Wednesday, 6 December 2017

Care Partner Wednesday--Culture Change is Hard

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

The Small Miracle of God With Me

Have you ever been so afraid, your stomach dropped to your toes, your mouth dried to dust and the tears flowed non-stop? Thats how I felt the day I got the letter.

Growing up, I was always the good kid. Its 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 wouldnt affect this year's policy, but there were no guarantees after that. I struggled with fear each time I sat in the drivers 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 wasnt on, my phone was in my purse, Id 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 Id 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 wasnt the worst thing in my life.

But the lawsuit hadnt 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 Id 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 hed been doing this, no one had ever thanked him before. Wow.

Life can be incredibly scary. I dont know if Ive 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. Ive 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


Wednesday, 22 November 2017

Care Partner Wednesday--Your Christmas Story

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.

Care Partner Wednesday--Your Christmas Story

Wednesday, 8 November 2017

Care Partner Wednesday--When Alzheimer's Comes Too Early

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.


Care Partner Wednesday--When Alzheimer's Comes Too Early

Wednesday, 1 November 2017

The Small Miracle of Shining Light in the Darkness

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.

The Small Miracle of Shining Light in Darkness

Wednesday, 25 October 2017

Care Partner Wednesday---Identity Champions

"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?

Care Partner Wednesday--Identity Champions


Wednesday, 18 October 2017

Care Partner Wednesday--The Power of Laughter

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.

"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!


Care Partner Wednesday--The Power of Laughter

Wednesday, 11 October 2017

Care Partner Wednesday--After a Diagnosis of Dementia

There are points in life when everything changes. Milestones where you can look back and say, "Here is when life was never the same again."

A diagnosis of dementia can be like that.

Probably there were months and even years leading up to that moment when you wondered, suspected or even knew, but it wasn't official. Even when there is no doubt in your mind, hearing the words from a doctor can take your breath away. Everything changes.

Many people come to this point and ask, what now? Now that we know, what should we be doing?

You may have all or part of this in place already, but here are some suggestions as you begin this journey.

1. Make sure powers of attorney are in place. Talk to your elder and discern their wishes. Do they want the family member who lives closest to have POA, or each of the children? With Skype, social media and email, families can connect immediately to discuss problems, but what if someone is needed to physically visit? All this should be considered. Do they want to set it up so any one of the POAs could make a decision, or that they all have to agree? If there are no children, is there a niece, a close friend or someone else who will assume these responsibilities? Some people have a trusted lawyer make both financial and care decisions. Whoever it is, this should be put in place immediately.

2. If your elder is still driving, the doctor who made the diagnosis will be contacting the Ministry of Transportation, revoking their license. However, you will be left with some difficult conversations.

I recently went through a month without a car after mine died. Due to a busy schedule and vacation, it was four weeks before I was able to purchase a new (to me) vehicle. I got dropped off at the grocery store and had to wait to be picked up. I missed church one week because I couldn't get a ride. I felt awkward and embarrassed asking for help in the form of rides. I hated it. It gave me compassion for our seniors who can no longer drive. Independence is tied to a set of wheels, and conversely, no car means a lessening of independence.

When this happens, talk together about a plan. Will they take taxis? The bus? Learn to use Uber? How often will the family be able to help? A plan brings some independence back to the situation.

3. What kind of supports are needed? As part of the assessment to make a diagnosis, the doctor would probably have done a mini-mental status exam (MMSE.) This is scored out of 30, and the score gives a baseline for how your elder is functioning, and some indication how much support they will need. At a certain score, the doctor will deem that they cannot make decisions for themselves, and that is when power of attorney is put in place. Another score indicates your loved one can't safely live independently.  It may be, with the right supports (such as someone coming in to give medications, or do light housekeeping) independence can be maintained. Find out what's available, how to access government-funded programs, and look into the cost of accessing those that aren't  subsidized. Look into things you don't need presently, so if there is a rapid change, which often happens, you are ready.

