Tag Archives: grief

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.

 

 

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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.

 

 

 

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.

Peace.

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.

Harmony.

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.

Laughter.

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.

Love.

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

Interbeing.

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.

 

 

 

 

 

 

 

 

Acceptance and the reality of a long-term care facility

It happened again. Someone approached me at the long-term care facility where my mother once lived (she died just over a year ago) and where I now volunteer, to talk.

Just when I think I will stop blogging about caring for parents with Alzheimer’s, something happens to pull me in.

This family member looked anxious. She doesn’t visit every day, but she does visit often. And she is thoughtful when she visits. The room of her loved one has all the elements of considered care and placement of mementos – photos, art, books, comfortable chair, lovely seasonal wreath on the door, flowers and plants. Cards and tokens are pinned to the bulletin board. The room is bright and airy; the curtains are pulled back to expose a huge picture window.

One of the most challenging and difficult times is how we adjust to our new reality – our loved one has now entered a care facility. Most of us recognize that this monumental step signifies a final stage; we recognize that it is highly unlikely that our loved one will return home. Unfortunately, our loved one often does not recognize this; they live in perpetual wanting to go home.

This finality unnerves us – it represents many losses for both us and our loved ones. Loss of independence, loss of health, loss of mobility, loss of our home (and all that our home represents) and more.

So as family members, we struggle with the losses and the grief and sorrow that is attached to those losses. And we are tired. We are bone-weary. Many family members carry the load (the responsibilities and the sorrows) alone.

We are filled with incessant thoughts and emotions: a 24-hour, non-stop tour of what ifs? The ever-running reel fills our bodies, minds, and spirits with toxic energy. Self-care took a detour ages ago.

Our attention and our energy has lived in the past or in the future; but seldom, in the present.

Reality lives in the Present. But, sadly, we have chosen to live in the past or future in our heads because we do not accept the present.

So in awareness of my present, I sat down with my new friend. (We are all joined together on this journey.)

Most people just want to talk. We want to be heard. Who else will listen when we are suffering? The rest of the family is suffering, too, right? And most of us want to protect our loved ones from our worry and stress…so we do not share our thoughts. So we hold it in.

And so she talked. And I listened.

And when she had finished, I passed on a little of the lessons that I have learned from my journey – a journey that is rarely unique.

I remind her that “your mother’s journey is not your journey. Even though you share some of it with her, you are not your mother; this is not your life. You are not here to heal her. That’s not your job.”

“Your only job is to love her. And that is evident in your actions and your words. Give yourself permission (and it is a choice) to love life and find joy and contentment, even today, right now, while you visit and care for her.”

Earlier, when I parked my car outside the care facility, I could hear a cardinal in the distance. Its song was distinctive. I stopped and searched the pines that grow along the fence of the grounds of the facility. I spotted him (deep red) at the top of the branches. I stood and listened to his song for a few minutes. I was present.

Later, when the woman approached me, I knew instinctively that she was seeking me out to talk. I have learned to pay attention to present moments when I visit and volunteer; I have learned to listen to my instincts when I encounter residents, staff members, and family.

Listening and paying attention to my instincts is an ability that each and every one of us possesses – but we need to pause to allow our instincts to arise. It’s an ability that we must nurture.

Awareness, first. Awareness is key. Awareness of the fact that we are tired, that we are grieving, and that we have unrealistic expectations: If I do more, visit more, talk more, I can change her (heal her) and she will be happy.

Next, acceptance. A simple concept. Too simple? We have been trained all our life to conceptualize, label, edit, analyze, reject, deny, dismiss…but too accept the present moment? The present moment is reality. Eckhart Tolle suggests that to not accept the present moment means not to accept our reality – and he calls that madness.

How can acceptance lead me to peace? How can acceptance alleviate my problems?

