Wednesday, 29 March 2017

Care Partner Wednesday--A Sense of Purpose


Without purpose, life is flat. It's a series of obligations, where we trudge through each cold, grey day. Nothing matters.
Purpose brings colour and sparkle. It makes what we do in a day matter. Purpose is a job we love, relationships that matter, and making a difference.
For someone with dementia, or who is elderly and physically frail, purpose can be elusive. It's radical in our society to even imagine that elders can have purpose. Should have purpose.
The P in care partner is for 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 took his wife out dancing and took the family on vacations. He was the salt of the earth. Now George is elderly. He has dementia, and describes the workings of his mind as being "cloudy." He is incontinent and 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, which 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 change, she was caregiver for her husband for over a year as dementia changed the man she knew. She was brave and capable. Then came the day she moved him into long term care. A few weeks later, she was distressed to find her husband was completely happy in his new situation. He seemed to enjoy the freedom of being on his own, and it shook everything she understood about their marriage. Pat no longer understood her role and she loundered as she looked for purpose.
How can we help Pat to find her way?
Purpose is both individual and elusive. It involves knowing the person well, but understanding that what may have been important a few years ago may not be what makes life purposeful now. 
As care partners, helping your loved one find their purpose might be the most important journey you take. Purpose involves helping the person find what makes them feel valued.
Here are some statements that lead to purpose:
"I really enjoy it when we ________________."
"I've never been to Paris. What did you like about it?"
"I need to ask your opinion about_________."
"I just love spending time with you. You teach me so much."
"Could we go for a walk together? I really love to spend time with you."
"I really need your help with___________."
Elderhood is not a time to be constantly served. It's not a time to lay on your bed and wait for the end. Each elder has something to offer. A sense of purpose.
Help them find it.
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Wednesday, 22 March 2017

Care Partner Wednesday--Can You Enter In?


Here's a scenario. On a trip to the local drug store, I pick up several items and head to the checkout. I also need stamps, which I know can be obtained at the cash register. While I am placing my items on the desk, the cashier begins to fire questions at me. Do I want a bag? Do I have the store's points card? How would I like to pay? Every time I opened my mouth to ask for stamps, she fired another question at me. Finally I blurted out, "I need stamps!" She looked startled, and pulled them out of the drawer. Her look as she checked me out clearly said "crazy lady in aisle one."

Another scenario. I once ventured into a certain much-beloved-by-others coffee shop. I'd never been before, but was with a group of people who frequented the place. I stared at the board behind the counter, and had no idea what to order. The sizes, the drinks--everything was in a language I didn't understand. The young man behind the counter began firing questions at me, and I backed away in bewilderment. His impatience was obvious, so I ordered what one of my co-workers was having. Intimidated, I sat and drank an overpriced drink I didn't like, vowing never to go back.

Is this what it's like to have dementia?

Do well meaning questions come across like rapid-fire bullets when your mind can't process the information quickly enough?

Does it sometimes seem like people are speaking a language you haven't learned?

Do you feel intimidated and forced into making choices you don't want, because you don't understand?

Today, the first E in care partner is for enter, and empathy. Enter into the world of the person with dementia for a moment. Understand, as much as you can, how frustrating and confusing the world can be. Allow yourself to shrink in shame when you don't comprehend. Feel the tears prick your eyes when you make a mistake. Or perhaps you hide your mistake with bravado, insisting the mistake was someone else's.

With even the tiniest particle of understanding, perhaps we can temper the way we respond. Slow down. Smile. Give the gift of respect. Listen.

One more scenario. As hard as it might be to believe, I have never done my taxes alone before. There was always someone to either do them for me or with me. I don't have a good relationship with numbers, and I find the whole process frightening. However, I gave myself the "You can do this" talk and phoned the tax preparation people. The lady on the other end of the phone was obviously rushed. She took my name without listening and missed the second part. Then she wanted my social insurance number, which I had to dig for. Who knew they would need that to make an appointment? Sounding frustrated, she gave me an appointment for the next day.

