Activities, Inspiration, Videos

no, it’s not a trick question, and the proof is in the video

Admittedly there are people out there who insist on wallowing in misery, and seeing the glass half empty instead of half full. They whine and bitch and complain about everything all the time.

Are you one of those? I thought not. I bet you chose “a) dance” just like I did. Yay!

I believe that, given the opportunity, most people who live with dementia would make the same choice. Because just like most of us, they would rather dance than be bored to tears or drugged with antipsychotics and left to sit around like zombies.

But you don’t have to take my word for it; see for yourself:

At a loss for things to do besides dance? Here’s a starter list of 101 activities you can enjoy with someone living with dementia.

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Image copyright: antonuk / 123RF Stock Photo

Joy, Life & Living, Love

my answer to a grandson’s quora question

Quora is a site where people ask questions, and others answer. I’m often asked about Alzheimer disease. One day, I found this request in my inbox.

“I know the basics, that it affects your memory and erodes your personality, but what else should I know? Or can you give me more detail? My grandfather has Alzheimers, and I want to know what will happen.”

There was no way to know how old this grandson was. A teen? A twentysomething? Maybe even in his thirties. Whatever his age, I wanted to try, for his sake and for his grandfather’s, to give him an answer that created more possibility for joy than despair.

Here’s what I wrote:

“I don’t believe Alzheimer “erodes your personality.” In fact, I don’t believe most of the negative narrative out there, which doesn’t fit my experience with my own mother who lived with the disease for a decade. If you want to understand more, there’s stacks of information and personal opinion on my blog. Here are some starter links:

I believe the best thing you can do for your grandfather is to continue to love and respect him for the person he is and will always be. If you open your heart and your mind, you may discover depths of unconditional love you might not have thought possible. It will change you forever, for the better.

On the issue of behavioural changes you may see in him, I suggest you take this survey to gain perspective:

How would you behave?

People are not the disease they have. They remain who they are until the end. Don’t let anyone convince you otherwise. If you look, listen and pay close attention, you will always be able to see your grandfather just as I did my mom; like this:

i see you, i love you, i miss you

If you are lucky, you may get to be with him when he leaves this place for another, like I was when my mother did:

dying with my mom

Those are some of the things I think could be useful to you. You and your grandfather will figure out the rest together as you walk this life path hand in hand, heart to heart. Stay by his side; remember that he always knows who you are in the deepest sense from the very core of his being, even when it may seem he doesn’t recognize you at all. You are his legacy. He is your history. Honour that.”

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Image copyright: bialasiewicz / 123RF Stock Photo

Activities, Inspiration, Life & Living, Videos

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

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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Activities, Love, Videos

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


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.

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Care Partnering, Family, Joy, Life & Living, Love, Memories

7 reasons i visit my mom every day


I wrote this post in June 2015; Mom died on August 17, 2016. I am so grateful I saw her virtually every day for the last four years of her life and lived with her 24/7 the year before that. I will never regret the time I spent with her. Now that she’s gone, I still visit her every day–in my heart.


Some people think I’m crazy to visit my mother every day. Others think I’m a saint. Who knows? Maybe I’m one or the other or a little of both. Then again maybe I’m neither. I haven’t seen any wings sprouting from my shoulder blades, or halos floating above my head. Not yet. I don’t visit Mom every day out of a sense of obligation. I don’t feel I owe my mother anything. It’s not a duty or a chore.

Still, there are good reasons behind my afternoon ritual:

1) it’s joyful for her

Within moments of seeing me, Mom’s demeanour changes. She may or may not recognize me, and it doesn’t matter if she does or doesn’t. She recognizes love. She knows familiar faces. She feels who loves and cares for her and who doesn’t.

When we’re together, she can stand up when she wants to. She can sleep, wake up, talk, or be quiet, if she wants to. She can reach out for someone’s hand and know someone – me – will reach out and take it without expectation or judgment. All those things bring her joy.


