Saturday, 23 January 2016

The Small Miracle of the Comfort Zone

Today I went for an ultrasound and x-rays of my left knee, which has been giving me grief since last August. I have a "knee/ligament/leg/who knows what" issue, and the doctor decided to find out why my hobble hasn't gone away. He threw in pictures of my right knee and my back for good measure.

While I was twisting this way and that, it stuck me that I was uncomfortable in the extreme, and couldn't wait for the experience to be over. Lying on the rock-like ultrasound table, I wondered why. It didn't hurt, and even though the technician had the personality of a tomato, I was only spending about twenty minutes of my life in her presence. A hospital gown, socks and underpants are not my favourite attire, but it was only for an hour or so. It wasn't even inconvenient. I went on my way to work, and although I was late, one of my colleagues was covering for me.

So, why am I so thankful the experience is over?

I was out of my comfort zone.

When I am at home, at work, with friends, and many of the familiar circles in which I travel, I am comfortable. Uncomfortable things may happen, but for the most part, I know how to handle them. Sitting in a change room between tests, clothed only in a hospital gown, is a vulnerable position. In many ways, I am at their mercy. Those who guide me through this experience can be demanding and unsmiling, like the ultrasound technician, or friendly and gregarious like the x-ray guy. I have no control, and very little choice. If I want to find out what's going on with my knee/leg/whatever, I have to go through this.

Not being in my comfort zone is...uncomfortable.

This isn't always a bad thing. In fact, it's often in these situations that I grow.

In my journey as a writer, I have been outside my comfort zone many times. When I decided to take my first course with Christian Writer's Guild, which was just a few months after my husband's death, I was terrified. During that first course, a friend helped me polish a personal article about my struggle with removing my wedding ring a year after the death of my husband. I'd poured out my heart--what if they rejected it? They didn't, and so began my publishing adventure.

I've had my share of rejections, though, and they sting. Most recently, I had Pelican read my entire manuscript and reject it. I knew it was a long shot, but I was hopeful. Ouch. That was uncomfortable.

I've learned, though, that the alternative to my comfort zone is safety. Safety is a good thing, and I certainly don't condone recklessness, but safety can be stifling. Stagnating. Safety can lead to...nothing.

I'm not alone in this struggle. The Bible is full of the stories of real people who dragged their feet when asked to leave their comfort zone. Moses was full of excuses. "I can't speak well, I stutter. Send Aaron." Gideon said, "Send me a sign. Okay, send me another sign." Joshua, who had lived in the shadow of the great Moses, watching the sea part and snakes become poles and then becomes snakes again, was terrified when asked to lead after Moses died.

The bottom line is fear. It's alarming to leave the familiar and go into the unknown. But sometimes that's exactly where God wants me to be. He has a promise (several, actually) for me in the midst of this. I love the promise He gave to Joshua, because it's true for me, as well. "Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." Josh. 1:9

Back to my writing journey. I was at a writer's conference last year with my elevator speech on my lips and my pitch tucked under my arm, preparing to talk to agents and editors about my novel. It wasn't finished at that point, but it was almost there, and I was looking for some direction regarding next steps. Now, if you know me at all, you will realize this was already far beyond my comfort zone. Miles. Whole countries away from comfortable. So when God gently prodded me to move even farther, I was aghast.

I'd prepared a list of three editors and three agents who took materials in my genre. During the introductory session, each presenter gave a synopsis of what they were about. I can't remember the words she said, but when one of the editors spoke, I got the shivers. Something about her made me dub her "scary editor" in my mind, and cross her off the list. No problem. There were others to talk to.

Except later, as I stood in the crowded room full of editors and agents and hopeful authors, God gently prodded me, "Sign up on her sheet."

"Really, Lord? But... "However, I've learned over the years the futility of arguing, I wrote my name in one of the few empty time slots, and recorded the time in my book.

The next day, I trembled outside the door, waiting for the chair opposite her to be empty at the designated time. When that person finished, another slid into the chair. I waited through that session, but another was waiting. What had happened? When everyone was at lunch, I went to check the sheet I'd signed, and realized I'd reversed the numbers in the time I had written down. My time had passed with an empty chair. I was humiliated. How could I be so stupid? However, I hadn't done it on purpose. It was an honest mistake. Sorry, Lord.

The next morning, as soon as my eyes opened, the Lord spoke to me again. "You need to apologize to her. You wasted her valuable time."

Really, Lord? I mean, really?

I have no words to describe how far outside of my comfort zone that left me.

I was attending a workshop she was teaching, so had to sit through two hours with this hanging over my head. I was sweating and trying to keep my voice from shaking as I approached her as the last person left the room. "I would like to apologize." She looked startled.

"For what?"

