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.


Wednesday, 28 February 2018

Care Partner Wednesday--The Tricky Business of Self-Care

Why is it so hard to look after ourselves?

We all know we should. We can hear our mother's voices expounding the litany of advice we loved to ignore. "Eat your vegetables. Dress warmly when you go out in the winter. Get enough sleep. Don't eat junk food. Exercise." And if our mothers didn't tell us, advertising, social media, and a hundred other voices will. We know all these messages are important. We know we should, and we feel better when we do.

So why don't we?

The question becomes less rhetorical for a group of care partners. I recently asked several wives who are caring for their husbands, "Why do we even talk about self-care? Shouldn't it be obvious?"

Their answers made a lot of sense. "It is obvious. But it's not just the time that it takes to care for a loved one, because even when they are being cared for by others, I still struggle with looking after myself. That's because my loved one is in my head 24/7. When I am not with them, I am thinking about them. In the night I wake and wonder if they are sleeping or wandering. During the day, I need to pay the bills and get the taxes done and all the other tasks that used to be for both of us. Sometimes when I do something just for me, I feel guilty, because I have left them alone. It's like I need permission to care for myself."*

I get that. A wise person once said to me, "Ann, if you were half as kind to yourself as you are to others, your life would be so much better." So, yeah. I get it.

Why do care partners experience stress? This may seem like an obvious question, but there is more than one answer.

  • Because we care. Even if our loved one isn't a spouse or a close family member, we care. That's why they invade our brains in the middle of the night.
  • Because being a care partner matters. Doing it right matters.
  • We were told to get our work done and then have fun. Except the work is never finished, so the fun seldom happens.
  • Because we care, and we want to do a good job, we often aren't good at setting boundaries. We may even feel that a boundary is wrong.
So here's the bottom line. 

Are you listening?

This is important. Crucial, even.

Look after yourself or you won't be there to look after your loved one.

"A study of family caregivers found that those who experience care-giving related stress have a 63% higher mortality rate than non-caregivers of the same age." 1

It's a scary statistic. As a care partner, it's essential that you find ways to cope with your stress and look after yourself, or you will die first.

Take this as your permission. Take the time to cook a healthy meal, go to a concert or out with friends, take a vacation, read a book. Each day, do something that gives you peace and nourishes you. Plan days away, vacations, nights out.

And when the voice in your head or the voice of your loved one or any voice makes you feel guilty, remind yourself of the words of that wise person I quoted--"Be half as kind to yourself as you are to others."

*a compilation of 30 minutes of conversation.

Care Partner Wednesday--The Tricky Business of Self-Care


Wednesday, 14 February 2018

Care Partner Wednesday--Choice is Hard

How is this day unlike any other day?

Those famous words were applicable to us as we celebrated Shrove Tuesday in our neighbourhood. The menu at lunch was, of course, pancakes, with sausage, bacon, peach and/or strawberry sauce and maple syrup. Resident's eyes widened as this amazing plateful of goodies was brought to them. If, for some reason, that didn't appeal to them, we had an assortment of sandwiches, but for the most part, that was the menu.

There wasn't a lot of choice.

As the meal progressed and I was loading the dishwasher, I had a revelation.

Choice is hard.

I realized that serving residents when the choices were limited was quicker. It used less dishes and took less time. Our normal lunch menu consists of two kinds of soup, four entrees (one vegetarian, one bland, two or sometimes three salads) and a whole cart full of assorted desserts.  You don't fancy the soup options? We always have clear chicken broth. Don't like any of the entree choices? We can give you one of five different kinds of sandwiches. Nothing on the dessert cart appeals to you? Let's break out the ice cream. We are kings of choice in the dining room.

Choice extends to so many areas. This morning, our first customer for breakfast was at her place by 6:30. She had a cup of coffee while she waited for me to cook the waffles for Valentine's breakfast. The bulk of the crowd came between 8:00-9:00, but our last customer wandered in at almost 11:00. There is choice about when you get up in the morning.

Choice extends to every other part of a resident's day. What they wear, how they like their days to run, whether they like to attend activities or crawl back into bed between meals. Residents choose whether they would like a shower in the morning or the evening, and a few who absolutely hate showers, have a thorough bed bath. I have a resident who doesn't say much, but generally likes to be in her room, looking out the window between meals. The other day she was sitting in the dining area, and I asked her if she'd like me to take her to her room. To my surprise, she said, "No." She was enjoying watching the bustle around the kitchen. Choices can change.

The thing with choice is, it's inconvenient and expensive. You can bet that, with this kind of morning flexibility our kitchen is cleaned up for a millisecond before it's time to start lunch. Offering all those choices obviously costs more, and with thirty residents each keeping their own schedules, the logistics are enormous.

