Tag Archives: caring for someone who has Alzheimer’s

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

 

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Thanks to caring for my parents, I choose to see life wearing rose-coloured glasses

Chronicles of a Chronically stressed out Caregiver. Meditations and Mindfulness Changed My Life. Mindfulness, Meditation and Me.

Let’s be honest. When you are sitting with a notepad in your lap, and the only thing on the paper are titles for the eBook (instead of actual writing), you know that you are in avoidance mode.

Damn, again? At my chronically gifted age one would assume that old trait of mine (avoidance) would have been ‘fixed’ years ago, but sadly, the only thing I do better today is actually notice when I am in avoidance. Thank you, mindfulness and meditation.

While writing another eBook, I find myself enjoying longer than normal walks, hours of playing in the dirt (gardening), and sitting on my freshly painted cobalt blue Adirondack that now matches the cobalt blue bird bath, while sketching my amazing garden. (I am entitled to call my garden ‘amazing’ because this little piece of heaven gives me peace and equanimity. And peace and equanimity is amazing.)

My dilemma is what do I give up so that I can write more?

I have plenty of time to do the things I like to do, but I keep adding to my list of “things to do that give me joy, or wisdom, or fill my curiosity” – I keep trying to cram more into my days.

I am so grateful for this time – no matter the season, or the day of the week, or the time of the day – life is good.

I choose to view life with rose-coloured glasses because I can. It’s that simple.

I learned that how we perceive life and how we co-create our lives is our choice, and that lesson I learned when I closed my children’s retail shop so that I could care and support my parents: my father had a dementia (most likely Alzheimer’s) and my mother was showing signs of a dementia-related disease, also. My life spiralled from an exciting one of fun-loving staff and customers, buying trips to the clothing marts, new encounters and learning possibilities every day, to one of stress, resentment, guilt and burn-out.

Instead of embracing each day filled with hope and gratitude, I dreaded each day as I faced endless chores and responsibilities, grief, and sadness.

Chronic stress nearly felled me, but I came through the challenge eventually as a different woman. I went into the experience with blinders on, and I came out wearing rose-coloured glasses.

I say rose-coloured glasses because my experience of caring for our parents changed my life; the experience changed me.

When my father died, both my sister and I felt that his disease, his dying and his death transformed us and gave us many gifts: wisdom, forgiveness, love, compassion, honesty, and Grace.

Wisdom to realize that self-care is integral to a purpose-filled and joy-filled life – we cannot care for another when we do not care for ourselves.

Forgiveness in the many times our parents would tell us stories of their childhood (those are the stories that are often intact when someone has Alzheimer’s) that shone a spotlight on challenging traits (things that they did that pissed us off) or events that happened (that pissed us off).

My mother would throw these (illuminating) stories out to us – the stories were like candy that she lobbed at us. We would excitedly jump up and gather them to our hearts. Those stories gave us meaning and understanding to her life, to our father’s life, and to ours.

Love and compassion grew as we spent so many hours with our parents, as we truly began to understand their lives, the hardships, their sacrifices, and the reasons why all of it was important – family! Our parents do what they do – for us. That knowledge lit something in us, and warmed our hearts.

Honesty grew. In the last days of disease, dying and death, we are our most vulnerable and authentic. Truth matters.

And Grace. There are many times in life that we know that we are surrounded by Grace, but I am always humbled and awed when Grace supports us at the bedside of our loved one who is dying. It is Grace that holds us up and whispers, “lean in” because when our bodies and minds move forward (instead of away), we learn and we expand. We grow.

These lessons have left me with a passion to help and support those who care for loved ones who have a dementia-related disease, to volunteer with residents in a long-term care home, and to advocate for change.

Like the families who have loved ones with dementia, I, too, fought my circumstances so I recognize that none of them accept their reality (they are still fighting with truth), and in my humble opinion, it is this conflict that causes the stress. We are not meant to fight; we are meant to lean in.

So today (Father’s Day) I am writing this blog as a tribute to my father (and my mother) who allowed me the privilege of caring for them – it changed my life.

