Wednesday, 30 July 2014

Carepartner Wednesday--The Domain of Security

"To take away all risk and chances to make mistakes is to take away the chances to be human." 1

That's a radical statement.
(I love radical statements!)

Isn't taking away risk what care of the elderly is all about?

Think of all the equipment we use to do this. Wheelchairs (with seat belts), walkers, bed rails, restraints, bibs, incontinent products, locked doors, chair alarms, bed alarms. Some of these are necessary and useful, and many of them invade privacy and destroy rather than enhance the domain of security.

Let's talk about negotiated risk.

Negotiated risk says, "I know there is some risk involved, but the risk to my quality of life is greater if I am not able to do this. Therefore, I (or my power of attorney) will sign an agreement absolving you of all liability. If the worst happens, I can't sue you."

Mabel loved to be outside, and would often walk around the building of the long term care home where she lived. She had a walker, but refused to use it. She "didn't need that thing." One day, she stepped off a curb and fell, painfully twisting her ankle. Her family knew she had dementia, and could also get lost on one of these walks, although she'd never ventured out of sight of the building. They wanted to keep her safe, and asked if she could be moved within the locked unit.

A trial stay, involving being in the locked unit during the day and going back to her own room at night, was a disaster. Quiet, pleasant Mabel became aggressive and angry. She lashed out at staff, and was nasty to other residents. She lost interest in the activities she always enjoyed, and withdrew.

Fortunately, her family realised this wasn't working, and reversed their decision. Mabel was again allowed to walk around the building, and they signed a negotiated risk agreement, absolving the home of all responsibility.

What was happening? The family, because they loved Mabel, wanted her to be safe. Secure. They knew, within the locked unit, there was little chance for her to hurt herself, and an infinitely greater chance when she was outside. Mabel was kept where she was safe.

But Mabel's reaction showed all involved that her domain of security was severely damaged by their actions. Security, for her, was having the freedom to walk around the building, admiring the flowers and watching the children play. When that was taken away, Mabel felt insecure and violated, which led to anger and aggression.

We can be so safe, we aren't secure. Interesting paradox, isn't it?

Security also involves respect.

"Security also expands beyond the basic need for safety to include right to privacy, dignity and respect. A person receiving support services often finds their space becoming public space, forcing her into involuntary, intimate situations with strangers." 1

Respect means I work at becoming a friend rather than a stranger. I know you, so that we can talk about things that are familiar to you, and allow you to know me. When we are friends, my security isn't threatened when you care for me. When the elderly become frail, and their care needs involve the most personal of activities, this is incredibly important. In order for the domain of security to be intact, caregivers need to be familiar, trusted and people with whom they are comfortable.

Safety, respect, security.
The balance is both incredibly difficult and absolutely essential in order for this domain to flourish.


Sunday, 27 July 2014

The small miracle of words

"Gracious words are like a honeycomb, sweetness to the soul and health to the body." Prov. 16:24

"If you can't say something nice, don't say nothin' at all." Thumper

During the sermon this morning, tears sprang to my eyes as a memory surfaced. Tears are a sure indication of something deep within me being stirred. Pastor Doug was talking about the impact of the tongue from the book of Proverbs, and mentioned a teacher who had such influence on him, he remembered those lessons to this day, and still had a small gift she gave him.

I remembered two teachers.

In grade three, my teacher felt that intimidation was an effective teaching tool. I was good at many things, and my budding writing skills were emerging, but those weren't areas I remember her focusing on. Basic math wasn't my forte, and I struggled. It was like cotton wool was wrapped over my brain during math class, and I couldn't get the concepts to stick.

One day, she called me to the front of the class. Shy and feeling vulnerable and afraid, I picked up the chalk and stared at the math questions she wanted me to solve. Having my classmates watching (and a few snickering) exacerbated the problem, and even the math I knew flew from my mind. I was paralysed. Miss T. then began to berate me in front of the class, a method she assumed would improve my performance. What it did was make me cry. In disgrace, I crept back to my seat, a wounded animal. I wouldn't recover for many years.

Jump ahead to grade 11. My grades were mediocre at best, but my teacher, a man with incredible insight, saw something in me. When my parents went to the fall teacher's interview, he said to them, "Someone has told her she is stupid. I am going to convince her otherwise." An interesting sideline is, my parents didn't know about what Miss T. had done, so were skeptical of his words. They relayed them to me, and immediately in my mind I was standing in front of the chalk board again. I was awestruck at both his insight and his interest.

I was a brand new Christian and Mr. A. was an atheist. He was my homeroom teacher, and taught me history that year and the next. He challenged me, and I remember long conversations after class where I was stretched, and learned to both voice my opinion (silence had been my secret weapon to that point) and to think deeply and learn to defend what I believed. I developed a passion for history, and wanted to understand the "why" behind events. I discovered, to my astonishment, that I was a person of worth, with a mind that worked, and opinions that mattered.