Why offer so much choice?

Because choice is essential to our person-hood. Taking away our choices sends a message that who we are is less important than the schedule or the rules.

The Eden Alternative identifies autonomy--choice--as one of the Seven Domains of Well-Being. "Simply put, to be autonomous is to be one's own person, to be respected for one's ability to decide for one's self, control one's life and absorb the cost of one's own choices. Lacking autonomy is a condition which allows or invites sympathy, pity or invasive paternalism."1

There are always choices. It just depends on who is making them.

Because it is easier, cheaper and less confusing, many care partners and most institutions decide to make the choices. It's easier if everyone gets up at 7:00 so that breakfast can be between 8:00-9:00. It's safer if I choose whether you can go outside or not, because I'm more equipped to make that choice. It's faster if I dress you in whatever my hand grabs from the wardrobe because you take a long time to decide.

And the person, who may be dealing with cognitive and physical changes and losses of all kinds, begins to die inside. The message is clear. You don't matter. What matters to you, however small, doesn't matter. Either their eyes glass over and they cease to care, or they fight. And if they fight, we may drug them.

Choice is hard. But it's the very essence of all we believe in. You are a person of value, and therefore you have choice. I will honour you as I honour your choices.

Care Partner Wednesday--Choice is Hard


Wednesday, 7 February 2018

Care Partner Wednesday--Hug A Care Partner Today

No, do more than hug.

Give them the gift of your time.

Today began with falling snow and baking muffins and joy. Somewhere around noon, it all fell apart.
One of my residents was unresponsive and I worried that I was seeing stroke symptoms. Another with serious heart issues was unwell. We were trying to serve lunch to 30 people and the nurse was scurrying between the two men while we watched, concerned.

Three attempts to help a new resident get phone service failed because he didn't know his account number. (Really? Does anyone know their phone company account number off the top of their head, let alone a 92 year-old man?) A good hour of my day was spent on those three attempts, which would have been fine if it had worked, but now that task is on tomorrow's list.

I've worked with people with dementia for years, and usually can talk my way out of most situations, but today, everyone got mad at me. One man looked at me with utter disgust when I tried to dissuade him from going out on a cold, snowy day, and told me exactly how much brain power he felt I possessed. Another man decided to play a drum solo with the cutlery on one of the tables set for dinner, and didn't appreciate me stopping him. A lady with whom I have a close, loving relationship was furious with me because she'd been on a trip and was tired and she just wanted to get out of this airport.

And my phone is broken. How is that relevant? I didn't realize how often I garnered support from the other advocates through texting. Sometimes it's sharing a funny experience, sometimes it's information, and often it's needing a listening ear. Without my phone, I feel totally isolated.

But--now I am home. It's quiet. My puppy is snuggled up against me and my happy lamp is on and no one is demanding or acting angry or uncooperative. I can recharge my batteries for another day.

The full time care partner seldom has that privilege. They don't get to leave, they seldom get breaks, and some days, the demand goes on and on.

So here is my message to you. Do you know anyone who is caring for a loved on in their home? Don't ever say, "Call me if you need help." They won't. Instead, spend time with them. Discover what would be the most helpful. Maybe you can develop a relationship with their loved one, and  spend time each week relieving the care partner. Perhaps there is someone else who can look after things at home, and you can have a regular lunch date together. Maybe a phone call once a week would help. Perhaps a home baked meal and your company to share it on a regular basis would fit the bill.

Whatever it is, commit yourself to reaching out and giving of yourself.

Hug a care partner today. Then do more.

Care Partner Wednesday--Hug A Care Partner Today

Wednesday, 31 January 2018

Care Partner Wednesday--"How Are You Doing?"

"Nobody's asked me how I'm doing."

The poignant words lingered in my mind long after the evening ended. I spoke to a group at church about self-care in ministry, but because I used examples from my life and work, the topic of elders in long-term care naturally rose to the surface. A lovely lady, an elder herself, told how she and her husband used to visit her sister-in-law every week in her care home. For years this was their life each week, and they came to know staff and other residents. This past Christmas, their loved one died at 94.

"People say, 'She lived a good life' or 'she had a long, full life and she was ready.' Is that supposed to make me feel better? I know those things, but she's still gone, and I miss her. Don't I get to grieve because she was old?"

There is no expiry date on grief.

I sat with a family member whose mother was dying. I held her mom's hand and talked with her. We shared stories of her mom, who was a character in every sense of the word. At one point, she teared up, and then chastised herself. Her mother had reached the incredible age of 105!

"It's silly to be upset."