2) it’s joyful for me

There’s a lot to be said for receiving, but it tends to be fleeting and superficial. Giving is more joyful, more lasting and more profound. It’s spiritually satisfying and expansive. It’s more of everything that’s good and right.

Mom’s material needs are few; the most precious gifts I can give her are my time and my presence by her side. It brings me joy to see a smile on her face and a light in her eyes, and I take pleasure in exploring the possibilities that life still affords her. This time is a gift.


3) it’s good for her health

Whenever she’s willing and able, Mom and I walk together. Not the same distances we used to, not even a fraction of those.

We shuffle from one side of the room to the other, rest, and then shuffle back. Those 50-foot micro-marathons are a godsend; they keep Mom going. They focus her mind ad her body. They replenish her mentally, physically, and emotionally. They challenge and reward her, make her feel strong, skilled and competent. She takes pride in each step.


4) it’s engaging for her

As her dementia progresses and Mom’s capacity further declines, it’s even more important that she continue to learn, grow and engage life in whatever ways she possibly can.

She needs support and assistance to do almost everything at this stage. But we can still walk, talk, rhyme, read, socialize, sing, sit, laugh, smile and just be together. We’ve crossed many activities off the long list of things to do, but we’re not done yet.


5) it’s a blessing to me

I’m an active and creative person who lives fully on a multitude of levels. I constantly try new things, work at broadening my horizons and seek new paths to greater self-awareness.

When I’m with Mom, everything slows down to “now” time. There’s no yesterday, no tomorrow; there’s only this moment, this minutes, this breath. Our time together complements other aspects of my life experience. It’s simple, enriching, and impactful.


6) it’s the right thing to do

If I didn’t, who would? There are millions of elderly people living in hospitals, nursing homes, assisted living facilities, alone in their own homes or on the street who go for days, weeks, months, sometimes even years without visits from “friends” or family.

What a tragedy. What a travesty. All that isolation and loneliness. All that wisdom gone to waste. All that potential happiness unrealized. My daily visits with Mom are a drop in the bucket, but they contribute in some small way to righting that enormous wrong.


7) because I can

My destiny has unfolded in such a way that I’m free to be in this time and place, my unknown destination for the moment. I’m lucky to have the financial, physical and emotional resources to be able to live near where Mom now resides. Some people live far away from their parents. Some are unable to watch them die. Some suffer broken relationships. Some are bitter and twisted. I have removed the barriers that might have prevented us staying connected during the last chapter of our lives.

I choose to make time to spend with my mother because it means a lot to both of us. I choose to be with her simply because I can. Life is fleeting. Hardly even a speck in time, smaller than a grain of sand, barely a whisper in the wind. One day soon Mom will be physically gone.

I will miss her then. It would be a shame to also miss her now.

Note: I first posted this on June 7, 2015. Mom died a little over a year later on August 7, 2016. I have no regrets; I couldn’t have done any more than I did. Our time together in this place had a purpose which I continue to fulfill.

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Care Partnering, Music, Resources, Tips, tools & skills

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

060808-georgeville-flower-win just flowers

If you’re at a loss for things to do with someone who has Alzheimer’s disease or another form of dementia, you needn’t be. The possibilities are endless. Almost ANYTHING can lead to engaging life when you are present in the moment. Open your eyes and your heart to really being in a space and doing activities that bring you both pleasure.

A person with Alzheimer’s disease can take you back to old places and fond memories as well as to new places you never dreamed existed. All you have to do is open the door to their world and step through the threshold together. Remember to be curious and childlike. Rediscover how exciting exploration can be. See magic and possibility instead of tragedy and limitations. I have enjoyed doing a whole slew of activities with people with dementia at all “stages” of the disease.

Here are five things you can do when your loved one is still at home, and five others that may be more appropriate when he or she is in a care facility; anyone else can do them too (a PDF of 91 more is at the bottom of the post):

1) Arrange Flowers

In summer, we picked wildflowers together and used many of the beautiful vessels and vases at our disposal  to create stunning arrangements. In winter, I bought a couple of bouquets at the local grocery store on Mondays when they were on sale and re-arranged them several times through the week.

