Tag Archives: dementia-related diseases

The 7 A’s of Dementia – Apraxia

Whatever you accept completely will take you to peace, including the acceptance that you cannot accept, that you are in resistance… E. Tolle (Stillness Speaks)

Apraxia is the loss of ability to initiate purposeful movement. Individuals with apraxia may also have trouble understanding terms such as back, front, up, down. As a result of these losses, it becomes difficult to do things such as tying shoelaces, doing up buttons and zippers, and any activity involving co-ordination. When we lose our abilities to remember the sequences and patterns of movement, it results in the eventual inability to co-ordinate hand and leg movement necessary for specific activities, such as driving.   Apraxia definition from http://www.alzheimer.ca/en/on/About-dementia/Dementias/what-is-dementia/Seven-A-s-of-dementia

There is a sequence when we complete a task or chore – a natural order. Unfortunately, persons with a dementia lose the ability to remember and to understand the sequence and order of things – they become unable to discern the steps or sequence of a task.

They also are unable to attend to the task because they lack focus. This lack of focus (and lack of understanding the steps or sequence when doing a task) will upset or anger the person with a dementia.  Frustration follows. Often the person will refuse to do the task or interrupt or walk away from the chore while in the middle of it, simply because of their frustration. Frustration sets in because they cannot understand why they cannot do the task or remember how to do it. Often the person with a dementia just wants to “save face,” so they walk away or they begin to exhibit aggression, combativeness, anger, etc. We wrongly assume (especially in the middle and later stages of dementia) that a person with Alzheimer’s doesn’t feel embarrassment when they make mistakes – wrong! They are embarrassed and often will feel shame. They are aware that something is wrong, but they do not recognize what is wrong or how to fix it. Often this is the underlying reason that they become aggressive or angry.

My mother would often rail at us when we tried to help her dress or brush her teeth. She would insist, loudly and persistently, “I can do it myself!” Many times when we took her to the bathroom, she argued that she didn’t need our help, when so many times, she clearly did!

In time we learned to step away  and just allow her space. Often she forgot in the middle of attempting to find her day clothes in the dresser, why she was rummaging through the drawers. She would move away from the dresser (and leave the drawer wide open) and begin to do something else. Other times I would put her jacket on the bed and she would just stare at me. She clearly was unsure of what to do with the jacket.

Or, we would take her into the bathroom and step aside –  she would turn the faucets on, let the water run, and run, and run. Without either brushing her teeth or washing her face, water still gushing, she would turn her wheelchair away from the sink and announce, “I’m ready.” Brain cell damage prevented her from following through these simple tasks. She would be completely unfocused.

Behaviour management strategies should include space and dignity, but unfortunately most staffs are too busy and short-handed to allow this. Instead, they hurry through their daily tasks and residents become anxious.  When we allow the resident with a dementia, time and space (without the sense of urgency), we allow the person to maintain his dignity. When the person with dementia becomes distracted or forgets the task, we simply step in and continue to complete it for them, without any judgment on our part.

When my sister and I cared for our parents, we learned many tricks to ease the day-to-day care. My parents shunned our help and support, especially with the daily tasks such as dressing and bathing. Instead of arguing each day over simple tasks, such as dressing, we tried to simplify things. We learned to arrange clothing items  in the order of getting dressed: underwear (first), top or sweater, pants,  socks; lastly, shoes or slippers placed next to the bed. Otherwise, you will notice that the person with a dementia will attempt to put on socks over the shoes, or simply not wear socks. Or, you might notice that they will put on slippers to go outside. Or, the shoes are on the wrong feet. Or, not wear a coat or warm clothing for cold weather.  We need to understand that someone who has apraxia may recognize the item, but really have no idea what to do with the item. I once gave my mother a Kleenex when she was sneezing, and she took it, stared at it blankly and then threw it up into the air and watched as it fell to the floor. She then continued to stare at it as if she had never seen a Kleenex before. (I remember watching her face with total fascination.)

So how can we help when we recognize our loved one is unsure of completing a task? Calmly (without any judgmental commentary, please) step in and begin to give how-to instructions – one step at a time. Slowly introduce the next step in sequence, but only once the previous step is completed. Keep in mind that persons with dementia can focus better in a calm, quiet space; therefore, distractions, noise, or too much chatter (your running commentary) are not helpful.

“Mom, here is your sweater…put one arm into this sleeve first.”

My mother liked to talk and would often become distracted as soon as a second person came into her room. It didn’t matter if she was drinking her beloved tea, eating a cookie, combing her hair or putting on a warmer sweater. The moment she noticed another person in her room, she reacted. She became curious and completely forgot what she was doing, or she became angry and confused,”Why is that person in my room?”

Before my father died, and while I cared for them both full-time, I once was in a grocery store with my mother, helping her shop. (This was before we realized that she had any dementia.) She did not have a shopping list. (That was a clue, my friends. It takes planning and thought to prepare a grocery list.) When we walked into the store, I explained that we would probably need fruit, vegetables, bread, rolls, and cereal.

Since the fresh produce was in the first aisle that we approached, we began to shop. I asked her what fruit did she want to buy. She didn’t answer. Instead, she perused the fruit bins, picking up item after item. After I realized that we had spent nearly five minutes in the store, and had yet to choose an item, I suggested bananas and peaches. She agreed. We went to the vegetable bins and she just stood there. I suggested a cabbage, some carrots, onions and lettuce. She agreed. This hesitancy continued in each aisle. Finally she announced she would like cereal and that she didn’t need my help, so I left her in the cereal aisle and continued shopping. After ten minutes I realized that she had not met me at the front of the store. I went looking for her and she was still in the cereal aisle – and had yet to make her choice.

Now that I know what I know (when you know better, you do better – Maya Angelou) I know that she wasn’t just fatigued or stressed (and that is why she took so long to make her decisions), but that my mother was showing one of the many early signs of dementia – lack of focus and inability to follow the steps or sequence of a task. She no longer made grocery lists because she couldn’t focus on how to complete them. She couldn’t make a decision, because that was a skill that she had lost.

Not all persons with Alzheimer’s exhibit all the seven A’s of dementia. In fact, without a brain scan, it is difficult to determine which areas of the brain are damaged.  Different areas of the brain cause different symptoms of the disease.

For me, I did not care if my mother exhibited any of the  A’s of dementia, as it only mattered how I reacted to her behaviours.  If I gave my mother her lipstick and she smeared lipstick across her cheek instead of her lips (which she did on multiple occasions), or if I handed her a hairbrush and she used it upside-down, well, I tried not to over-react and correct her actions. (I wanted to! God knows, the first time that she smeared lipstick (bright red!) across her face, I nearly gasped out loud.) Instead, I learned to calmly take the brush out of her hands, re-position it in her hands, and say, “Let’s try combing your hair this way.”

I tell you this story so that caregivers can understand that persons with dementia will exhibit different symptoms, but that these symptoms should not scare us.   Because in understanding their behaviours and the reasons behind their actions, we allow the seeds of compassion to take root. Compassion changes everything.

At the end of the day, when caring for someone who has Alzheimer’s or any dementia-related disease, we all need to let go of our need to control, and we need to let go of our expectations.

