to reimagine, recreate and revolutionize the way we see dementia as well as the way we provide care to the people who live with it.

More posts in the “20 questions”series here as well as below.

20 great questions to ask when a loved one with dementia doesn’t recognize you anymore

20 questions that help explain why people with dementia get agitated and physically aggressive

20 questions to ask yourself about dementia-related incontinence

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Care Partnering, Resources, Toward better care

10 great reasons to ask 20 questions and how to create them

My Alzheimer's Story

Isn’t it funny how we often walk through life without pausing to ask ourselves why we’re doing what we’re doing, or even if it’s important to do it? We march through our days robotically, repeating our routines and possibly making the same mindless mistakes without a second thought.

I’ve learned it’s useful to stop and ask myself if there might be a better way. Asking questions is one of the basic techniques used in most “helping” professions. Life coaches, business coaches, doctors, psychiatrists, psychologists, social workers, nurses, doctors, and others constantly ask questions. Why? Because questions are useful tools; they help us to:

  1. Discover new information
  2. Diagnose problems
  3. Think more clearly
  4. Generate ideas
  5. Explore possibilities
  6. See new perspectives
  7. Reveal patterns
  8. Provoke reflection
  9. Encourage conversation
  10. Stimulate participation

As a dementia care coach and care partner, I use a technique I call “20 questions” to help others better understand themselves, the people they care for, and the process they’re in. Anyone can use 20 questions to gain insight into any challenge or issue. All you need is a pencil and paper, or your favourite word processing package, your imagination and a topic. The rest is simple:

  1. Put your topic at the top of the page
  2. Brainstorm questions related to it
  3. Write or type the questions on the page
  4. Do not edit yourself; write whatever comes to mind
  5. Don’t worry if some questions are similar or if you repeat
  6. Keep going until you run out of questions
  7. Do not try to answer the questions
  8. Leave the questions to percolate for an hour, a day, a week or a month
  9. When you feel ready, review the questions
  10. Be open to the answers, ideas and solutions that emerge

Here are a couple of examples of dementia care issues I’ve delved into more deeply using 20 questions.

Blow ups

It happens to everyone at one time or another: we lose our temper with someone we love, we say things we don’t mean in the heat of the moment, and we’re wracked by guilt afterward. Here are my the first three questions (the other 17 are here):

  1. 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?
  2. 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?
  3. 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.)

Dementia anxiety and aggression

I have learned through personal experience, reading and research that people with dementia (PWD) behave in logical, natural and understandable ways to stressful situations – just like most of the rest of us do. But there’s still a whole world of misunderstanding among family caregivers and professional care workers about behavioural expressions in people with dementia. I built this list: 20 questions that help explain why people with dementia get agitated and physically aggressive; here are three of the questions:

  1. What would you do if you wanted to escape, but all the doors were locked and you didn’t have a key? What would you do if you weren’t allowed out – ever?
  1. What would you do if a stranger tried to take something that belonged to you? What if they managed to get it and they wouldn’t give it back?
  2. What if you said you didn’t want to have a bath but people took your clothes off anyway and then they forced you into the bath and told you to calm down and be quiet?

What 20 questions can you come up with the help address your life and/or caregiving challenges?

More posts in the “20 questions”series.

20 questions to ask yourself about “wandering”

20 questions that help explain why people with dementia get agitated and physically aggressive

20 questions to ask yourself about dementia-related incontinence

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Resources, Tips, tools & skills, Toward better care

need more sleep? here’s a care partner tip that might help…

My Alzheimer's Story

Catherine Bixenman-salesi, who is a member of the online dementia support group USAgainstAlzheimers, is the primary care partner to her mom who lives with Alzheimer disease. Catherine regularly shares innovative, interesting and easy-to-implement “work arounds” to address the challenges she faces interacting with her mom. See more of Catherine’s tips at the end of this post.

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

One thing that exhausts many dementia care partners is lack of sleep.

