Wednesday, 21 August 2019

Care Partner Wednesday--Three Practical Reasons Which Inspire Me To Deny Choice

Offering choice to elders presents many problems. Is it worth it? You decide.

Choice is expensive

In our dining room at lunch there are two choices of soup, several options of main course, including one bland and one vegetarian and a whole cart full of desserts. Don't like the soup options? We can make you some of the clear chicken broth we always have on hand. None of the main entrees appeal to you? How about one of many varieties of sandwiches? Or perhaps we could make you an omelet? Cheese or plain? Nothing on the dessert cart looks good? How about a scoop of one of the several kinds of ice cream in the freezer?

I realize we are unusual and there wouldn't be all those options for those caring for someone at home, but the bottom line remains--choice is expensive. Even to offer a few choices in the comfort of your home, you need to have cans of soup available, a variety of sandwich fixings and perhaps some frozen entrees. It costs to offer choice and I don't mean just money. It takes creativity, thought and planning, too. What care partner has that kind of time?

Choice takes time

Have you ever set out a few sets of clothes and waited for your loved one to choose? Or asked them if they would like this or that activity? Sometimes the effort can be painstaking and a little impatient man is jumping up and down in your head. Or they say they don't care until you make the choice and it becomes evident a few minutes later they did care and you made the wrong choice. Or have you allowed them to choose independence over your help and watched as they tried to button their shirt or put on a sweater?
Choice can take gobs and heaps of time.

Choice sometimes isn't safe

Myrtle is confined to a wheelchair which she propels herself. Because gardens nourish her soul, she wheels herself out the door and tries to make her way to a community garden down the road. All she wants to do is sit there and take in the beauty, but the pavement is uneven and a few times she's gotten stuck. She hasn't tumbled over yet, but it's just a matter of time. Always independent and a loner, Myrtle doesn't want company on her garden tours. But all kinds of hazards await her.

John has dementia, and sometimes goes out the door looking for his childhood home. He's even gotten in a cab and given the driver the street address. Of course, his care partner feels terror at the hazards of this, so puts locks and alarms on the door. John began banging on the door when it won't open for him or sometimes sitting in his easy chair, staring blankly at it. When his care partner takes him out, he's uncooperative, so it doesn't happen often.

It seems obvious, doesn't it? Offering choice is a slippery slope which makes a care partner's life full of anxiety. Why would anyone do it?

Choice is a basic human right

That's why.

I'm on vacation right now and when I go home on Saturday I know my fridge contains a container of Greek yogurt and some pickles. No part of me will want to hop in the car and get groceries but having choice for breakfast the next morning will force me to get moving. Or maybe I'll be so exhausted I'll have Greek yogurt for breakfast and pick up groceries after church.

I have a choice.

Everything I do in my day allows me choice. Sometimes I make bad choices and need to live with the results, but they are my choices. I have the freedom to make them.

Unless I'm elderly enough to need help. Or have dementia.


I hope this tongue-in-cheek look at choice helps you realize how important it remains for everyone at every stage in life. Choice should never be optional. The only option remains the creative ways we offer it.

Our cupboards and fridges can be full of options. Don't buy ten cans of a favourite soup because favourites change and you may be left with something no one will eat. Buy a healthy variety and offer it daily. Activites like dressing and care will take as much time as they take because the gift of independence takes time. Look for creative ways to get Myrtle to the garden and John for outings that satisfy his needs. Get help if needed, but make it happen.

Choice isn't voluntary. It must be an option for all.


Care Partner Wednesday--Three Practical Reasons Which Inspire Me To Deny Choice

Wednesday, 14 August 2019

Care Partner Wednesday--Powerless Elders Devastated by Lack of Choice

Do you ever feel like life's out of control? Situations are spiralling and you have no choice, or perhaps no good choice?

