Wednesday, 25 June 2014

Carepartner Wednesday-- Well-being

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?

Guess what?

They don't change if you are elderly, or have dementia.

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. Problem solved, right?

If you've read anything I've written in the last several months, you know that's not right. But, aside from the side effects of psychotropic drugs, and the fact they don't work, there's another problem.

We're treating the wrong problem.

If I am anxious or wandering or aggressive because I am insecure, and you treat me with an anti-anxiety medication, I will still be insecure. I may or may not still exhibit the behaviour, but something in the core of my being will be missing. Nothing but discovering what I need and looking for ways to supply it, will help.

Problem is, that's hard. It's not an exact science.

But when it happens, it's magic.

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 we have them, 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, because this is key to our discussions about culture change and using as few psychotropic drugs as possible.

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?

Well-being would happen.
Quality of Life.

Life. Worth. Living.


Wednesday, 11 June 2014

Carepartner Wednesdays--How do I Treat my Friends?

How do you treat your friends?

I like to think I am a good friend, but in thinking about the relationships I have, every one is different.

  • I can talk about fart jokes with one friend and not another. 
  • One friend and I knit together, another takes me shopping (literally takes me by the hand from store to store. I HATE shopping but sometimes you need to, you know, buy things. If it involves comparison that can't be done on the Internet, my friend who is excellent and patient takes me from store to store until we find what is needed.)
  • Another friend is a great encourager. We like to talk about ideas and especially what is happening at my workplace.
  • I have a friend who is a counsellor. If I have a question about relationships, she is the one I call.
In each of these friend's lives, I have a different role. Sometimes several different roles. We found each other because we are the sort of people who nourish each other.

My friends are important to me. When they are hurting, their situation crowds my brain, and I storm the gates of heaven with requests for help. When I am hurting, they are there, caring for me. We have fun together, we do things together, we look for ways to bless each other.

How do you treat your friends?

Last week, I wrote that some of my best friends have dementia. The people with whom I partner in care have become my friends, and although the relationships are different, there is all the give and take of friendship. I have learned, however, that this sensitive relationship requires extra care. In order to maintain respect and integrity in our friendship, I have to think about actions I take every day, and be more deliberate in how I treat my friends.

Here are some of the principles I have learned:

  • Knock when you enter a room, and wait to be given permission to enter. Even with my best friends, I would never enter their houses without knocking. There may be cultures where that is normal, but not where I was brought up. Although I always knock when I enter a room, I haven't always waited, but when I looked at it from their perspective, knocking without waiting is like not knocking at all. It doesn't give the person the choice to invite me in, it presumes. Who am I to presume? The only exception to this would be the person who is either profoundly deaf and can't hear my knock, or is unable to give me some signal that I can enter. In the first case, I knock as loud as I can, and if I'm not heard, I will step in a few steps until I can be seen, and call. In the latter case, I will knock and then come close to the bed so the person can know I am there.
  • I try to sit at eye level or even a little below. If I am standing above the person, it makes for an unequal relationship. Remembering that it's their home, I ask for permission to sit, as well.
  • Dr. Power in Dementia Beyond Drugs talks about "centre-ing yourself."People with dementia are amazing at picking up on non-verbal cues. If I am agitated about something, or feeling rushed or even tired, they can often pick up on it. I try to take a few deep breaths and focus on the person I am visiting. This is their time. I am visiting with a friend.
  • Listen. Have you ever been with a person who you sense is waiting for you to finish talking so they can talk? My reaction is to close my mouth. If you don't want to listen, then I don't want to talk. I close my mind and my heart as well. No surprise, none of my friends are like that. When I am with one of my friends with dementia, I try to listen closely. People with dementia often wear their emotions close to the surface, and in listening, I give them the gift of hearing what they are really saying.
  • Slow down. If I was out walking with my friend, and she sprinted ahead of me, I would be hurt. At first, I might try to keep up, but when it became obvious that I couldn't I would start walking at my own pace. Obviously, we couldn't have conversation if she was miles ahead of me. It's unlikely that we could have friendship. Respect teaches me to slow my thoughts and focus on one thing at a time. My speech should slow a little, too, depending on the person I am talking to. Let them choose the pace, and I will follow.
  • Connect. Non-verbal communication is important, and because it's unconscious, it takes effort. I saw a care partner walking down the hall with a resident. The resident was pushing a laundry cart, as they had just delivered the dirty laundry together. Wonderful, meaningful engagement. On the way back, however, the care partner's mind drifted. (I know how easily this can happen.) As they walked together, her face was unsmiling and her arms crossed. The resident hadn't noticed yet, and was greeting people, but to anyone looking on, the care partner's body language was shouting negative messages. I made a gesture and she understood immediately. Make eye contact, smile, speak clearly and watch your body language.
"In fact, as dementia becomes advanced, and verbal comprehension becomes diminished, the non-verbal signals we send take precedence. An elder may not understand your words, but your tone of voice and body language speak volumes."1