We all need to show more kindness and compassion and allow our loved ones to just be – allow them dignity and space.

I believe that compassion, dignity and space will transform our own personal energy because our energy will be based on acceptance. Persons with Alzheimer’s or a dementia-related disease will feel our loving energy, in spite of the disease, and they will understand that they matter to us, disease or not.

The disease may diminish their quality of life, but our actions and our reactions to this disease will determine how we (together) spend our remaining days.

Let our journey with our loved one be one of peace and acceptance, not struggle and judgement.


Apraxia definition is taken from http://www.alzheimer.ca/en/on/About-dementia/Dementias/what-is-dementia/Seven-A-s-of-dementia



Why continue to blog?

For the past few weeks, I have not blogged much. An intended short respite from blogging became a two or three-month break.

Since my mother (and my father) have passed away, and I no longer care for parents with Alzheimer’s, I have struggled with my new blogging role. Yes, I still blog about people with Alzheimer’s or a dementia-related disease, but I also am finding that I return over and over again to the topics of mindfulness, awareness, creativity and expansiveness.

I wonder if I am defining myself as a carer, when I clearly no longer am a carer. That part of my life is over.

I have friends who think I volunteer at the long-term care facility where my mother lived for more than two years for the sole purpose of hanging on to my past. That is, they wonder if I am still clinging to my role as carer for my mother and father when they had Alzheimer’s.

They make a valid point. When a person’s role in life is a full-time caregiver, it is natural and human to feel a loss of identity once death ends that role. I understand that.

My friends mean well. I know that.  But when I listen to their words of concern, I always counter with I am where I am supposed to be.

I know this without any doubt.

How do I know? Because when we are doing something we love, we feel such joy. I visit the residents who have Alzheimer’s or other dementia-related diseases (and some do not have any diseases – their bodies are just slowly breaking down) and I receive many gifts from them. They teach me patience, wisdom, strength, compassion, generosity and more. I find myself laughing out loud to their insightful remarks or clever retorts; yes, Alzheimer’s does not rob them of humour and laughter.

I have learned to pay attention and listen more. (To listen is my 2016 intention.) I have honed my mindfulness practice. I have learned to just go with the flow – not to take things personally or to react when a resident screams at me or turns on me. I quietly respond or I walk away and find a personal support worker. (My cardinal rule is: I am not here to fix anybody or cure them.)

And I have learned to stay in the present moment – to give up expectations. Expectations is about living in the future.

And I have learned that impermanence is the only constant in life, and while I still dread death and disease just as others do, I am accepting change more easily. Living in the now and being filled with gratitude eases my fears.

So, when I think of my volunteer work I know that I am living a purposeful life – one that I would never have realized if it were not for caring for parents with Alzheimer’s.

My past journey has led me to this new journey. And so I have learned to trust life, even in my darker moments.

Many years ago while watching television,  I heard a group therapist say,

“Every time you tell your story, you give away a little piece of the pain.”

According to this therapist, telling our story (owning up to it, accepting it, and saying it out loud) is the basis of healing.

When I volunteer at the care facility and visit with the residents, I am capturing a little piece of each of them. With luck, I will have a better understanding of who they are now and who they were in the past. I have found that the more they learn to trust me, the more they are willing to open up and share their story. And when they share (even a small chapter of their life), I can visibly see the impact on them: they relax, they smile, they sigh, and sometimes they shed a tear. I have learned that everyone wants to be heard. And to know that they matter. It’s universal. And I have learned that when we are listened to…we heal.

When I sat and recorded, and later transcribed, one of the residents’ life story, I was struck how much I became connected to this woman after I learned of her story – where she came from, how she got to Canada, how she built a life and family here; her sorrows, and her joys. I felt such a connection to her when we finished her life story. And still do. I rarely miss an opportunity to visit her when I volunteer. And I know (because she has told me) that she feels the same connection to me. I am grateful.

When I visit the residents, I hope that each of them knows that they matter just as they are. Many of them are at the end of their journey – they are in the last innings of the game (as my baseball-loving husband would say). The last stages of the residents’ lives are as important as the last innings, albeit for different reasons. Last innings are about last chances to win the game. In life, last stages are about reconciliation, forgiveness, and peace. On second thought, perhaps not so different, as peace is a powerful win.

I have a hope or an intention that everyone can understand Alzheimer’s with more compassion and kindness. It is such a misunderstood disease; no wonder because it is complicated, complex and incurable. It is mysterious: Why do some have severe personality changes, and others do not? Why do some become violent and angry, while others recede and become quiet? Why do some talk more (in early stages), while others fidget and cannot sit still? Why are some residents (seemingly) normal during the day hours and yet affected by sundowning during the evening hours (their moods swing or they become cognitively diminished)? Our brains are not one-size-fits-all.

That just scares the hell out of all of us. So we cringe when we even just hear the word dementia. My mother used to react to the disease cancer in much the same way.  She would lean into my ear and whisper,”the C word.” Strangely enough, even with Alzheimer’s and living in a long-term care home, she would whisper to me, “Poor man. He has the C word.” Bizarrely, she didn’t realize that she, too, lived in the same place that he did, with another disease that people whispered about.

So I write about my experience with caring for parents who had Alzheimer’s in this blog. Not because I am an expert; not because I have any answers. My journey was difficult and I struggled with it.  But I had a second chance to do it better.  And so I did. And that made all the difference in the world.

And I write about my encounters with the residents at the long-term care home so that people will understand that they do not lose their essence when they have Alzheimer’s or other dementias – they are still here! If a reader learns nothing else but that someone with dementia still matters, then my intent is fulfilled.

If I can change my thoughts and accept disease and learn to live with it in loving kindness, then anyone can. And I believe that we need to accept the disease, so that our time with our loved one can be one of quality and love, not fear.

So I write about mindfulness and acceptance because that is how I changed. And I write about creativity and joy because that is what I experience now. Who knew that my journey would lead to such joy and expansiveness? But I shouldn’t be surprised: Compassion and an open heart always leads to more love, more joy, more insights. Joy leads to more gifts.

When we share our gifts (no matter what those gifts are) we connect to other people – and that is how each of us makes a small (but significant) change. And I believe that is how together, we will heal humanity and our Earth. One person’s small act at a time. One small connection at a time.

We change the world when we realize that we cannot change the world. We can only change ourselves.

“Yesterday I was clever so I wanted to change the world. Today I am wise so I am changing myself.”   Rumi

My blog is a small act. And so just for today I will continue. Tomorrow – we’ll see.

But here’s a last thought: Am I not still a carer? Are we not all carers? Are we not all caring or protecting or comforting someone or something? Are we not all carers of our earth and humanity?



Dying and the heart sutra

Peace. Harmony. Laughter. Love.

Peace. Harmony. Laughter. Love.

I can hear snatches of conversations out in the hallway. A man’s voice is asking where are the balls?, a woman’s voice is insisting that she hasn’t paid for lunch while another soothing and calm voice assures her that your pension pays for lunch.

Peace. Harmony. Laughter. Love. I have been repeating those words over and over since I arrived at the long-term care facility where I have been asked to sit with a resident who is dying.