One morning, I faced time pressure to get out the door and make the train. My inner clock ticked and I knew as I blew my hair dry that less than 10 minutes remained. At that moment, my puppy, noticing the enticing dangling of the toilet paper on the roll, grabbed it in his mouth and ran. In a few seconds, my living room and kitchen were wrapped like a mummy. With a frustrated huff, I retrieved as much as I could, threw out the rest and returned to my hair.

He did it again.

He responds well to loud noises, and normally I would clap but with my blow dryer in one hand and my brush in the other, I had no free hands, so I brought the brush down hard on the sink. To my horror, a large portion of the corner of the sink broke off and shattered into a million pieces.

My choices at that point were, replace it or live with "ugly sink" for a period of time. Sink replacement wasn't in the budget, at least not until the day a few months later when a flood on the floor indicated a pipe had broken. I decided I could live with "ugly sink" but I couldn't function with no sink.

No choice.

Then there was the sewer backup in my basement. After months of negotiations, the insurance company hired a contractor and the work began. And abruptly ended. With dust and materials scattered over my basement, I phoned to find out the holdup.

Mould. Four tiny spots, which weren't anywhere near the flooding, held me captive. Until I did an expensive cleanup and environmental assessment, nothing more would happen in my basement.

No choice. It feels like tight jeans. Restrictive, uncomfortable and kind of bleak. It rankled me and made me angry. I wanted to grab a government official by the lapels and shake them.

Is this how our elders feel? Mobility changes, care needs change, housing decisions are made for them and their independence is stripped away. Some watch helplessly and others look for a set of lapels.

We who provide care are such loving, helpful people. We want the best for our loved ones. But sometimes, we strip them of choices in trying to help. We make decisions which, given time and opportunity, they could make.

Honouring elder's choices is the essence of person-directed care.

Care Partner Wednesday--Powerless Elders Devastated by Lack of Choice

Sunday, 11 August 2019

The Amazing Small Miracle of Awe-Inspiring People

The thought never occured to me to sponsor a fund raiser.

But God had other plans.

In the two years since I'd last visited my niece, Jenn, she and her family had walked a perilous journey. She'd begun her course to take Early Childhood Educator, Level 2, but almost immediately experienced disturbing symptoms. While continuing her classes and her work at a local daycare, this mother of four also found time for multiple doctor's appointments. For many months, the doctors were stymied, and during that time, her symptoms worsened. Months later, the diagnosis of an aggressive form of Parkinson's Disease or possibly Multiple Systems Atrophy set the course for the future. Her legs often failed and the resulting falls lead to painful bruises and cuts. Through the tremors, the freezing and  other difficult symptoms, she soldiered on, completing her course and graduating on her 45th birthday. Jenn calls herself a Ninja, and so she is.

As I sat across the table from her, I saw so many Jenns. There were hints of the old Jenn with the great sense of humour and the indominable spirit. I hugged her and wanted to hold her tight and somehow make it better, but of course I couldn't. I saw the Jenn with crooked glasses from multiple falls, the tremors she tried to still for our picture, the uncontrolled movements and a frailty I'd never seen before. We chatted about life, family and her disease, and she mentioned how she'd love to have a three-wheeled bike that she could ride without the fear of falling. This former marathon runner could no longer safely go for a walk, but this kind of a bike would make it possible to get out.

A bike. Hmmmm.

Something about this struck me, and without the least idea how, I knew I wanted to get her that bike.

I didn't have the money. When I returned home, I stood in my living room and looked around. What could I sell? It was then I remembered the patio table and chairs sitting in my garage. That would be a good start.

My friend helped me pull them out and I hosed them down. Dragging them into the driveway, I staged them and took pictures. Facebook Marketplace and Kijiji would certainly give me enough exposure to sell them. Excitement mounted.

At the last minute, I thought I'd send out a group email to friends and neighbours, just in case anyone wanted to purchase them. It would be easier to sell to a friend. I mentioned my price remained firm because the money would go toward the bike project. That's when God stepped in.

One of my friends replied, "IThe table's too big for me, but why don't we all pitch in and get the bike for her?" This response astounded me, but I felt a little embarrassed. I didn't want my friends to think I meant to ask for money. But before I could reply, money began arriving.