2) Solve Puzzles

I bought a BIG-piece puzzle of Canada and set it up on the dining room table which we rarely used for eating. The puzzle sat there at the ready whenever we felt like working on it. This was a great activity we did over and over again for about eight months until it became more frustrating than enjoyable.

3) Walk

The need for exercise never ends, especially for people who are active and sporty. People with dementia don’t lose the ability to walk until late in the disease so we walked every day come rain, snow or shine.

The benefits of exercise for human beings and animals of any age are well documented. Exercise burns calories and excess energy and has a calming effect. It helps sleep patterns and improves attitude. There’s no downside.

4) Bake/Build

Making and giving away baked goods is something many women enjoy doing – whether they are young or old and whether they have dementia or not. As the diseases progresses people with dementia may need more help, but they still take great pleasure in the process as well as the results.

I find it helpful to get out and measure all the ingredients before we start to mix things together. Putting each ingredient away after it’s added is a good way of tracking what has been done.

Men may be more accustomed to woodworking, “fixing,” or doing DIY chores around the house. Use the same “baking” principles to help them feel useful.

5) Fold

At a certain point in the progression of the disease many people with dementia take to folding whatever is at hand – napkins, tissues, dishtowels, papers, newspapers, etc. Folding often had a calming effect on my uncle for example even though he often did it it in a somewhat compulsive way. You may find yourself supervising the folding of lots of laundry!

When you visit your loved one in a care facility, there are still many activities to enjoy together.

6) Sing

Singing can be done anywhere, anytime and is such an uplifting activity. I learned many old favourites and have spent hundreds of hours enjoying informal singsongs with people who have dementia. We burst into song whenever the mood strikes us.

7) Play music

With the help of a healing music coach PWD may “learn” how to play the piano and other musical instruments. They often enjoy keeping the beat with percussion instruments as well as their hands and feet.

I have sung literally thousands of songs during hundreds of hours of healing music sessions the joy of which I sometimes find hard to put into words. I’m so grateful for what I learned as a result of these musical miracles.

8) Count

One person living with dementia surprised and delighted me by counting the chimes when her old antique clock struck the hour. It inspired me to string some colourful wooden beads on a shoelace. She spent lots of happy hours counting the beads as she moved them back and forth along the string while I encouraged her.

9) Walk some more

I encourage you to walk with your PWD every day and to encourage them to exercise in whatever way they can. While the ground  you cover may be a tiny fraction of what you had been used to, it’s even more important to a person’s overall health to stand up and move around was the disease progresses. Help your loved one achieve her or his goal to keep going as long as she or he can.

10) Socialize

Socializing and being included in conversations is a great blessing to people with dementia.

Your choice of activity should accommodate the capacities of those involved, the mood of the moment, personal preferences, physical considerations, the environment, available resources, etc.

The important thing is to do something that stimulates, engages and is fun for the person with dementia as well as the care partner who doesn’t have dementia.

Here’s a PDF of 101 “starter ideas” I recreated from an Alzheimer’s Association post: 101 Activities Dementia Care Partners Can do Together

Of those listed, I have done at least half. I’ve also done some not on the list, which I intend to share in the future. Stay tuned! Another great idea is to plan weekly outings to a local club or activity center purpose-built for seniors. Find tips about that here.

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Care Partnering, Life & Living, Love

one step, two step on the way to tea

Flashback April 29, 2015: “That’s it Mom, you’ve almost got it,” I encourage her. Her left leg is crossed over her right at the knee. She’s leaning down and working on her left shoe. She makes a loop and then another, twists them together and tries to feed one through the other. I watch in wonder and hope she’ll manage to make it happen this time. She ties her shoes differently than I do. I ask myself how that can be. She makes another attempt. Misses the last step for the fourth time. She’s SO close.

“I almost got it,” she says.

“You want to try again?” I ask.

