Thursday, 18 January 2018

Care Partner Wednesday--Understanding Dementia pt.1

Dementia. Memory loss. Alzheimer's disease. Confusion. Cognitive impairment. Neurocognitive disorder. What does it all mean? Are these all words used to describe one condition, or are they different? Does everyone with dementia (or whatever term you use) act the same? What can I expect?

When a person is diagnosed with dementia or any other term relating to cognitive impairment, it's frightening. What is known for sure is that life is going to change, but the terrifying question is how, and in what ways will those changes affect life and how it's lived.

Although there are some similarities in how dementia affects those diagnosed with it, everyone is different. There are a whole host of symptoms, and not everyone has every one. Bill Thomas, founder of The Eden Alternative, says, "If you've met one person with dementia, you've met one person with dementia." Dementia is an umbrella term for several specific diseases (including Alzheimer's) and there are many factors involved in how it looks in each person. Some of these are:

  • the specific diagnosis
  • how far along they are in their disease
  • the person's personality
  • the environment
  • the responses of those around them
  • evidence of a second disease or infection (and example of a disease could be heart disease, or diabetes, and an example of an infection could be a urinary tract infection. Most people have more than one thing going on, and this affects everything.)
Some of the challenges a person with dementia might have relate not only to their memory, but how it affects what they do in a day, and how they are able to do it. As the disease progresses, the person with dementia will need more help in multiple areas.

Doing more than one thing at once. This might be as simple as being in a room where more than one conversation is happening, or listening to music while eating, or trying to perform a task while someone is talking to them. A care partner might become frustrated when they keep stopping, but it helps to understand the difficulty their brain is having in keeping things organized when there is more than one input. Be aware, and try to  keep it simple. 

Making decisions, planning and organizing. This might seem obvious, and the temptation of many care partners is to take over this entirely. Early in the process, activities like paying bills and remembering appointments falls to the care partner, and it's tempting to fall into the habit of making all the decisions and plans. Don't do it! The person with dementia has opinions, can decide and has preferences. It takes time and patience, but it is important to their humanity that it occur every day. "Would you like to eat corn flakes or porridge with breakfast? Shall we read a book together or go for a walk? Do you like gardening or watching TV?" Ask, and give time for the answers. 

Remembering. This is the best known aspect of dementia, but it is far more complex than we realize. As care partners, if we can understand some of the memory issues, we can have greater empathy and help our loved ones through the process. Dr. Richard Taylor, a clinical psychologist and PhD who was diagnosed with dementia, probably of the Alzheimer's type, writes about his issues with memory.

"I have good days and bad. Good hours and bad. Good moments and bad. There is no predicting when and how the bad ones will come, except when I am very tired. Sometimes, I am aware I am floundering and cannot seem to hold myself together. it's strange watching yourself misdial a phone number, time after time after time. Look for a name and then forget what I was looking for right in the middle of my search. Stand up from my chair to do something, and not have a clue what it was. Most dangerous for me are the moments I do not understand but think I do, or do not remember. I say things, I tell people things, I think I understand situations that are not true, a little true, or from out in left field, and the worst part of it is, I don't know when each of these moments are happening. Will I do something on this date? Sure. Except I wrote it on the wrong month in my calendar and didn't find it for three weeks. Can I do this? Of course! When I really did not understand of me, and just said "yes" for reasons that only Dr. Alzheimer's understands." 1.

As a care partner, it can be frustrating keeping up with and understanding the thoughts and actions of the person with dementia.

But imagine living with it.

Next week: How dementia affects perception, interactions with others and language.

Care Partner Wednesday--Understanding Dementia pt.1

Wednesday, 10 January 2018

Care Partner Wednesday--Dealing With Anxiety

"I should be able to do this." What this well-dressed, beautiful senior lady was referring to was moving herself and her husband from the home they had lived in for most of their married years.The initial decision to move was one she had to make alone. He was no longer able to participate. All the decisions about what to keep and what to give away, how to set up her apartment and his suite on the care floor, and  how to help him settle into his new home, fell to her. Family would help, of course, but she was feeling the heavy weight of responsibility.

And no wonder!

We often consider anxiety as it relates to our elders, but care partners face wave after wave of anxiety as they cope with the challenges each stage of caring brings.

