Wednesday, 28 September 2016

Care Partner Wednesday--The Domain of Connectedness

Have you ever gone somewhere where you didn't know a single person? For an introvert like myself, that's a stretching experience that leaves me feeling exhausted. My first writer's conference, I flew into a huge city alone, and found my way to the shuttle bus at the airport. The hotel was overpowering, with moving sidewalks and meeting rooms by the score. I put on my name tag and ventured forth among the masses. No one knew me. I knew no one. With a parched throat, I squeaked "Hello" to a few people.

Across the room, a hand beckoned me--my writing mentor from a course I just completed. I could have hugged her. In fact, I did hug her. That one small connection gave me the courage to shake hands and talk to the many people I didn't know.

Connectedness is essential to well-being. The Eden alternative says:

"CONNECTEDNESSbelonging; engaged; involved; connected to time, place, and nature."1

My first introduction to connectedness when working among residents with dementia was somewhat startling. "This is my mother," said the lady beside me, introducing me to a woman who looked only slightly older. I looked from one to the other in disbelief, but even as a newbie,  I knew enough to smile and go along with it. Both women seemed to agree with the relationship. The one answered to "Mother!" when her friend spoke to her, and they moved around the room arm-in-arm, so who was I to question?

I did question, though. Privately, I asked one of the nurses, who laughed at me. "No, of course not. They're almost the same age. Maybe Mavis resembles Jean's mother, and now Jean believes she is her mother, so what's the harm?

That was my first exposure to the power of connectedness. Jean had family who weren't thrilled with the relationship, but went along. As a single lady with few connections, Mavis had no on visiting her. They both benefitted.
Friendship is essential to well-being. Most elders are proud of their families and love them beyond measure. Those connections are essential. But friends are peers, and a visit from a friend is gold.
Connections between elders is key. Marg doesn't often leave her room, so Joan sits with her and they chat. Joan gets anxious, so Linda engages her in conversation. All the ladies at table five worry when Gertie doesn't show up for meals. Evelyn is physically disabled, but is a friend to Herb, who is cognitively impaired. These kind of connections send an important message. You are needed. An elder who is experiencing multiple physical challenges can feel they are not worth anything any more. Connectedness says, that's not true.
Alice's dementia and hearing deficit, not to mention her poor eyesight, make communication sparse. She'll answer when spoken to, but only a few words. But when Phoebe, a beautiful white puppy, arrives, Alice lights up. She sits and pets the little fur ball, and her eyes glow. She is connected.

Gloria loved nothing better than to sit in the garden on a warm day, with her face lifted to the sun. It brings her peace. She is connected.

Identity and connected to work together to defeat the first plague--that of loneliness. If I know you, we can connect, and I neither of us is lonely.

And sometimes it's about humour.

Travis, who was virtually blind, leaned across the table to talk to Freda. "You are pretty." Freda's face lit up with one of her winning smiles. 

"Travis," I whispered across the table, "Are you flirting?"  

Ignoring me completely, he looked in Freda's eyes and said, "I am flirting with you."

Now that's connection!


Wednesday, 21 September 2016

Care Partner Wednesday--The Domain of Identity

I first went to camp when I was 12, and it changed me. I discovered this suburban girl had a country heart, and was totally at home in the woods, by the lake and near a campfire. I lived in a cabin with seven other girls, and they became my best friends and confidants over the next ten days. I learned new skills, gained confidence and discovered aspects of myself. God was just a whisper away when I was in the woods.

Two years later was my third year and I was as excited to be going as the other two. But this year there was a difference. My counsellor's name was Ann. Most counsellors chose 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.

The Eden Alternative defines identity, the first domain of well-being as, "Being well known; having personhood; 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. I need to know how they like their tea, what clothes they like to wear and what's important to them. 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 what she liked for breakfast, how it was to be prepared, what tray it was to go on and at what temperature it was to be served. As far as Mrs. H. knew, breakfast magically appeared, exactly how she liked it. To go in her room and ask her what she wanted 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.

What about care partners who are caring for their loved one at home? "Of course I know her, she's my mother (wife, aunt etc.)" Challenge yourself to know more. Find out stories of their childhood or dating years. Ask questions. Listen. The very act of wanting to know more about me, validates me. 

When I know you, it is easier 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.


Wednesday, 14 September 2016

Care Partner Wednesday--What is Quality of Life?

What makes life worth living?

(If you answered "coffee in the morning" I'm with you on that, but we're going a little deeper here.)

What are the essential elements that make you feel complete, fulfilled, contented, whole?

Do you need to have full mental capacity to have quality of life? Does it disappear after a certain age?

The Eden Alternative identifies seven domains of well-being that are universal. Anyone of any age could relate to these, but several of them can be absent in the elderly, especially those who are living in institutions. People with dementia are often not able to communicate their feelings as well as they used to.  If they are missing some of the domains of well-being, they may communicate that loss through actions.  In an institutional setting, we call these actions "behaviours." Aggression, anxiety, wandering are part of a long list of (undesirable) behaviours, and often the solution is psychotropic medication. While there is a place for medications when dealing with depression, anxiety and other issues, there is also a place for looking at root causes. 

Perhaps we need to ask the question, "Why?" It's not always apparent, but sometimes it's possible to find out why a person is acting a certain way. Essential emotions may be missing from their lives, causing them to act out.
Here are the seven domains of well being:

* Identity
* Growth
* Autonomy
* Security
* Connectedness
* Joy 1

What do they mean? What does it look like (or feel like) when they are present and what might happen, especially to someone with dementia, when one or more is missing?

We're going to explore these in the coming weeks.

Think about this. What would happen, if every time an elderly person displayed a difficult action, we asked, "what domain of well-being is missing?" And when we identified what was missing, what would happen if we asked, "how can we restore (identity, security etc.) to that person?

I'm not claiming magic here. All aggression, anxiety, wandering, depression and other symptoms don't always suddenly disappear. But often, they do. Often the only "medication" needed is to feel known as a valuable person, to have meaningful connection to another , or to have the ability to make independent choices.

We're going to examine the domains of well-being in the coming weeks. We'll look at what they mean, and what it means in an elder's life if one or many of them are missing. 

We'll ask a vital question: how do I return this domain to my loved one's life?


CONTINUE THE CONVERSATION: What does quality of life, or well-being, mean to you?