Peace. Harmony. Laughter. Love. It is a heart sutra that one can recite while meditating. I feel it is appropriate to meditate on these words while I sit here.

In the hallway life continues. Life has only slowed down in the confines of this room. The door is open and now I hear the medications wagon roll to the room next to the one where I am sitting and I hear the tap, tap, tap as the charge nurse counts the pills, and I recognize the familiar noise of the pills dispensed into a paper cup. Now she pours the water into a Dixie cup. For sanitary reasons, everything is disposable in the long-term care facility.

I recognize the soft padding of footsteps – silent, rubber-soled shoes of residents and staff. For a macabre moment, flashes of the “sidler” from an episode of Seinfeld enters my consciousness.

Thud. Thud. Wheelchairs on rubber wheels are quiet and unobtrusive as residents propel themselves with their feet.

A resident yells. Quick steps. More soothing words. A quiet blankets the hallway for a few minutes.

A resident’s footsteps are hurried; later, he returns, still hurrying. Again, he repeats the trip down the hallway; and again, returns. The repetition of his hallway journey seems never-ending. The resident’s dementia is relentless and won’t let go.

The man who was looking for the balls wanders past my door – he is now carrying a basket of brightly coloured balls. He, too, repeats the trip past my door, over and over.

The resident who I am sitting beside is still. I look around her room so that I can understand her a little – rooms reflect our personalities, our families and our loves; therefore, rooms are autobiographical.

The machines that were stationed beside her bed are gone – they are superfluous now. My resident is on her final journey – one that is solitary, bereft of things and stuff. This is life at its basic core – she is becoming a shell. Soon she will be formless. Spirit.

Peace. Harmony. Laughter. Love.

The sounds of the hallway. And the silence and quiet in this room. Side by side.

Life and death close by. My mind wanders to my mother’s death. She, too, lived and died her last moments here in this same facility, although in another area of the building.

No one disturbs us. Occasionally the staff check in and linger for a few minutes. Often they whisper words of comfort and love into the sleeping resident’s ear. Their words move me.

I am always humbled when I recognize that words of love come easily when we visit someone who is dying. If only those same words flowed so freely when our loved ones were well and healthy.

Another resident down the hallway is anxious; she is beginning to confront other residents and now they are agitated. But a staff member has intervened and all is well. A few simple words and calmness reigns. Another potential crisis is diverted – peace. Words of comfort heal many sores.


The resident who hurriedly travels back and forth, up and down the hallway has been re-directed to “dust” the hall rails. He is completely transfixed on his task and is polishing the rails until they glean. (There are a myriad of rails to dust – he should be occupied for some time.) Happy to be of service, his face is set in determination and purpose.


A personal support worker (P.S.W.) stops to visit our room. I ask her a question about the resident’s life and she captivates my imagination with tales of the resident’s assertiveness and joie de vivre. We laugh together as we honour this remarkable woman’s life story.

Flash cards in my head. I am remembering my mother’s death: as staff and residents filed into her room to say goodbye, they each took time to tell us stories of our mother (humourous anecdotes) that filled us with tears and laughter. Colour loading: two strokes of paint, one colour beside the other colour, side by side. Laughter. Tears. Joy. Sorrow.

Laughter is a lifeline: it tethers us to one another.


A husband pushes his wife’s wheelchair past our room and I recognize him as he and his wife are often at weekly bingo. He is hunched over and moves very slowly. Very slowly. He is like the many other husbands and wives, family members, who care for their loved ones with dementia. Daily visits that last from early hours until bedtime. That is the norm.

When you volunteer at a long-term care facility long enough, you begin to recognize the unsung heroes in the home. Their health is often jeopardized; their health declining at a faster pace than normal.

When I sit and talk with them, they assure me that there is no other place where they want to be. They consider the long-term care facility their home now, too.

A husband in his 80’s once told me that when he takes a respite from the daily commitment to his wife, that he is lost; he finds himself adrift. And so he returns to the care facility, more at peace and comfortable here (living his commitment to his wife) than in the loneliness and quiet of his home.


This room is filled with love. I see the love in the many family photos that are pinned to the bulletin board, or framed in the cabinet. Cards are filled with heart-felt sentiment; words of family love.

I see my mother in the bed. And I see my father. Now I see my mother-in-law, my aunt and others.

When you look at your loved one, you see that he is also made of stars and carries eternity inside.   Thich Nhat Hanh


Outside I can hear the birdsong. It’s Sunday so I also can hear the church bells in the distance. Down the hall someone is playing an organ and a few are attempting to sing a hymn and in spite of being off-key and discordant, there is a flow. The sounds are comforting. There is a rhythm in this building that I can sense – a heart beat – and I find it comforting.

Peace. Harmony. Laughter. Love.

May Grace surround my resident as she travels her last journey. May Grace surround us as we honour life and interbeing.









Sharing time with someone who has Alzheimer’s

Often family members visit a loved one with a dementia-related disease for weekly, bi-weekly or monthly visits. Some visit more than once or twice a week, but these same family members will tell me that they find it a challenge finding an activity that they can share. I remind them that it is not the activity, itself, but the time shared together that matters. Our loved one is still worthy; our loved one still matters.

Restlessness or anxiety is a common trait of persons who have Alzheimer’s or another dementia-related disease. Because exhausted caregivers are often too worn out to create new activities to distract their loved ones they often resort to turning on the television. Those of us who have cared for someone quickly realize that the television is not the answer. Unfortunately we learn through trial and error that the television programs can spark other symptoms, such as hallucinations or illusions. Worse, delusions.

Others, when faced with a loved one who has Alzheimer’s, begin to withdraw – they no longer visit their loved one because it has become too stressful. They convince themselves that the person with Alzheimer’s (or a dementia-related disease) is no longer cognitively aware; therefore, they reason why visit?

Since I have journeyed with both my father and my mother who had Alzheimer’s, I fully understand how these feelings and thoughts arise. But I have also experienced acceptance of the disease, and with acceptance, kindness, compassion and love follow.

Spending time with your loved one is one of the best ways to learn to accept this disease. Try to visit with the intention of “seeing” your loved one as she/he is in the present moment. Let go of the past (and your thoughts about how shitty this disease is, how your loved one is no longer the person that she/he once was, how much you resent or feel guilt) and just visit with this intention: I am doing the best that I can.  Let go of thoughts about the future (what will happen when she/he dies, how much longer will this go on, what will happen to my health if I continue down this road). Stay in the present.

Acceptance takes practice. One must have awareness first of our emotions. Don’t shove them down. Accept them. And forgive yourself for them. It is human to feel resentment, anger or guilt when dealing with disease. (Thank you, Dr. Robert Buckman, I Don’t Know What To Say…, for this valuable insight.)

Once we acknowledge this fact – that it is human to feel negative emotions – then we can turn our attention to releasing them. Wherever we turn our attention (awareness), energy follows.

When I used to visit my mother in the long-term care facility where she lived the last two and a half years, I parked the car and sat for a few minutes. I would close my eyes and intend that my visit would go well and that I would only bring my loving energy into her room; I parked the negative energy in the car.

