Wednesday, 27 February 2019
I snuggled in my spot on the couch watching Midsomer Murders on Netflix. This episode involved a suspicious death at a retirement home. The main character's daughter came to visit an elderly aunt, but yielded to the charm of another resident--a gentleman who might have presented as quite the rapscallion in his youth. As she leaves, they chat, and he becomes pensive. "You know the worst part of ageing?" he says to her.
He stares into the distance as he answers his own question. "You disappear."
I turned off the program, as my interest in the murder vanished. This man's profound words touched a nerve, and I needed to think about it.
Having worked for so many years in an environment where seniors are valued, the comment jarred me. Yet it contained truth.
What does the world value? The easiest way to answer is to look at advertisements. What is sold and what do we buy? Looks, position, power. Smart people at the cutting edge of whatever new development happens. Strength, fitness, fame. We value people at the top of their game.
Does that describe many elderly people you know?
The people I work with have wrinkles, sagging skin and marks on their faces which can't be erased by any cream bought at the drug store. They retired, and although many of them still live vital and interesting lives, society no longer values their contribution. For the most part, they wield little power in the traditional sense of the word. They don't live at the cutting edge or the top of anything. Most are frail, and fitness is measured in how much mobility they can maintain. Many of them made huge contributions to art, literature or business. They changed their world. Our world doesn't feel all that interested.
If we let them, they too will disappear, fading into the pages of history.
DON'T LET THAT HAPPEN.
In my job, I discover these amazing, interesting people. Which passion did they pursue that became a career? Did they do research in children's diseases, or did they raise incredible children? Did they write books, or travel and see awesome sights? Did they fight in wars, or live through indescribable horrors? Did they teach in a one-room schoolhouse or learn in one? My opportunity lies in asking these questions and uncovering the people inside--not just what they did, but who those experiences turned them into. My privilege and responsibility.
In our elderly, we have depths of wisdom which we need. We need to know what they learned from living through a war, a depression, in a difficult and frightening world. What did they learn, and what can they teach me? Or you? They experienced all kinds of relationships. They made mistakes and learned from them. They don't hold perfection, but they hold wisdom--a commodity we can't let slip away.
What would happen if we did? Imagine if we lived our lives in the moment, chasing after the things that seem important--the fame, the money, the good looks etc.which I've already mentioned. Or maybe we possess more depth, but we make our way forward with our own lives, and never ask the questions that matter to our elderly. We look after them and we love them, but we let them slip away without ever getting to know them. We don't value what is valuable until it is gone.
What would happen?
We would lose the opportunity to be enriched. The depth of experiences, the funny stories, the lives well lived, would slip away. Instead of the cream, only the skim milk of our lives would remain.
We would fade, wash out, disappear.
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Care Partner Wednesday--Don't Let Our Elders Disappear
Wednesday, 20 February 2019
I wandered from room to room this morning, looking for an unused over-the-bed table for a resident moving in next week. In one of the rooms, I stopped, sat on the bed and let the experience wash over me. On the bureau sat a vase of grocery store flowers. Nothing spectacular about that. Propped against it sat a hand-made sign. A plain wooden frame with paper glued on the front. The sign read, "Doug loves Mom."
Doug, probably in his 60s, doesn't look the least bit crafty. His mom suffers from late-stage Alzheimer's and profound aphasia. Her garbled speech makes no sense, she doesn't walk well, and she probably couldn't tell you her son's name. Yet he reached beyond comfort to remind her every day of his love.
The Facebook post made me cringe and wish I could talk with the person who wrote it. "Alzheimer's is such a terrible disease. A bunch of us went out for lunch with Mom. She looked right at me and said, 'Is Nancy coming?' I'm Nancy." I hear this person's pain as she contemplates her dear mother not recognizing her. This moment, the moment when recognition fails is one so many dread. My own mother had Alzheimer's, and although she died in an accident before she forgot my name, I remember her pain at not knowing the names of her beloved flowers. It hurts. However--
Get over it. These words sound harsh, and I rush to explain. Not everyone with dementia forgets names. But they might. Of those who forget names, many remember the relationship, although they probably can't name it. Doug's mother couldn't tell you the person who eats lunch with her weekly is her son, but her face lights up when she sees him. She knows. Nancy's mother is looking for her and doesn't recognize her. It hurts, but get beyond it. Your mother sits beside you and needs reassurance. Try this response, while giving a huge hug: "Yes, mom, Nancy is sitting right here, and she loves you so much."
One of our residents suffers from profound dementia but occasionally has what can only be described as amnesia as well. Everything familiar--her environment, her care partners, everything she knows drops away leaving her frightened and feeling alone. "I don't know anyone." Her advocate reassures her by saying, "You don't know anyone, but we know you really well. You can feel safe here." She relaxes until familiarity returns.
This whole forgetting thing--it might happen. Your loved one might forget your name, your relationship or what you mean to them. Whatever pain this evokes, realize this: it doesn't define your relationship. Don't make it bigger than it needs to be. Alzheimer's doesn't have the power to cancel love.
A precious video on Facebook shows a mother and her daughter lying on a bed. From their conversation, you can tell the mother has dementia and sometimes doesn't know her daughter. Mom says, "Well, I love you." The daughter replies, "Do you know who I am?" Softly, Mom says, "Kelly." Surprise and delight spring to the daughter's face. At the end of the clip, she says, "What are you thinking right now?" Mom says, "I'm loving you."
