Wednesday, 29 May 2019

Care Partner Wednesday--Warning: Care Partner Guilt Can Destroy You

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I grabbed the buzzing phone when I saw the words Credit Valley Hospital. The nurse explained my seriously ill husband rode in an ambulance heading to another hospital in the city which could better deal with his failing heart. My bus headed in the opposite direction and I realized I couldn’t visit him tonight. I would go home early, eat something other than a dry sandwich and sleep. Relief washed over me, immediately followed by crippling guilt. What kind of a wife was I?

Like the tiny worm buried deep within the apple, guilt can hide. On the surface, we cope with crushing stress and look like heroes without capes to those around us. Not until the smell of rotten apples permeates do we realize guilt has consumed us and rendered us useless.

Guilt speaks many languages.

The language of your loved one. You never come to see me. (You visited two days ago.)
The language of the doctor. You need to make sure she takes her medication on time. (How do you persuade her if she refuses?)
The language of yourself. Nothing I do is right or enough or(fill in the blank.)

Guilt speaks most harshly to the person listening.

Elaine K. Sanchez tells the poignant story of Madelyn, a care partner consumed with guilt on her wedding anniversary.

Guilt seldom produces a positive result.  
So what do you do with it?

Ask yourself the questions.
1.    Did I intentionally cause harm?
2.    Is the feeling self-imposed or is it being imposed by someone else?
3.    Is there anything I can do to change the situation?
4.    Is my guilt benefitting my care receiver?
5.    How is guilt serving me?

Just like the worm in the apple, guilt hides and completes its insidious work in secret. It may boil up in anger, sink into depression or compel you to hide in shame. But if that apple is cut open before the worm has a chance to destroy it, the worm dies. Exposure causes it to whither.

Look at those guilty feelings in the light of day. Do you have anything to apologize for? Do it immediately. Are my expectations of myself unrealistic? Are my perfectionist tendencies getting in the way of whats reasonable? 

Promise yourself you will be kinder to you today.


Wednesday, 15 May 2019

Care Partner Wednesday--How to Accept Care From Elders in 3 Easy Steps

Jenny was in a bad way. Her body stiffened as a spasm overtook her. Her legs flailed straight out, unable to bend at the knee. Her hands clutched the arms of her wheelchair with white-knuckled strength. Eyes bugging out, whatever was happening to her body obviously terrified her.

With slow, measured steps, Alice approached her. Usually totally absorbed in herself and the world of her anxieties, Alice reached out and rubbed Jenny's arm. "It's okay, Jenny. It's going to be okay. Just relax." Alice stood and rubbed for several minutes until Jenny's board-stiff body slumped into the chair.

Caring reaches both ways. It goes from elder to elder, and from elder to care partner. Each time it's a precious gift, but like any gift, it must be recognized, acknowledged and received.

Many times, our role as care partner grows to such enormous proportions, it overtakes all other roles, and we miss the gift of reciprocal care. Our actions are all about care, our thoughts are anticipating the next need and our emotions are strained. I, personally, need to stop several times a day and recognize when a gift is offered to me.

Bonnie is often anxious and this manifests in calling out. It's disturbing to other residents and staff, and Bonnie isn't too popular among her peers in the neighbourhood. Often I spent time with her, trying to distract her and bring her to a calmer place. That's me giving care, but in the midst of these times, I've received as well. Bonnie loves clothes and jewelry, and will often remark on mine. Suddenly, we're not care partner and elder, but two women discussing fashion. I leave her room smiling and feeling good about how I look that day. It's at this point I need to pause and recognize the gift that Bonnie has given me.

For some care partners, thinking of their elder caring for them is difficult. This is understandable, isn't it? Care is what they do, sometimes with few breaks. Their entire focus is care, giving and planning the next move. The next meal, the next bath, the next trip to the doctor's office. It's a radical thought to be cared for by an elder.