Here are a few examples:

  1. Can I cope with caring for my loved one at home, or am I reaching the end of my abilities?
  2. How can I negotiate the hazy world of long-term care application? 
  3. What is the best place for my elder? How can I find a place where I will be able to sleep at night, knowing they are lovingly cared for?
  4. Will I be able to tell them they are moving in a way they can understand?
  5. How can I help them adjust to this new environment?
  6. My elder is changing, and it frighten me. Is this something major, or just a small infection?
  7. My elder fell, and I'm afraid it will happen again. He didn't break anything this time, but we might not be so lucky again. He keeps walking without his walker.
  8. I see a decline and it scares me. What does the future hold?
Every part of the care partner journey can be wrought with anxiety. "I should be able to do this." We are hard on ourselves.

Here are some suggestions if you are a care partner and are feeling overwhelmed with anxiety.

Find support. There are excellent groups (such as the Alzheimer Society, Parkinson's Support groups etc.) with help for you about the specific issues you are dealing with. Part of anxiety is lack of knowledge, and when you have a better idea of what you are dealing with, anxiety lessens. Find a place where you can ask your questions.

Be kind to yourself. No one is on top of every situation all the time. Losses (such as those that come with decline) require time for grieving. Painful decisions and difficult conversations need to be recovered from. Watch the words you say to yourself. Make sure they are kind.

Schedule small breaks. A weekend away. A night out. You will be a better care partner for it.

"I should be able to do this." You can and you will, but only if you treat yourself well.


Wednesday, 3 January 2018

Care Partner Wednesday--When a Wife Becomes A Care Partner

Back in the mid-1950s, they were both in high school and she experienced heart palpitations whenever he passed her in the hall. He was three years older, and she doubted he even noticed her. But he did. One day he caught up with her and walked her home. She sat in the old swing out the front of her house and they talked for an hour, while her mother peeked through the curtains.

They laughed for years about the significance of that hour. It was during that time she decided he was the cutest and smartest boy she had ever met, and he decided he was going to marry this little sweetheart some day. "Some day" was almost five years later, which still wasn't enough time according to her mother, but they couldn't wait any longer. Her mother sewed her dress and her big sister was maid of honour.

Although she was incredibly proud when he used the term, she admitted only to herself that she had no idea how to be a wife. She learned, however, and also how to be a mother, as two sons and a daughter joined their family. Her role as wife changed and grew over the years as she supported him through business failures, new jobs and all the ups and downs life brings. Before they blinked, those children were grown and they had grandchildren, and she added a new role to her repertoire.

When her youngest daughter was getting married and asked about being a wife, she surprised herself with the wisdom that flowed from her. Where had she learned so much about what it meant to be a wife? She decided it was in the school of life, and she'd had some amazing teachers.

When the changes came, they were subtle and almost unnoticeable. A forgotten appointment here, a repeated conversation there. Keys lost again and again. When they became more frequent, a tiny part of her brain began to inquire, but she firmly closed the door on that line of questioning. It wasn't until the day when he got lost driving home from work that she could no longer ignore the truth. She had a new role. She was a care partner.

Of all the roles in her life, this was the most mystifying. She was caring for this man she had loved for so many years, but she was still his wife. How could she count out his pills and make sure he took them without infantilizing him? How could she deal with incontinence and still maintain intimacy? Who could she tell about her greatest fears, when her greatest fears involved him?

A wife who becomes a care partner walks a fragile line. She cannot walk it alone.

If you are a friend, draw along side her. Listen, even if you have no words of advice. Allow her to laugh and cry and tell her stories, because you are giving her an invaluable gift. Encourage her to find a support group of people going through similar circumstances. If necessary, go with her to several meetings until she is connected.

There are ways in which the care partner role makes the wife role exceedingly difficult. With time, patience and persistence, she can learn both roles and even excel at them. She can find her way to a fulfilling new relationship with her husband.

Help her find her way. Be a friend.


Care Partner Wednesday--When A Wife Becomes A Care Partner

Saturday, 16 December 2017

The Small Miracle of Change

When I get on the train, I choose the same car every day. I sit with the same people, who also chose that car. Some of them chat with each other and some sleep, but all on the same car. My car is at the far end of the platform, and sometimes if I'm running late, I only make it as far as the accessible car, half way up the platform. Guess what? There is a whole community of people who choose that car every day. The same people on the same car.

I know few people who embrace change. Most of us avoid it where possible, clinging tenaciously to our routines. For good reason. Change, even change with a great outcome, involves stretching and growing, mess and discomfort, upset and disappointment. Our routines may be boring, but we know what to expect.