When we accept the reality of the present moment, we let go of expectations; we let go of worry and stress about the past and the future. We let go when we accept and recognize our emotions – oh, I am filled with worry about my mother; oh, I am filled with worry that my life is over; oh, I recognize that I am angry about this situation; oh,  I am filled with guilt.

In other words, by accepting our emotions, we accept the present moment. Acceptance or recognition of our emotions allows us to feel compassion for ourselves, rather than fighting our emotions (which makes us feel worse). So acceptance doesn’t alleviate the problems that we face in this moment, but it allows us to step back and just allow the emotions – space. Space. Take a breath. Allow ourselves to release the pent-up energy of these toxic emotions that are consuming our bodies.

Again, Eckhart Tolle urges us to recognize each moment as if it were our true purpose in life.

That practice can transform your energy. Instead of worrying about the past or the future (what ifs), we can pay attention to our present moment. We would enter our loved one’s room as if she was our true purpose in life. You will accept whatever happens as you enter. Is she upset? Then calmly bring your attention (and peaceful energy) to her needs. Calmly and lovingly. Listen. Pay attention to her face and determine if she is in pain? Is she tired? Is she anxious? Sit down and assess the room. Is it too dark? Are the lights glaring? Is the television on? (Turn it off.) All of the time, staying alert and present, but calm and peaceful. Allow her to recognize that your energy is one of compassion, kindness and love.

In stillness, listen to your own instincts. You might already know what is wrong (you know her better than the staff). Answers will arise within you.

You might suggest a walk outdoors; a shared cup of tea; a story; a visit to another resident’s room or a visit to the activity room.

Or you might just want to lean in and whisper, “I am here for you.”

When the visit is over, hug your loved one and whisper some loving, kind words of comfort. Assure her that you will visit again soon (you don’t need to state a date) and that she matters to you. And allow her to know how much this visit meant to you.

Ignore any words of complaint or of dissatisfaction (or worse). Detach yourself from her negative energy. Recognize that her complaints are valid; but that you cannot heal them or change her thoughts.

You are doing the best that you can. Your presence (staying present to the moment) is your best. And that is enough.

At the moment, while I am writing this post, I glance up and see that it is snowing outside. My back yard is a winter wonderland. After early spring-like weather, and plants that have emerged from the dark earth, the air is filled with large, white snowflakes. I stop to breathe in the view. It won’t last – the temperatures are too high and the ground is too warm. I love this in-between season: winter doesn’t want to leave but spring is impatient; she is pushing and shoving winter out.

I rarely complain about weather – wasted energy, in my opinion, to complain about the reality of weather. Besides, nature never ceases to astound me. Full of beauty and wonder; harmony and balance. And transience. For me, Nature is ephemeral and that is her greatest lesson (a gift).

What I really want to say, but won’t, to the family member who is tired and grieving is this:

You think that the more you visit her, she will appreciate your efforts and tell you that she is happy now. You think that if you do enough for her that she will stop and tell you that she forgives you and that she doesn’t blame you because she now lives in the care facility.”

What if I told you that in all the years that I have spent, either care giving or visiting a loved one in a long-term care facility or in a hospital, or hearing other family members tell me their stories, or volunteering, I have never once heard of a resident or a patient telling their loved one that they are happy where they are – that they like the care facility or that they are glad that they live here. Never.

So what if I offered this: why waste time and energy (and your health) trying to beat the odds? Let go of your expectations. And if you cannot do that, then at least recognize the pattern of your actions. And maybe, in time, you will laugh at yourself (with compassion) that it is not worth the suffering.

Your loved one is on a different journey than you…he or she is suffering from many health issues, including a decline of the body and the mind.

You are healthy and not in decline. So allow your health and wellness be the energy that you bring to the visit.

Everything is transient. Each moment doesn’t last. The winter snow melts and spring emerges.

When we practice living in the moment (in the Now), we begin to appreciate all the facets of the moment – the beauty and wonder of the surroundings, the uniqueness of each person’s face when we meet and encounter people, the love, the gratitude and the compassion that wells up within us when we sit with our loved ones. But we have to allow awareness or recognition of the moment to arise, first. Or we will miss it all.