4. There will come a day when supports in the home won't be enough. You may be months or even years from that day, but you will be better prepared for it if you start thinking now. What kind of place would your loved one be happiest at? What qualities are the most important to them? What is the process for admission? What do they cost? What is available? Start your research now, before there is a crisis. Have conversations and discover what matters.

5. Read, read, read. Learn about the difference between Alzheimer's and other dementias, what kind of drugs are typically given for dementia and how they work. Ask your doctor to recommend some websites and attend classes with the Alzheimer Society. There is a wealth of information out there, and knowledge helps you ask informed questions and know better what to expect.

You are embarking on a journey. Make sure you have the vehicle you need before turning onto the highway.

Care Partner Wednesday--After a Diagnosis of Dementia

This list is by no means exhaustive. What information or tools did you find valuable after a diagnosis of dementia?

Wednesday, 4 October 2017

Care Partner Wednesday--Words Matter

"I just changed his diaper. You grab a bib for me, and I will feed him."

Is this a conversation between two parents holding their newborn infant? Or perhaps two Early Childhood educators in a daycare situation?

No, it's a conversation held between two care partners over the head of a non-verbal elder in a wheelchair.

Is your skin crawling? It should be.

We who are passionate about changing the culture of eldercare need to examine our words and ensure that they are keeping up with our passion. The elder in that chair may have been cognitively impaired and non-verbal, but it's likely he can hear. If he can understand even a small portion of what was said, can you imagine the shame? Not only were the words completely inappropriate, but they were spoken about the elder as if he were a task to be performed and not a person. He might have been one of the wheels on his chair for how person-centered the conversation sounded.

Words matter. We need to examine our language and listen to what is being said. Are the words and phrases ones that we would like to be used about us if the tables were turned?

If you have followed my journey, you know that I fought and lost a battle to remove bibs from our dining rooms. At the very least, let's call them "clothing protectors" and not bibs. Let's offer cloth napkins to those who want them. Let's treat our elders with respect.

When I approach someone who needs to be covered when they are eating, I will say, "Can I put this on to protect your clothes?" This gives them choice and protects their dignity as well as their clothes.

We refer to incontinence products as "briefs." Babies wear diapers. Adults wear pads, pull-ups or briefs.

Rather than referring to what occurs in the dining room with people who need help as "feeding," which is what I do to my dog before I leave for work each day, we call it "assistance with the meal." I put Teddy's dish down and leave the room. That's feeding. In the dining room, I interact with residents and staff. Even if they aren't able to talk, I tell them what kind of food they are eating. "Here's a spoonful of chicken, George." I watch for cues--a look or sound of pleasure, a grimace, or lack of enthusiasm for what is being offered. If they don't like it, we try something else. I smile and we interact. It's a happy, community time. Food gets consumed, but it's only part of the process.

Another word we need to drop from our vocabulary is "refused." "She refused her medication." "He refused his dinner." The word refused makes the elder sound like a cranky person with an attitude. The truth may be they weren't hungry, or didn't feel the need for their pain medication at that time, or didn't understand and no one explained. How much better to say they "chose not to."

Those of us who work in eldercare are familiar with the expression "behaviours." It always refers to something negative, such as aggression, calling out or wandering. Dr. Bill Thomas, the founder of the Eden Alternative, talks about these "behaviours" as being related to an unmet need. We are learning to ask the question, "What is the unmet need?" This moves the responsibility from the elder to us. It also moves the solution from an immediate medical answer "what medication does he need to control the behaviour?" to a social one "what is the unmet need and how can we meet it?"

Why do words matter? Because our words show who we are and what we believe. If we are passionate about caring for our elders in a way that respects their person-hood, let's ensure our words do the same.

Care Partner Wednesday--Words Matter

Wednesday, 27 September 2017

Care Partner Wednesday--Lobster, Lasagna and Memories

Care partner stress is real, sometimes intense and wearing. When you are in the middle of the battle, you don't want to hear "10 Ways to Beat Caregiver Stress" because most of them don't speak to your situation, and you already know that stuff anyway. You want to hear how to get through today.