“Yeah,” she says. “Do you want to try?” That’s my cue. I sit down on the floor in front of her, and grab the laces that now lay limp on either side of her shoe.

“The left one is much shorter than the right Mom. Maybe that’s the problem.” I loosen, tighten, pull, loosen, tighten, pull until the ends are equal. I tie a bow, and make another knot with the loops to stop it from coming undone.

“I can smell one next, but it doesn’t rain,” she says. “Are there any?”

“Yes, there are,” I answer in flow. “Do you want to try walking now?

“Okay,” she says. I get up; take her hands in mine. They’re soft and trusting. We’ve done this hundreds of times. She knows the routine.

“Ready?” I ask, knowing she is, but asking anyway.

“Yeah,” she says.

“One…” I start counting slowly.

“Two,” she follows after a slight delay. I match the length of her pause. “Three,” we say in unison.

“Stand up Mom.” I counterbalance her weight with mine and leverage her to her feet. She stands easily today. Once she’s up, we wait. When she feels secure and comfortable, she’ll try to move her right foot. She always starts with the right. It’s the shakier one. The first few steps are tentative. It’s like she’s trying to remember how to put one foot in front of the other. Her head is tilted and forward; I see the top of it. I imagine her eyes are fixed on a spot somewhere near my belly button. Our goal is a sofa in the drawing room across the hall; it’s about 40 feet away. We begin our two-step shuffle.

“You’re doing well, Mom,” I say. “How are you feeling?”


“Are you able to walk okay?” I check in again after 10 feet.

“Yeah.” She confirms. The old wooden floorboards creak underneath us. It’s a friendly, comforting sound. Old houses are like people, their souls remain intact even when they’re worn out and cobbled together. I stop and bend my knees until my head is below hers so I can look up into her eyes. We used to be the same height, but she’s several inches shorter than me now.

“How is it? I check in once more.

“It’s okay. There are chairs close by on either side: our safety net.

“You wanna keep going?

“Yeah. A little bit.” We’re more than halfway now. I stop again, release my right hand from her left and point to the far end of the room.

“Mom, we’re aiming for that sofa over there.”

“Oh, the sofa.”

“Yeah, can you make it?”

“I think I can try,” she says. Her voice is firm, strong. Five simple words capture her fierce spirit. We walk another five feet or so. Her breathing has become slightly rapid and labored, like mine does when I go for a run by the lake.

“Are you okay?”


“Do you want to keep going?”

“Well yeah, but not too much.” She has a good handle on what she can and cannot do, even at this late stage.

“We’re almost there Mom.”

“Oh dear.” A note of worry; I stop.

“We’re going to rest for a bit Mom.”

“Okay.” I feel her hands relax. We’re a pair of connected human statues. We breathe.

“Are you okay?”

“Yeah, I’m okay.”

“We’re going to rest for a little bit, okay?” I repeat to reassure her. We resume our journey when the time is right.

“You’re doing beautifully Mom, just beautifully. We’re almost there.” She says nothing. She’s focused on her feet. We reach the sofa. Turning around is not as easy as going straight. I help her to pivot in little increments, lower her gently onto the sofa, and then squat in front of her to get into her line of sight. Her hands remain in mine. I look directly in her eyes. They’re clear.

“You did it!”

“I did it!” Her face is slightly flushed, bright and alive.

“How does it feel?”

“Felt good.” Yes it did. Like her, I felt it in my core. I fetch us both a cup of tea. Mom has a chocolate covered cookie with hers. I don’t have a cookie; joy is more than enough for me.

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Care Partnering, Challenges & Solutions, Resources

21 items on our dementia “no longer” lists


Purple/pink Gerbera daisies enjoying spring by a window
Purple/pink Gerbera daisies enjoying spring by a window

Dementia care partnering involves ample give-and-take, and even more important, a lot of letting go.