“Whatever you accept completely will take you to peace, including the acceptance that you cannot accept, that you are in resistance.”…Eckhart Tolle

 

 

 

 

 

 

 

 

 

Pull the car over and just cry

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“Pull the car over and just cry. Give in to your sorrow.”

My neighbour stopped me last Friday, just when I was about to get into my car and run errands. Her mother died a few weeks ago, so I closed my car door and walked over to her.

I need your advice, she said. “I know that your mother died last year and you seem to be coping well.”

I didn’t answer her. I just listened.

She continued, “I drive around and I just want to pull over and cry my heart out. I don’t know what to do with myself or my emotions.”

She said a few more things… about caring for her mother for a long time, and how lost she felt now that her mother was gone. And she talked about how sad she felt. Everything she said resonated within me.

Finally she took a breath and looked at me, “What should I do? Do you have any advice?”

Before I could edit my words that were forming in my head, the words popped out…”Why don’t you just pull over and have a good cry? Give in to your emotions.”

She blinked. She blinked again. She stared at me intently. “Oh!” she whispered.

Her eyes welled up and she whispered, “Thank you.” And she turned away from me and went back into her house.

“Pull the car over and just cry.”

How little we need from each other when we are overcome with grief and sorrow.

While I was writing my Ebook about caring for parents with Alzheimer’s, I took a couple of courses in palliative care, and one of our instructors (a palliative nurse for many years) encouraged us to read a book, I Don’t Know What To Say – How to Help and Support Someone Who is Dying, by the late Dr. Robert Buckman.

When I first learned of Dr. Buckman, an oncologist, he hosted a television show in the 80’s, a show about sex. He was a warm and funny man and I immediately became a fan. When I Googled Dr. Buckman, I learned that he came to Canada in 1985 and worked in Sunnybrook Hospital and later, Princess Margaret Hospital in Toronto. He wrote a lot of books and publications and made many videos, combining medicine and humour. Interesting – I have always thought that people who combine science or medicine (that is, facts and information) with humour are gifted.

Dr. Buckman’s book set me straight many years ago. It was a difficult book to locate as it is out of print, but I bought a second-hand copy, on-line. I consider his I Don’t Know What To Say… a bedside table book – it is my go-to reference book whenever I learn of a friend’s poor diagnosis.

If I had to identify only one lesson that I have received from this book over the years, I would have to say it is: Listen. Say nothing. Just listen.

So when my neighbour asked me for advice, my other persona (I can fix this! persona) wanted to hijack the conversation; but, thankfully, I could hear Dr. Buckman whispering in my ear, just listen.

I wish I could say that I am a good listener all the time. It is actually the only 2016 intention that I made this year: Listen more. But the reality is that I often talk too much, especially when I am confronted with someone’s need to bare their soul to me. My default reaction is “Okay, I have just hung my armchair psychoanalyst shingle – I’m In – and I am ready to dispense advice.”

But wisely, Dr. Buckman encourages us to just stay still when someone comes to us with their sad news – a poor diagnosis or prognosis or a death of a loved one – and just say nothing.

He reminds us that patients or family members of someone who is ill or dying do not want us to solve their problems; they just want our ear. They want to talk and they need someone to just listen and say nothing. We can murmur yes, or nod our heads, or we can echo back to them what they just said as an affirmation that we are hearing them (correctly).

One of the most interesting things he wrote about was a simple lesson about listening.  A research study was done in the United States in which untrained people were taught to “counsel” volunteer patients – they were taught to just sit and listen and say “I see.” All of the patients thought that the counselling sessions were excellent, and asked to see their “therapists” for more sessions in the future. The untrained people (just by listening) were viewed by the patients as “therapists,” helpful “therapists,” no less.