I get to choose how I define my life (even if I don’t get to choose the crap that happens); I get to choose to live in gratitude, honouring the simple moments – the scent of lilies in the air, the sparrows and starlings squabbling within the hidden recesses of the viburnum, and the sun’s reflections – bands of white dancing to and fro – on the ceiling of the living room.

When we choose to define our lives from the lessons that we learn, we empower ourselves; we begin to trust ourselves, and we begin to recognize that all the answers to life are within us.

All the answers to life are within us. Thank you, Dad (and Mom) for that gem.

Daily walk – old churches, road work, and fake tulips

From the moment we leave our house for our daily walk along the river, I am assaulted by the songs of cardinals. Within a couple of blocks, the robins and the sparrows join the chorus, and I am thankful for the naked trees so that I can stop occasionally and spot them. The trees’ spring attire is not quite ready to wear, so the bare branches allow me easy viewing.

The cardinal throws his head back when he sings, as do the sparrows. I am reminded of yoga’s lion pose which relieves tension in the face, and is considered a quick beauty treatment. Is the cardinal vain? Or just happy? The colour of raw sienna – a gorgeous red-brown would make me vain and happy, too.

A cardinal family (there are four of them) endure all four seasons in my backyard; like squirrels, they are territorial. Once squirrels have set up house, they’re in for a long-term lease. It took me many summers of chasing squirrels from my flower beds; the pesky rodents constantly digging up the spring bulbs, and messing with my equilibrium before I conceded that they owned the garden, not me. I waved the white flag many years ago. (I wanted my equilibrium back.) Cardinals give me joy, not loss of equilibrium.

A few blocks into our walk and we pass a rather beautiful old church that after many years of neglect and emptiness was sold to some lucky homeowner. Slowly over the past two or three years, we have noticed new windows on one side of the church and on the manse’s side walls. Other than some shiny new eave troughs, and maybe new soffits, the house still looks neglected and empty.

Last week when I walked by the church I mentioned to my husband that I would like to see inside the church – I’m curious and would like a sneak peek. My husband laughed since we never see anyone around the building after all these years (and daily walks).

Strangely enough, my intention came true the very next morning: the double side doors (a second entrance or exit) were wide open. The stone wall that surrounded the doors had been knocked out to allow for a new set of bigger, black steel doors.

But since we were staring into a huge gape in the wall we were privy to the interior. With curiosity (or nosiness) both of us gawk into the hall which was once either the nave or sanctuary, and it is now empty, except for two beat-up old trucks. Yes, you read that correctly – trucks are now sitting in the church’s sanctuary.

I’m disappointed. Serendipity or not, trucks were not my intention.

Our walk takes a meander today as our usual route is disturbed – the perennial road work has begun. Some people think of spring bulbs in April; we think of road work. Our end of the city has been in the midst of a bigger plan for many years now.

After we navigate the dug up, sand-covered road, we reminisce of the past summer when our road was torn up for six long months, and the dust that settled in our house (in spite of closed windows) was thick. On Fridays at six (when the road crew ceased work for the weekend) I would run around dusting and cleaning my window sills and table surfaces and I would fling open all the windows. Breathe. Just breathe.

We spent the summer talking to the men and women who worked on the road, and watched as other neighbours spent their days yelling at them. We shook our heads at the futility of anger. Road work is like cement – it settles in for the long haul.

Road work is cyclical – every thirty some years the work that is completed (today) will need to be replicated. Apparently there is no guarantee for sewer pipes.

I remember when they did our roads over thirty years ago because my sons were toddlers, fascinated by the heavy machines. Each day I dressed them in their warm jackets and hats, and put them in the twin buggy that my parents bought us when we learned we were having twins. My parents ordered that double pram from England; they were so proud of that pram and used to argue over who would push our sons – Nanny or Papa? Our sons didn’t care; road work and heavy machinery beat grandparents any day!