My marks rose steadily. At the beginning of grade 11, I was averaging low 60s. By the end of grade 12, I scored an 87%. (Of course, I dropped math in grade 10...) At the end of grade 12, I wrote Mr. A. a note, telling him how his belief in me changed my life.

Four years later, I graduated from Seminary with two degrees, and wrote Mr. A., asking if he would attend my graduation. I wasn't sure if the letter would get to him, or if he would remember me. On the night of graduation, I scanned the crowd, and was delighted to see his quizzical smile. He told me his wife was graduating from university that night, but they talked about it, and she agreed it was important for him to be there for me. I never met his wife, but will always be grateful.

Both these people were teachers, but teachers aren't the only ones with influence. Each of us has the chance to say to someone:
"You matter."
"I believe in you."
"I appreciate you."
"I am thankful for you."

I've not always been good at this, but I think I have improved. I've learned to stop and pray when I am upset, instead of allowing hurt and destructive words to tumble out of my mouth. I'm learning not to judge, and to give the gift of encouragement and affirmation whenever I can.

Sometimes, I fail, and I've learned to say, "Forgive me." This used to be more difficult. Pride would get in the way.

Now, I remember the broken child at the blackboard, and how those words would have changed her life.

"Thoughtless words can wound as deeply as any sword, but wisely spoken words can heal." Prov. 12:18

Wednesday, 16 July 2014

Carepartner Wednesday--The Domain of Autonomy

It was a desperate time. My husband was in the cardiac intensive care unit of a Toronto hospital, fighting for his life. His heart was large and floppy and not doing what hearts should do. He was on the list for a heart transplant, and various methods were being used to get him through until that happened.

I was working full time, spending a few hours with him at the hospital at night before taking the hour+ journey home. Life felt out of control. This was especially true for Bill, who couldn't even sit up in bed. There was no autonomy--no choice. Even his food was carefully chosen for him and measured, as he was only allowed a certain amount of fluid in a day.

In the midst of that madness, we invented a game. He was wearing an oxygen mask, and I would get a cup with ice chips and toss them one by one in the holes in the mask.  He would try to catch them. Between the ones that melted (they were chips, after all) and the ones that missed (I'm not a great shot) he only got a few, but we were amusing ourselves, and it seemed to be a way to lighten a horrible situation. We made the choice turn pain into a game.

Until the nurse yelled at me.

She saw me leaving for more ice chips, and lit into me. Those counted in his total liquid intake,  didn't I know? How many had I given him?  Didn't I realise this was all scientifically measured and I was putting him at risk?

I came back to the room and smiled at him, changing the topic of conversation. I left shortly after, and cried all the way home. Besides being humiliated, my one tiny choice and our silly little game were crushed and destroyed. I felt destroyed, too.

It's part of who we are to desire autonomy. Choice. Freedom. Our country was built on those principles, and we, its citizens, hold them dear.

"Simply put, to be autonomous is to be one’s own person … to be respected for one’s ability to decide for oneself, control one’s life and absorb the costs and benefits of one’s own choices." 1

Autonomy is what makes us people, separate from those around us.

It is especially important in community living, such as long term care or retirement. When people are living together, there are rules, and usually they aren't decided by the people involved. When to get up, when to eat, what to have--the list goes on. When someone enters long term care, they can feel like all their autonomy is lost. They are told when meals occur, and although there are probably choices, if they have a craving for something special, it's probably not on the menu. There is a certain time for a shower, and a time to go to bed. A person can feel like all choice is gone. Some caregivers feel they must do everything for the person they are caring for, further destroying autonomy.

So what do we do?

Respect looks for ways to restore autonomy. Here are a few scenarios.

"You want to sleep in? You can, and we will bring you breakfast when you are up."
"You want something special to eat? How about we buy the ingredients and make it together tomorrow?"
"When would you like to have your shower? If you're not up to it now, maybe we can try again in an hour."

The bottom line is respect. If I'm coming from a place of respect, I will look for ways to give you as much choice as possible. I will ask your opinion. I will value it when you give it.

And I won't crush your ice chips.


Thursday, 10 July 2014

Carepartner Wednesday--The Domain of Growth

Friday was patio lunch in my neighbourhood. Homemade pizza, caesar salad, and ice cream in sugar cones. Even though the weather was too cold and windy to have it on the patio, the eight residents who joined me in the lounge for lunch had a great time. So did I. These lunches are labour intensive, but every moment is worth it when the group chats and giggles and enjoys each other's company.

This Friday, though, I made history along with the pizza. A 97-year-old man took a few bites and turned to me. "Do you know, I have never in my life had pizza before."

How is this possible?

