Wednesday, 6 December 2017
On Monday of this week, we started something completely new. We've been planning for weeks and months--years, really. Two smaller neighbourhoods joined and the new neighbourhood of Cedarvale Park was born.
It's happening in stages. On Monday, the new staffing model began. By next Monday, we should have a laundry room, and the following Monday our new kitchen will be ready. Hopefully the shower room will follow closely behind. Stage two is a lovely lounge area, which will be done in February.
But culture change isn't dining rooms and lounges. Culture change is people. "The Eden Alternative firmly believes that culture change unfolds one relationship at a time..."1
Simply put, culture change is putting people before rules or institutions. It's working together, and being willing to say, "That didn't work, what else will we try?" It's giving staff a voice and listening to their thoughts.
Culture change is hard. As my fellow advocate says, it's not all butterflies and rainbows. It's messy. It can be painful. I have been stretched beyond anything I can imagine this week, and it's only Wednesday. I've wondered "can I do this?" several times a day. I've been frustrated and overwhelmed.
And there are moments that it's beautiful. I am growing. We are growing. The elders benefit from each small triumph.
One staff member who, because of the shift she's worked, hasn't had the same opportunities to be touched by the changes we've talked about over the last four years. It's delightful to see her discover that she doesn't need to (and shouldn't) wake sleeping people in the night to change them. She can let them sleep. If she doesn't get a shower done one day, it's fine to do it the next, and if someone who is due a shower is sleeping, she can let them sleep. I told her today that no one was going to say she wasn't doing her job if someone slept in.
Staff from two shifts huddled together today to work out a few problems in the dining room. The common theme was "we're all learning." Ideas and suggestions bounced around the room, and in no time, we had a plan.
There is conflict. There are problems and issues we haven't solved, and many more to come. We'll talk and listen and have the difficult conversations to make it work. It's about improving life for our elders, but this comes as we grow together.
Yesterday, I was just about done in, and I had a few more hours to go. I came out of my supervisor's office and ran into a special resident. She has a most incredible smile, although her conversation is limited. I told her it had been a hard day and I needed a hug. She said, "Ohhhhhhh," and in the most motherly way possible, she hugged me and rubbed my back from her wheelchair. It meant everything to me. Because..."care is not a one-way street, but rather a collaborative partnership. All caregivers and care receivers are described as 'care partners,' each an active participant in the balance of giving and receiving. Together, care partner teams strive to enhance well-being by eliminating the three plagues of loneliness, helplessness, and boredom."1
Culture change is hard and messy and painful.
But a hug makes it all worthwhile.
Care Partner Wednesday-Culture Change is Hard
Wednesday, 29 November 2017
Have you ever been so afraid, your stomach dropped to your toes, your mouth dried to dust and the tears flowed non-stop? That’s how I felt the day I got the letter.
Growing up, I was always the good kid. It’s not that I aspired to sainthood, but I had a horror of being accused of some kind of wrongdoing and would turn myself inside out to avoid it. I could be silenced with a look and controlled with a frown. Although this trait modified as I grew older, it never left me. Nothing could turn my world upside down faster than getting in trouble from a higher authority.
I seldom drove into work, but it was necessary on that grey, November day, in order to get there in time to train night staff. I should have left early to compensate, but as often happens, crisis followed incident, and I got away later than expected on a normal day. It had already been dark for an hour, and traffic crawled along the highway when I fell asleep at the wheel. My foot lifted from the brake and I rolled into the car in front of me.
The impact shook my world, literally and figuratively. My glasses flew off when the air bag engaged, and my shaking fingers searched for them in the dark. The man from the car I hit came running back, flailing his arms, yelling what he thought of me into the night. I shook and cried.
The next several hours were a blur of police and tow trucks and driving a rental car home on unfamiliar streets. After a hug and several shaking sobs, my husband and I talked about the implications of my accident. My car was totalled and my insurance would be renewed in another month. What would happen?
I worked my way through this disaster, and managed to buy another car. Because my insurance rate had already been set, it wouldn’t affect this year's policy, but there were no guarantees after that. I struggled with fear each time I sat in the driver’s seat, but I drove.
Then the letter arrived. I was being sued. The person I hit saw this as an opportunity to work the system, and accused me of every driving sin in the book. His lawyer accused me of drinking, fiddling with the radio dials, using my cellphone, popping drugs and wearing glasses with an out of date prescription. Ridiculous in the extreme, except I struggled with ongoing terror, which diluted the humour for me. I never drink, the radio wasn’t on, my phone was in my purse, I’d taken no medication and the prescription on my glasses was current. I told the officer I fell asleep at the wheel. That meant my eyes were closed, which seemed to me to be more of an issue than my glasses' prescription.