Email transfer after email transfer. People arrived at my door and stopped me in church. I couldn't hold back my tears or my excitement. This was happening.

I listed the table and chairs, and calls began for those, too.

I began talking to one of Jenn's daughters and my nephew, and together we exulted over this miracle. Within five days, the table and chair sold and the rest of the money sat in the account. I transfered it to my nephew, who took over the purchasing and assembling.

Two weeks after the day I looked around my living room for things to sell, Jenn received her bike at a family dinner. Totally astounded, her happy tears were testimony to how God brought this together.

The card read, "Dear Jenn, Years ago you ran a marathon in honour of Bill. This is me running for you." The card also contained the names of the 13 people who came together to be part of the miracle.

 Jenn needs more miracles. Cassandra, one of her daughters, has started a GoFundMe to raise money for an indoor bike (Manitoba's winters are long and cold) and a special walker. The financial burden of the family, as well as caregiver duties, have fallen to her husband, David. He, too, is a Ninja, but the burden is heavy.

Can you help? If you can, in any amount, click on the link below and give. If not, I totally understand. I'm having that kind of a week, too. But could you share the GoFundMe to your Facebook page so others can see? The more people who view, the more may want to be a part of the miracle. If you don't know how, I will post it on my page and you can share it from there.

We love you, Jenn.

Jenn's MSA/Parkinsonism Journey

The Amazing Small Miracle of Awe-Inspiring People

Wednesday, 7 August 2019

Care Partner Wednesday--The Agony and Inspiration of Elders Losing Independence

What I learned about me

The day my car died, I learned an important lesson about myself. And about the elders I serve. In fact, about life in general.

My car began to reach that unfortunate stage where it was costing me money. You've all been there. You pay for "one last repair" and make the optimistic statement, "It will last one more year." You don't have anything saved, but this next year you'll set aside money every pay, and next year you can purchase a new vehicle. Optimism prevails.

And crashes. Before your next pay, something major and expensive goes wrong, and you read the writing on the wall. You need a new vehicle.

I experienced this a week before vacation a few years ago. I wasn't taking my car when travelling,  but I had a list of errands before going and no way to accomplish them. The dog needed kibbles. I didn't have enough shorts to last a week. I had to get a few special food items. Everywhere I turned, I banged into the frustration of not having my car. Or my independence.

That's when I learned I'm more independent than I thought. My anxiety climbed with each errand that required strategy, organization and begging favours. Even though it was only for a few weeks, it seriously annoyed me.

What I learned about the loss of independence

Then I thought of the residents I serve. Their lack of independence often starts with the loss of the ability to drive, but not for a few weeks--permanently. As they age their losses are compiled. Sight. Hearing. Mobility. Cognitive function. Toileting. I'm struck with the grace and patience with which they face each new challenge.

I remember a special resident who was blind. She saw only vague shadows and followed her sighted friend to activities. She sometimes stated in the most matter-of-fact way, "I can't see" but she never complained. Her sense of humour was intact, and when I'd compliment her on her way back from the hairdresser, she'd chuckle and say, "I'll take your word for it."

When I grow up, I want to be her, facing losses and disabilities with grace and humour, and never complaining.

Remind me I said this.

What we can all learn

I have chronic arthritis, and it has surprises for me every day. Today I might feel a stinging in my right knee, and tomorrow my right shoulder protests. My left hip might cause me to hobble, or maybe my ankle stabs me with a hot poker as I commute to work. My pace is often slowed by these tribulations. As I deliberately traverse the many stairs, I hear small exclamations of disgust behind me. Some rush around and that's fine. It's the ones who stay behind and make their presence known with frustrated sighs who get to me. I have many speeches for them in my head.

Slow down. As a care partner, look and listen to your loved one, and learn. Their pace is different, their challenges many.

But if you watch and listen, you may learn about grace.

Care Partner Wednesday--The Agony and Inspiration of Elders Losing Independence

Credits: photo of red Saturn ion