He proceeded to pronounce it "very good" and eat the whole thing, plus the salad, an ice cream cone and  drink two cups of coffee. 

I was a part of the domain of growth in that man that day. A new experience. Learning something.

The domain of growth has been the hardest one for me to wrap my understanding around. Our society  associates many things with elder hood--frailty, inability to do the things they used to do, illness, dementia, pain, depression. "Just keep her comfortable--that's the best we can hope for." These words weren't spoken about someone in the last few days of life, but a lady with dementia who is stable and responsive. 

Growth? How is that possible?

Perhaps we should start with the Eden Alternative definition of an elder. “An Elder is someone who, by virtue of life experience, is here to teach us how to live." 1

Teach us? 
North American society has lost the concept that age brings wisdom, and wisdom is a gift dispensed by the aged.  We turn to technology, but it can only give us information. Only those who have lived through wars, had families, made mistakes and learned from them can take the knowledge and add their wisdom and experience to it.

How do frail elderly people grow?
They move to new living situations and adapt to them.
They sing in the choir and learn new music.
They try new recipes.
They suggest how an afghan should be put together and try different combinations of squares.
They make new friends and find ways to maintain contact and relationship with long-time friends.
They encourage.
They tell their stories.

What about those with dementia?
May of the above scenarios are true of them, too, but even those in the later stages of the disease can grow and share. One lady with profound dementia leans forward and listens with every part of her being when "Anne of Green Gables" is read. Another sings or hums with pleasure as she listens to her favourite music on an iPod. For another lady, it's having scriptures read to her. She often recites along with the reader.

"The opposite of growth is death--physical and spiritual. Individuals living with frailty continue to grow and teach us how to be human beings in a caring community. Everyone has the potential to be a "growth partner" to someone else." 2

My challenge each day is to look for these opportunities for each person in my neighbourhood, and to take the time to gather the many nuggets of wisdom that are available to me.  It's there, but not always where I am expecting it. 

Sometimes it's in the pizza!


Wednesday, 2 July 2014

Carepartner Wednesdays-- The Domain of Identity

When I was about 14, I went to camp. It wasn't my first time, and I absolutely loved it, as I had the years I'd gone before. At camp, I discovered this suburban girl had a country heart, and was totally at home with growing things. I was in a cabin with seven other girls, and they became my best friends and confidants over the next 10 days. I learned new skills, learned confidence and learned things about myself. Things about God, too.

There was one difference this year. My counsellor's name was Ann. Most counsellors had camp names (Jewel, Buttercup or Peaches) but for some reason, she elected to keep her real name. People would call, "Ann!" and I would answer, and they would reply, "Not you." Again and again.

Within a few days, I had my first and worst case of homesickness. I had lost my identity.

The Eden Alternative defines identity, the first domain of well being as, "Being well known; having person hood; individuality; wholeness; having a history." 1

When people live in medical model long-term care homes, the very nature of living together under the common umbrella of medical need becomes the person's identity. People are defined by where they live (room 226, not Mrs. Jones) what kind of diet they have ("put the feeders together at one table so we can help them") their mobility (how many wheelchairs are there?) and their diseases. They lose who they are outside of their needs.

This must no longer be the case!

I remember how often in the past we read obituaries for our residents and were surprised by their lives. I am ashamed to admit this. I need to know my residents--not just their jobs, how many children they had and where they travelled, but their personalities, their hopes and dreams, their passions. If I know who they are, then:

  • I can talk to them about the things that matter to them. 
  • I know what they love, and can ensure those activities are available to them.
  • I can be familiar to them, and share myself with them every day.
  • I can look for ways to celebrate who they are.
  • I can introduce them to other residents with similar interests, and give them opportunities to chat.
The domain of identity is why we strive to have regular staff who know the residents. No matter how good a care partner is, if they don't know the resident, it causes confusion and and frustration.

A care partner came to me in distress one day. She was our own staff, but hadn't worked in our neighbourhood before. A lovely, caring, person, she went into Mrs. H.'s room, introduced herself and asked her what she would like to have for breakfast. Mrs. H. became extremely stressed, started crying and threw her out of the room. What had she done wrong?

Nothing. In practically every other case, that would have been exactly the right thing to do. But Mrs. H.'s regular care partner knew exactly what she liked for breakfast, how it was to be prepared, what tray it was to go on and what temperature it was to be served at. As far as Mrs. H. knew, breakfast magically appeared, exactly how she liked it. To go in her room and ask her stressed her out!

The next day, I started on a "Growth Plan" for each resident, with as many minute details of how they liked things, and every other detail I could learn about their lives and who they were. New staff check the book before starting each day.

Think of a situation where you are intimately known.  

When I know you, it is easy to treat you with respect.

When I know you, I can celebrate who you are.

When I know you, and you know me, love isn't far behind.