We would approach the empty holes in the road and park the buggy in a safe, out-of-the-way spot, and hunker down for the morning – our sons would lean over the side of the pram as if they wanted to join in the dirt, waving to the men (sorry, no women working the machines back then). The men waved back, shouting at the boys which only made my sons try harder to escape the confines of the seat.

Afterwards, we would walk to the library where we would carefully choose books on diggers, excavators, bulldozers, and backhoes. The bulldozers were a favourite. Richard Scarry’s Book of Cars, Trucks and Things and Busy, Busy World were borrowed so many times that the librarians just handed them over to me when I arrived.

So to this day I smile when I see the bulldozers arrive and wonder if young moms and dads and children in tow still wander over to the huge pits in the road to watch the great machines in action.

After we have detoured because of road blocks, we walk by a house with stained-glassed windows, one designed with an inlaid cross in its’ centre. It’s quite beautiful, and I am surprised that I have never noticed the cross before today.

Yellow forsythia, in full bloom, surrounds the home, and carefully planned yellow daffodils are planted in the foreground. I marvel at the perfect match as I am acutely aware of how difficult it is to plan colour schemes in our gardens – our gardens have a mind of their own and colour palettes are not of their design.

Some of the daffodil blooms are unopened, and their little heads bow as if in prayer. The religious symbol that shines above them is inspiring the plant life, I notice.

Soon we walk past the long-term care home where my father lived his last three months. We have passed this home for over thirty years, every day, so it seemed right that my father would live there in his final days when he became palliative. I no longer avoid the building (like I used to).

We pass residents from the home most days: we smile, we stop and chat, we help someone return to the lobby. In the past we have joined staff searching for residents who went on a walkabout; we yell the resident’s name over and over, running up and down the street. Eventually everyone is found; perhaps for a brief time those residents are happy. Sometimes lost is a good state.

Over the years, the residents disappear, and new ones take their places – that’s a lesson we all learn when we volunteer at a long-term care home. Life is transient and fleeting, so I counter that with mindfulness and awareness. It’s how I find equilibrium in my life. And acceptance.

Soon we pass a dilapidated, old wreck of a house where a peculiar-looking woman works in her garden most days.  I can hear my mother’s voice in my head, It doesn’t cost a penny to spruce up the house. Sweep or rake, either will fix things up. From the rundown state of the house, the owner cannot hear my mother’s voice.

I call the owner eccentric because she is often dressed out of season, and rather bizarrely: shorts and boots in the winter; long, sloppy pants in the summer, that drag in the soil. And always a huge, rather ugly hat. Like the house, her hat is in decline. Her face is weather-beaten and she is very thin, so my husband thinks she should spend some of her money on food, and not on her garden, because she is always planting little green things (which seem to never sprout or grow).

And she often plants fake, dollar store tulips in her garden, too, among the real green things. I am rather fascinated by her garden techniques – freshly-dug garden beds every week, where the only things that seem to survive are the whirly-gigs that she plants among the green things (that do not).

And each spring her dollar store tulips that she planted in the fall (I know, fake tulips do not act like spring bulbs) become sodden messes of blanched yellows and reds in the winter. The snow and wind are brutal – fake or not, tulips cannot survive Canadian winters.

See, even the tulips are fleeting. Whatever creative urge possessed her to plant fake tulips has now died. Creative urges do that; die, that is.

I’ve returned home and now the narratives that existed in my head when I walked are gone – only vestiges of them remain when I type up this post.

Thoughts are fleeting.

Road work is not.

 

 

 

 

 

 

 

I’m aglow with hope

Christmas lights

Candles and tea lights, and strings of twinkling white bulbs are aglow in every nook and cranny of our dining room and living room – I want the rooms to sparkle and glow throughout the season. I look forward to that magical hour when the sun sets and darkness falls: it is the bewitching time to turn all the Christmas lights on, and light the candles. (Okay, I’ve switched to battery-run candles and tea lights this year – I nearly set the house on fire last year, but that’s another story.)

There is nothing that fills my heart more than flickering light during the twilight hours of the day. Nothing.

