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“One of the things we teach our caregivers is to take time to be silly or even just to sit quietly. Sometimes we like to make silly faces with our residents or even take selfies. Being silly can be a great redirection tool to get a resident or family member out of a negative mood or a sad day. Try it and let us know if it works for you. And smile. Always.”
“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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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:
Here are some of the benefits thanks to Ann Catlin, and AGEucate (watch the short slide show below for more information):
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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/2017/09/11/flute-flies-love-taps/
“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:
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.
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?)
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.
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.
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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Isn’t it amazing that many animals know intuitively what some humans seem unable to learn or unwilling to apply?
Here are a few person-centered dementia care partner tips inspired by a viral video of two friends taking a walk:
1) Do stuff they like, together
2) Focus on capacities
3) Adjust your pace
4) Be supportive
5) Be patient
6) Exercise
7) Love
This is what eldercare should be about: dancing, moving, engaging with life. It should NOT be about being drugged for convenience, and physically restrained in reclining chairs in front of daytime TV.
Not much else to say really. The video speaks for itself. That may be why, when it was first posted in April 2016, this joyful clip was viewed 26 million times in 12 days: proof that people want person-centered care!
There are no rules in dementia land. Care partners on both sides of the equation never know what’s in store from one minute to the next — which is ideal for implementing the principles of imrov!
Here are some guidelines based on the loving, funny and magical work of Karen Stobbe and Mondy Carter:
The simple act of deleting the word “but” from your vocabulary delivers amazing results. It creates connection and positive momentum by getting the ball rolling forward. The purpose is to stop the “no’s” because “no’s” stop the flow (see below!). Plus, “Yes, and…” validates rather than denies. It’s a platform for empathy.
More on agreeing here and on never, never arguing here. Pay close attention to the part in the video below about how often people with dementia are on the receiving end of “no’s.” I hear a chorus of “no’s” wherever I go; it breaks my heart and, more important, the hearts of those who are the recipients.
Being a care partner to someone with Alzheimer’s disease or another form of dementia is like life itself – sometimes tragic, sometimes joyful. Learning to accept the ups and downs of the roller coaster ride makes it all a little less frightening. It’s also important to accept responsibility for defusing potentially difficult situations; more about that here.
Being more specific in improv involves being more descriptive and giving more detail. This can also be helpful when communicating with somebody who lives with Alzheimer’s disease or another form of dementia, especially when guiding them through a process sequence. Slow down, be clear, check for understanding.
Listen with more than your ears. Use your eyes, your heart and your mind. Learn to look behind behaviour to discover what a person with dementia is trying to communicate by their actions. Listen to their behaviour–it may say a lot more than their words ever will.
Don’t try to pull the person with dementia into your world. Doing so denies theirs, and often ends in conflict. Stepping into their world is a springboard into something positive rather than a spiral into somehing negative. Where would you rather go? Up? Or down?
Going with the flow turns the next moment into an adventure rather than something to be feared. It helps to create a new “story” full of possibility. Watch your partner’s eyes light up when you embrace her or his idea and run with it – what a joy! More here with the “G” in BANGS.
I’ve spent countless hours with my dementia care partner holding hands, watching birds at a feeder, looking out at a field, simply being together in silence. Quiet times can be as engaging as activity, and silence provides space for possibility if you let it. Remember the “pregnant pause?”
When you’re there, be there. Commit fully to the idea at hand and use your imagination to make it as rich and alive as possible.
Pay attention. Feel your feelings, whatever they might be. Empathize with the feelings of your care partner who lives with dementia, whatever those feelings might be in any given moment. All things pass soon enough.
I know these principles work because I’ve used them myself. They are simple, powerful and fun.
You don’t need any special training, equipment, or skills. All that’s required is an open mind, the will to try and a little bit of practice.
This short video by Karen and Mondy shows some “how to’s:”
101 Improv Games for Children and Adults
Improvisation for the Spirit: Live a More Creative, Spontaneous, and Courageous Life Using the Tools of Improv Comedy (a great resource; highly recommend it)
Music is an extraordinarily powerful dementia care tool; and there are many ways to use it.
Here are 10 “do’s and don’ts” to help you bring music alive for people who live with dementia:
Remember music can be enjoyed in a variety of ways. It could be “piped in” to an entire facility, like it is in many public places such as grocery stores, or restaurants. It could be played through TV, radio, headphones, or delivered live in group sessions or one-on-one. Choose the channel that’s most appropriate for the person, the environment, and the situation.