The more the care partner who does not have dementia can free themselves of unproductive thoughts, feelings and behaviours the easier it is on everybody. We must be sensitive to the fact that the capacity of a person with dementia to use logic, reason, and common sense may decline as the disease progresses. That doesn’t mean their humanity diminishes or that they become any less a person. It simply means their abilities differ from ours. It’s up to us to adjust our behaviour to fit theirs to reduce stress and anxiety, as well as to enhance communication, connection and well-being.

I belong to about a dozen great Facebook dementia caregiver support groups. Cheryl Morris Siciliano, one of the members of “Memory people” posted a list of the things she had let go of in the process of caring for her parent who has Alzheimer’s disease. Her “no longers” generated hundreds of comments from people who agreed with the importance of letting go of stuff that isn’t useful.

Here’s Siciliano’s list:

  1. I no longer have to be right about anything
  2. I no longer insist on matching clothes
  3. I no longer try to explain everything
  4. I no longer cry in front of Mom
  5. I no longer correct her
  6. I no longer apologize for her actions
  7. I no longer mention outings or parties more than a day in advance
  8. I no longer think I am the only one in this battle
  9. I no longer get mad or frustrated
  10. I no longer try to control her spending
  11. I no longer question
  12. I no longer feel guilty
  13. I no longer feel bad about the past
  14. I no longer fear her
  15. I am no longer uptight

.Others added:

  1. I no longer feel the need to be truthful about the loved ones who have passed on
  2. I no longer care about what others think or say

I would tack these on:

  1. I no longer feel bad if s/he says hurtful things to me
  2. I no longer care if s/he recognizes me
  3. I no longer worry about tomorrow
  4. I no longer wish s/he were someone other than who s/he is

Do you care for someone with dementia? Or have you in the past? What do/did you no longer do to make your life and the life of your care partner more joyful and less stressful?

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Family, Love, Tips, tools & skills

50 ways to love your mother

Mom and I November 11, 2014.

I’d been a daughter for 60 years when I wrote the list below with the help of friends and followers. You’d think I would have been and expert at it. Nope. I was still learning. Still exploring. Still discovering what it meant to me. The previous 10 years had changed the way I thought about daughterhood.

I asked friends and followers to share what it meant to them to be a “good daughter.” The diversity of their responses reminded me how individual our paths and relationships are. Inspired by their thoughts and Paul Simon’s tune 50 Ways to Leave Your Lover, I created a list of 50 Ways to Love Your Mother.

It would seem there is no one right way to be a good daughter. Only we can be the judge of our relationships.

50 Ways to Love Your Mother

  1. be caring, sensitive, and aware
  2. do well in school, don’t get into trouble with the law, stay clean and sober, don’t “sleep around” or have children out of wedlock
  3. know your daughterly duties and responsibilities
  4. question everything and be a rebel; question nothing and be a conformist
  5. keep in contact when you’re away
  6. do all you reasonably can lovingly
  7. take care of her when she’s sick
  8. understand her humanity and your own
  9. respect her wishes
  10. respect yourself
  11. advocate for her if she can’t advocate for herself
  12. do little things for her
  13. ensure she has good food, good shelter and good clothing
  14. care for her out of love, even when it’s not easy
  15. take what she taught you and build on it to become an extension of her with your own dreams, aspirations, and desires
  16. become a beautiful friend as well as a daughter
  17. stay close by her side to help her as much as you can
  18. travel far and wide to seek and find your own fortune
  19. be a good person
  20. understand neither of you is perfect
  21. forgive her and yourself
  22. grow into the person God meant you to be
  23. follow your heart’s desire and your dreams, and never forget who birthed you
  24. make her proud
  25. stick up for yourself and defend your rights
  26. stick up for her and defend her rights
  27. follow in her footsteps, replicate her life
  28. avoid making the same mistakes she did, lead a life unlike any she would have dreamed possible
  29. do stuff with her that brings her joy and pleasure
  30. protect yourself, even from her if need be
  31. know when to walk to away and know when to stay
  32. practice patience; practice more patience
  33. give her love and support when she needs it
  34. visit her regularly and spend quality time with her
  35. conquer your  fears
  36. share your joys and sorrows, laugh and cry with her
  37. speak your mind
  38. heal your wounds
  39. listen, listen, listen to her
  40. think, think, think for yourself
  41. see and appreciate her for who she is
  42. love yourself because of yourself and despite yourself
  43. be loyal and compassionate
  44. eat sensibly, call home and drive carefully
  45. be your own person; have your own life
  46. be a good girl; be a bad girl
  47. live purposefully and do your best
  48. get up and keep going after you fall or fail
  49. hold her hand when you cross the road
  50. tell great, funny and touching stories at her funeral

