Wednesday, 28 March 2018

Care Partner Wednesday--Age is Just a Number

When an elder reaches a certain age, and especially when they need care and move into a retirement home or long-term-care, a difficult conversation needs to happen.

How do you want your story to end?

For some people, this is an unemotional writing of a living will, which expresses their wishes. Done, filed, don't have to think about it until the time it's needed. For most of us, however, this conversation is wrenching on so many levels. It needs to be a family dialogue, and what family enjoys a friendly fireside chat about the death of a loved one? The process of dying can be equally terrifying, and discussing the details is more than some can handle.

In our facility, we discuss levels of care.

Level one is when the resident is in their last days. Usually at this point, they have stopped eating and drinking, and the focus is on comfort care. Most times, medications are discontinued except those for pain. Nothing is treated.
Level two involves treatment for infections such as urinary tract infections or pneumonia, but those are done in-house. There is no transfer to hospital for more invasive treatment. The only exception would be a broken limb, which would be treated and then the elder would be sent home.
Level three is as above, but includes transfer to hospital for further treatment, but no CPR.
Level four includes everything, including CPR.

I have this conversation with every family when their loved one is admitted. Most need to take the paper away and think about it, talk together with the elder or reflect on wishes expressed in the past. It's not easy. I always tell them nothing is set in stone, and the levels are to give us guidance. If the day comes when they receive a call that their mother isn't doing well, they can change their minds.

"Well, you know, he's 92. He's had a good run." 

Many times, as families consider how they want their loved one's final days to look, age will be mentioned, as if life was some kind of sand in an hour glass. It does run out at some point, but a person's age should be a tiny part of considering their last days. Well-being, physical state, cognitive status, their wishes...all these are more important than their age.

One of my beloved residents was a few months short of 101. Her sweet disposition and dry sense of humour made her a favourite among all. One day, I heard her coughing, and a few days later, she was a different person. She couldn't stay awake and could barely hold her head up, she could no longer walk and needed assistance with her meals. Everything inside me screamed, "No!" My heart broke to watch her drooping head and exhausted cough.

Are you nuts? She's 100. Time to go.

But just a few days before, she was joking, chatting with her table mates and encouraging her friend to attend an activity. What did her age matter? She had quality of life.

The cough was treated, and someone sat beside her and helped with her meals. In tiny increments, we saw improvement. It was about this time her doctor came by and said to me, "Look at her. She's just fading away." I calmly pointed out to him that her head was no longer drooping and she was more alert. Inside, I was standing on my soapbox and shouting, "She's not fading away on my watch!"

Another month passed, and minuscule improvements became big changes. She walked to the dining room with her walker instead of using her wheelchair. She ate well, and was able to feed herself at least part of her meal. She was alert, and her low voice enhanced the mealtime conversations. She was back.

On Monday, she turned 101. Instead of a present of flowers or a scarf, she and I made bread together, as she had almost weekly in her apartment before she lost her sight. While it rose, she went to get her hair done, and we took it out of the oven as she and her son enjoyed lunch. As the team crowded round, we took a picture of her with the bread knife posed over the loaf. Her face glowed.

I'm fully aware that the sands in her hourglass are almost gone. This is a reprieve, not a cure. But seeing the joy in her face, I know quality of life has nothing to do with age.

p.s. I saw that doctor in the hall and pulled out my phone to show him her glowing face with the bread. I wasn't smug. No, not me.

Care Partner Wednesday--Age Is Just A Number

Wednesday, 21 March 2018

Care Partner Wednesday--What Does Respect Mean, Anyway?

Maybe it's rare these days, but I grew up with "respect your elders." I called everyone "Mrs. Smyth" and "Mrs. Ruse," and even when I grew up and these ladies invited me to use their first names, I couldn't. My mother, who passed away in my mid- twenties, seemed to sit on my shoulder and give me disapproving looks if I used given names. Even now, I find it hard.

I've been thinking about respect. There's a "hush-hush" rumour that someone important to our organization might be coming to live in my neighbourhood. Nothing's settled yet, but the possibility started my thoughts down this pathway. On the one hand, it would be my privilege to serve this person who has given so much. On the other hand, I'm aware that this situation would put us under the microscope. We'd better get it right.

Given that each resident is a valued, special member of our community, how do we show it? In the busy day-to-day of caring for them, how do we hold onto respect in the little ways that matter?
Most importantly, how do I see beneath the surface to the person they are?

Here are some ideas:

If someone isn't able to speak or respond, include them. 