Here is my intention (or prayer):

Let me only enter with love. Let me greet my mother with love, compassion and joy. No matter her mood or the events that she will tell me, I will stay in a state of acceptance. I am not here to cure her or fix her. I will visit and do the best that I can. And I accept that. No matter what, she is here. I accept that, too.

Through my own experiences and through talking with others, I have compiled a list of activities or tips to help distract a person whose symptoms are causing restlessness, anxiety, frustration, agitation or irritability. None of these suggestions will work all of the time; some of them work for a short period of time and then other activities need to be introduced. Sometimes we adapt or tweak an activity and that makes all the difference.

And sometimes an activity is not the answer to restlessness, but that stillness or calmness is. Learn to declutter and simplify your loved one’s surroundings. Over-stimulation, whether it is a messy room or too many people chattering, can arouse anxiety in someone with a dementia. And some carers believe that over-stimulation and change can cause Sundowners Syndrome.

When someone becomes restless or anxious, distraction can be an antidote. Often I would take my mother’s hand and suggest that we look through her photo albums or rummage through a box filled with family photos. This was an activity that she particularly loved to do and if I sat beside her and listened to her stories, that was double the pleasure. (Tip: no matter what story you hear, do not correct their version)

When the experts tell us that the part of the brain that stores old memories is often one of the last to deteriorate and that those memories often stay intact until near the end stage of Alzheimer’s, we can understand why our loved ones enjoy visiting the past – old family photos, reminiscing about old stories, old home movies, music and songs from their childhood or young adult life (or songs from the war) – these all make for an enjoyable pastime. And I am convinced that these activities allow for our loved ones with dementia to shine again.  On a daily basis they are bombarded with things that they no longer can remember how to do and reminders of loss and failure; therefore, why not give our loved ones an opportunity to remember happier days – days when they were full of life and passion, days when they were not dependent on others. Reminiscing about the past, listening to your loved one’s stories, and looking at old photographs fill a vital need.

Finding activities or hobbies that suit the person with a dementia is not a one-size-fits-all solution. A little detective work might help, as you might want to explore a variety of activities.

For example, your loved one might have enjoyed photography as a life-time hobby. Understandably, he might not be able to remember how the camera works, and his lack (loss) of fine motor skills might impede how he holds the camera and focuses on a subject. But the person might still enjoy photography books; or a small camera, or two, could be placed in a box as a worthwhile activity – a caregiver could initiate a conversation about photography with the person, as he holds the camera and  touches the different components.

My mother was a clean freak when she was younger and we teased her that her laundry was folded as if she was still in the army. Well, those habits did not fail her when she became an older woman with Alzheimer’s. Personal care workers would tell us that my mother would make her  own bed every morning, and that the bed would be wrinkle-free and perfect. (And yet she could not walk without two people supporting her. Figure that.)

When the laundry was returned to her room, I would take everything off the hangers and give them to my mother to re-fold. She would concentrate on folding a sweater and even if it took her many minutes, she would not give up. When I would lean in to help her, she would insist that it was her job, not mine. I could do it quicker and neater, but it allowed my mother dignity and purpose and it became an activity that she enjoyed during my visits.

Another activity she liked was to sit with her jewellery box on the bed where she would lovingly handle each of the pieces of costume jewellery. She would pick up a piece and tell me its story. “You gave me this necklace one Christmas when you were ten years old. You told me it was the most beautiful thing ever.” I would stare at the yellow beads,  and wonder if she was confused with my sister’s or aunt’s gifts. I could not remember buying it, nor did I even like it. Yellow is not my favourite colour. But I enjoyed watching her face light up with joy as she remembered these stories. And I especially enjoyed her stories. (Sometimes she got her stories mixed up and the decades ran into each other.)

We might read stories or poetry to someone with a dementia, or we might play music from the early eras. Reading aloud or listening to music is extremely calming and tranquil. Studies have shown both are used in therapy and have good results. Again, music from the past awakens the part of the brain that is not as damaged as others…it becomes a pleasurable and joyful experience for persons with dementia, and, of course, it is extremely restful. This is particularly a good idea for grandchildren who visit. Young people can read their favourite books or magazines to their grandparent. (Remember: it’s about the energy we create, not the content of the pages.)

My friend visits her mother who has Alzheimer’s and sadly,  her mother does not recognize her, but they still enjoy hours of singing songs together, and spending time together, holding hands.  Christmas carols and hymns are special favorites, she tells me. When my friend recounts her visits, I can see the joy on my friend’s face. She has truly parked all those emotions, including her sorrow now that her mother does not recognize her; yet she visits as often as she can, with love in her heart.

There was a large cork bulletin board in my mother’s room at the long-term care facility, and we pinned all of the greeting cards that she received onto it. When she became too anxious or upset, I would announce to her that it was time to re-arrange her bulletin board. Then I would take everything off the board, lay the items on her bed, and she would look at each card or token (butterflies, autumn leaves, pictures) carefully. I would ask her where we might re-pin the cards on the board. According to her, everything should be hung low on the board so that she could look at them when she was in her wheelchair. (So clever, I would think.) Sometimes I would visit and she had taken everything off the cork board and I would find them in the trash can by her bed. Not saying a word, I would re-hang them when she wasn’t looking. She never commented on my actions.

Often I encourage family members and friends to mail cards to our loved ones who are in a long-term care facility (or hospital).  Many of the residents that I visit do not have a single card, plant, vase, picture, or special gift in their rooms. (Their rooms look bare and lonely.) When we mail a card once a month to someone who we cannot visit as often as we wish, we are giving them a true gift – a chance to receive mail, an opportunity to “show off” the card, and a gift of ourselves to them. In this simple act, we express consideration and support (and comfort) to our loved ones. A small expression gives huge joy. When we care for persons with dementia, we learn very quickly that the smallest of gestures are meaningful and matter the most. (Here’s a tip: choose greeting cards with beautiful pictures on the front such as animals, nature, butterflies, or flowers and add a handwritten note. “I love you and think of you every day. Thank you for everything that you did for me when I was a child.”)

Think of activities that our loved ones enjoyed when they were healthier and then tweak that activity to fit their level of ability. Someone who liked to make crafts in the past, might enjoy a box of different kinds of fabrics, buttons, and zippers. Different on-line sites sell quilts made with zippers, pockets and buttons and bows – called a fidget quilt – while others offer craft projects adapted to someone who has Alzheimer’s. This is a wonderful idea for those who enjoyed crafts, or for the person whose hands fidget and are in constant motion. (Each person with a dementia will be at a different stage of loss – some will not be able to use their hands due to loss of fine motor skills. And, of course, some will have forgotten how to tie a bow, fasten a button, etc.)

Some people with Alzheimer’s may not actually want to do the activity – but will enjoy sitting and watching their loved one participate. My mother no longer gardened but liked to watch the staff plant vegetables and flowers in the communal gardens.

Some people have dolls that can be dressed; some persons with dementia like to do puzzles (there are many puzzles that are adapted to Alzheimer’s and dementia); some will respond to a box of tools or a box of kitchen gadgets (for those who loved to cook). And many persons with a dementia love to draw or paint. When I visit the care facility, I am always astounded at the beauty of many of the paintings that are hung in the hallways – the subjects are often simple, but beautifully crafted: a simple maple tree, a vibrant red cardinal or a vase of flowers.