How do I treat my friends?

Like friends.

The principles in this blog are taken from Dementia Beyond Drugs by Dr. G. Allen Power, p. 136-138.
1. Power, G. Allen, Dementia Beyond Drugs, p. 138.

Wednesday, 4 June 2014

Carepartner Wednesday--Some of My Best Friends Have Dementia

Can you hear the violins playing in the background?

I'm going to ask one of those sappy questions, so be prepared.

Are you ready?

What is a friend? (Yes, I hear those groans...)

A friend is someone you want to spend time with. Someone you can laugh with, and cry with. Someone you can trust with confidences and everything else that is important to you. A friend loves you for who you are. Respects you. Is proud of you. Gives themselves to you in so many ways.

That's why I can say some of my best friends have dementia.

I know a lot about my friends, and every day, I try to learn more. I am a student of them, and when they share stories of their lives, I am richer, because who they are adds to my life. It's a gift I give and receive, because I tell them stories of my stories, too. Tonight I told a resident how beagle Bailey loves to give hugs, and she told me about a beagle her family had on their farm. The cat had eight kittens, and they followed the beagle around like ducks in a row. We laughed. We connected.

I love doing things with my friends. This Friday, we are having the first barbecue of the season together on the patio. My mouth is watering now.

We communicate. While walking a resident to lunch one day this week, she said, "Will you join us?" I explained that I had a couple of people to assist in the dining room, but when I was finished, I would join her table. When I was done, I ran for my container of salad, pulled up a chair and had the most delightful lunch chatting with the ladies at that table. Better than sitting at my desk, working on "stuff." The "stuff" will wait.

We build each other up. I have a resident whose verbal responses are slow, and at times, non-existent. I can see the thoughts behind her eyes, but sometimes she can't bring them forward. But when she smiles at you, the sun bursts forth and you feel loved. Her smile--always there, freely given--warms my heart every day. Every day, I tell her.

We laugh. I can't tell you the number of times in a day laughter will burst forth as we interact with each other. It's what friends do. One lady was telling me she didn't like the smell of the barbecue when it came in her window. "You have barbecue farts everywhere!" I burst out laughing, and remarked that I'd never heard that expression before.  She grinned. "That's because I just made it up!"

We are equals. I give to my friends, care and fun and support, listening and problem solving. They give to me wisdom and kindness and sharing and affection and love. What I give is important. What I receive is more important. Understanding that I am both giver and receiver is the most important of all.

Like all friends everywhere, we work at our relationships. I think about ways to improve their lives, and look for opportunities to get to know them better. They find ways to bless me with who they are.

This is radical thinking. The model of care we are used to, says, "I am here to look after you, keep you safe and clean and even occupied. I will care for you.  I will decide what is best and make sure that is what you get. I will give to you, and I will be professional about it." For years, we believed this was the right message.

This model of care says, "We are partners together in your care. You have choices. You have much to give. We will decide together.

We are friends."

Based on information in Dementia Beyond Drugs, G. Allen Power, p. 136.