Thursday, 29 August 2013

Caregiver Wednesdays- Communication pt. 4

"Do you have any knitting patterns? I want to knit for my granddaughter, and I need to look at some patterns."

I looked at her helplessly. This lady couldn't knit any more, let alone follow a pattern. What should I say?

She was the mother of our neighbours at the time. Both our townhouses were on either side of the parkette, and we often met there while watching our children. Sarah's mother had Alzheimer's and had been deteriorating. When she could no longer live alone, Ralph and Sarah built an in law suite in the basement and had her live with them. She often accompanied them on the trips to the park. She, like my own mother, was one of those unfortunate people with early onset Alzheimer's. She might have been 60.

This was long before I had much experience with people with dementia, but miraculously, I did the right thing. "Sure, I don't have much, but I'll bring what I have out the next time I come." The next day, I came out with a fistful of pattern books, and she was delighted. She poured over them like holy grail, and eventually asked to borrow one. "No problem. Take as long as you like with it." Sarah returned it a few days later. Her mom had forgotten about it, and about her desire to knit. But for those few moments in the park, she was doing something she loved, and it gave her intense pleasure.

Isn't that what it's all about?

Communication with someone with Alzheimer's is different. Reality therapy used to be popular a few years ago. The best thing for people with dementia was to bring them back to reality. What day it is, what time, and what is really going on. Reality therapy would have said, "You can no longer follow a pattern. You don't knit any more. You have no use for a knitting pattern." The philosophy was that bringing people back to reality somehow grounded them and brought about less confusion and anxiety. The truth was, the opposite occurred.

Here are a few more communication tools:

* Don't press for an answer if it causes confusion or anxiety.
I love to give people choice, because it maintains their independence and allows them to express who they are through choosing what they like. This is no more evident in the dining room. The key is to go slowly, and break it down. "Would you like chocolate, strawberry or vanilla?" If there is no answer, I say, "Do you like chocolate?" and on we go from there. Occasionally, making a choice causes stress. Maybe they like all three, but don't know how to tell me to make a triple scoop. If I see anxiety starting, I drop it. I'll give them vanilla and try again next time.

* If you hear the same story or comment more than once (or twenty times) answer it as if it was the first time. "Am I knitting a square?" "Yes, I put the sample on your leg there." "Do I just keep knitting?" "Yes, you can follow the sample that's on your leg." "Is it supposed to be a square?" "Yes, see the sample on your leg? You can tell how big it is to be from that." "So I'm knitting a square?" "Yes, you are. You can measure it against the sample on your leg." It takes patience, but it gives the gift of respect.

*Don't grill for information. "What did you do today? What did you have for lunch?" All you are doing is putting an underline on their disease. They can't remember. Don't ask. Instead, be more creative. "I see spaghetti was on the menu at lunch. That was always your favourite." This may lead to reminiscing, or at the least, a happy memory of a plate of spaghetti! The goal is to communicate, but on their terms, not yours.

It's like learning a new language, but the list of vocabulary words and what they mean changes frequently.

Next week: more tips for meaningful communication

Wednesday, 21 August 2013

Caregiver Wednesdays- Communication pt. 3

I've learned to wait for answers.

For me, it's a sign of respect that I wait for the resident to tell me how they like their coffee. If they are struggling, I may say, "Do you like cream?" That is usually answered immediately. Then I add, "What about sugar?" This separates the answer into manageable pieces, and usually makes it possible for the person to answer for themselves. That's important.

Today, I was getting a cup of coffee for a resident while he waited to get his hair cut. (He's not great at waiting, and this was to help.) I looked him in the eye and said, "How do you like your coffee?" He opened his mouth, but before he could get the words out, both his daughter and his caregiver answered, "Cream, no sugar." I can't tell you how annoyed I was. Let him tell me!

Don't take communication away from your loved one when you know what they are trying to say. Unless it is distressing them, give them the gift of time to answer.

Here are a few more communication tips:

1) Did you know a hearing-aid, when it isn't working, is an effective ear plug? Check batteries every day, and replace them weekly. Leave the casing open at night to make the batteries last longer. Check for wax--some types get plugged easily. If you suspect a hearing aid isn't working and you've checked these other areas, immediately take it to your provider. Not being able to hear causes confusion, isolation and frustration. And there's NO communication.

2) Speak slowly, calmly, and use simple, direct statements. Don't speak as if addressing a child, but slow the speed of your sentences down. This takes a conscious effort, but is more effective in getting your message across.

3) Listen with your heart. Sometimes the words aren't the message.

4) Use concrete rather than ambiguous words.

5) Simplify your words.

6) Give one instruction at a time. "We're sorting the cutlery here. Can you put all the knives in one pile?"

7. If you hear the same story or phrase several time, act like it's the first time, every time. It is to them. Never, but a word or a look or a raised eyebrow, make fun of the person. People with Alzheimer's can be incredibly perceptive.

Remember, it's all about respect.

More next week.