I walk into my living room and dining room and I am transformed into a little girl staring at the Christmas tree lights with wonder and awe; I am a young mother looking at the Christmas tree that my two little boys have decorated with handmade ornaments that won’t break and popcorn garlands that took many evening hours to create; I am an adult child who is staring at the Christmas tree wondering if this will be the last holiday that my mother will be able to come home.  I am a grieving daughter who finds solace and strength in the steadfast holiday traditions – the Christmas tree lights soothe my sorrow and remind me of beauty, joy, wonder and love.

Flickering lights, glowing lights, twinkling lights…represent hope.

My intention is that all of you find hope and love in the glow of the season.

 

 

“Oh, grandma. Look at all the other grandmas!”

I’m really getting tired of how people react to a long-term care facility. And I’m really getting tired of how people treat someone who has a dementia as if that person no longer mattered.

Family members and visitors (and once in a blue moon, a staff member) will often lean in and whisper to me, “Just shoot me if I ever have to live here. Just shoot me.”

And even though I understand where they are coming from – fear – it still hurts me when I hear the comment. How can we accept our present moment, when we are living in such deep fear?

What do we fear? We fear getting old, aging, illness and disease, losing our memory, losing our physical capabilities, losing control, and dying. Our deepest fear is that no one will take care of us when we cannot take care of ourselves, and that we will spend our last days in a long-term care facility – alone.

But I also believe that we fear that we will no longer matter.

When we constantly judge long-term care facilities, and when we dread the weekly or bi-weekly, or daily visits to them, do we not deny our loved one who lives in the care home dignity and respect?

Are we not (in a not so subtle way) expressing distaste for the space and, therefore,  disrespect for our loved one? Isn’t there an undertone of dread and dismay? “I’m so glad I don’t live here (thank God!) but hey, mom, hope you settle in here nicely!” I can’t help thinking of that line, See ya, wouldn’t wanna be ya!

When I wrote an eBook about my experience of caring for parents with Alzheimer’s, I included a story of my friend who visited her mother in a long-term care home and took her granddaughters to visit. Her one granddaughter grabbed my friend’s leg and hid behind her. She began to shake; she was terrified.

Her other granddaughter stopped dead in her tracks, looked around the spacious, open activity room filled with residents, and clapped her hands. With a big, silly grin on her little face, she exclaimed, “Oh, grandma. Look at all the other grandmas!”

From that moment on, her granddaughter was always excited to visit her great-grandmother.

And I am willing to bet that my friend’s mother (and all of the other residents) looked forward to her visits, too.

When we visit our loved ones with dementia, do we visit with an open mind? Or do we visit with dread? I believe that our loved ones sense our state of expectation (or energy) when we visit. What if they can feel the dread?

When I volunteer at the long-term care home where my mother used to live, I see a lot of unhappy residents. But I am also witness to many beautiful moments of love, laughter, joy, kindness and compassion. These small moments are exquisite.

I see wives, husbands, daughters, sons and grandchildren who visit daily or bi-weekly. I wish I had a dollar for every cup of tea or coffee or cookie that accompanies most visits. Many cups of tea are shared with residents and their loved ones. And here’s the beautiful thing: Many of these same visitors bring extras for other residents. (And staff.)

When I visit some residents and enter their personal rooms, flowers often welcome me – some are elaborate bouquets and others are simple posies. Greeting cards, postcards, posters and photos are pinned to bulletin boards or line the window sills. Handmade quilts or knitted afghans line the bottom of the beds, or are draped over comfortable, cushy bedside chairs.

In a quick glance around the room I can usually spot the family who cares about their loved one’s well-being. Books are piled high; bird feeders that overflow with seed hang outside the windows; walls display framed photos of family life, horses, dogs, ships, farms, landscapes and cityscapes from their home countries, angels, prayers, and life affirmations: Family, Love, Laughter top the list.

I’ve witnessed personal support workers who sneak extra cups of tea (and cookies) to the resident who has a sweet tooth; I’ve witnessed staff lovingly hug residents and rock them as if they were new-born babes. And I’ve leaned against the wall with tears in my eyes while a personal support worker has sung to a distraught or confused resident. (You Are My Sunshine is definitely top of the charts here.)