Finding the activity just takes a little detective work on the carer’s part. And sometimes our loved ones will tell us in their own way – my mother spent every day sorting through her dresser drawers, re-arranging things constantly. We learned that it calmed her and we stopped trying to re-order her items. Once I found mince tarts in her lingerie drawer and pieces of chocolate – all melted and a complete mess. We learned not to sweat the small stuff and just to remove the mince tarts and chocolate. (Tip: add some small boxes or plastic containers to the drawers so that your loved one can fill them with items of their own choosing.)

Lastly, I learned that sitting outdoors in the garden with my mother gave her immense pleasure. We would sit for a couple of hours, listening to the birdsong and watching the birds at the many feeders located in the garden. Squirrels would visit and the occasional rabbit family would grace us with their presence.

On a few occasions, my mother would comment on a trip that she made when she was a young woman, confusing the present day with her past. Instead of sitting with her daughter in the garden, she was sitting with her friend in the courtyard of the hotel where they stayed. At first I was confused about her stories, but I learned to just go with the flow – and stay in the Now. That is, my Now; not hers. Either  her past or my present, we both were content to sit in the garden in stillness and peace.

Those were the happiest times when we just sat in silence and stillness. I would forget that my mother had a dementia and lived in a long-term care facility. I just sat in the moment, enjoying the Now.

It’s really not about the activity or how we spend time with someone, it’s about the loving energy when we sit with them. If we visit with an open heart, and we are willing to leave our egos aside, our visit will matter – to our loved one and to us.








Reading aloud, saying goodbye to our home, and dog tales.

As we walk along the hallway, the resident whose arm I am holding begins to speak Chinese to me. She speaks fluidly, without pause or hesitation. And what strikes me in awe (not the least of which is her effortlessly spoken Chinese when I comment to her that I was in China recently) is that ten minutes ago when I asked her to join us at the reading session, she had no idea what I was talking about – even though she attends our session every Friday afternoon at two, and has done so for many weeks.

What a mysterious organ we possess in this thing we call brain.

The resident’s ability to remember some Chinese phrases (someone taught her them years ago, she tells me) is still intact, yet a recent activity that she has enjoyed with us for a number of weeks, she has no recollection.

“What book are we reading?” she inquires. And I remind her that we are reading Marley and Me by John Grogan. I recap the story for her – a story about the author’s dog, a Labrador retriever, who is kinda goofy or daft, and is accident-prone due to his love of …well, everything! That makes the resident laugh and she confides that she thinks that she will love this book because she likes dogs. I want to remind her that she has enjoyed the book – she reiterates that fact every week and also informs me (each time we read together) that the author is an excellent writer. My gut tells me that she is extremely well-read and intelligent: I suspect this because of her smart and thoughtful comments about the author’s writing and the story itself.

A few months ago when I sat with another resident and recorded her story and wrote it down for her (and her family), I discovered that my resident friend loved to read but no longer does because of physical restrictions. She, like many other residents, no longer enjoys reading because she cannot physically hold the book. A stroke and the complications and aftermath of the stroke now restrict her from many activities, such as holding a book or turning the pages.

But in the resident’s life story I learned that one of her fondest memories was reading aloud to her mother during the Second World War…reading aloud (sometimes by candlelight) while her mother sat close by, knitting or tatting lace.

Her memory ignited one of my own – the many times when I read aloud to my sons when they were young. A voracious reader, I read everything and anything to them. Many a five am feeding would find me reading the back of a cereal box as my sons didn’t particularly care what I read aloud – as long as I paid attention to them, and the words sounded melodic or rhymed. (Heck, you can sing the ingredients of a loaf of bread aloud and your tiny audience will smile and coo at you.)

So reading to the residents of the long-term care facility (where my mother used to live for two years) seemed like a natural extension.  When I proposed my idea to the activity director, she was delighted.

Reading aloud to someone has a very calming effect, I have found.  Many of the residents that I bring down to the reading room (formerly known as the computer room or as my mother termed it, “the room at the end of the street”) are in wheelchairs; some have had strokes and now have physical and language impairments; some have a dementia – some are in early stages of a dementia and others are in later stages; some are responsive and some are not. But the ones who are particularly agitated and do not sit still under most circumstances are the ones that I notice sit quietly when I begin to read.

The benefits of reading aloud to someone are plenty:

  • benefits mood and increases well-being
  • stimulates memories and exercises the brain (sensory stimulation)
  • encourages a resident to reminisce
  • reminiscing can reassure a resident that their life had meaning and significance
  • sharing time with others (engaging with peers)

The benefits for the reader are also significant: I have learned that while reading aloud I am forming new neural pathways in the brain. Bonus! Apparently reading aloud also sharpens my focus and comprehension. When I focus more intently, I am living fully in the present. Reading aloud allows me to be more mindful – that’s a benefit that I embrace!

I Googled suggested book lists for seniors and there were many book titles for those who do not have Alzheimer’s or other dementia-related diseases. I learned from some Alzheimer’s sites that reading poetry aloud is as soothing as music therapy. A couple of my residents did not want to listen to poetry, but I stored that suggestion in my “vault” for a reading  one on one  project, perhaps in the future. Some of the books suggested were not appropriate for my group, either because they were too explicit, too graphic, too many deaths or too gloomy.

Should we read a classic? A short story? An article or story from a woman’s magazine? Or, should I read one of my own personal favourites? Since Crime and Punishment is my most beloved book, I nixed that idea quickly (alas, no Russian literature lovers in my group). Some residents have hallucinations and paranoia and are particularly vulnerable to suggestions. Even news stories on the television upset them and blur the line of reality and fiction for them, so I didn’t think the murder of an old woman was appropriate.

I also think the stories based on the veterinary surgeon from the Yorkshire Dales, James Herriot’s  If Only They Could Talk (once a popular series on television, All Creatures Great and Small) might fit my reading needs.

So off to the library to further my research. One of the librarians is intrigued with my quest for the perfect book and so she begins to make suggestions, too. She takes me to a section where all the books are dog-inspired tales, and the two of us begin to read opening chapters.  Dog tales or animal stories are often easy to relate to and usually full of humour and so are important features when reading aloud to seniors in a long-term care facility.

We discard a few titles. And reluctantly I dismiss James Herriot’s books. There is not enough action, I think. Wait! Do we need action to hold their attention? Yes. Not a lot, but some. The librarian is younger than me and she winces when I read aloud a few lines of Herriot’s book. “Too dry,” she declares. (Hmmm…I am truly glad neither of my parents heard that remark. The television series based on Herriot’s books was one of their all-time favourites.)

I finally decide to go with Stuart McLean’s Vinyl Cafe series. Two reasons: Stuart McLean has been reading from these beloved books for nearly two decades on CBC Radio. If someone can read a book aloud on the radio – and keep his job for nearly twenty years – then he must have his finger on the pulse of the masses. Right? Second reason: I found a couple of the Vinyl Cafe books in my mother’s book stash after she died. You know that I trust synchronicity! Enough said.

The Vinyl Cafe series are collections of short stories about a man who owns the Vinyl Cafe  (a record shop) and his family which consists of wife, two children, a dog and a cat. And his mother. And his neighbours. And the townsfolk.