The person suing me said he had been so damaged by the accident that he could no longer work, and he was suing for more money than I could make in a lifetime. Months passed, and when my insurance came up for renewal, I could no longer afford it. I gave my car away. I wondered if I’d ever be able to afford to drive again.
Feeling vulnerable and under attack, I begged God for mercy and help. More letters and more accusations followed. I dreaded reaching into the mailbox.
The insurance company appointed me a lawyer, and with shaking knees, I went to meet him for the first time. Although businesslike and serious, he seemed kind enough. He asked hundreds of questions and required documentation of various kinds. The other lawyer wanted proof from my optometrist that I'd seen her in the last two years.
While all this happened, another drama unfolded in my life. My husband of thirty years had heart disease, and over that year his condition deteriorated until he died. Suddenly being sued wasn’t the worst thing in my life.
But the lawsuit hadn’t gone away, either. The lawyer wrote to me, asking for the letter from the optometrist for the second time. I wrote back with an apology, saying that I would get it in the next few weeks, but my husband had died and I’d been distracted.
I received from him a lovely reply. Something seemed to change at that point. He went from being an appointed attorney to being my champion. He had the other party followed and discovered the man could carry several cases of beer from the liquor store, so was not as injured as he led us to believe. My attorney also coached me when I met with the prosecuting lawyer. He was kind and supportive.
Months passed, and the day came when I received another letter. My attorney explained all charges had been dropped. I was clear.
I wrote him, thanking him for his kindness to me. He replied that in all the years he’d been doing this, no one had ever thanked him before. Wow.
Life can be incredibly scary. I don’t know if I’ve ever felt as alone as I did on the side of the road, in the dark, with that man yelling at me. But even then, God was with me. Through the dark journey of the next year, He held me, carried me, and He sent a wonderful man to be my champion in the frightening world of false accusations and lawsuits. I’ve had to go through some incredibly difficult things since then, but the same God is by my side.
“The Lord your God is with you, the Mighty Warrior who saves. He will take great delight in you; in His love He will no longer rebuke you, but will rejoice over you with singing.” Zeph. 3:17
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Wednesday, 22 November 2017
I remember on Christmas morning, my mother would go down to the basement in her nightclothes and light the fireplace. Our tree sparkled with lights and tinsel, and the nativity scene that my father build from orange crates sat on the television. In this cozy glow, after eating a full breakfast, we opened our presents.
Most of us have some kind of memory that we'd like to recreate at Christmas. Family dinners, grandma's plum pudding, walks in the snow, singing carols...the list goes on. Each of us could complete the sentence, "Christmas isn't Christmas without __________."
As care partners, the problem comes with expectations, especially the unrealistic kind.
We may be able to accept that Grandma can no longer cook the turkey like she used to, but we can't conceive that she might not even enjoy attending. We're baffled when Aunt Rita is more excited about a box of tissues and a bottle of hand cream than the cashmere sweater we gave her. And how do you plan when grandpa doesn't remember the names of his grandchildren, and doesn't seem interested?
In your Christmas planning this year, it's important to keep some basic principles in mind.
This year may not be like any other year, and that's okay. It's important to take a long look at what you are expecting, and be willing to modify or give it up. Trying to re-create what you've always done can be a recipe for disaster. Grieve the traditions that matter to you, but be willing to give them up in order to have a peaceful, happy Christmas with you loved one.
Be realistic. In an incident that wasn't related to Christmas, a family member was looking forward to seeing a movie that had just been released. She asked me if it would be worth trying to take her husband, who had advanced dementia. "Is this something you used to do together?" I asked. She replied that no, he'd never really enjoyed movies. I just looked at her, and without me saying a word, she came to the conclusion, "I guess he wouldn't now, either." Even if a Christmas activity used to be a favourite, that might have changed. Perhaps your loved one loved the bustle of having the family all around him, but can no longer tolerate large, noisy groups. Look at who they are today, and plan accordingly.
Simplify. You don't have to do it all. We put so much expectation on ourselves, almost to the point of ruining the holiday, in some instances. (Of course, this is true for people who aren't care partners, too.) Look at your loved one's abilities and desires, and choose a few activities that are almost sure to be a success. Did you and your mom used to bake together? Choose one or two recipes that are familiar and favourites, and make them together. Even if all she can do is stir or put ingredients you have measured in the bowl, you can share the experience, and the results.
