Wednesday, 18 April 2018

Care Partner Wednesday--Overwhelmed

If you talk to anyone living in Southern Ontario this week, there is only one topic.

The weather.

Friday 's grey skies turned to snow Friday night, ice pellets on Saturday, freezing rain on Sunday and torrential rain on Monday. Everything was coated in ice, including my car, driveway and the roads. I remained glued to the window all weekend, but sometime Sunday I realized that this yuck wasn't ending, and I was going to have to travel in it on Monday.

My wonderful son-in-law braved the driving rain to chisel ice from my car. I two-stepped to the car and crept to the station without incident. But the train station parking lot wasn't plowed or salted, and the snow, ice, and slush were deep. The rain was merciless, and I took one perilous step after another heading from my car to the train. "Is there rationing on salt?" I muttered to myself.

The train, subway, and even the bus journeys were fine, as they were all inside. But when I stepped off the bus, the most difficult few steps ensued as I crossed the street and navigated the sloping, ice-filled driveway. Through driving rain, I took one slippery step after another. When I finally stepped in the door, my chest was heaving. I was overwhelmed.

What does overwhelmed look like for the care partner?

It's the daughter dealing with her mother's anxiety disorder who receives twenty calls a day. Fifteen of them are overnight. Nothing she does or says calms her mother down. She hears the same questions and the same worries over and over again. Sometimes, she decides she needs boundaries and tells her mother she will be shutting off the phone after a certain hour, but then she lies in bed worrying.

Overwhelmed is the wife who must make difficult decisions about her husband's care, and just when they are made, his health changes and she must make more difficult decisions.

Overwhelmed is the sibling who visits but has no clue how to relate to her sister. She doesn't know this person and can't recognize the sister she knew. When she tries to do something nice for her, something she used to love, she is met with anger. At a loss, she sits in her car and cries after every visit.

What do you do about overwhelmed?

Sometimes there's nothing you can do but push through.

If you are in the middle of a disaster, or a series of seemingly unending emergencies, it's possible to become overwhelmed quickly. Like facing into driving rain and ice, it keeps coming at you, it must be dealt with. And it hurts.

Sometimes it's not the crisis but the ongoing demands of every day. Lack of sleep, physically demanding and unrelenting care can create a kind of dull despair. One small "extra" like taxes to be completed or the need to buy Christmas presents can create waves of anguish. It's too much. It's all too much.

How do you cope with overwhelming situations?

Probably not well, but here are some tips.

1) Call a friend.  Call all your friends. Put the word out that you need help. Someone to listen, someone to help, someone to support. Overwhelmed can be overcome, but not alone. Never alone. The only way to begin to see the light is to have the love and support of friends.

2) Get rid of the unnecessary. Examine your life and see if there are commitments or duties that don't need to be on your plate. Can another family member look after them? Is there something that can be dropped completely? Any time that you free up, use it to rest.

3) Try to get away, even for half a day. It's amazing how perspective changes when we are rested.

4) Remember, it won't be like this forever. The crisis will pass and the situation will become stable. You will get used to the new normal. Things will get better. It looks like a long tunnel now, but there is an end.

If you are a friend of a care partner, watch them closely. Listen. Be there. Look for overwhelmed. Your friendship and support is an invaluable gift as they walk this journey.

Care Partner Wednesday--Overwhelmed.

Wednesday, 4 April 2018

Care Partner Wednesday--What Does Purpose Look Like?

Sometimes, it looks like a knitted square.

My knitting group is small at the moment. Just three ladies contribute, but for each of them, it's an important part of who they are.

For Janice, it curbs anxiety. As each day wanes, she struggles with anxious demons who torture her with thoughts of the night. The simple routines of getting ready for bed cause her untold anxiety. Who will help her tonight? Do they know what to do? What if they don't come? She also worries about her body. She has an itch, a sore toe, a dry mouth. Left to her own devices, her worry would spiral out of control. Although every week she needs to be persuaded to start, the knitting and visiting with her friend gives her an hour of relief from the demons.

For Laura, it's a kindness. She comes for the express purpose of spending time with Janice. Her calm, gentle demeanour  and friendly questions turn Janice away from fear, and help her consider other topics such as her adored grandsons. The ladies knit and talk, and the squares pile up.

For Margaret, it's different. She doesn't join the group, but knits a square a day in her apartment. Mostly blind, she knits by feel. She used to produce sweaters and baby clothes in complicated patterns, but she can't see to read a pattern any more. However, she can knit squares. About once a week, she sends me a neat pile of squares and pleads for more wool. Sometimes she phones me to thank me for letting her knit squares!

After weeks of this, I have a bag overflowing. Now it is my turn. I need to sew in all the ends and crotchet them together to make a beautiful afghan. In the fall, when we have our sale, the afghan will be sold to the highest bidder. This revenue can be used for equipment and special projects which are outside the budget.

Purpose. It's feeling needed, feeling I have something to contribute, and that I still matter in this world.

As care partners, we focus on care. Are our elders clean and sweet smelling and looking good? Are they mentally stimulated and given opportunities to exercise? Are there social events available to them? Are they treated with respect? Are their medications the correct ones at the dosage that will help them the most?

Is it any wonder with all these aspects of life and care to worry about, purpose gets lost?

Care partner, purpose is as important to your elder as their medication or clean clothes.  If they don't have something or someone in their life which makes them feel they are contributing, it can be a slippery slide to depression.

How do we find purpose? Obviously, it's individualized, but how about asking their help with something? "Grandpa, what kind of flooring do you think looks better? Grandma, what did you put in your famous apple pie?" Or ask their opinion about the things that really matter. "Dad, I worry about Jimmy learning to drive. How did you handle that? Mom, I've been weighing the pros and cons of this job offer. What do you think?"

Identity is a key. If you know them well, you are aware what makes their eyes sparkle.

I read today that Terry likes to fix things. I remember a few weeks ago how he looked on with interest as I tried to figure out how to remove a mop head. I need to think creatively about how I can offer him fixing projects.

Mona is almost non-verbal, but she comes alive around china tea cups. Today she and I set up a display of china in our new lounge. We read the bottom of the cups and exclaimed over how pretty they were. "My mother used to have one like this," she said, uttering the first full sentence I had heard in months.

Purpose gives an elder a reason to get up in the morning, a feeling of contributing, and celebrates their intrinsic value. It can be found anywhere.

In a mop head,

a china tea cup,

or a ball of wool.

Care Partner Wednesday--What Does Purpose Look Like?

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.


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