We all have genres of music that we enjoy from classical to country, from opera to hip-hop. Music is individual as well as universal. Find out what kind of music your client, resident, or loved one living with dementia most enjoys and play it for them.
Use music to create the kind of mood that’s appropriate for the time of day, the moment, and the activity. Select something light and upbeat to get people “up and at ‘em” in the morning, and something soothing and quiet before bedtime. Be aware that the volume is also important – music that’s too loud may create more anxiety rather than it reduces.
My musical repertoire has expanded exponentially since I became a care partner. I’ve learned tunes I never knew existed and am now able to sing along to Louis Armstrong, Nat King Cole and many more. Knowing the music your care partner loves is a powerful way to connect.
Music can do much more than calm, comfort and create a better care environment. You can also use it to help take the challenge out of challenging situations and/or encourage people to follow instructions. Here’s an example from music therapist Rachelle Norman of Soundscaping Source:
Listening to beloved music elicits emotions. Hearing a song that was played at a wedding or a funeral might cause us to feel happy or sad. Certain music is associated with different times and events in our lives. Even when the memory of those times and events is gone, the emotion remains. People who live with dementia have feelings just like the rest of us. Remember you will be touching hearts with your choice of music, so it’s important to choose wisely.
The only time I ever sang before I became a care partner was in the shower or the car where no one could hear me. I can’t carry a tune in a bucket! But I’ve learned to overcome my shyness for the sake of the pleasure and calming effect that singing together has on my care partner who lives with dementia. In the process, I think my voice may have even improved 🙂
There’s been a lot of publicity around the movie Alive Inside, and the power of using iPods to deliver music to people with dementia. There is no doubt that a personal playlist, an MP3 player, and a set of headphones can bring hours of joy to someone who lives with dementia. But technology isn’t the be all and end all. Singing doesn’t require an iPod. You don’t need a musical instrument to make music. Use your voice. Clap your hands. Stamp your feet. Create a rhythm. Use a rhyme.
Just because a person is no longer verbal, doesn’t mean they cannot still enjoy music. In fact music may be one of the most powerful ways of communicating with someone who has completely lost their language skills. I’ve seen people living with dementia in nursing homes slumped in wheelchairs and apparently asleep begin tapping their feet to the rhythm of favourite songs during group sing-alongs.
They say the sense of hearing is the last to go. Music can be a wonderful way to bring comfort and solace to people during the last weeks, days, and hours of their lives. It can help life end on a positive note despite pain, grief and loss.
https://myalzheimersstory.com/2014/06/16/5-things-i-never-knew-until-i-sang-with-my-alzheimers-mom/
https://myalzheimersstory.com/2017/02/12/alzheimer-disease-helped-my-mom-play-the-piano/
https://myalzheimersstory.com/2014/02/13/pinkie-patti-plays-alzheimers-piano/
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March 9, 2016: Wendy Adams’ mom Irene, who is in the early stages of dementia, was having some balance problems.
Wendy and her mom’s physiotherapist Jacob, who made twice weekly visits to the elder Adams’ home for several months, came up with a novel idea to help address the issue: bubbles!
Jacob blows the bubbles and Irene pops them, thus killing a whole bunch of birds with one stone: balance practice, arm exercise, hand-eye coordination, engagement, laughter and FUN!
“It’s been awesome watching the change in Mom with Jacob around,” Wendy wrote me in a Facebook message. “She told him yesterday that he should consider a career in home healthcare! Mom enjoys bursting Jacob’s bubbles and she loves Jacob to death. What a blessing it’s been to have him.”
The number of activities that can be enjoyed with people who live with dementia is virtually limitless. Coming up with ideas just takes a little imagination and an open mind.
Watch Irene and Jacob for inspiration, and then get started with the 101 activities here:
Thanks to Wendy, Irene and Jacob for reminding of the joy of blowing bubbles ❤
https://myalzheimersstory.com/2014/06/16/5-things-i-never-knew-until-i-sang-with-my-alzheimers-mom/
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Take my short survey on behaviour here.
Photo credit: Copyright: stockbroker / 123RF Stock Photo
My Alzheimer's Story 
I love the quote from the “old man” towards the end of the video below. He says:
“When people start stopping, that’s when they start getting old.”
I think the same principle applies to people who live with dementia. I also believe that by “getting to know” people who live with dementia, and understanding who they really are, we can change the negative narrative associated with Alzheimer’s disease and related dementias (ADRD) as well as those who live with diseases that cause dementia.
We need to think differently about what it means to live with ADRD, just like the young people in the video change their thinking about what “old” is by experiencing what “old” people can do, and also by learning from them.