Find the joyous moments. Years from now, all the family meals will melt together in your memory. You might not recall a single present, or what you baked from year to year, but the simple experience that lit up your loved one's face, few words of wisdom or funny quip will live in your memory forever. Spend time, not money or effort. Be together, love, sing and experience the joy of being with your elder.
People change. Circumstances change. Sometimes it's difficult, but we have to change with them. For a few years after my husband died, my son lived at home, and when it was time to get our live tree, he would help me. When he moved away for school, I came to the realization that, for the first time in my life, I needed to buy an artificial tree. It was a difficult decision, and I cried in the store, but after it was up, I realized how much simpler it was. No huge mess of needles to clean up. No expense after the original purchase. It was hard, but now I am sold.
Take back Christmas, and let it be your Christmas story, for you and the elder you love.
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Care Partner Wednesday--Your Christmas Story
Wednesday, 8 November 2017
Dr. Alice Howland is a renowned linguistics professor, a mother of three grown children, a wife to a loving husband. She was living the dream when her life began to crumble. She forgot a word in a lecture, then got lost on a jog in her neighbourhood. In Still Alice, Julienne Moore passionately portrays the denial, fear and struggle to come to terms with an impossible diagnosis. In a poignant scene, Alice and her husband are lying facing each other in bed. "I have something to tell you." she begins. "There's something wrong with me."
Any time is too early for Alzheimer's, but if the disease arrives before age 65, it's called "early onset" or "younger onset." It's the same disease, but people with this diagnosis have special challenges.
Diagnosis: It's sometimes difficult to get a diagnosis because doctors aren't looking for Alzheimer's in a younger person. Symptoms are attributed to stress, menopause or depression. It can take longer to know what's wrong, and that period of uncertainty causes its own special hell.
Responsibilities: People in this stage of life aren't elders. They still have jobs, drive cars, have children in high school and university. A diagnosis such as this changes everything, even more dramatically than it does for an elder.
Services: When services are needed, there aren't any available with their peer group. If someone with early onset needs a day program, are they going to spend the day with people in their eighties and be comfortable? Not likely.
Spouses: It's difficult to imagine the pressures on a spouse. Perhaps they go from being a joint breadwinner to the sole provider of the family. For the most part, the needs of their still dependent children are theirs to deal with. They have a job. Friends, who may care but don't understand, drop off. There are few opportunities for relaxation. All of this is apart from the increasing need of their spouse.
Friends: Care partners of an elder sometimes find their position isolating. Their friends care but have no idea how to relate to what they are going through, or how to help. How much more so if the person with the disease is a peer or the spouse of a peer? There's an added dimension, too. Friends sometimes think to themselves, "If this could happen to Alice or John, anything could happen." It may be the first time someone in their fifties is in touch with their own mortality. It's not a comfortable thought, and one solution is to stay away.
So how can you help a family dealing with early onset Alzheimer's?
It's simple, really. Be there.
Depending on the closeness of your relationship, there are plenty of opportunities. If you are friends with the person with Alzheimer's, work hard to keep the friendship as consistent as possible. Do what you used to do together until that doesn't work anymore, then do something else. Do they need stimulation more than anything? Or perhaps they need social situations. Do they need to get out of the house, and do those caring for them need a break? Think of fun, creative ideas to enjoy together.
Listen. Over a cup of coffee, or during a walk together, give them a chance to talk about what they are experiencing and how they feel about it. A listening ear which doesn't belong to their family is a gift.
If your relationship isn't close, look for ways to help the family. A homemade meal, an offer to help with yard work or take the kids to activities one night are all possibilities. Each situation is different, but the common element is caring. Obviously, be sensitive, but look for ways to express caring. Isolation and feeling that no one understands are common among care partners. Use your actions to say, "I may not understand, but I'm here."
Remember the movie? The title was brilliant. Alice was still Alice when she couldn't remember, when she wasn't a professor, when she got lost. She was Alice, a person of value, at every stage of her disease.
As is every person with Alzheimer's.
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Care Partner Wednesday--When Alzheimer's Comes Too Early
Wednesday, 1 November 2017
My new favorite poster is a picture of a goldfish wearing a shark costume. It says, "Be brave. Even if you're not, pretend to be." So today, I will pretend to be brave and talk about Hallowe'en.
