Wednesday, 24 September 2014

Carepartner Wednesdays--Connecting with Staff

You dreaded this day.

You knew it would come. You saw it coming. You probably put it off too long.
Now it's here.

It's moving day. Your family member is moving into a care situation.

You've spent month visiting, asking questions and trying to figure out what the best place would be. This one is new and looks beautiful, but the staff seem to patronise the residents. That one is older and a bit run down. The other one seems good, but the waiting lists were too long. That one cost too much. You looked talked to others and struggled, and finally made the best decision you knew how.

You waited. Finally, the call came.

Now your family member is settled in, is adjusting and you should be breathing a sigh of relief.


You have some questions about the staff.

They don't do things the way you would, there are things you don't like, and details are getting missed. Some days, you are more stressed than when you were full-time care partner. Why can't they get it right? What happens when unfamiliar staff are on? How can you be assured your loved one is safe and well cared for?

We refer to the "daughter from Florida" syndrome. She (and it's almost always a "she") lives out of town, and feels guilty about that. When she flies in for a visit, she creates havoc, finding                    fault with everything, questioning every routine and activity, and makes everyone's life miserable--often including her own family member. When she leaves, everyone breathes a sigh of relief.

I was that daughter, once. My Dad was staying at an interim home until the new home he was to move into was open. We arrived to find him slumped in a wheelchair, drugged out of his mind. They put him to bed, but we kept trying to rouse him. He stirred but didn't respond. I marched to the nursing station and demanded to see his chart. I recognised (but ignored) the looks I got, and leafed through the list of his medications. The nurses began to talk about "periods of aggression," which was the reason he was drugged. I thought, "I'll show you aggression." I was furious, and back then, I didn't know what I know now about non-medical interventions.

This story has a good ending. We stood around his bed, calling to him. My sister kept saying, "Ann has come from Ontario to visit you." After several minutes, he raised one hand without opening his eyes, and muttered, "She shouldn't have spent the money." My sister and I grinned at each other. Dad was back. Within a few weeks, he was moved to the new facility, and things were much better.

In this case, I had good reason to question the staff, and this wasn't a carefully chosen facility, but a holding place until the other was finished. But I recognised, even as it was happening, that I was being "the daughter from Florida."

Giving up the position of primary care partner to another (or several others) is tricky. There is relief, but there can also be a sort of jealousy, and the conviction that no one else can do it quite right. Also, because someone you love is deteriorating and you feel out of control, you may well try to control what you can (such as what drawer the sweaters are put in, and what they are eating.)

For many years, I've been a staff member, and worked with families to ensure they feel comfortable about leaving their family member in our care. Here are some suggestions from both sides.

1. The staff is not the enemy. Get to know them as people. Show an interest.
2. Evaluate. Ask yourself, "Does this really matter?" Maybe it does. In that case, make sure staff know what you would like. Maybe it isn't important to anyone but you. Drop it.
3. Communicate. If you want people to do something, tell them in the nicest way possible. Be kind, but also be thorough. Make sure everyone gets the message. This may mean talking to a supervisor, writing a note--whatever gets the message across.
4. Go higher. If you have made every effort to get a message across and are not happy with the results, speak to a supervisor.
5. Give praise. Praise is the oil that keeps the wheels turning well. They will always turn, but with praise, they fly! Don't forget to tell a supervisor when someone has done well.
6. Volunteer. There is no more popular family member than the one who helps out. You can join in regular activities, go on trips, take people outside. Your loved one will be a part of this with you, making it a win-win.

There is one exception. If you suspect abuse in any form, take it immediately to the highest authority.
Abuse, even in language and attitudes, is never acceptable and shouldn't be tolerated for a minute.

We have families who, after their loved one has passed away, have come back to serve again with other residents.

They know they are among friends.

Wednesday, 17 September 2014

Carepartner Wednesday--The Domain of Joy

A woman in her 90's pulls her pants above the knees, sits back and suns her legs. A man with dementia gathers firewood and helps build a fire like he did so many times during family vacations.
A man in a wheelchair, virtually blind, becomes teary during a "walk" in the woods, as he remembers his father's hotel in northern Ontario where he spent his summers as a boy. An elderly woman who was an accomplished artist seriously discusses the colours and composition of the leaf stencils on the T-shirt she is painting.


Have you ever noticed that in advertising, "happy, joyful" people seldom depicted as elderly? Why?

Perhaps you think the answer is obvious. (I've heard "growing older isn't for sissies" more times than I can count.) No one is denying that there are some difficult issues in aging. People tell me about their bodies not doing what they want, and how frustrating that is. Their friends die, and that is both frightening and lonely. Their children become their caregivers, and that can cause embarrassment and conflict.

But each stage has it's challenges. There is no time in our lives when we say, "Now, life is perfect." Neither is their a time when we say, "The challenges are so great in this period of my life, joy is impossible." That might be the case for a period of time, but like a bubble trapped under water, joy eventually floats to the surface. Life ebbs and flows, and joy is possible in all circumstances.

At the end of August, we took a group of residents away for three days of a "cottage experience." We stayed in a large, double cabin, in a place which was totally wheelchair accessible. We cooked our own meals, sat in the sun, gathered around the table and talked, sang around the campfire and had a blast. We laughed, told stories and listened. We (staff and residents) experienced joy.