I cringe when family members talk about a person when they are in the room. I make a point, when I am assisting someone with their meal, of carrying on a conversation. It took me a while to learn how to do this when there is no verbal response, but I've learned to read eyes and faces, and often I can sense the person's mood. Here's an example: "Try some quiche, Barbara. Did you know, this is my son's favourite meal? He's all grown up now, but when he was a little boy, he wanted quiche at his birthday party when all the other kids had hot dogs. Would you like some apple juice?" You have no idea how much of the conversation they are absorbing, and including them shows respect.

Remember that the person is separate from their wheelchair. 

Our new lounge is still under construction. A few minutes before lunch, our dining room is often a wild hodge-podge of tables shoved back and people sitting everywhere in chairs and wheelchairs. A music event or exercise class has ended, and we have just a few minutes to bring people to their proper tables. Add to this, those who are mobile have arrived and are looking disapprovingly at residents sitting in their spot. In order to get lunch started and prevent conflict, we have to move quickly. It's tempting to grab wheelchairs and fly around the room restoring order. However, each wheelchair contains a person, and it's important to talk to that person before you move or tip their wheelchair. Imagine if you were lying on the couch, and someone came along and shoved it without speaking to you? Respect.

Give up your need to understand.

I have conversations several times a day where I have no idea what we're talking about. Eileen, who had a responsible job where she often solved problems, comes to me to talk about something that's concerning her. She's living back in the world when she was working, and she perceives me as the boss, so she comes to tell me about a "dreadful" problem or issue. Because of her aphasia, I can only understand enough to know she's upset. So I will say something like, "Well, how about if I look into it, and we can get together later and see if we can find a solution?" She's validated and goes away happy. The issue dissipates until she comes to me with the next problem. I don't need to know what she was talking about. I heard her heart, and she felt heard and respected.

Take time to listen.

We're all busy. I'm late for a meeting, I have a report to finish, a family member needs me to contact them and the staff wants me to order supplies. At that exact moment, two residents arrive at my desk wanting to talk about a problem. Every fibre of my being wants to run to be on time for the meeting, finish the report, send the email and order the supplies. However, these are people, real people, with problems or anxieties. Even if I heard all of it five minutes ago, I need to stop and listen. Respect says, "I am listening because you matter."

Enjoy the person inside.

Sometimes, you need to laugh. My fellow advocate came to get Denise for a music program she loved. He invited her to the program, and she said she'd like to go. He began to take her down the hall, and she asked him where they were going. "To the Courtyard for the music program." "Why?" Trying to lighten the mood, he begins to dance with her wheelchair. "Because, it's a long way to Tipperary..." They disappear down the hall, and then I hear a booming, "Shuttup!" I burst into gales of laughter. I guess my friend's musical efforts weren't appreciated.

Take a big heap of patience with your morning porridge.

Not everyone you meet is sweet, gentle and kind. Is that a revelation to you? Here's another one--not every elder is, either. Some are demanding, entitled and downright mean. They are hard to serve and require more patience than you may possess. There are times when I need to leave a room, take a breath or talk to a fellow advocate before I face that elder again. However, offering the gift of patience is another form of respect.

Not every elder is worthy of respect. However, the vast majority have lived through experiences we can't imagine, made mistakes and learned from them and have wisdom they'd love to share. Even, no, especially those with dementia. Take the time, care partner, to give and receive the gift of respect.

Care Partner Wednesday--What Does Respect Mean, Anyway?

Wednesday, 14 March 2018

Care Partner Wednesday--Isolation and the Power of Community

It was the end of a hectic day at work, and interruption after crisis after demand left me feeling like I had accomplished little. In the last hour, residents were beginning to gather for dinner, and I was taking the opportunity to achieve some of my "to do" list. I was focused and, I will admit, a little driven. My job isn't about performing, but I am easily overwhelmed after a few days where the list only gets longer. I was determined to cross a few tasks off.

At the edge of my consciousness, I realize I am hearing a familiar voice. Joyce comes every day to visit her friend, Edna. They chat and sometimes play word games in the later afternoon, when Edna is up from her nap. What surprises me is that Joyce is still here. She had usually made slow progress to her own dining room by now. I looked up from my "to do" list and my heart melts.

Joyce had tucked her walker between Edna and the man beside him, who also needed assistance with his meal. While keeping the conversation rolling with all the residents at the table, she was helping both of them with their dinner. At 97, and with her own sight difficulties, Joyce has chosen to serve others in her community.