I read a few of the stories and my audience likes them. Well, okay. Like is perhaps not the word I should choose. The reviews are mixed: Some have fallen asleep and some seem riveted to their chairs. Some have to leave because they need a bathroom break (and they do not return…I blame the staff for that!) and some leave because their loved one has shown up and visitors always (always!) trump a volunteer who is reading aloud to them. (And so it should.) And I also learn that what I think is hilarious – they do not. (What? No laughter at a cat who teaches himself to flush the toilet? Oh, come on.)

But here’s the beautiful thing. After reading a number of stories for a few weeks, and not receiving any good feedback (to be truthful, I do not receive any feedback), and just when I think it isn’t making any difference to their quality of life – something wonderful happens.

I was reading from Stuart McLean’s Vinyl Cafe series, the short story Margaret Gets Married, when out of the corner of my eye I notice movement – a number of the residents are now sitting on the edge of their seats, their bodies erect; those sleeping, woke up. The story is about the main character’s mother’s decision to re-marry – when she is in her 80’s. That caused a little stir in the room. Then, the man who she is dating decides to propose and wants to pop the question at a romantic place – so he chooses Margaret’s childhood home where she no longer lives as the location where he parks his truck and pops the question. Margaret hasn’t visited her childhood home for years so she is mystified why they have come to the site. But she is thrilled to re-visit it and fondly reminisces.

The residents are now excited and begin to tell me that they did not have the experience of re-visiting their home before they came to the care facility. Some are telling me about their family homes; some are smiling at me. But nearly everyone in the room is fully engaged with the story – even those who are unresponsive. They have woke up and are on high alert. (See, that’s the magic: even when you think no one is listening, they are!)

Afterwards I mull over what their responses were to the story and I am puzzled until I remember that someone once told me that her biggest desire was to go home –just for one last time to say goodbye. When someone who now resides in a care facility tells us that she wants to go home, we worry about dredging up the past and we worry about tears, grief and sorrow. But what if a visit to the family home signified the ritual of saying goodbye, a last farewell? A short visit to the family home to honour it and the memories – shouldn’t that be a rite of passage? I think so.

During the reading of Margaret Gets Married, I touched a nerve. Nearly everyone responded to that story in a way that I couldn’t have foreseen. Upon reflection, I believe that all of us (dementia or not) have strong ties to our childhood or family homes – these are the long-term memories that stay intact until the end of life and often are the last to disappear when someone has a dementia. And these are the ties that shape us, that influence us, that create who we become.

Childhood homes, weddings, second marriages and a bride who is in her 80’s – all topics that the reading group responded to.  Stuart McLean nailed it. And the short story has humour, too.

We laugh along with the antics of the townsfolk who want to support Margaret but try to take over/hijack her wedding plans. In the end of the story, Margaret’s wisdom and just plain good sense prevails and she gets the wedding that she wants, not the townsfolk. Clearly, Margaret is a credible hero to this group of residents.

Excerpt from Margaret Gets Married, Extreme Vinyl Cafe

She danced the night away.It was her wedding after all. She had already had for better or for worse, for richer and for poorer, in sickness and in health. This was the part she had given up on. This was happily ever after.

Marley and Me is winning over the residents, also. The outrageous antics of this goofy dog is too funny and I find myself laughing throughout the chapters. One thing that I have learned is that twenty pages is the limit for our group – more than twenty pages and too many lose interest and fall asleep. An hour of reading is optimal, ensuring that I read slowly and pause at the funny parts. On one occasion I read two short stories (not one) and a resident succinctly informed me that “two stories are just too confusing. Don’t read two again.

Sometimes I ask questions to initiate a discussion within the group.  Last week we read that Marley wrecked havoc in the home because of his deep-seated fear of thunderstorms, so I inquired if anyone had owned a dog that was terrified of thunderstorms.  Most had owned a dog at some time so many had funny stories to share. And a couple of residents just told me stories that were not the least bit related to dogs. Or books. Or reading. Reading sessions have taught me to just go with the flow. It’s more fun then. Besides, that is the true essence of mindfulness:  Just be. Don’t edit. Just be.

And always, always my group tells me like it is…”you are reading too fast,” “you are reading too slow,” “I am confused,” “what’s the name of this story?” “are we going home soon?” “when can someone take me to the bathroom?” and lastly, “when is this over?

But once in a while, a daughter of one of the residents will tell me later that her mother enjoyed the story, or that her mother likes to attend the reading group. And that is enough.

  • McLean, Stuart. Extreme Vinyl Cafe (Toronto: Penguin Canada, 2009).
  • Grogan, John. Marley & Me  (New York: HarperCollins Publishers, 2005).








Whose “reality” matters?

My mom was convinced that the new resident was an actor from her favourite television show Coronation Street, a popular British soap that many Canadians watch faithfully.

Even though the new resident didn’t have any similarities to the actor, she was insistent, “It’s him. He lives down my street.” Down the street was her term for the hallway.

Misunderstandings, misinterpretations, hallucinations, delusions and altered perceptions are all symptoms of Alzheimer’s disease and of other dementia-related diseases. Unfortunately, altered perception is also one of the most misunderstood symptoms that families of a person with a dementia-related disease struggle with when their loved one is ill.

My own family floundered with our mother’s perceptions and hallucinations nearly every day. I learned that we were not alone: Many persons with Alzheimer’s suffer greatly from this symptom of brain disease.

In fact, since I have been volunteering at the long-term residence where my mother lived (she died last December), I have discovered that many of the residents are affected by both delusions and altered perceptions – even those who do not seem to have any other symptoms of dementia.

I have learned that a seemingly lucid person can suddenly demand to be taken back to her room because her daughter has arrived for a visit…when I look around, there is no daughter. In fact, sometimes, I turn around in a complete circle…There is no one here! Just me.

Other times I have been in the middle of a conversation with a resident and suddenly that person will look up and insist that “the children have arrived.” You guessed it: There are no children.

My friend’s mother often had an animal friend that slept in her room. She would ask my friend to pat the animal, speak to the animal, and, of course, feed the animal – which my friend lovingly obliged her. So she fed it, patted it, and spoke to it often; imaginary food, of course.

When we go along with the hallucinations and altered perceptions, we are not harming our loved one’s reality. Their altered perception is their reality. When we argue or attempt to correct our loved one, we cause further harm and suffering. Worse, we hurt their pride – their sense of self-worth.  (We need to understand that people with Alzheimer’s still understand disrespect and intolerance from someone…they just do not process that negative energy the same way as someone with a non-damaged brain.)

So how should we respond when our loved one tells us that the boys are in the trees? (That was a common refrain of my mother’s. “What kind of parent allows their children to climb those tall trees?”)

First, I think it is important to understand why our loved one is seeing things! Compassion comes from our understanding another person’s viewpoint. And it is in compassion that we can lovingly adapt to or manage our loved one’s symptoms.