Long-time care partner Catherine Bixenman-salesi found a way to get more sleep every night, AND keep her mom safe and secure. Here’s what she shared with me and others in a Facebook support group:

I just figured out how to set my mother’s baby monitor alarm clock feature. Now, I can get some sleep and not worry about over sleeping when it’s time to toilet her. In the middle of the night, I can just look at the monitor to see if she is sleeping soundly. Or, if she starts to get anxious, I can talk to her using the monitor without having to get up.

When I talk to her, she sits up and listens to my voice. Sometimes I put the lullaby mode on, and she sleeps soundly. I love this gadget! I should have purchased one years ago. The camera works great. I put the monitor on my nightstand and I can watch mom from my room. I wish I had bought the monitor years ago. I spent so many nights sleeping in her room on the floor or in her bed – not to mention all the times I got up to check on her and then couldn’t go back to sleep!

The brand I have is Willcare, but there are loads of others. I chose this one because it’s simple. You plug the camera in an outlet, and you can point it where you want to see. Then plug in the monitor wherever you are. You must have WiFi (smart phone not required). It’s extremely easy to use. I can see mom on the screen. I leave it on all the time. It makes a sound when she turns or starts to move. I push a button, and i can talk to her and she can talk to me.

I bought the monitor on Amazon about a year ago, and it really has allowed me to get a few hours of uninterrupted sleep each night. I can’t tell you how many times I would get up to make sure my mother was breathing.

I read a lot of reviews, and chose one that I thought would be simple and easy to use. I don’t have a smart phone, but there are ones you could use with your phone. It can also be used unplugged for a few hours. The alarm clock can be set to ring every two, four, or six hours. I encourage all caregivers to buy one. You can find them on line here, just read the reviews, and choose one you like. I hope this tip will help someone else.

I wish I had thought of this when I was living with my mom in her own home — I might have gotten more sleep too!

hot pink duct tape solves alzheimer seating issue

turn potential dementia disasters into fun and laughter

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Care Partnering, Resources, Toward better care

20 questions to ask when someone living with dementia “resists” or “refuses” care

My Alzheimer's Story

I have learned through personal experience, reading and research that people living with dementia (PLWD) behave in logical, natural and understandable ways to stressful situations – just like most of the rest of us do. They react as any “normal” person would, but their behaviour is attributed to the disease rather than to whatever catalyst actually sparked it.

When you think about it, it’s not rocket science, or at least it’s not if you haven’t bought into the biomedical model that labels normal behaviour as aberrant because people have a diagnosis of Alzheimer or a related dementia.

I hope these questions will get you thinking about how “resisting” and “refusing” care might be understood and treated differently. I also hope it will prompt solutions other than a prescription pad and antipsychotic drugs.

20 questions to ask when someone living with dementia “resists” or “refuses” care
  1. Is the person able to do this herself? Would she prefer to do it herself?
  2. Is the care necessary? Could it be deferred or stopped altogether?
  3. If a stranger were doing to me what I’m doing to her, how would I feel? What would I do? How would I react?
  4. Have I asked his permission to do what I’m doing?
  5. Is it the right time for this? Would another time be better?
  6. Am I the right person to be providing this kind of care to her? Would someone else be better equipped?
  7. Have I been properly trained in this kind of care?
  8. How did I approach her? What was her initial reaction? Did I change my approach based on her reaction? Am I going with her flow?
  9. Did I start with and continue to use Hand Under Hand?
  10. What was going on with him in the previous hour or two? What was he doing? Could whatever it was have caused him to feel upset or uncomfortable?
  11. Is this the right environment to be providing this kind of care? Is more privacy needed? Is it too noisy?
  12. Do I normally have a good relationship with her? Does she like me? Do I like her?
  13. Am I treating him with respect? Am I treating him like a child, or a patient rather than like a person?
  14. Am I taking steps to preserver her dignity? Am I being compassionate and understanding? Have I put myself in her shoes?
  15. If I were on the receiving this kind of care, how would I feel? What would I do? How would I react?
  16. How do I feel about providing this kind of care to him? Am I comfortable? Embarrassed? Matter of fact? Clinical? Angry? Disgusted?
  17. Might I have hurt him in any way? Physically or emotionally? Could he be in pain? Is the care process painful?
  18. Is she hot, cold, hungry or physically uncomfortable in some way?
  19. What tone of voice am I using? What kinds of words am I using? If someone were to speak to me like I’m speaking to him, how would I feel? How might I react? What would I do?
  20. Do I have enough time to provide this care properly? Am I hurried and rushed? If I am hurried and rushed, might this be causing her to feel anxious or uncomfortable?