The power of community. I've seen it often, and nothing touches me more. Elders in less-than-ideal circumstances reaching out to others.

Two ladies became friends. One is blind, so the other leads the way. Her friend deals with daily anxiety, so she provides the courage.

A gathering of men meet to socialize, and decide to form a group to welcome new residents and show them around.

Community thrives among staff, too. A small group of staff gather an incredible $500. for a beloved co-worker as she heads to back to school. They know she loves to travel and won't be able to as a poor student, so this money is for a trip. Others celebrate when a baby is born and worry when a husband is sick.

Community doesn't just happen. It takes commitment to growing and nurturing relationships. We need to know each other, care about each other and be invested in the community as a whole.

I've been accused of being too positive, so I need to say at this point, it's not all butterflies and unicorns. Sometimes staff don't work as a team, or they bicker among themselves. Sometimes elders form cliques and are reluctant to let others in. Community is always a living, growing experience which takes commitment.

Community matters because the alternative is isolation.

I've seen it so often. An elder's slow decline makes it impossible to get out of their home or apartment. Their mobility is compromised or their strength is lacking. Maybe they are suffering from cognitive decline, and feel so unsure in social situations, they hide at home rather than mingling. "Home" is their comfort zone, and as lonely as they may be, they aren't willing to leave it. Sometimes the situation becomes dangerous as they try to cope. Stairs that were appropriate 30 years ago are a hazard now. The bathtub is inaccessible. We can bring in services, at a significant cost, to address some of these problems, but it still leaves them alone and lonely for long periods of the day.

Where I live, the government thinks "aging in place" is the best solution, and provides funds to make it possible. Many elders agree, as the spectre of leaving the home they have known for years is a frightening unknown. It's true that many long-term care homes don't provide the community that is so desperately needed, and many elders and their families believe this is the only solution.

But when true community touches the life of an elder, it gives birth to purpose and well-being.

"An Elder-centered community commits to creating a Human Habitat where life revolves around close and continuing contact with people of all ages and abilities, as well as plants and animals. It is these relationships that provide the young and old alike with a pathway to a life worth living."1

Care Partner Wednesday--Isolation and the Power of Community

Wednesday, 7 March 2018

Care Partner Wednesday--Finding Normal

"What we had as a couple is gone. Now it's all about coping with him and the way he acts. I still love him, but I miss normal."

I hear variations of this so often.

"My mother is gone."

"I don't recognize my brother."

"This isn't the father I knew."

"I wish...I wish...I wish..."

There's a time for grieving and missing what was, but it needs to occur away from your loved one. Write it out, find a professional to talk to, or a friend who can understand. It is a grieving process, and you need time to work through your feelings.

When you are with your loved one, you need to find normal. 

What do I mean by this? You have to take a long look at who they are today. Has dementia eroded their memories? Perhaps anxiety has stolen their joy. Is their pain being controlled? Who are they today? What is normal?

Start by listing the things you know. Here are some examples:

  • she loves music, but it has to be classical, and not too loud.
  • he likes to watch sports on TV, and his favourite team is _________.
  • he loves to be outside in good weather.
  • she loves birds and is knowledgeable about them.
  • He will always say "yes" to ice cream and "no" to a shower.
  • She gets anxious as the day progresses.
  • He likes to colour. It relaxes him.
  • She wants to sit with people she can talk to in the dining room. 
  • He doesn't say much.
The important thing here is that you list what is true today. So often, I have family tell me a significant fact about their family member, and I will pass it on to staff in the pre-transfer notes. When the person arrives a few days later, we discover that the important information we were given is no longer true.

Normal is what's true today. It may be true tomorrow, or it may not. Your loved one is changing, and the most successful care partners study them every day and look for normal.

It's imperative that care partners be able to release what is no longer normal for your loved one. Even if watching sports was something special you did together, if Dad stares blankly at the screen without comprehension or enjoyment, normal has changed. Perhaps the two of you could share important moments during a walk outside. If that doesn't work, maybe time spent with a visiting dog will bring the spark to his eyes. Finding normal is finding that activity that will bring joy.

The difficult issue with normal is that you are never sure how long it will last. A love of ice cream might be life-long, but the love of colouring might be gone in a few months. It might be gone tomorrow. Just when you settled into a pattern of doing something together, you have to start searching for a new normal.

It can be exasperating. But the care partner who doesn't cling to today's normal, and is willing to be creative and flexible, is the care partner who has delightful times of fulfillment and joy with their loved one.

Find normal. It's worth it.