Hallucinations are not necessarily hallucinations; in fact, our loved one might be experiencing visuoperceptual difficulties. Many people who have a dementia-related disease have damage to the visual system; therefore, they have visual problems. Visual mistakes are often made since the patient’s disease (the deterioration of brain cells) prevents them from seeing an item and then interpreting it correctly (and many times they do not name it correctly because of their language deficiencies).  Hallucinations do occur, of course.

As caregivers, we can begin to discern or differentiate between misperceptions and visual mistakes that our loved one makes and hallucinations.

For instance, when my mother was alive she made many remarks that were quite outrageous, but when my family learned that her visual system could be damaged because of her loss of brain cells, we took a closer look at what she said: “The boys are in the trees and they have been there all day.”  On closer inspection, the wind was whipping the tree tops and the leaves were moving frantically back and forth. This movement caught my mother’s eye and she mis-perceived the tree and its leaves.  Because of the brain damage from the disease, she no longer could judge or interpret events; hence, she saw boys in the trees. Even though most people who do not have damaged brains would realize that the suggestion was ridiculous, my mother could not make that distinction.

A common mistake our loved ones with dementia make, time and time again, is that they see people in a chair by the bed.  If a house coat or sweater was draped over the chair, or even a comforter or a blanket, that outline of fabric would fool my mother and she would see people. This is a very common mis-interpretation that people with dementia-related diseases make.

Misperceptions and altered reality are two of the many causes that allow for accidents and falls. My mother was constantly underestimating the exact location of the table – she would either place a cup of tea on the table and misjudge the distance;  hence, a spill.  Or, she would sit down onto the toilet and miss it entirely; she would try to climb steps and her foot would hover in the air as she probably could not see the steps clearly. She would trip over the doorway threshold.

There were times when I took my mother into the bathroom and she would catch a glimpse of herself in the mirror and she would stop and refuse to go into the room: “There is another woman using the bathroom, Mal. Who is she?” ( I would reply in a quiet voice, “Mom, perhaps it is you!”) She would pause and then burst out laughing. Notice that I allowed for her to make the adjustment – my way of allowing her some dignity.

These encounters occurred throughout the whole day with my mother. She would absolutely refuse to go into the hallway from her room because she was convinced my Dad was in the hallway with his floozies. My dad had died two years earlier, and no, he did not have floozies (to my knowledge. Ha!). To make a distinction, this was a hallucination, not a misinterpretation. (She was not mis-perceiving people as there were no people or objects to mis-identify in the hallway.)

But along with hallucinations and misconceptions and altered perceptions, there are times when our loved ones insist that someone has stolen something or a personal care worker is now a “thief.” The many times my mother said my father visited her room to raid her closets would be considered a delusion – most delusions focus on infidelity, paranoia of someone, theft, or abandonment.  Unfortunately, delusions are also another common symptom of dementia-related diseases – and since they usually “finger-point” to a family member or a staff member, they can cause hurt and bitterness. With understanding the causes of these symptoms, we can let go of the story and not take them personally.

Then there are the times when residents insist animals are sitting beside them or friends have visited when you know for a fact, no one visited them that particular time.

But since time and space are confused, a meeting that takes place on Monday can be remembered as taking place on Saturday. And, when someone does visit, our loved one insists that they did not!

It’s all very confusing, yes? Yes! And frustrating. Until you accept the symptoms of the disease and just go with the flow. I make it sound so easy and yet I know that it is not. It is a constant challenge to live in the Now, and accept our loved one’s disease. But it is what it is.

We cannot change our loved ones. Only we can change!

As Gandhi said, Be the change that you want to see.

Hallucinations occur more often in people with Lewy Body Disease or Parkinson’s, but clearly Alzheimer’s does present these symptoms.

Here are a few tips that I learned when I cared for my father and my mother:

  • avoid talking or laughing or whispering while near the person with Alzheimer’s – if that does occur, then ensure that you clearly explain to your loved one on the exact nature of the discussion (otherwise, your parent misinterprets or mis-assumes/deludes herself, imagines/perceives a story or complete fabrication)
  • no loud, violent TV (again, our loved one thinks the television story is real)
  • don’t argue in front of the person with Alzheimer’s (this frightens them and they stay frightened long after; some people become quite traumatized)
  • help them look for missing or stolen items – just go with the flow (never insist that they are wrong or imagining that an item is stolen)
  • try to have duplicates of the lost items (for example, an extra wallet, loose coins, another set of keys) when they “lose” something, now you can “find” it
  • do not argue with your loved one over the reality of a situation – in their mind, this is real for them
  • increase the lighting in their rooms (they cannot see well)
  • de-clutter the room (if they live in their own home, de-clutter the entire home)
  • hang clothing in the closets – draped items cause visual problems for them; a coat rack can become “a person”)
  • ditto, pillows and cushions – they are mis-identified often
  • watch the person’s movements and adapt to them – often my mother would stretch out her arm and I recognized that she was going to just drop the cup  (into space). I began to anticipate her moves and I would take the cup from her, or move a table closer to her.
  • say aloud what the item or object is when you hand it to them
  • in the case of mis-identification, learn to identify her visitors  (E.g. “Oh, Mom, here’s Margaret, your best friend. She has come for a visit.”)
  • anticipate that they need support or help when they climb stairs
  • be aware that shiny floors or patterned carpets can completely “dazzle” their eyes or confuse them (take their arm and gently say, “Allow me to help you up the stairs. There is a step in front of you. You will need to lift your right foot.” Or, you might remind them that the floor has transitioned to carpet.)
  • learn to go with the flow and agree gently with them on most occasions (do not argue, cajole, or try to persuade them that they are wrong – you will never win the argument)
  • if they become agitated, stay calm and lean into them – rub their arm or hug them; tell them “This must be difficult for you. I am here for you.”
  • recognize your emotions when your loved one has an altered perception; recognize and accept the emotion – do not suppress it or deny it; learn to accept your emotions as a natural and human reaction to our loved one’s stories (in time, you will let go of the hurt)
  • try to maintain a sense of humour

To recap, objects are visually seen but the impaired brain cells (and damage to the visual system) misinterpret what the objects are. What many of us, as caregivers, have labelled as hallucinations are not; they are visuoperceptual difficulties.

Similarly, the person with a dementia-related disease will misunderstand or misinterpret conversations, even conversations that they overhear. Many a visit with my mother included bizarre re-telling of stories – some had an element of truth in them somewhere, but mostly her stories were based on erroneous facts and misunderstandings.

One time my mother told me that her sergeant insisted that she move to another home.  Nothing we said could allay her fears. Weeks later I learned that the new director of the home had introduced herself to many of the residents. My mother’s impaired judgment led her to believe that the director was the sergeant and that some of the goals stated were misinterpreted to mean changes. Because my mother could not discern fact from fiction she insisted that the sergeant was moving her to another location.

So one can now understand that persons with Alzheimer’s and other dementia-related diseases do not see and interpret things the same way that we do…their brains take in and mis-interpret visual information causing them to misjudge distances, dimensions, depths, colours, items, events, and circumstances.

Once we become aware of this new information, caregivers and family members (and visitors and volunteers) can let go of their fears. Remind yourself: it’s the disease, not them. And learn to go with the flow. Try not to take things (wild stories about your father) personally.