But it's oh, so lovely! When one of my elders worries about my trip home on a stormy night and offers to share her bed with me, when I laugh with another, when we sit outside and talk about the life we see going by, I am enriched. These are the times I need to acknowledge, and let the elder know how they have blessed my life. "Thank you for spending this time with me. I had so much fun." As we mentioned last week, elders feel purpose when they know they have contributed.

Finally, it's important to receive. Imagine you go to a friend with a beautifully wrapped gift and present it to them, and they say, "You shouldn't have done that." and push it away. Imagine if they then start doing something for you? How would it make you feel? Incompetent? Unworthy? Useless? Keep your eyes open and your antenna poised,  looking for the gifts you receive from your elder.

You will find them everywhere.

Care Partner Wednesday--When You Care For Me

Wednesday, 8 May 2019

Care Partner Wednesday--Finding A Sense of Purpose

Think of these scenarios:

George was a great husband and father. He took his boys to innumerable hockey practices and provided for his family. He and his wife went out dancing and the family enjoyed many vacations together. He was a great dad and husband. Now George is elderly. He describes the working of his mind as being "cloudy." He has dementia, is incontinent and spends most of his life in a wheelchair. His gravelly voice is difficult to understand. How do you help George find purpose?

Flo was a strong, independent woman all her life. She gave her life serving others, but on her terms. Now her body betrays her every day. She can no longer walk and lives in chronic pain. It galls her every time she has to ask for help, and this happens several times a day. She is sinking into depression and doesn't understand why God doesn't take her home. Where is the purpose for Flo?

In their marriage, Pat was the strong one. A woman who spent her life being in charge, she was a care partner for her husband for over a year as dementia changed the man she knew. Brave and capable, she faced the inevitable on the day when she had to move him to long-term care. She'd known this day was coming for several years, and she felt ready. What she wasn't ready for, though, was to find him totally settled and happy in his new room in a couple of weeks. He seemed to enjoy the freedom of being on his own and it shook everything she knew about their marriage. Pat no longer understood her role and floundered as she looked for purpose. How can we help Pat find her way?

Purpose involves helping your loved one find what makes them feel valued. 

As care partners, helping your loved one find their purpose might be the most important journey you take together.

Here's what purpose isn't:

1. Purpose isn't busy work. I remember a person who ran activities and felt that people with dementia would find purpose in folding towels. She brought them an armload and demonstrated how to fold them. When she came back later, she thanked them for the fine work they'd done and took the towels in another room. There she shook them out and returned with "more towels to fold." That isn't purpose.

2. Purpose isn't simply to pass the time. An activity which excites one resident may be just filling in the hours for another. "I'll go because I have nothing better to do." That's not purpose.

3. Purpose is not entertainment or even socializing. These are fun and enriching, but not purpose.

Purpose is both individual and elusive. It involves knowing the person well but also understanding that the activity which was important to them a few years ago may not make life purposeful now. We grow. We change.

Here are some statements which are useful in exploring purpose with an elder.

"I really enjoyed it when we______________. How did you feel about it?" (watch for body language.)

"I need to ask your opinion about______________."

"I learned so much from you when we talked about__________."

"Can we go for a walk together? I could really use some time with a friend today."

"Would you be able to help me with ____________?"

It may be that your elder finds their purpose on their own. I see it every day.

  • One lady at a table for four looks out for the others. She has aphasia and can't express herself well, but with gestures and a few words, she indicates that she's worried that one of her tablemates isn't eating. If she feels she needs help, she stands by her shoulder until someone notices there is a problem. She cares about her friend and looks out for her.
  • Another resident who raised a family and is comfortable in the kitchen bustles in and asks for a job. One day she washes all the teacups, another she sweeps the floor. 
  • A lady came to a flower arranging program. She didn't often leave her room, so this was huge. Another resident began to help her find her way, suggesting what flower to choose and where to put them. After a few minutes, they were both engrossed in the project.
  • An entertainer came to play some music, and a resident hosted the event, getting him the specific chair he wanted, some water, and bringing people to the event.
  • Two ladies sat beside each other at a tea party, clasping hands in companionable silence.
Elderhood isn't a time to lay on the bed and wait for the end. Each elder has something to offer,

A sense of purpose.