I have witnessed the residents who have no dementia support those who do. Residents look out for one another, and care for one another. Hugs and pats on the arm are doled out freely and frequently. (My mother who wandered the hallways in her wheelchair would often be returned to her room by another resident, Here, Gwen, you live here. And her dining companions would often greet me to report my mother’s latest skipped meal. You should know, my dear; your mother is not eating properly.)

When you witness the small acts of kindness and compassion, you begin to understand the deeper meaning (or at least the lessons within) of aging, disease, dying and death; you begin to understand that we are all connected – that we are all One. You begin to understand that love makes all the difference.

We are not meant to live forever in our physical body. We are all going to age, and one day, to die.

When we accept this unchangeable fact of life, we can begin to let go of some of our fear.

Instead of announcing that I would rather die than end up here in a long-term care home, why not begin to make life easier for those who do live here. Why not visit more often, not less; visit with love, not fear; visit with anticipation, not dread. If you are disturbed by the management and care of your loved one, visit often so that you can become an advocate. Become better informed: visit the care facilities website, the Ministry of Health’s website, and learn what the basic standards are. Speak up if you have an issue. Learn the names of the staff and begin to advocate for your parent. Attend the care meetings. Become a visible presence in the home. That will make a difference.

But recognize your emotions and discern whether you are fearful of the place because I dislike all facilities, like these; or do you have legitimate complaints about care.

Acceptance is a choice.

We can all open our eyes and choose to see the love, the laughter, and the joy that is still present – within the home, and within our loved one. They still matter.

When we choose to experience the joy in the present moment, disease, aging, and death do not disappear. But we will transform ourselves. Because in spite of the suffering, we choose to experience the wonder and awe in the most simplest of moments. We choose to see the beauty in everything – even in suffering. We choose to see the strength, the resilience, the exquisite vulnerability.

Suffering reminds us of some universal truths: We are not perfect. Nor is our body. We are human. Humans suffer. Life is not just. Life is not always balanced. To be whole, we must accept the good and the bad. Love can make a difference. In the last moments of life, love is the only thing that matters.

Over time I have learned that within us is an invincibility – that no matter how life unfolds, we endure. I’m still here. You’re still here.

That self-knowledge matures us as we recognize that challenges in life will not defeat us. Those same challenges (or crises) may fell us to the ground, but we will get up – sooner or later.

That’s one of the lessons that I have learned on my journey. When I visit the care home (or a hospital), I am reminded that when I first entered these halls so many years ago, I was heart-broken. When we had to make the decision to enter my father into a long-term care home where he lived for a short time before his death, I wept for hours. I was felled.

Now I visit with love and joy. I got up. I am still here.

I have absorbed the wisdom and strength that is offered to me each time I visit. I am not hear to cure anyone or fix anything. My presence is enough. (That’s another lesson that I have learned.)

I am here to just visit. My presence alone validates and honours the residents. My presence alone shares their pain and suffering. My presence alone says You are worthy. I care for you.

Laughter, love, joy and compassion tether us to our spirit. Or, perhaps laughter, love, joy and compassion is our spirit.

I challenge everyone who visits someone in a care home (or a hospital) to let go of their basic fears. Remember the little girl who clapped and exclaimed, “Oh, grandma, look at all the other grandmas!”

 

 

Caregiving and Mindfulness: Gifts

overnight, autumn crocus appears

overnight, autumn crocus appeared

There are a lot of articles, blogs, books, videos and websites that focus on those who care for people who have Alzheimer’s and other dementia-related diseases.

And that’s because the role of caregiver is not an easy one. Whether one cares for a person full-time or part-time, the stress is unbelievable.

One of the reasons there is so much content on the Web and support for the caregiver is because many caregivers become ill or undergo life-threatening illnesses themselves, perpetuated by the stress.

From my own personal journey (and watching others care for their parents) I have learned that a great deal of the stress is caused by our non-acceptance of the disease and non-acceptance of our new reality.

