Care Partner Wednesday--The Domain of Growth

They can’t learn anything new.

When I started working with frail elderly people almost 18 years ago, this was the first and most absolute lesson taught to me about people with dementia.

Don’t try to introduce any new information. It will only frustrate.

This is why, when I first learned about the domain of growth, I was sceptical. The Eden Alternative refers to growth as "development; enrichment; expanding; evolving." 1 Elders needed opportunities for growth in order to feel a sense of well-being? I didn't think this was possible for elders with dementia and I wasn’t sure about this concept for any elders. How often had I heard the words, “I’m too old to ____________.” I've observed that elders choose not to try new experiences, believing that their age precluded them from the ability to enjoy them.

So what’s this domain of growth about? “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.” 2

I began to think about what I had been taught. I realized growth was there, but I didn’t recognize it. People with dementia eventually learned to find their room and made new friends. Their care partners became familiar. They learned and grew. Others who didn't experience cognitive decline tried new experiences and were enriched by them. Days later, they still enjoyed the experience through memory.

Recently, I held a special lunch where I served homemade pizza. As a 95-year-old man bit into his first slice, he turned to me and said, “Do you know, I’ve never had pizza before.” I wondered how that was possible, but I was delighted to watch him devour two slices.

Has media duped our society into believing a lie about aging?  The medical model focuses on “mitigating decline and disability.” 3 Our society buys into the lie that aging is all about losses, until you die. We joke about it on social media and among ourselves. Our elders believe the myth that at a certain point, they can’t contribute any more. They can’t give, and they can’t have adventures and grow.

It’s a lie.

My friend tells this story:

“I was at a little pie and ice cream café in Bragg Creek, Alberta, when a couple on a motorcycle pulled up. The driver got off and removed her helmet. She walked back and lifted her passenger off the seat. She removed his helmet, revealing a white head of hair on a frail looking older gentleman. They came into the café after some circulation-stimulating leg shaking, and took a seat at the next table. We got chatting, and I learned he was 92, and the lady driving the bike was his granddaughter. Every weekend through the summer, weather permitting, they went on a one-to-two-hour ride—one way!”

Growth may not look like it did when we were younger. It may need to be modified. We need to realize that all kinds of experiences are possible, and stop limiting our elders and their growth.

Care Partner Wednesday--The Domain of Growthhttp://ctt.ec/hJ7cz

1. http://www.edenalt.org/about-the-eden-alternative/the-eden-alternative-domains-of-well-being/

2. and 3. http://www.edenalt.org/wordpress/wp-content/uploads/2014/02/EdenAltWellBeingWhitePaperv5.pdf

Care Partner Wednesday--The Domain of Meaning

When I hear the question, "What is the meaning of life?" I think of someone climbing a mountain, asking a sage for the answer. After the wisdom is given, the person climbs down, ponders, and goes forth to live their life as a better person.

Right?

There aren't any mountains where I live, and sages are in short supply, so I hope that's not how to find the answer to this deep and essential question.

Maybe I'm asking the wrong question.

We are not seeking the meaning of life, but what gives life meaning.

The domain of meaning is the one I have the most difficultly with. What gives life meaning? Like a butterfly, it's hard to catch.

I've thought about what gives meaning to the residents I serve, and it condenses down to two issues.

1. Know What's Important

The domains we've already discussed are foundational.
It's important that you know me. If you don't know (or don't care to know) who I am, I have no more significance than the chair I am sitting in.
It's important that we connect. If you don't share who you are, there is no relationship. I am just another task in your life.
My choices and the opportunity to make them are important. Without choice, how do I express my identity?
It's important that I feel secure in your presence, or I won't share myself or care to connect with you.

It's also important that I know what really matters in life.  I am always amazed when I meet people in their 90s who are more concerned about their possessions than the relationships in their life. It's not a given that people learn this, and when they don't, it's incredibly sad.

2. Be Able to Give Back

I hear frequently, "I'm no use any more. I can't______________(fill in the blank) or ___________(more blanks) and I'm not good for anything." Our challenge with the elderly is to turn the focus away from their losses, which they all have, to their gains. What has been added to their lives in their many years of living? What wisdom have they gained? What wonderful stories of their lives can they share? What activities which they enjoyed are still possible in some form?

How can they give to us? Being able to give, rather than always receive, is essential to having meaning in my life.

It was the worst day of my life. For the last three weeks, all I loved and held precious had been threatening to crumble, and on that day, it did. I'd never felt such pain. However, I was at work, and life needs to go on, so I gathered my tattered emotions around me and went forth to do my job. At lunch, I sat beside a retired school principal in her 90s, to assist her with her meal. 

People with dementia have an uncanny ability to pick up on what you are feeling without a word being said. I smiled and spoke to her as I always did, and no one else in the room knew that anything was amiss. Normally, when I am helping her, she will put her hand on my arm, sometimes running it up and down. She did this with everyone. 

Today was different. She ran her hand down my arm to my hand, and laced her fingers through mine. We sat like that through the whole meal. 

Not a word was spoken, but on that day, she gave me an incredible gift.

In our mission to be care partners, we must remember we are just that. Partners, not givers. It is so easy to default to giving and doing for someone who needs a lot of support. If we aren't careful with that, we steal independence, and rob them of meaning.