I explained what I had done, and that it was an honest mistake, but I was a person who respected people's time and knew the value of a deadline and I would never do something like that on purpose.

She smiled at me and said, "Do you want to talk about your manuscript now?"

"I didn't come to get another chance. I really just wanted to apologize," I stumbled through the words.

"Well, why don't we sit down now, and you can tell me about your work." And so began a relationship that still continues. This wonderful woman has read and edited my entire manuscript. She gave me valuable input, and has inspired me to believe I have something to offer. She has been a treasure.

I have learned that there are times to be in my comfort zone. Times to put my feet up, grab a cup of tea and a good book and relax. Those are beneficial and restoring.

But when God calls me to move, whether to cross the Red Sea or cross the room, I'd better be prepared to do it.

Thankfully, I will never have to do it alone.

Wednesday, 20 January 2016

Care Partner Wednesday--The Sudden Care Partner

Meet Janice.

She has a family; two teenagers and a twelve-year old, a husband who travels, so is not home for the day-to-day running of the house, and a mother who helps out with the kids. Mom is a young eighty who walks every day, reads the paper, is conversant in politics and plays a mean game of Scrabble. Mom still drives,  so she comes and makes dinner a couple of nights a week when Janice is tied up with meetings at the office. It's busy, but it works.

Until the day it all falls apart. Mom steps off the sidewalk and misses the curb, falls and breaks her hip. She needs surgery to repair it, but as she is recovering, develops a heart arrhythmia. She can no longer drive and needs multiple medications. She becomes depressed, requiring more medication. Janice worries about her all the time, and wonders how she can look after her mother, her family and her job.

Janice has become a care partner.

Most of the family members I meet are far along in the care partner journey. They have moved their loved one into an apartment or life lease in our building, and many years later, down to the care sections. Or, the resident made the decision to move to a place where the care would be there when they needed it. Either way, it was a slow journey and family had time to learn their roles and adjust to what was needed. Not so with Janice. She became a care partner overnight, and is facing a lifestyle change, questions, fear, guilt...

If I had one piece of advice, this would be it: get help.

It's difficult to think clearly when it feels like your world is crumbling. Here are a few suggestions:

1. The first place to start is the doctors, nurses and social workers at the hospital. Before they release her, they will need to know that she has a place to recover where her needs can be met until she is healed. They may decide to send her to a rehab hospital, a place dedicated to getting her back on her feet and moving. She would get daily physiotherapy and encouragement to get back as much of her function as possible. This also gives you several more weeks to plan for what is needed next. If this isn't possible, talk with the medical staff about what the next steps should be. Be sure to include Mom in the conversation.

2. Ask, ask, ask. There may be supports available to you through government agencies, your insurance provider or other community services. Find out what help is available and how to access it.

3. Discover what Mom needs. Does she need an assistive device like a walker? Will she need a wheelchair for a period of time, and if so, could you rent it? Maybe you will need to think about buying a foldable wheelchair (called a transport chair) for when walking a longer distance is necessary. Will she need help getting in and out of the tub/shower? Can she put her socks on? Does her house have a lot of stairs that are going to be difficult? Make a list of what she needs, and another of what can be done to help.

4. Don't panic. It may be that some supports will need to be put in place for a period of time while she is healing, but this may not be the time for major permanent changes, such as moving. Make sure to get a proper assessment from your doctor. What is she going to need for now, and what will be needed in the future? Again, include her in all these conversations as you work out together a plan of care.

5. Think ahead. It may be that Mom heals well from her fracture, the arrhythmia is controlled by medication and the depression passes. However, given her age, it is the time to have several conversations. The "at some point you will need to move, Mom, and where do you think you'd like to live?" conversation will be the next one. You may be surprised to discover she's already thought this one through. If you haven't done it already, you should have the "powers of attorney" conversation, so that everything is legally in place when you need it. And at some point, perhaps connected to the legal work, you should have the "if you were to have a medical 'event' requiring CPR, would you want it? What kind of end-of-life care would you like?" conversation. Timing is everything for each of these, but don't put them off too long.

Janice, or anyone who suddenly becomes a care partner, has to make multiple decisions quickly. It can be frightening, overwhelming and make you weary. I go back to my original statement. Get help.

Because...there's no shame in asking for help.

Wednesday, 13 January 2016

Care Partner Wednesday-- Communication

I am amazed at the number of conversations I have in a day, where I have no idea what we are talking about.


When you are talking with someone with dementia, the conversation can take all kinds of twists and turns. It may go down dark alleys where you don't recognize anything. You may get totally lost. This happens to me several times in a day.