When my kids were growing up, we did a modified version of Hallowe'en, but they never went trick-or-treating. The first year they were old enough I had a party, but because all their birthdays landed in the fall, I was pretty well partied-out by the end of October. There were a few events at the church that we participated in as a family, and several years we went to Chuck. E. Cheese. They dressed up, they got a few treats and had fun.
My reasons for not allowing trick-or-treating were based on the history of Hallowe'en, it's evil roots, and the fact that I didn't want them to have that much candy. Theology and practical mothering combined. I wanted to protect my children from evil, and this seemed to be a way to do it. Another part of the truth is that I was fearful of the influence of the celebration on them. Much of my parenting was about fear, and it wasn't healthy.
I've changed my mind.
My intentions were good but other than modifying the flow of candy through our house, they accomplished little. My children weren't blind or unintelligent, and they understood the glorifying of death and murder and gore that so much of the celebration entailed. They understood, and it didn't scar them. Being set apart from the other kids, and missing out on the fun because of our faith--that might have left a scar or two.
The words of Maya Angelou have helped me deal with the guilt of decisions I regret in my parenting: "Do the best you can until you know better. Then when you know better, do better." I know better now, and I'm trying to do better.
Here's where I stand: Halloween originated in pagan festivals in ancient Britain and Ireland. That's historical fact. But I don't live where the pagan festivals are practiced. In 21st century North America, I live in a community where Moms and Dads bring their kids around in costumes and the kids get candy. Everyone laughs and admires what the kids are wearing. Neighbours talk, and community happens.
Four years ago, I decided to try something that, for me, was radical and brave.
When I outgrew trick-or-treating, my mother shut off all the lights in the house and retired to the basement on Hallowe'en. That bothered me. I didn't want to be the person who shut off the lights. I decided to take my Keurig outside and offer coffee and tea to the adults who shivered down the street. For a shy introvert, it was a radical move. What if people thought I was crazy. Who did that, anyway? But I wanted to be a light, rather than turning off the lights.
The first year, it was a stretch. People looked at me strangely, and only a few took me up on my offer. But those that did left smiling and happy, and that gave me courage for the next year. Four years later, neighbours come looking for my place and their treat. I served 23 cups of coffee, tea, and hot chocolate this year, talked to my next door neighbour, joked with parents and loved the feeling that I was a part of the community. For a tiny investment of money and a few hours of my time, I got spread light and warmth.
It's different at work, too. Years ago, Hallowe'en wasn't acknowledged on the calendar, let alone celebrated at work. Now, we dress up, and the elder's faces light up. We give them hats and other regalia to wear, and they gladly become pirates, clowns, and cats. We take pictures and admire ourselves and generally act goofy. We laugh. A lot. In this community, too, the celebration of Hallowe'en is innocent and fun and a time to enjoy ourselves together.
So, I do Hallowe'en. I'm thankful for the opportunity to shine my light in my world--even if it's inside a pumpkin.
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The Small Miracle of Shining Light in Darkness
Wednesday, 25 October 2017
"Do you know Mr. Sully?"
"Of course I do. I talk to him every day. He uses a cane and always wears a suit. He's such a kind, gentleman."
"But do you know him?"
"I told you I do. His wife lived with us until she passed away. He was such a devoted husband. Spent time with her every day. There are two daughters."
"But do you know him?"
This was getting annoying. Of course--
But did I? I knew the basics of Mr. Sully's life and even a portion of his history, but I didn't know what he liked to watch on TV, his favourite food or if he liked pillows hard or soft.
"An elder is someone who, by virtue of life experience, is here to teach us how to live." The Eden Alternative definition of an Elder
If this is true (and it is) my interactions with Mr. Sully should not just be a polite greeting and a pleasant "Hello." I need to know him well. I need to be a student of who he is, and always be looking for what I can learn from him. I am eager to serve, but Mr. Sully and other elders can add to my life every day if I let them.
"Identity is a life-story we share with other people as we become well-known. It is comprised of our history, our family's history, our accomplishments, and our failures. It includes who we are and who we wish to be. It is our passions, our interests, our sense of purpose and our relationships." 1
How does knowing an elder well affect how we care for them?
I arrive at work about 8:00 in the morning, just as many elders are heading to breakfast. I realized how my care partners know their residents well. Miss P. likes to be comfortable, and wear t-shirts with ferns and flowers on them. Miss H. wants to be warm, even in the summer. Mr. I. always has his baseball cap and Mr. D. must have an ironed white shirt. Mrs. A. wears a lovely suit with a butterfly pin. Many of the ladies have their hair done every week, but a few prefer just a trim every six weeks. Mrs. G must have her lipstick on at all times.