I'll say it again. Alzheimer's doesn't have the power to cancel love. It can take away names and memories but never love.
Doug loves Mom.
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Care Partner Wednesday--What's in a Name?
Wednesday, 13 February 2019
I watched him travel down the long hallway to our dining room, his halting gait reminiscent of the wedding march. Craig had taken the bus provided to the local grocery story that morning and was now returning to enjoy lunch with his wife. As he drew nearer, I saw a plastic grocery bag in his arms, and I knew what it held. Like a shy schoolboy, he handed it to her, but it's hard to be subtle in a dining room full of curious eyes. She opened the bag to reveal a bouquet of red carnations, and she blushed like a bride at the hoots and applause of those around her.
Craig served as his wife's care partner for the last few years. He went after her when she disappeared into the street and he slept by the door so she couldn't leave without him. He struggled with exhaustion and felt his heart break the day she saw him as a stranger in her bed. Reluctantly, he made the decision to move her to care. Since then, he's eaten lunch and dinner with her, taken her to concerts and even helped her decorate for a birthday party. Craig functions as her care partner, but today with a handful of red carnations and a loving smile, Craig's role remains husband.
Roles are one of the difficult aspects of being a care partner. Craig remains Sarah's husband, but the added role of care partner can be confusing, especially when you need to switch from one to the other several times a day.
Your princpal role--husband, wife, daughter, sister-- remains. You still live that role. However, your role as care partner is now a part of the relationship. You may feel your life as care partner is not what you envisioned for your marriage or the rapport you had with your parent. This new reality may disturb you. Flexibility and the ability to switch between roles will save you.
Contrary to the maxim, ignorance is never bliss. Whether dealing with a specific dementia, another disease such as Parkinson's or heart disease, or whatever the medical issue, find as much information as possible. Online you can probably discover multiple groups with a wealth of information for the disease you cope with. These groups often have chat lines where you can ask questions of others coping with the same issues. Remember they aren't experts, but they have experience you can draw upon. Ask your doctor for resources as well.
Never try to walk alone. The role of care partner leaves you asking questions, making difficult decisions and wondering about the next move. The future sometimes feels uncertain. If you can talk to others facing the same struggle, others who understand and may have answers, reassurance follows. Find a support group. If a physical group doesn't seem possible, or attending meetings is too difficult, look for an online group. Absolutely don't try to walk this journey alone.
You may look at this heading and say, "Really?" Gratitude for your loved one, even when they are changed by whatever they struggle with, remains important. The husband we married, the sister we grew up with, the mother who nurtured us still resides within. They changed, but all relationships change over years, even without dementia or other diseases. Look for the smile, the sense of humour or the twinkle in the eye that remains. Appreciate the time you have together.
Tomorrow brings no promises.
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Care Partner Wednesday--Care Partner Essentials
Wednesday, 6 February 2019
They started today, all shiny and new. Twelve eager PSW students coming to learn among us. All of them completed their schooling, and now they learn the practical aspects of becoming a care partner. Each of our care partners functions as a preceptor and takes a student under their wing to mentor them. We invest in their careers and they provide four extra sets of hands. Friendships develop, and in the end, they take valuable skills with them. Not only how to use a lift or give a shower, but a new respect for elders. Each has the opportunity to receive from the elders they serve.
Don't you wish you could learn like this? Those who care for family members become care partners in a different way. Not a conscious decision and the role may creep up on you. Your situation changes a little, then a bit more. You adapt and change with it. Each tiny adaptation becomes your new normal, until one day you look back and realize you left normal far behind.
When Bill was diagnosed with heart disease, the change seemed small at first. The phone conversation with the news was startling, but medication put things to rights, and although he seemed to take a bucketload of pills, they kept him stable. For years, we lived this normal.
Coming home from his sister's birthday party, he experienced severe pain in his foot and could hardly drive. We made it home, and the next day at the doctor's office he discovered he had gout. He made his way to the pharmacy to fill his prescription but collapsed in the parking lot. The intense pain triggered fibrillation in his heart. I walked in the door to a phone call from the pharmacy. My husband had left for the hospital in an ambulance.
From that January day until he died in October, normal slipped far away from us, and I became a care partner. It took many months for me to realize, and each downward slump brought new questions and fears. Most of the time I had no idea what to do or where the next step lay.
Do you feel this way, care partner? Some days, when you've found some level of stability, you may think, "Okay, we can do this. It's different, and not what I chose, but it's not so bad." Then it changes again.
The day the doctor told Bill he had to quit work and go on disability, I remember those exact feelings. Different, but not necessarily bad. We could do this. We gathered the children to tell them, and they supported us the best they could. My son-in-law prayed. We felt close and hopeful.
But a few weeks later, there was another change and another. We struggled in a dizzying spiral from which we never recovered.
Becoming a care partner is seldom an abrupt change from one day to the next. Usually, you slide into the role, scrambling to figure out what you should do next. Unlike my excited friends who started learning today, you may not realize you are a care partner until several months in.
What helps? Although everyone experiences it differently, there are some basics to help a care partner make the important decisions and fulfil their role without falling apart. Next week we'll look at some practical steps to help you become a care partner.
Do you have advice? I'd love for a dialogue to develop. Give your input in the comments, so we can all share.
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Care Partner Wednesday--Becoming A Care Partner
Care Partner Wednesday--Becoming A Care Partner