For me, mindfulness and acceptance led me to a new awareness of the disease, to a more fulfilling relationship with my parents, and to a new way of dealing with loss and sorrow, as well as aging and death.

Mindfulness led me to loving kindness and compassion for both my parents who had Alzheimer’s, and for myself. I had spent a lot of time beating myself up in the past, and self-compassion completely transformed me.

Mindfulness is really just another word for awareness or paying attention. And most people who do not practice mindfulness or meditation are completely unaware of their underlying emotions and thoughts. Thoughts and emotions are connected – we cannot have negative thoughts without a negative emotion following.

When we live in a hurry-up culture and a culture that emphasizes the ego, most of us are in the dark about how other people feel; most of us don’t pay attention to our own bodies or emotions, let alone another person’s.

The challenge of caring for someone who has a dementia-related disease leaves very little time for the caregiver to dwell on his own emotional state. And that’s a problem.

Because it is in mindfulness or sitting in silence (or meditation) where insights to our real state of mind occur.

Most caregivers spend their day supporting their loved one and managing their symptoms: toileting, bathing, dressing, feeding, laundry, doctor appointments, and management of medicines/prescriptions. Sometimes the person is in a wheelchair or uses a walker or cane so heavy lifting or supporting the individual is necessary throughout the day and night, a physical toil.

Many nights the bed linens will need to be stripped and laundered. And most times, pajamas, too.

If the parent or loved one has ‘sundowning’ (which is fairly common – day and night turned around) then the caregiver will be awakened throughout the night and on “high alert” to listen for the night wanderings. Unfortunately, the person with a dementia-related disease is often agitated at this time and symptoms become more difficult to manage. Ultimately this translates into less sleep for everyone in the household – especially for the person with the disease and for the primary caregiver.

As I wrote in my free-eBook, meals, laundry and housekeeping will need to be attended to throughout the day – meals, snacks, drinks, toileting, personal care; repeat.

The individual will need to have regular medical check-ups, blood work, hospital appointments, and prescription pick-up. Banking and financial matters will be the primary caregiver’s responsibility, along with your loved one’s home maintenance and responsibilities, not to mention your own home’s maintenance and care.

And sadly, most of these tasks will need to be done with cajoling and subtle manipulation so that the individual will oblige. Many persons with Alzheimer’s will be upset with the caregiver, stubborn, angry or resistant and demanding at times as their world is changing too quickly for them to understand and their loss of control is terrifying to them. Many stubborn acts of resistance are due to their fear – that is the only way for them to express their loss of control. Both the person with Alzheimer’s and the caregiver will be emotionally and physically weary.

Caregiving fatigue will often follow and it has many symptoms: fatigue, sleep deprivation, anxiety, stress and depression. And the experts remind us that stress leads to illness (which makes us more stressed).

When our stress levels become so high, we become disinterested in life and we begin to lose hope that this difficult journey will ever end. Did I just write that we begin to lose hope that this difficult journey will ever end? What kind of horrible caregiver am I to think such a thought? Now, I am more stressed.

What if I told you that it is normal to feel some resentment, anger and guilt while caregiving? What if I told you that while doing research over the years, that I have discovered that it is perfectly normal (when stressed to the max and so bone-weary) to have such emotions?

We cannot take care of ourselves and hope to heal if we cannot feel compassion for ourselves and that process begins with recognition and awareness of our thoughts and emotions.

And that is where mindfulness is the key to healing ourselves.

Our anger or resentment or caregiver fatigue is a red flag to remind us that we are off-balance – we need to pay attention to an issue that hasn’t yet been accepted or resolved. (Perhaps you have not accepted that your loved one has this disease, and so you are still fighting it. Or, perhaps you resent the time that it takes to care for someone because it means less time to care for your spouse and children. Or, perhaps you are caring for your spouse, and deep down you are terrified of being left alone.)

If we sit just for a few minutes throughout the day, in silence and in stillness, and ask ourselves a few questions:

Why do I feel this resentment?

