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