Care Partner Wednesday--The Domain of Meaninghttp://ctt.ec/x78DA

Care Partner Wednesday--The Domain of Security

Imagine George.

He moved to senior’s facility with his wife several years ago, and they enjoyed their lovely apartment, the many activities and their friends among the community. It was a good life.

Then Betty died. George felt like his right arm and half his brain was missing. And all of his heart. His family arranged housekeeping services, and for all meals to be provided, but George sat in his chair day after day, staring at the TV. In his mind, things couldn’t get worse.

Then they did. He fell, and broke his hip. Now he needed help just to get dressed in the morning, and he couldn’t go to the bathroom independently, a fact that horrified him. His children talked to the facility, and it was decided George be moved to the care section.

Today George moved to my neighbourhood. He’s lonely, grieving, depressed, and angry every time he needs help in the washroom. How do I fill George’s severely depleted domain of security?

It’s not going to happen overnight, but there are a few things that can help right away. As George’s family sets up his room, I encourage them to put up pictures and bring furniture that is comfortable and familiar. As George looks around his new room, the things that matter to him are there. Also, I introduce him to his care partners. There are six people who look after him over the course of the next weeks, but they are all regular staff, and they take the time to get to know him. They find out that he used to work for the railroad and loves trains, and that is the conversation they have whenever he needs help in the washroom. He and the physio assistant talk sports as they work through his exercises. The music therapist heard him whistle and invites him to join a group that is singing. His warbling whistle adds a new dimension and soon he is a celebrity in the group and making connections with others. A few months down the road, George realizes that the fears and anxiety that dogged him when he first arrived have dissipated. His domain of security is full.

I’ve condensed the process of several months into one paragraph, but you can see that there are practical steps to fill the domain of security. Familiar objects and familiar staff are important. So are respect and privacy. Do I knock and identify myself every time I go in a room? Is personal care kept private? Am I treated with dignity, even when I make social faux pas? All of these work together to make the George’s of the world feel secure.

There’s another, controversial aspect to security. Risk. We who work among the elderly hate risk. We want to “keep them safe,” but safety can become a prison.

What if George, after his hip healed, wanted to go walking outside the building? Perhaps he loved to sit in the nearby park and feed the birds. However, getting to the park meant crossing a road and going up a curb. Can you hear it?

“He’s still quite slow. How can he safely cross that road?”

“What if he trips over that curb?”

“What if…?”

George’s simple pleasure of making his way over to the park and feeding the birds is restricted to the rare times his family could go with him. His safety has become a prison.

Let’s try a different “what if…” What if his family recognized that the trip to the park was important to his well-being? What if they signed a negotiated risk agreement, acknowledging the risks and allowing the park trips anyway?

“To take away all risk and the chance to make mistakes is to take away the right to be human. Maximizing safety actually creates insecurity. While safety is important, there is a range of risk tolerance. Optimizing safety with the individual, based on their risk tolerance, creates security.”1

I’ll never forget Margaret and her salads. Margaret loved salads, but as she aged, she had more and more difficulty swallowing. The dietitian recommended minced diet, which meant the end of salads for Margaret. We talked with her family, and together came up with a plan. Margaret’s meat was minced, but she still had salad. She knew enough to take her time, chew well and take every precaution. She enjoyed her meals, but all was not perfect. Occasionally, she choked. When that happened, we responded immediately. Until the day she could no longer swallow at all, Margaret ate and enjoyed her salads.

For Georges and Margarets and all elders, security is foundational to well-being.

1.     http://www.edenalt.org/wordpress/wp-content/uploads/2014/02/EdenAltWellBeingWhitePaperv5.pdf

Care Partner Wednesday--The Domain of Securityhttp://ctt.ec/fP4vf

Care Partner 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 each day until a heart was available.

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, and he was only allowed a certain amount of fluid in a day.

In the midst of this 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 to 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 fluid intake, didn't I know? How many had I given him?  Didn't I realize 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.

If you think about what we have talked about, identity (knowing me) and connectedness (connecting with me) together defeat the plague of loneliness. Autonomy in one of the seven domains that defeats the plague of boredom. When everything is done for me and I have no choice, life is boring.

Autonomy is especially important in community living, such as long term care or retirement. When people live together, rules are necessary. It usually isn’t the case that those who live under the rules, make the rules. Rules govern every aspect of long term care—when to get up, when to eat, what food to have--the list goes on. When someone enters long term care, they can feel like all their autonomy is lost.

So what do we do?

Respect looks for ways to restore autonomy. Creativity looks for ways to do things differently. What would happen if people got up when they were ready, chose their own clothes, went to the activities they enjoyed, or sat at the window and watched the birds?

One of my residents confessed to me that she used to love sardine sandwiches. That was a delicacy that was never going to hit the menu, but I had her tell me exactly how she liked them. Whole grain bread, a touch of mayo, and lettuce.  I brought in a can of sardines and the dietary department made it up for her. I think we were as excited as she was when we presented it to her. Not only was her choice respected, but she felt special and validated.

 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.

Care Partner Wednesday--The Domain of Autonomy@writeforhimhttp://bit.ly/2d1s7MW#edenalternative

1. http://edenalt.org/wordpress/wp-content/uploads/2009/06/EdenWell-BeingWhitePaperv5.pdf