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
Wednesday, 11 October 2017
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.
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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
"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.
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Care Partner Wednesday--Words Matter