I have a friend who is living with the pulling and stretching and demands and worry of a severely sick husband, and I was thinking about her and prying for them today. I asked myself, "What helped?" all those years ago. What made a difference, and what stands out to me today?


Those tiny, special moments when you were able to change the horror you both were living with into something special that touched you both.

Here are a few thoughts.

Like many terminally ill people, Bill wasn't eating well. Something would sound good, but by the time I prepared it, he wasn't hungry. It broke my heart to watch his face thin to gaunt. He used to enjoy his food, but now a liquid supplement was the best he could do most days. Then one day, he said he was craving lobster.

A few years earlier, he'd gone to Nova Scotia on a "bucket list" journey to visit an old guitar teacher. While there, he'd feasted on seafood in all its delicious forms. I cooked fish frequently and sometimes we splurged on scallops, but I'd never cooked a lobster. The thought of it kind of horrified me. Feeling foolish in front of the counter of an unfamiliar grocery store, I explained my predicament to the server, and he told me how to prepare it. That night, I spread a lobster dinner in front of Bill, complete with the crackers and little forks to scoop it out. It took him over an hour, but he demolished that lobster and ate more than he had in weeks. Every time I open the cutlery drawer and see the little picks and forks, I smile and remember.

One of his last hospital visits involved a week on his back. Because of a procedure they were doing, he couldn't sit up, and it made a difficult season more wearing. Each night I would rush to the hospital after work because he'd been alone all day. In the midst of this pain and stress, we developed a game. His water was restricted, but he could have a few ice chips every hour. I would toss them through the holes in his oxygen mask and he would catch them with his mouth. As silly as it sounds, I remember giggling together when the ice chips missed their mark.

During an earlier hospital visit, he complained about the hospital food. No surprise there. It was pathetic. He'd already dropped so much weight, I worried that he would get sicker from not eating. One night while I was visiting, he mentioned lasagna. On the way home, a crazy idea occurred to me, and I wondered if it would be possible. I stayed up late that night and crafted a lasagna in a small casserole dish. The next day, I kept it in the fridge at work until it was time to go. Then I heated it to a burning fire, wrapped it in the many towels I'd brought and headed to the hospital. I even had china plates and our own forks and knives. When I arrived and unwrapped it, it was still steaming, and we enjoyed a lasagna dinner together. Again, he ate well that night, and I always remember the look of pleasure on his face as he took the first bite.

One of the men at church asked if he could put the word out by email to pray for Bill. Of course, I was delighted, and I began to receive email notes of encouragement from far and wide. Some people wrote out their prayers, and we heard from several people who hadn't been in our lives for years. I realized this was blessing me, but Bill wasn't getting the benefit, so each night when I went home from the hospital, I would print off emails and glue them in a scrapbook. At the hospital, I read all the notes and Bill was touched by the caring of so many people.

Just a few weeks before he died, it was Thanksgiving. One of our fall family traditions was to visit a local apple farm. We loved the place, and our kids had grown up with at least one visit a year. This year, Bill wanted to go before we ate our Thanksgiving dinner. Really? He was so thin and weak and wasn't really eating apples anymore. But dreams overtook the practical, and we headed out. A warm, beautiful day, it looked like everyone in our community thought this was the day to visit the apple farm. We trudged through the parking lot, and worry consumed me as he stumbled along. Near the entrance was a huge log, and Bill said he would sit there and watch while we went in. I rushed everyone through our shortest ever visit, grabbing a few apples, some cider and a jar of jam. Anything he might like. He seemed content just to be there, sitting on the log. Getting back to the car involved another adventure, as he was already tired, but he was glad to have gone. When he died a few weeks later, the apples were still in the fridge.

A few weeks ago, we went to the apple farm as a family for the first time since that last trip. I stood for a moment and looked at the log where Bill sat and remembered.

Memories. As a stressed out, barely-making-it-through-the-day care partner here is my advice to you: make memories. Take the time to do little spontaneous things together like the ice chip game, or ridiculously impractical things like the apple farm.

Because when the day comes that you are looking back at this time from the other side, you will be thrilled that you did.

Care Partner Wednesday--Lobster, Lasagna, and Memories