Dr. Buckman was making a point – listening is a valuable and worthy strategy when dealing with people who have problems. Well, people with problems would include…all of us! The whole Universe (unless you are Thich Nhat Hanh or the Dalai Lama).

Dr. Buckman’s advice is gold; it’s an alchemy.

Listening is a therapeutic tool because it allows for that sacred space: the space where there is stillness and silence. In that sacred space is where healing takes place and where acceptance lives. It is an energy that is real, and when we most need comfort and support, that healing energy allows us to talk freely, without distraction, without judgment. Listening can transform someone’s pain – just by allowing someone to share their pain and sorrow. When we listen to someone (without giving any advice), we silently transmit a message: I’m here for you; whatever you say, I hear you. And that silent message allows us to connect.

Thanks to Dr. Buckman I learned that I didn’t need to cure/solve/fix my neighbour’s grief.  Nor did I need to advise her – she already had the answer within.

Her first comment to me was that when she felt so sad and overcome with emotion, she just wanted to pull her car over and cry. That’s the answer.

Our hearts and our spirits always push us in the direction that we need to go…that little lesson I know for sure. Her heart was telling her to just cry and let it rip.

Holding on to our emotions is never a healthy coping strategy.  (If you are in a crowded arena with complete strangers,  you might want to hold in your emotional buildup. Like the time I was in a nurse’s office answering questions about my father’s needs on the first day of his entering a long-term care residence – I spotted him on a gurney in the hallway and I let it rip. I was an emotional geyser that blew up. I am sure that I traumatized the admitting nurse.)

No matter our age, losing a parent is a huge milestone in life. And one of the means of allowing ourselves to let go of the grief and sorrow as it wells up within is to…weep.

When we allow the emotions to flow, we show compassion to ourselves. If we feel anger, then acknowledge it. Sit with it. Whatever it is that we are feeling, whether it is sorrow, resentment, or anger – just sit with it and allow it. Do not fight it; or push it away; or ignore it; or look for distractions. Sooner or later our feelings need to vent. The beauty of this technique is it is so simple; no editing, no revising is necessary.

We need to allow our feelings, a voice. Sit with them and accept them and in time answers will arise and we will figure out why we are angry or resentful. And we will learn to let go. But first, there must be awareness.

We are human. And humans feel.

Pull the car over to the side of the road and just cry.

Trust me on this…you’ll feel better.

 

 

 

 

 

 

 

 

 

 

 

 

What happens when we cannot accept our loved one’s prognosis?

snowdrops always return in the early days of spring - a sign of hope and re-birth

snowdrops always return in the early days of spring – a sign of hope and re-birth

Your mother probably has Alzheimer’s or a dementia-related disease. There is nothing that we can do for her. She has broken her hip and her wrist and after her bones have healed, we suggest that she cannot live alone. You should put her name on the list for an opening at a long-term care facility. You are probably looking at a wait up to two years. In the meantime, she will stay in the hospital.

Words that sounded familiar – an echo of a similar conversation that we had when my father fell on the stairs and an ambulance took him to the emergency department of the nearest hospital. At that time, 3 years before my mother fell also, my dad lived at home and my mother, sister and I cared for him. He was not diagnosed with Alzheimer’s but we knew that he had the symptoms; my mother refused to take him to the physician to be assessed. She denied that he had a dementia-related disease.

But after my father died, I knew in my heart that my mother was showing many signs of dementia, herself. My dad’s death had transformed me – love, compassion, kindness and other lessons from my journey of caring for him – and so I was able to accept my mother’s illness more readily, without the burden of guilt, resentment, anger and denial. Those were emotions that travelled with me when I cared for my father. I lived in a world of bewilderment and hurt during that journey.

When my mother had to go to a long-term care facility, we faced the difficult decision with an open heart and we accepted the reality. We did not fight it as we had when my father was ill. We accepted that we had nothing left over after his death; we had little time to refill or replenish ourselves. The well was empty. And we cannot look after someone else when we are not whole ourselves. That is a lesson that still resonates with me today.