I want to give you my primer on what you don't do, and what you do in these kinds of situations. Both are important. The goal of a conversation with someone with dementia is for both of you to come away satisfied, and to feel like you have communicated. This is possible, even if the words don't make any sense.

1. Don't argue. It accomplishes nothing (except perhaps making you both frustrated and angry) and the person with dementia will be convinced you are wrong, anyway.

2. Don't laugh. You may hear some of the most outlandish things, but it's important that the person feels respected and not made fun of. Watch your body language! (More on this later,) Of course, if the person says something funny that was designed to make you laugh, or you're laughing together, that's another story.

3. Don't give up. Communication isn't all about the words that are spoken. If you don't understand, look for other signals that give a hint as to the person's mood. Are they angry, upset, happy, frightened? Go with what you can pick up, and address it. "George, I'm not totally understanding, but you seem unhappy." You may never "get" what the conversation was about, but if you and George go away from it having communicated, that's all that matters.

4. Do take the blame for the lack of communication. George knows what he means, but you have an understanding problem. Validate him by your attitude. It's not, "George, what are you talking about?"
but "George, I'm not sure what that means. Could you help me understand?"

5. Do treat the person with respect.

6. Do watch body language, which speaks clearer than words. What is the facial expression? Do they look animated or depressed or thrilled or agitated? Even if none of the words spoken make sense, this will give you huge clues, and you can address it.

7. Do use your own body language to communicate. A smile, a hand on an arm, a hug--all of these can help a person feel that they have been heard. I try to look interested, nod my head, say "uh-huh" and nod some more. I give my full attention, even if the words make no sense to me.

8. Do try to pick up the thread. There may be something--a few words or an expression, that you understand and can pick up on.

Communication is about being heard. If, after a conversation, the person with dementia feels they had your full attention, they received respect and empathy and were heard, they will be satisfied.

Words are secondary.

Wednesday, 6 January 2016

Care Partner Wednesday--"I'm still here."

I've been binge-watching old "The West Wing" shows lately, a series which ran from 1999-2006. I don't have a TV, so it's all new to me. This political drama gives us a fictional peek into the white house, the president and his top aides. I find it fascinating.

The episode that I can't stop thinking about, didn't take place at the White House. C.J. Cregg, the White House Press Secretary, is invited to speak at her high school reunion. She goes reluctantly, only because it will give her a chance to visit with her dad. When she gets to his Dayton, Ohio, house, she is shocked. Her step mother isn't there, the kitchen is a disaster, and her dad, who was an intelligent, high school math teacher, is obviously having trouble coping. It doesn't take long to realize he's developed Alzheimer's.

There are a few poignant moments as C.J. tries to wrap her head around what is happening, and to figure out how to help her fiercely independent father who, at the core of his being, is terrified. At one point he picks up a framed picture of C. J. as a young child and says, "I don't know who this is." The look of pain on C.J.'s face is one I've seen on other family members. I wanted to reach through the screen and hug her, assuring her that he knows his daughter, just not the little girl in the picture.

The most heartbreaking moment, for me, was when C.J. finds her step-mother, who has abandoned her father. The step-mother left because of the onset of the disease, and tries to justify her actions. "I didn't sign up for this," is the gist of her argument, and I begin to hate her at this point.

"Do you know the nickname for the disease?" she says to C.J. "The long good-bye."

I wanted to scream, "NOOOOOO!" and jump up and down and rant, but the dog was looking at me funny, so I am giving you the benefit of my thoughts.

I first heard the phrase, "the long good-bye" in a DVD called 20 Questions, 100 Answers, 6 Perspectives. It has apparently been used for some time to describe how Alzheimer's changes the person diagnosed with the disease and affects those who are close to them. The person who referred to the phrase was Richard Taylor, PhD, an immensely intelligent man who also happened to be diagnosed with Alzheimer's. His response was, "I'm still here. I'm still here." He didn't pretend that the disease hadn't changed him, and he talked candidly about the challenges of memory,  his emotions and of living with the disease. He talked about his family and friends, and what they were feeling. But at the end of it all, he said, "I'm still here."

What does "good-bye" imply?

  • something has ended
  • the fun is over
  • things will never be the same again
  • someone is leaving
A long good-bye suggests we take all these negative emotions and stretch them out over an uncertain (but inevitably long) period of time.

But..."I'm still here." Richard Taylor's voice cannot be ignored. While diagnosed with the disease, he wrote a book, spoke all over the world, wrote a blog, recorded on youtube and influenced care partners everywhere. He made a difference. His life was valuable and he lived every day of it until he died of cancer in July of 2015. 

Not everyone has the intelligence and the voice that Richard Taylor had. But everyone, no matter what their age, medical condition or cognitive status, is valuable. Everyone can contribute to the lives of others.

Everyone is still here, until they're not.