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!”