Why am I so angry?

Why do I feel guilty?

Why am I trying so hard to be the perfect, supportive caregiver?

Allow yourself to just sit with whatever arises.

With honesty and truthfulness, allow yourself to look at your situation, at your relationship with your loved one, at the disease, and the sorrow and the sadness.

Allow your feelings and your thoughts to come up. We cannot heal if we do not recognize and then accept these emotions that we have been spending so much time trying to hide. We think if we push the emotions down or away (or ignore them) that we will be able to carry on. But the truth is that these emotions (without addressing them) will become toxic and harmful. The truth is these emotions never go away or disappear – they just fester.

Recognition and acceptance of our underlying emotions can (in time) lead to compassion for ourselves, and this self-compassion will lead to forgiving ourselves. When we begin to forgive ourselves with compassion, we will open our hearts to forgiving others. Our compassion will expand towards others, and kindness and love will enter.

It’s a heavy burden to feel guilt and resentment when caring for a loved one. Imagine how freeing it is to allow ourselves recognition, acceptance, and forgiveness of our emotions.

Imagine how healing it is when we accept that we are mourning for our loved one – even though he/she hasn’t died! (Yes, it is normal to grieve before your loved one dies – anticipatory grief.)

It’s okay and normal to mourn the many losses that surround the prognosis of Alzheimer’s disease: our loved one is no longer the person that he was; perhaps our loved one does not remember us; our loved one cannot support himself; our loved one has lost many of his abilities; our relationship has changed – we are the primary carer now (the roles have reversed); we are fearful of the future and what it may bring; our life has been drastically altered; our own health and well-being has suffered; perhaps our family sees less of us because we devote a full day to caregiving; we want our old life back, before Alzheimer’s entered our life. And we are full of sorrow when we see how our loved one suffers. We are heart-broken.

Once we face our fears (and name them aloud), we are able to let go of them, almost as if these thoughts that float around in our subconscious create havoc wherever they land, and once acknowledged – that is we pay attention to them – they begin to shrivel up and slowly dissipate. (Have you ever had ideas and thoughts jumbling around (portmanteau word: a jumble that tumbles) making no sense, and then began to write? Just the process of writing your stream of consciousness helps. As if we pluck these ideas from the interior muddle, and plop them down onto paper and poof! They no longer randomly float in our head. The muddle clears.)

I often think of Pema Chodron, Tibetan Buddhist, who advises us that when we run from the monster in our nightmare, we are terrified…but when we stop and turn around and finally stare the monster down…we find peace. The monster shrinks in size, and when he shrinks, we become more aware of his vulnerability. We begin to feel seeds of compassion for the monster.

When we dwell in our heads with thoughts and fears about… what if?… we are not present. When we wish the difficult journey was over or that it had never happened, we are rejecting the present moment. We are rejecting our reality; we are rejecting life as it unfolds.

Caregiving is a challenge, and there is no denying that fact. But when we cannot accept the prognosis or our reality, the challenge will even be more difficult. Most importantly, our time with our loved one will be fraught with stress and sadness.

Mindfulness or being present or paying attention to the present moment will lead us to a compassion-filled journey. It will allow us to be authentic. We will mourn, yes. We will cry, yes. But those moments will be real. We will not try to deny our sadness. Instead, we will lean into them and just feel them. Allow them space. And it is in that space, that Grace enters. And as Thich Nhat Hanh often reminds us to tell ourselves, “My darling, I am here for you.”

When we allow compassion, love and Grace to enter, our awareness will begin to notice the joy and the love within the sorrowful moment.

While I mourned by my mother’s bedside while she was dying, I watched the sun rise each morning. The magnificent palette of the skies will stay in my memory bank forever, as will the loving and kind gestures of the staff. Those moments are joy and love-filled, side by side with sorrow and tears.

Mindfulness allows for an easier journey because it will be filled with little sacred moments – of laughter, peace and fulfillment, reconciliation and forgiveness. Sorrow and tears, too.

Gifts; all gifts.

 

 

 

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?