I recently watched the story of the nativity with a group of co-workers. I was struck again how God moved in and shook the worlds of Mary and Joseph, and ultimately, the entire world. Both of them had a plan for how their lives would go, and it involved change, but it was moderate, predictable change. Instead, God instituted a change containing shame and disgrace, danger and fear, wonder and joy. It was beyond anything they could have imagined. I'm sure there were times when they thought, "No! I'm not up for this." But God was.

I've come to the conclusion that God likes change, and even if He doesn't instigate it, as He did with   Mary and Joseph, He always knows about it and uses it to grow us into the kind of people He can use.--if we let Him.

Christmas letters are a bit of a barometer for me. There have been three years in my life when the change that a year brought ripped me apart so completely that I couldn't write a Christmas letter--the year my mother died in a car accident, the year Bill died of heart disease, and last year.

I'm still not ready to say much, I may never be. In September of 2016, Hunter left me. I don't understand why. It was a change that confused and devastated me, but God was there, and He is using it to grow me.

In December of 2016, another change occurred. Ruth, Shawn and Hannah, whose rent was crippling them, came to live with me.
Ruth's graduation with her ECE
We're all pretty easy going people, and as we look forward to our second Christmas together, the arrangement is great for all of us. There is nothing like a Hannah hug before bed every night, or a text from Ruth if I am late getting home, wondering if everything is okay. We are a family together, and it works well.
Hannah and Teddy at Chudleigh's apple farm
In late January, two unrelated changes rocked my world. The first was the arrival of a sweet little puppy named Teddy. I'd already made application and paid a deposit when I was suddenly coping on one income, and I questioned the wisdom of going forward with the purchase. The message after prayer was clear, "You need this."

I picked him up on a foggy January day and immediately fell in love. Teddy is a Cavalier King Charles Spaniel, and the breed is naturally affectional, but he especially loves to be cuddled and give many, many kisses. I love every part of him, even his 5:00 a.m. bladder which means I can never sleep in.
Teddy's first day with me
Coincidentally, on the same day, the sewer in my basement backed up. Tree roots grew into a pipe on the front lawn, and created a huge, stinky mess. The whole basement had to be gutted, and in doing so, four small areas of mould were found. The contractor hired by the insurance company required an expensive mould assessment, and said they would rid me of the mould for $8000. This was after months of continuing issues with them, and in frustration, I fired them and cashed out with the insurance company. My son Ben removed the mould for the cost of a bottle of bleach. Geesh! God sent the wonderful Andrew, who has been working away the last three week (yes, we are now almost a year later!) and my basement should be done and looking amazing by next week. There were many times during this ordeal when I looked at the dark cave that was my basement and despaired of every moving the project forward, but here we are. God had a plan,
the change was messy and painful, but the end result is lovely.

My family changed, too. In the fall, sweet, cuddly Jillian was born to Bek and Steve, and Dylan became a big sister. Ruth began her first job as an ECE with the YMCA, and is excelling there.
With my niece, Jenn at her daughter's
high school graduation

Surprise visit to my sister 
on her retirement weekend

Each of my kids has been amazing through all these changes, in so many practical ways. Ben spearheaded the mould removal, helped to paint and was available for advice on any issues. Ruth painted and helped me with Teddy on many occasions. Shawn installed a new tap, and walked me through the process of buying a used car. Steve rescued me when my bathroom vanity sink broke, and installed a new one. In each crisis, they reminded me I wasn't alone.
I learned to drive a boat!

It's hard to describe the enormous changes at work. Four years ago, our first neighbourhood, The Annex, was built. At that time, I longed for something similar--a family style kitchen where residents could come at any time, the smells of freshly baked cookies filled the air and it felt like home. The next neighbourhood, Seaton Village, was built that same year, but for various reasons,
building stopped. This year, through messy, noisy change and months of disruption, Cedarvale Park was born, and Phase one will
open next week.
During construction
Picture a huge area, with attractive kitchen and dining area, and my desk just across the hall. On one side is a wall, wallpapered to look like a bookcase, with an electric fireplace in the centre. Windows all around light the dining area. Best of all, my wish list of small appliances has been purchased, and I get to play "mama's in the kitchen" with waffle makers and crock pots.
My new desk

Cedarvale Park has almost double the staff, residents and families, and I have a lot to learn. This will be a year of growing and change as I learn to be all that is needed in an Advocate for this area.

I'm the Queen of the Advocates
My wish for you is that in all the changes 2018 brings to your life, you will ask our unchanging God to hold you, grow you and fill you with joy. Merry Christmas, everyone!                                                  

The Small Miracle of Change

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