There is nothing that hurts us or our loved one more than our non-acceptance of a diagnosis or prognosis. Nothing.

I have learned when we accept the reality of the illness (and what it means in the future) fully and completely, we open up our hearts and our minds to living today, and not wallowing in death and dying.

There is a world of difference, my friends. When we do not accept that our loved one is ill (that he has a dementia-related disease) we live in denial and that leads to a myriad of emotions, none of them loving or compassionate. Hurt, suffering, pain, sorrow, resentment, anger…all of these emotions arise (and it is natural for them to arise) but we cannot let go of them when we live in denial.

And in the process we begin to hurt our loved one. Our sorrow or hurt spills over and touches them. They will feel our energy – an energy of a stewing pot of negativity; not one of love and compassion.

Our loved one will feel ashamed and full of self-blame. He will begin to constrict and instead of being open and sharing his emotions and fears, he will do the opposite – he will keep them close; he will hide them. In our non-acceptance of the disease, and in our anger that our loved one is losing his cognitive abilities, we close the door to an open and loving connection.

When I learned to accept that my mother, too, had a dementia-related disease, I vowed that now that I knew better, I must do better (Maya Angelo) and so I let go of my fears and tried to live in the Now. I vowed to visit her often (between my sister and I we visited her daily as we rotated visits – three days one week, four days the next) but never walk into her room with negativity. I left those doubts and fears in the parked car. When I visited, I went with no expectations, no hidden agendas. Just love and compassion. Whatever greeted me as I entered her room, I accepted.

Sometimes we sat outside in the garden and listened to the birds, and other times we sat in the activity room listening to music, or attending the music therapy sessions. We sang hymns together and laughed with the other residents.

When I cared for my father, there was not a lot of laughter or singing in our home. We carried his illness around and rarely laid it aside – we were sad and I often found myself crying in the bathroom, when I found five minutes to finally be alone.

I look back on those days with regret that I did not accept his illness – all those days wasted in fear! If I only had learned to accept my reality, instead of resisting it every day.

But I have come to a peace about that time. In retrospect, I realize those days made me who I am today. The lessons (I call them gifts) from my journey have transformed me.

My compassion that grew during those days and after have allowed me to live a life of joy in living in the present moment; finding solace and comfort within at any time; living in mindfulness each day; finding my true self. I have learned compassion for others and for myself. That compassion has led to less judgment and more acceptance of others and for myself.

I have accepted that I am imperfect. I have accepted that when we look after a loved one who is ill, we will find peace when we accept the moment as it is. Sometimes that will mean sadness and grief layered upon regret that time is running out. We accept that, too.

The peace comes when we accept the truth of the Now – the reality of the present moment. We suffer when we look away or deny the reality. Or if we try to take control or manage the Now. We cannot control illness – we cannot change the prognosis. No matter how much we love someone, we cannot cure them. (Let that thought go.)

But we can change the energy that surrounds us. We can control our thoughts.

Our loved one who is ill wants only one thing from us – he wants our acceptance of him as he is right now, even ill. He wants to talk about his fears; he wants us to let him know that we will walk this journey beside him; that we have his back.

He wants to know that he still matters. When we sit beside him, when we listen, when we laugh with him, when we share the present moments (watching a sunset together, listening to a choir or a guitarist, hearing the birdsong, reading aloud, sharing a cuppa) …this is how we allow him to know that he still matters to us!

Just listen. Let him express his fears and frustrations. We are not here to cure our loved one. We are here for one reason only: to love.

Love has another name: Acceptance.

Let us not shy away from the gravity of a diagnosis or prognosis – but let us lean into it. Let us express to our loved one (in our words and in our actions), You are loved. I am here for you. I have your back. We will walk this journey together. You matter to me. You are not alone. Let’s enjoy the present moment…together.

All gifts.

 

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.”