For the last several days, I have been working to put together a powerpoint presentation of the experience. This photographic album has put me back in the middle of the fun, remembering. Here are a few highlights:

* It seemed with every meal, the group enjoyed lingering and chatting. Breakfast the first morning was a fresh crepe for everyone as they arrived at the table, coffee and tea, mini-muffins and toast. Long after the last bite was eaten and cleared away, people were still sitting, telling stories, laughing and enjoying each other's company.

* A man in his late 80's tasted his first s'more.

* A man with dementia would start to become agitated at night, declaring he wasn't staying, and looking for his wife, who passed away a few weeks before. We asked him to play his harmonica for us, which he did for over an hour, interspersed with stories from his childhood and teen years. His anxiety turned to laughter and his domain of identity was full.

* I was wondering how the silly songs of campfire would go over with a man who was a businessman all his life, and I was prepared to take him elsewhere if he was unhappy or bored by it. He surprised me by laughing and singing along.

* We had a barbacue one night on a huge, half-barrel barbecue pit. Hamburgers, chicken and corn on the cob. I wasn't prepared for how delighted everyone was with the corn. Obviously, still on the cob was a way of serving corn they seldom saw any more, and they attacked it with enthusiasm.

* The watermelon seed spitting contest was great fun.

* Small eaters became big eaters!

* Any living arrangement has it's housekeeping details, and one man became invaluable in doing the dishes and catching flies!

This is the fifth time we've done this, and each year we learn something about the residents and ourselves. There's no denying it's exhausting and a huge amount of work, both before and during. But the rewards fill my domain of joy to the brim.

When on man came home, his wife asked him how it was. "It defied description," he said.
And then he cried.


Saturday, 6 September 2014

The Small Miracle of New Growth


Our small community, like many others, was devastated by the effects of the ice storm of December, 2013. For weeks afterwards, ankle-deep piles of broken branches littered the streets. I've never been in the aftermath of a hurricane, but the effect on nature must be similar. My heart hurt to see the mess and the fractures limbs and devastated trunks. We will never be the same.

The snow came in January, covering it in a merciful blanket of white. No one was fooled, though, as the lumpy hills were waiting until spring to display their graveyards, and the trees bowed low, weeping.

When spring began to waken and new life burst forth, I watched those trees and worried. A stunted leaf appeared here or there, but many looked gaunt. Our entire neighbourhood was lined with decrepit reminders of what used to be. 

Worse by far, though, was the day I came home to find an orange "X" on most of the trees. Really? Only one in ten to twelve trees was going to be allowed to remain. Huge gaping spaces would be everywhere. I wanted to cry.

Over the next weeks, the nightmare continued. Tree after tree was taken down, leaving a bare stump. We looked bigger--more open, but in a naked, shivering sort of way.

Last week, I had to walk to the train station. Walking to the train station means I have been stranded without a car, and is usually accompanied by mutterings under my breath. It either means leaving half an hour before my normal crazy-early start of the day, or walking home on aching feet. Either way, I am not good company. That's why it took 15 minutes for God to get my attention.

Each stump had a new tree growing.

Some of the more recent cuts had  few small branches peeking from the side of the stump. One of the first trees cut had at least 20 limbs about five feet high. The new trees were going to be stronger and fuller than the originals.

Isn't that just like God?

I can think of times in my life when I have been shattered by circumstances. Some were of my own making, but often, life happened and left me broken and terrified. I was cut down, shredded, and unsure how to go on, or even if I wanted to. Of necessity, I continued to function on the outside, but inside I was hollow and spent, cut down,  discarded. 

I cried out to God.

The God of second (and third and many more) chances, watered me and sent the warm sun, and I began to grow new branches. Despair turned to tiny branches of hope, and purpose and meaning was restored.

If you are living through an ice storm, and are feeling destroyed, listen to the words of your loving Creator.

"For I know the plans I have for you" declares the Lord. "Plans to prosper you and not to harm you, plants to give you a hope and a future." (Jer. 29:11 NIV)

Wednesday, 3 September 2014

Carepartner Wednesday--the Domain of meaning

Remember the old "B.C." comics? (You have to be a certain age to know what I'm talking about.) One of the themes had a character climbing a mountain to ask the wise man on the top about the meaning of life. Presumably, after he was told, he would go back down to live his life better. The truth was, often he went back down bemused at the answer.

This is not that.

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

"Meaning--significance; heart; hope; import; value; purpose; reflection; sacred." 1

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.

Although the specifics are different for everyone, there is a common theme. My life has meaning when I feel I am important. I can contribute. What I do, and more importantly, who I am, makes a difference.

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?

This domain is intimately connected with several others. When my domain of identity is intact, I am freed to find meaning in my life. When I am feeling connected, "Meaning is generated because of the caring relationships we have nurtured with one another." 1

I see it every day.

I am writing this at my desk on lunch hour. Outside the lounge where I sit, a man is working on the patio with a broom and a garbage can. When he is finished, my patio will be spotless, with every leaf and drooping flower picked up or picked off, and his domain of meaning will be full.

Down the hall, two ladies are returning from lunch. One has had a rough few days with anxiety, and the other is walking her to her room and chatting with her, making sure she is feeling connected and safe. Meaning.

In a few minutes, a group of ladies will come to my lounge to knit squares, which will be put together into afghans and sold to staff. The money will help with the renovations in our neighbourhood.

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, however, we will steal from them independence, and rob them of meaning.

Next week: The domain of joy. And lots of wonderful, joyful stories from our camping trip, where the average age was 91!