Wednesday, 1 May 2019

Care Partner Wednesday--Have We Got Ageing Wrong?

She's poised on the high bar, her toes pointed, She moves her body gracefully and slowly unfolds to stand on the narrow piece of wood. Walking its length, she bends, grabs the bar and swings her body to the ground. Her white hair glistens as she lands.

Wait, what? That's right, this gymnast is 82 years old. We look on in stunned awe and applaud her efforts. It's the same with the 88-year-old track star racing toward her goal, her face a mass of concentration as she presses for the finish line. Or the man in his 90s who still runs marathons.

You’ve seen it before. A woman who graduates from university in her 80s. Someone who is still working as a nurse late in life. I live in a community where the mayor ran and won every election until she retired at 93. These are the elders we revere as shining examples. We shake our heads in wonder. They are amazing. How do they do it?

Dr. Bill Thomas, the founder of The Eden Alternative, poses an interesting question.

What if almost everything we believe about ageing is wrong?

As much as these elders deserve our respect, Dr. Thomas makes an interesting point.

“Older people have standing in American (or Canadian) society only to the extent that they can do the things that young people do. And what happens to them if they somehow can’t still do what young people do? They disappear. Or more accurately, they are disappeared.” (brackets mine)

From the day I began working in this industry, I’ve heard phrases similar to “Ageing isn’t for sissies.” The implication is that when you become a part of this exclusive club, you’d better be ready for a painful journey, where all the joy of life is gone and each day is worse than the one before. The phrase is usually said to me with a wry smile and a squaring of the shoulders that implies the speaker isn't a sissy, and is somehow struggling triumphantly through this difficult time in their lives.

So I ask with Dr. Thomas, do we have it all wrong?

Reflecting on my life, I can think of many seasons that were not for sissies. Frightening, difficult times when I wondered how I could make it until tomorrow. I can also recall times of joy and laughter, and I have incredible memories of triumphs and exciting experiences. That’s life. At no time do we sail forth on a crystal sea—at least, not for long. 

Dr. Thomas talks about the seasons of life, and suggests there is a fourth. We know childhood, adolescence and adulthood. He maintains the fourth season is elderhood. We need to grow out of adulthood into elderhood as we grow out of adolescence into adulthood. He says that when someone isn’t able to leave childhood and grow into adulthood, we say they are developmentally delayed. Yet as a society, we figuratively dig in our heals and resist in every way, growing into elderhood. 

“We’re told that ageing is the problem. Ageing isn’t the problem. It’s our obsession with youth—our excessive devotion to the virtues of youthful adulthood.”

I’m not willing to throw away my makeup or hair colour, but I hear what he’s saying. I cringe almost daily at the ageist jokes on Facebook, poking fun at ourselves as we grow older. For at least a generation, we’ve been barraged with the message that all the good things in life occur for the young, and we need to cling to youth with every ounce of strength we have.

Dr. Thomas says, “There is life beyond adulthood. It’s called elderhood. Every day, we wake up one day older. Ageing is good. We are all elders in the making. Our society needs elders.”

This is radical thinking. That time of life that we have dreaded and resisted with every fibre of our being is good? Elderhood is counted and joked about in terms of losses. Are their real gains in terms of wisdom and significant contribution?

I'm racing toward this phase of life with the energy of a freight train entering the station, and I confess to wanting to put on the brakes. It all comes down to purpose. We need to send these messages to our elders daily—verbally and through our actions:
“You are important.”
“You have something to give.”
“My relationship with you enriches me.”

Actually, is there anyone among us who wouldn’t blossom, hearing that kind of message?