It is completely natural and human for family members (and caregivers) to be fearful of these kinds of symptoms – it is natural that we are shocked when we first hear such accusations and wild stories. We feel sadness and grief. These wild stories or hallucinations trouble us deeply – we are both bewildered and saddened, but we are also totally overwhelmed in how to cope with them.

When they first occur, we reason with our loved ones:  “Now mother, you could not have seen a donkey in the yard…here, let’s go outside and I’ll prove it.” (Yes, early in my journey, I actually tried to reason with her, over a donkey.)

Then, we argue and debate: “Okay, let’s call the neighbours and find out if they saw the donkey.” (Yes, I argued and debated the odds of actually seeing a donkey in the backyard. I lost. My mother reasoned “many farmers have donkeys in their back yard. Who’s to say one of them wandered onto my property.” When I explained that there were no farmers on our residential street, she calmly answered, “Well, you don’t know everything.” Just for the record, there is no retort to that remark.)

Then, we cajole (and blackmail): “Now, look. If you continue to see donkeys, we will have to call the doctor. And you know that you don’t want me to call him, right?” (Thankfully, I did not resort to blackmail, but I have heard many family members say such things to their parents when I visit the long-term care residence.)

When we have more information about these kinds of symptoms, we all learn to accept their actions, and we begin to have more compassion, kindness and understanding for the person who has a dementia.

Besides, what’s the harm in seeing a donkey.

The next time our loved one insists they saw …a donkey, a dog with rabbit ears, a horse in the bedroom, boys in the trees…let’s respond with love and understanding…

“I’m so glad that you have a new pet. I bet he keeps you company when you are feeling lonely. What did you name him?” or just say, “Any animal would be lucky to have you.”













How much is too much?

You say you want happiness but you are addicted to your unhappiness.   E. Tolle

My new friend that I met at the long-term residence where my mother used to live before she died, asked me if I thought stress and fatigue caused dementia. I gulped. I really didn’t know how to answer her.

I wanted to tell her that long-term stress can be one of the many factors that causes a myriad of diseases, including dementia.  But I didn’t have the heart.

I have watched this woman (who clearly has her own health issues) visit her mother who now lives in the long-term care residence where I now volunteer. I have watched her from afar – her body language and her face tell the story. She is burnt out.

She tells me that she visits each day since her mother arrived in the home – she stays from early morning (before breakfast) to early evening (after dinner). Every day.

My heart goes out to her. She cannot continue this pace without harming her own health (although I suspect her daily fare has already taken its toll on her).

How much is too much? Where do we draw the line?

I don’t have the answers. But I do know this from my own personal journey of caring for both my father and my mother, both who had Alzheimer’s disease: when I truly became aware and began to pay attention to my emotions, I learned to let go of my need to control and my resistance to what was happening.

That’s when everything changed. I accepted my new reality – and I began to live in the present moment.

I began to make better decisions – I gathered more information, I asked questions, I accepted support and help.

I dropped all of my expectations – I no longer made plans that were unrealistic; I lived one day at a time, one moment at a time.

I dropped my need to control – I accepted that if I went with the flow of the day, instead of trying to map out the day, minute by minute, that everybody was calmer, less stressed; yes, happier. (When we try to set an agenda, other people do not fall into line, and that makes us unhappy. When we let go of the need to set the agenda, we begin to live in the present.)

When the hospital staff and her own personal physician determined that our mother’s needs would be better met at a long-term care facility, we discussed it with reason and love (for our mother and for ourselves!). We made the difficult decision to agree to the hospital’s suggestions, even though we wished we could care for her at home (as we had for our father). Difficult decisions, but made with care and love. And we forgave ourselves.

Once our beloved mother was at the new residence, we did visit daily and we did stay for many hours but we knew from the very beginning that we would need to let go in time. After a few weeks we let go. We made the pact that we would only visit her and bring loving energy – if one of us was over-tired, fatigued, or stressed we would ask the other to visit. We would rest and allow ourselves to re-nourish our spirits before we visited again.

In time we learned to visit when our mother was alert and ready for company – we would often take her for walks or sit outside in the gardens of the residence where we spent many hours, sitting in silence watching the birds.

She enjoyed music therapy, drinking multiple cups of endless tea, or just sitting with us in the lounge looking out the large windows.

And we learned to let go – we learned to be daughters again; not caregivers. That is the most difficult thing to do…to stop being the caregiver. We recognized our need to control everything when she first began to live in the residence. Oh, sure, it’s necessary to be their advocate and to ensure they are properly cared for and attended to, but at first, we wanted to control everything! We don’t want our mother to wear that outfit – she doesn’t like it. We don’t like music played in her room, please turn it off. Don’t leave the door open. Don’t leave our mother unattended in the lobby. We don’t like her dining table companions; please move her to another table.  Do you have to serve that for breakfast? She just likes toast and tea. 

Oh, the list was long. So much control, so little time.

But in time we learned to let go because we learned what was important. Does our mother still feel safe? Does our mother still feel cared for? Does she feel loved? Does she feel that she matters?

When you can answer yes to the above questions, then you can be assured that you are doing the best that you can. (And that means if our mother does not like the new residence (which she didn’t) that we have to accept that. And let that go, too.)

I often tell people who are struggling with how much time should they spend with their loved one that the answer lies within: Do you bring your loving energy when you visit? An hour or two a few times a week or even less is much better than a daily visit that is filled with resentment.

We are not here on earth to heal our loved one. It is no one’s fault that someone is ill. But, nor is it our job to fix the situation. If our loved one does not like their new home – we have to accept that what is, is. And for those of us who think that the longer we stay and visit, the more our loved one will like the new home – that doesn’t work! Take it from me – in nearly three years, I have never seen the parent finally admit that they like their new home. Never! That doesn’t mean the residence is not nice and comfortable, it means that the resident just doesn’t want to be there.  (And they have a right to their own opinion. And besides, in a perfect world all of us would like to stay in our own home with multiple caregivers to attend to us.)

All that we can ever do is visit our loved one with a full and loving heart.

So when we ask ourselves how much is too much? The answer lies within us. Are we at peace with our visits? Are we enjoying our visits? Are we bringing joy and laughter to our visits? Do we enjoy and meet the other residents? Do we sit and talk to others – enjoy a laugh or a story? Do we share our stories? Do we share our gifts? Do we join in the activities with our loved one? Have we spent time getting to know the staff? Do we memorize their names? Have we listened to the staff – really listened? Do we join in, mingle, tag along on outings? Playing bingo with your parent may not seem very exciting, but it is an excellent way to get to know the other residents, staff and volunteers. Your parent might enjoy the companionship more than you will ever know. And family members begin to form bonds and friendships that become a support system…truly worthwhile!

If the answer is yes to the above questions, then you are probably visiting your loved one with plenty of love and peace.

But if the answer is no, then ask yourself why not? If you have real concerns, then advocate for your loved one. If necessary, find another residence.

But don’t allow yourself to visit many long hours and be completely miserable. Because your loved one (whether they have Alzheimer’s disease or another dementia-related disease) can read your energy. That’s when I would humbly offer to you: that’s too much. You need a rest. You need compassion – for yourself. Your health matters, too.

How much is too much? I don’t know the answer to that. But I suspect that you do.