This is by no means an exhaustive list. What would your mother’s list for you look like? What would your list for your daughter(s) look like?

Thanks to these daughters who collectively have about 1,000 years’ experience as such for sharing their thoughts with me:

Sally M, Belinda B., Joan L., Tami Beth L., Alice J.D.Y., Mona N. Rosario V.B. Wyld H., Kathleen M., Sheila S., Helen J. M., Mary M., Joan L., Kathy B., Glenna C., Suzette S., Edith R., British D.S., Alice J. D. Y., Jan R., Kim A. S., Denise A., Siempre M., Stephanie R. J., Alison R., Rebecca B., Beverly D., Suzette S., Sally M., Kathy B., Debie O., Carolyn T., Molly C-K.

Thanks to Tami Beth L. for this particularly touching story. And oh yeah, thanks also to Paul Simon for helping us in our struggle to be free 🙂

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Joy, Life & Living, Love, Memories, Toward better care

if you think they don’t know think again

Sally* reads a book with Mom
Sally* often read books with Mom

July 14, 2014: Mom is at my place for dinner on July 14, 2014, partly because I feel awful leaving her in an environment that causes her to become anxious, partly because her one-on-one care has been scaled back to nine hours per week from thirty-five (about a quarter of the dedicated care she’d previously had), and partly because she and I enjoy each other’s company.

Mom is happier and more engaged when she is with me or a companion who helps her get up and walk around, guides her through mealtimes, sings with her, chats with her or just sits with her in silence. Nursing home employees don’t have time to deliver that kind of care; the ratio of caregivers to residents doesn’t allow it. In fact, many aspects of dementia care are inadequate worldwide.

Furthermore, some people think it’s okay to deny people who live with dementia small pleasures because they seem not to be aware of what’s going on around them. Some people think it doesn’t matter how we treat people who live with dementia because they often forget everything the next minute. But they are aware, and it does matter, and some things are felt and remembered deeply even if they are superficially forgotten.

It’s true people who live with dementia are often confused and have difficulty articulating, but that doesn’t mean they don’t think and feel and have awareness. My Mom does, even in the advanced stage of the disease. I’m sure the same is true of many other people who live with dementia. If you think they don’t know, think again! Most of the time Mom talks in what seems like gobbledegook or she parrots what someone else says. That’s her way of engaging with others, of being in community. Sometimes it’s clear she knows exactly what she wants to say, but she struggles to find the right words or to get a complete sentence out.

Yet, despite the medication she is being given and the late stage of her disease, Mom is more aware than she is given her credit for. I hear it in what she says. I see it in how she behaves. I also observe the effects of anti-psychotic medication on her, and I know how much more alive she is when the medication wears off. She is there and she counts, even when others count her out.

Likewise, there are breaks in the clouds when she becomes lucid and articulate. Tonight, she is astonishingly present. We talk of many things, including Sally, her one remaining one-on-one caregiver. I cry tears of sadness and frustration over the tragic fact that instead of being increased, Mom’s one-on-one care has been reduced. She comforted me, we laughed, and in the end we agreed it’s better to cry together than alone:


I’m grateful to have conversations like these with my mom, and even more so that I record them so I will be able to replay them when she’s gone. I hear the wisdom she retains despite the disease, and know without a doubt that her fierce spirit will be with her until the very end.

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