As I greet them heading to the dining room, it strikes me that the care partners on my team are identity champions. They know the little details that are important--the details that make the elders who they are. They acknowledge the importance and honour them by helping them dress the way that makes them feel comfortable.
Care partner, are you an identity champion?
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Care Partner Wednesday--Identity Champions
Wednesday, 18 October 2017
Georgina has can anxiety disorder. She doesn't have dementia, but she perseverates (goes over and over the same issue) on many troubles. It doesn't matter if all was well with this problem yesterday. Today is a new day, and you never know...
I have a long history with Georgina. Sometimes, I need to reassure her, sometimes talk to her a bit more firmly than normal, and sometimes, humour works.
Today, she was going over and over the issue of the corn on her toe, her shoes, which pinch because of the corn on her toe, and her corn plaster. "I'm not sure if it's on or it fell off."
Keep in mind this was the third or forth time we'd had this conversation. "Georgina, do you mean the corn plaster or the toe? Because if it's the toe, we really have a problem." She looked at me blankly for a minute, and then a ghost of a grin spread reluctantly across her face.
Humour worked this time.
In your entire arsenal against caregiver stress, a sense of humour is your best weapon.
I can hear the protests now. "Are you nuts? There's not a thing funny about this situation. My heart is breaking, I'm exhausted and most of the time I have no idea if I'm doing the right thing. How can I laugh?"
In many ways, that's true. But the ability to see the funny side of a situation and to laugh when crying is also an option can be your salvation. You're not laughing at. Sometimes you're laughing with, and sometimes you're just laughing. Laughter can give you the strength to go on.
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"A good laugh dissipates more dark clouds than any other one thing." - Laura Ingalls Wilder
In the stories I am about to share, the names have been changed and the people left us long ago. But the stories still make me smile.
Velma had an incredibly sharp mind until the last year of her life. She worked complicated crossword puzzles every day and had many opinions on politics and current events. She loved the symphony and was every bit a lady. Later in life she had a stroke, and her mind became uncharacteristically confused. She hoarded the garters used for the kind of briefs she wore, and was convinced the staff was stealing them and selling them on the black market. (There's a black market for those kind of things?)
One day, Velma made a slow journey down to my desk. Every step was work, but she soldiered forward, grasping her walker and moving with a slightly tipped gait. I saw her coming and wondered why she had ventured this far. In her present state, a journey like this was a lot of work. I stood from my chair as she arrived, wondering how I could help her. For a few minutes, she stood silent, although she seemed to be concentrating on something behind the desk. Ignoring my questions, she began to shake her head. She pointed to my chair. On it was a back rest which displayed the name of the company--Therapist's Choice.
"The Rapist's Choice." read Velma, shaking her head. She turned to leave, but I heard her mutter to herself, "Makes you wonder what they're doing down here."
A lady from our independent living apartments came to my desk, looking as if she had lost something. I asked her if I could help her.
"I'm looking for Ann Peachman Stewart, but she's on vacation."
"I'm Ann Peachman Stewart."
"Oh, you're Ann Peachman Stewart when she's away?"
No, I'm Ann Peachman Stewart all the time."
Brigit was a delightful blind Irish lady who lived in our dementia unit. She had strong opinions about everything, and wasn't the least bit shy about expressing them. Her blindness was recent, but because it was combined with dementia, she didn't have the heightened senses many other blind people have.
One day, the piano tuner arrived just before lunch. He began to work on the piano in the lounge where Brigit was sitting, waiting for her lunch. As he systematically plinked and plunked his way up the keyboard and down again. I noticed Bridget was becoming agitated, making "Tsk." noises and wiggling in her chair. Just before he was done, she could stand it no longer, and burst out with, "If you canna play the thing, you'd be better to leave it alone!"
Even when grief is fresh, there can be a funny side. I had a newly widowed wife ask me what to take to the funeral home. Did she need underwear? I told her to ask the funeral home. I had no idea.
But it's certainly something to ponder in the middle of the night.
And when I was at the funeral home planning my husband's memorial service, I was asked to look at urns. I burst out laughing and got a started look from the person helping me. How could I explain to her how funny Bill would have found that? He wasn't an urn kind of guy. I ended up buying boxes at the Dollar store with pictures of shells on them. Much more his style.
As you start your day as a care partner, ask God to show you where the smiles and laughter lie. It will make your journey a little lighter.
CONTINUE THE CONVERSATION: Do you have a story or two? Share with us!
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Care Partner Wednesday--The Power of Laughter