No, it isn't. Your mother is still your mother, and you have all those years of history, funny stories and love. A relationship is coming to an end. There's a tearing away and jagged edges. Things will never be the same again. You need to grieve.

I confess: I've said those phrases. I never will again. Instead, I will focus on the one left behind.

"Tell me one of your favourite stories about your mother.. What were some of the things you did together when you were younger? Did she have wise sayings that impacted you?"

And most importantly--

"How are you doing?"

Care Partner Wednesday--"How Are You Doing?"

Wednesday, 24 January 2018

Care Partner Wednesday--Understanding Dementia pt. 2

Words aren't friends for George any more. He used to give lectures, make high-level phone calls, and joke with co-workers in his job as president of a company. Now words swirl in his head, and he can seldom catch the right one. His tongue stumbles and his brow furrows as he tries to tell me what he wants for breakfast.

Language is one of the effects that Alzheimer's and other dementias can have on the brain. People who have suffered from strokes often struggle with expressing themselves as well. We've all had moments when a word escapes us, and we've asked someone to "Pass the do-dad." This isn't that.

"Aphasia is a brain or neurological disorder that affects a person's ability to communicate."1 It can affect not only speech, but comprehension and the ability to read.

Expressive aphasia is what George experiences. The words are just out of reach, and he struggles to find the right one. He knows what he wants to say, and there are times when, miraculously, the words appear, but always after a struggle. And most times, they don't.

Apraxia is the inability to understand a verbal command and follow instructions. "Could you please turn on the light?" The person may or may not know what the light is, but not be able to comprehend how to turn it on, or even what that means.

Motor aphasia is seen most often after a stroke, and is the inability to make the mouth, tongue and lips move properly in order to form words. There are times when therapy can be helpful for people with motor aphasia.

Communication is essential. How do care partners find a way?

1. Relationship comes first. My first task with George was to get to know him, and help him to realize that I was a person who could be trusted. I also got to know his family because they could tell me things George couldn't. George also warmed up to me as he saw his wife and children interacting with me. If you are a family care partner, you already have the advantage of relationship.

2. Remember that communication is more than words. Gestures, facial expression, touch where appropriate, and tone of voice all play a part. Use your whole arsenal to communicate.

3. Relax. It's frustrating for both of you, but getting tense or angry won't help. People with expressive aphasia are more subject to depression and anger because they know what they want to say but can't find the words. You can help by keeping the tone light.

4. Maintain a sense of humour. Laughter can diffuse the tension, as long as it's not perceived to be directed at your loved one.

5. Be patient. One of the most difficult issues for a care partner is knowing when to help by supplying a word. There are times when this is appropriate, times when you will get the word wrong and make it worse, and times when the right thing to do is just wait. Practice helps, but you will never be right all the time. Do your best.

Social Masks

Have you ever wondered what it would be like if everything you thought appeared in a little bubble above your head for all to read?

Another issue many people with dementia struggle with is the removal of the filter that most of us have to keep our thoughts in our head and not coming out of our mouths. It can cause all kinds of embarrassment for a care partner.

I remember a resident who lived her life as a minister's wife. Her husband was large and domineering, and I imagine her thought life was colourful, but as a good minister's wife, she kept it all inside. She developed dementia, and after he passed away, her filter disappeared as well. Her favourite activity was to sit in a small alcove area and make comments about those who walked by. I   sometimes grinned, thinking that all the repressed thoughts over the years were finally finding expression. One day, a large family member walked by, and she exclaimed in a loud voice, "Well, that's a big man! Will you look at the belly on him?" The expression on the man's face was priceless.

This is another situation where a sense of humour is indispensable. It doesn't do any good to reprimand your loved one because with the lack of filter comes lack of comprehension. They have no idea they've said or done anything wrong and if you confront them, they will insist you are wrong. There may be times when a discreet conversation with the other person will help, but for the most part, try to see the humour and move on.

As a care partner, it can sometimes be tempting to consider all these changes and despair.

"He's not the man I married."

"She's not the wife I knew any more."

"I don't recognize my mother."

We are told over and over that dementia is a tragedy that steals the best part of our loved ones away. Don't fall for this lie. The disease will progress, and there will be changes, but they are just that--
changes. You aren't the same person in most ways as you were in your twenties, are you? If you are over fifty, you probably can't and don't want to do most of the things important to you then. You changed. People change. With dementia, some of the changes are accelerated and more challenging, but the person inside is still there. They haven't been stolen away, as one misleading poem circulating on Facebook says.

 Celebrate your loved one. Celebrate who they are today, and every day you have with them.


CLICK TO TWEETCare Partner Wednesday--Understanding Dementia--pt. 2