Tag Archives: visiting a long-term care home

Your words, not mine; your stories, not mine.

Sunset over Charlottetown HarbourI am watching my resident sleep. I’ve been sitting beside her for fifteen minutes now, and the staff members assure me that she will be awake shortly. She doesn’t usually nap at this hour, they say.

I don’t mind as I am narrating a story in my head – all quiet moments are gifts of time.

The last couple of weekly visits have changed – the routine of greeting my resident, talking for a few minutes to reassure her of the reason for my visit (I am recording and writing down her life stories and memories), turning on the recorder, and prompting her with a few questions to stimulate her life stories has disappeared.

Lately, during our visits I notice that she is either very drowsy or somewhat confused, and conversations about her family, childhood, school antics or young married life have dried up.

I have had to adapt, and I no longer ask her questions or give her prompts. Only a month ago I had inquired about her grandchildren and she had responded with a lovely story.

But not today.

When she awakes, I have to remind her who I am (Gwen’s daughter – you remember Gwen – she lived across the hall and you shared many cups of tea together) and she smiles her beautiful smile, and although I can read on her face that she is happy to see me, I sense that she no longer remembers Gwen (or me).

So I try again. More confusion.

In my cloth bag I have a copy of her life stories to date, so I retrieve the typed pages which are in a plain, three-ring, navy blue binder. I place the binder in front of her on the lap tray of her wheel chair and open it to the front page. I have learned an 8” by 11” binder is easily held by a senior.

She stares at the page for a very long time, and I am leaning over to close the book when she reads aloud her name and the words, “Life Stories.”

She looks at me and grins, and I urge her to turn the page.

She begins to read her very own, unique stories of her past. Unexpectedly, I note that she is a good reader and am thrilled because I didn’t realize that she still possessed the ability to read. My own mother had difficulty reading when her dementia progressed, and eventually she lost the ability completely.

I remember the October before my mother died in December, she signed a birthday card for my sister that I had purchased for her. I asked her if she would like to sign the card herself, or would she like me to sign it. She answered (as I knew she would), I can do it myself. She spent a few minutes gathering her strength to sign the birthday card to my sister, Sue. Then, she scribbled (almost illegibly): Love, Sue, instead of Love, Mom.

I loved that card. Because her intention (love for my sister, Sue) was so beautifully evident.

I draw my attention to my resident: She is reading aloud her stories…she pauses at the funny parts to look at me and remind me, that happened to me, also. I realize that she is not completely aware that these stories are hers! I keep re-assuring her that they are her stories, and that I only transcribed them. I keep repeating: your words, not mine; your stories, not mine.

When she reads aloud, she re-reads many of the passages and so I lean over and begin to turn the pages, but she stops me, and goes back to the top of the original page to re-read the story. After 45 minutes, we have only read two pages. I begin to panic and worry that we will never get to the end of the book at this rate.

But then I see her face. I begin to really see her face and read her energy. In that moment of being present (truly present) I am aware that she is completely entranced in the story – her story! She is smiling and nodding her head, chuckling (oh, yes, her stories are funny) and then I have an aha moment. My resident is in the moment.  Her moment! She is oblivious to the natural bird sounds outside her window; she is oblivious to the staff who are talking, and pushing carts in the hallway – the noises of life in a long-term care home are a muted constant 24/7.

My resident is in the moment. Time has ceased. Her face tells me that she is a young child again, living a life of scarcity and hardship, but filled with family love, laughter, and richness.

One thing I have learned when transcribing life stories of the residents is that our memories evolve: they don’t change completely, but we, as humans, re-paint them. We brush over the memories that hurt us, or caused us pain. I, too, find that over the years, my hurts and disappointments have been watered down – I have lifted out the colours that no longer serve me.

Like others before her, my resident’s stories have been blended with other experiences and the passage of time, and now understanding and forgiveness is the rich palette that remains. Through the lens of our journey we perceive our parents’ weaknesses, as strengths; their mistakes, as lessons. A gruff father who never spoke of emotions (or feelings) to his daughters becomes the ninety-year old man with Alzheimer’s who never speaks, but utters, I love you to both his daughters whenever they leave the room.

Through him, I learned that disease, dying, and death are powerful teachers. Forgiveness, reconciliation, love and peace are potent change agents. They transform our stories – blending, layering, pulling out colour, until bleeding the stories into one.

Through the process of reminiscing we begin to connect the dots starting with the point of origin to the last dot You Are Here.

These are the insights I have gathered, and these are similar to ones that I hear time and time again from the residents who I sit with. In the telling of our stories, the bad bits get left out and the good bits grow, and we are left with a richness that we had never seen before – colour laid upon colour. A richness that inspires gratitude.

When a resident comes to the end of her life story, I often hear:  I’ve had a good life. Those were wonderful days and I feel lucky to have lived them. I’ve had a good life and I am at peace. I am ready for my final journey. I am content.

Still reading the first few pages after an hour, I eventually tell my resident that I have to leave, and I know that she is disappointed but she closes her book as I promise to leave the binder with her. Yes, I still have lots to read, she informs me, and she adds, it’s a good story.

My intuition tells me that the time has come to end our weekly sessions – she no longer has new stories to tell me. I believe her stories are still there in the recesses of her mind, but they are not accessible as they once were. Like a locked filing cabinet, I no longer hold the key to open it.

When I leave, she grabs my hand and closes her other hand around mine and gently strokes it. Thank you, she whispers. Please visit me again.

I will, I promise.

As I walk through the hallways of the long-term care home, I am reminded once again that the only thing that really matters is our presence. As humans, we all want to know that we matter – that our lives are spent well – whether we are young or old; healthy or not.

And I am reminded that gratitude, above all else, matters, too.

 

 

 

 

 

“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!”