Wednesday, 14 August 2013

Caregiver Wednesdays- Communication pt. 2

Every lunch, I assist two ladies with their lunch. Isabel can do a little for herself, such as take a sip of soup when it is in a mug. Sometimes she struggles to get the mug to her mouth, and my hand gently guiding it makes all the difference. She prefers salads to sandwiches, and doesn't like fish.

 Freda needs her fluids thickened and her meat minced because of a swallowing problem, and can't feed herself at all.She doesn't say much, but she communicates. At first, her diet was limited, but we have been trying new flavours and textures, and it is clear from the first mouthful what she thinks. She is the judge and jury, and I wait anxiously for the verdict. At the first mouthful of strawberry crepe with cream filling, she beamed. After a spoonful of cold melon soup, she looked troubled.

"Freda, do you like it?" Her brow furrowed, and she concentrated on the answer. After a full minute, she replied, "No!"The soup was removed. Freda had communicated.

Communication can be challenging, frustrating and incredibly rewarding.

Remembering that not everything works all the time, and what worked yesterday might not be effective today, here are some principles:

1. Body language is important. Learn to read the other person. Do you see joy, physical pain, pleasure, fear, anxiety? When you know the signals, you can communicate.

2. Touch is often helpful (although not with everyone and not all the time. Read the signals. See #1)
A light touch and a gentle, non-threatening voice can calm anxiety and assuage fear.

3. Check the environment. Often, a quiet spot without a lot of outside stimulation enhances communication. A television, music or other conversations in the room can be confusing and frustrate communication. If there is a hearing deficit as well, communication won't occur.

4, Identify yourself. "Hi, Mom, it's Brian." Never play the guessing game ("Do you know my name?) which is demoralising. Don't be offended or hurt if they don't know you, or mistake you for another family member, or even another generation.

5. Make eye contact. Don't start to speak until they can see you.

More next week.

In the meantime, think about this: "The most important thing in communication is hearing what isn't said." Paul Drucker

Monday, 12 August 2013

The small miracle of saying "Good-bye"

I hate saying "Good-bye."
I guess few love it, but I hate it with a passion.
Which is unfortunate, because my work involves a lot of good-byes.

I meet residents in the last season of their lives. The season may last surprisingly long, but inevitably, there is a time to say good-bye. And it hurts.

"Maintain a professional distance. Protect your emotions from this kind of pain." I am professional, but I'm not about distance. These incredible, interesting, special people open my heart and come inside, making me vulnerable when the time comes. The best I can do, after a time of private grieving, is to closely gather the memories of who they were and cherish them. I am always enriched when they leave, and always bereft.

Even short, temporary good-byes are difficult for me. My husband is away for the weekend, fishing in the bush with his son. I'm glad he was able to go, glad they are together and glad he is having fun. But I miss him, and will be glad when this good-bye is over.

Some good-byes change everything. When I had to say good-bye to my first husband after 30 years of marriage, I was left confused and disoriented. His death changed my status. I was a widow, and I didn't know how to be a widow. Everything about my life changed, and for a time, I spun in emotional circles, trying to figure it out.

I began thinking about good-byes because this week, I am facing another one. My supervisor is leaving to further her education in another country. This is a great thing for her, and I think she is brave to take on this huge challenge. She will be awesome. But a selfish part of me wants to stand on a chair and scream, "NOOOOOOOOO!!!!" She is incredibly smart and gifted with people and has a huge heart of compassion. She has become a friend, which is odd, because she is 34 years my junior. But there you have it. Tears flow just thinking about it.

The thing about good-byes is that they are a reminder to us. Take nothing for granted. Every relationship is a gift to be cherished. Open your heart and give yourself today.

Tomorrow you may have to say, "Good-bye."

Thursday, 1 August 2013

The small miracle of music

I've never been a music person.

I can't sing, for one thing. And although there are a few songs that move me to tears or make my heart soar, I seldom listen to music. I never think of it.

I've seen what music can do, however, and it awes me.

Music reaches into hearts and touches brains muddled by disease. It reaches to the soul and ministers. It brings memories that were long hidden, to the surface where they can be examined and enjoyed. It lightens the spirit. It makes us laugh. It makes us dance.

Today, we had a sing-a-long. We have many sing-a-longs, some more successful than others, but today was magic. There were small miracles everywhere.

Marie* got out of bed for the first time in a week. She has multiple physical issues, and has been listed as palliative more than once. Today she sat up in her wheelchair and sang for an hour. After it was over, she said, "Those songs bring back memories. Memories I can't remember on my own. The songs bring them back, and I can spend some time with them."

Thomas gets angry and shouts a lot. He's been known to throw things. He sat quietly and sang with a staff member.

Lottie is often depressed, but she was laughing.

Donna used to play the piano. With a grin on her face, she moved her fingers over an imaginary keyboard in time to the music.

Victoria, who's dementia is profound, smiled and sang with the others.

Millie danced through every song, waving her arms and encouraging others to participate.

It was a day of miracles.
Music and small miracles.

*all the names have been changed