More posts in the “20 questions”series.

20 questions to ask yourself about “wandering”

20 questions that help explain why people with dementia get agitated and physically aggressive

20 questions to ask yourself about dementia-related incontinence

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Care Partnering, Teepa Snow, Tips, tools & skills, Toward better care

surprising teepa care partner tip for when people keep repeating same old stories

My Alzheimer's Story

Yes, it can be tiresome listening to someone who is living in the early and middle “stages” of dementia tell you the same old stories over and over again.

When you feel worn out by repetition, it can be helpful to remember these three things:

  1. The person living with dementia is likely trying to create a connection with you through story telling. She is reaching out in one of the joyful ways she knows how: by sharing some of herself or her life.
  2. The person living with dementia likey doesn’t remember he has told you that same story before. To him it’s fresh and new.
  3. Storytelling, conversation and connection are great ways to preserve a sense of self and to get brain cells firing, both of which are good for the well-being of us all, including people living with dementia.

In the powerful video below, Teeepa Snow demonstrates in just a few minutes how to keep conversations going with a short and simple phrase that will create engagement instead of cutting people off and potentially creating ill will and disconnection.

Teepa’s counterintuitive tip? Say: “Tell me more…”

Teepa Snow demos 10 ways to calm a crisis with a person living with Alzheimer’s / dementia

10+ Teepa Snow videos on dementia basics

25 dementia communication quick tips in 4 minutes!

 

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Advocacy, Resources, Toward better care

10 practical actions that foster real person- and relationship-centered care

My Alzheimer's Story

A lot of lip service is given to person-centered care, and often not a lot of it is actually delivered. And some people say we should go beyond the concept of person-centered, and instead focus on relationships.

Whatever words you choose to use, here are some key actions that will help develop care environments in which being counts more than doing:

  1. Know each person, their individual likes and dislikes, as well as their wants and needs
  2. Recognize that each person can and does make a difference, no matter their physical, psychological or emotional state
  3. Respond to spirit, as well as to mind and body
  4. Understand that risk and risk taking are normal parts of life. Risk can never be completely eliminated. Psychological safety is as important, perhaps more so, than physical safety.
  5. Put people before tasks
  6. Do unto others as you would have them do unto you
  7. Promote the growth and development of all
  8. Shape and use the potential of the environment in all its aspects: physical, organizational, psycho/social/spiritual
  9. Practice self-examination, searching for new creativity and opportunities for doing better, and interacting more effectively with those around you.
  10. Recognize that culture change and transformation are not destinations but a journey, always a work in progress.

I drew these from a great article by Marguerite McLaughlin, Senior Director of Quality Improvement at American Health Care Association; the article is entitled Avoiding Institutionalizing Person Centered Care. McLaughlin gives several real-life examples of what is and what is not person-centered care, and makes excellent points such as this one:

“So often, care plans read “redirect” as some generalized marching order — a vague notion to get people with Alzheimer’s disease distracted when instead, it should offer ideas that soothe and comfort, prevention strategies that keep folks from becoming bored or lonely. Oh, and there is so much more that can be said and done within this context!”

Bingo.

is your dementia glass half empty or half full?

13+ needs we share with people who live with dementia

20 paths to dementia care homes away from home

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