Armed with my file folders, paperwork and sticky notes, I headed over to the office, only to find the door locked. They closed an hour before my supposed appointment. Maybe between her accent and her rapid-fire words, she changed the day and I didn't hear it. I'm sure the mistake was mine. The experience left me feeling frustrated and angry. If she'd just slowed her tone, or repeated the appointment time once, this could have been avoided.

I'll take the experiences in these scenarios, and use them to help me enter into the world of people with dementia. I'll remember how I felt, and hopefully, it will make me a better care partner.

And you?

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Wednesday, 15 March 2017

Care Partner Wednesday--The Issue of Respect


Since I was a little girl, the words "respect your elders" were drummed into my
consciousness. To this day, when I call some elders by their first name, I see a vision of my mother's eyebrows raised with the look. It's a sign of respect to use older people's proper names. There were clearer rules when I was a kid about showing respect.

Maybe we need to revisit it. What does respect look like?

Respect means: I have something to contribute, no matter my age, my frailty or my cognition.

Respect means: you listen to my stories, even if you have heard them before. Respect listens, trying to discern who I am and know me better with each repetition.

Respect validates what I am saying, even if you have no idea what I'm talking about. My words may be confusing, but there are real feelings behind them. Respect listens to my heart.

Respect laughs with me and never at me.

Respect acknowledges that I might have annoying habits, but sets them aside and loves me anyway.

Respect asks my opinion.

Respect shares your life with me and allows me into what matters to you.

Respect looks at what's important to me and holds it in reverence, also.

Respect finds ways to connect.

Respect ask questions with real interest, and expects to learn from the answers.

Respect sees me as an interesting person with a fascinating life.

Respect is careful not to patronize.

"Respect your elders" is wider and deeper than I experienced as a kid. It's not just a set of rules, as I was taught, but the understanding that, without elders in my life to teach me and grow me, I am bereft.

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Wednesday, 8 March 2017

Care Partner Wednesday--The Crippler Called Anxiety


Anxiety produces a great Scrabble score, but not much else positive.

Two daughters faced a care partner's nightmare.

They had to move their exceedingly reluctant mother from her condo to a room where she could get more care. They shuddered when they remembered how they had moved her a few years ago, and this was worse. Proud and independent in the past, she was mourning her many losses.

She refused to see the room, so the daughters accepted it on her behalf. They made multitudes of crucial decisions concerning what to keep, what would make the room comfortable, what would fit--what mattered. They knew they had to get this right.

They brought her into the finished room, and tried to gauge her response. It wasn't until the next day,  she looked around and said, "The girls did a good job." The daughters let out a collective sigh of relief.

Anxiety is the first "a" in care partner. The job can be replete with anxiety. Here are just a few:

  • This is a degenerative disease--what will happen next? Will I be able to cope when the changes come? Can I handle this emotionally?
  • Will I be able to do everything that's needed? Will I be able to handle all the demands?
  • Am I making the correct decisions?
  • Which medications, treatments are best for my loved one? 
  • Will the money last?
  • My elder is unhappy and manipulative. Will my patience last?
  • Mom is going to have to move. Where is the right place for her?
  • Are the staff treating her with respect and caring for her well?
This is just a sampling. Obviously, no one can live continually with this kind of stress. How can a care partner keep from slipping into the abyss of anxiety?

  1. Get information. You wouldn't sit down and try to eat a whole meal in one gulp, and neither can you understand everything in the first few weeks. Talk to doctors, experts in the field, friends with similar experiences, and read, read, read. Not everything you read or hear will be helpful or applicable to your situation, so learn to discern.
  2. Get help. This is not a journey you need to take by yourself. If there are family members who can relieve you, call on them. If not, look to hire some respite help for a few hours a week. If that isn't possible, look to friends or other volunteers.  So often, people want to help but have no idea what you need. Tell them.
  3. Get support. The words, "I know what you're feeling" from someone who not only knows, but has been through it themselves (or is going through it now) are invaluable. Just knowing that someone understands can give you the strength to go on. And here's a thought--maybe you can be that person for someone else.
Anxiety in some form is inevitable. There are times when this adventure is daunting. Recognize this, and look for the tools that will reduce your stress.

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Wednesday, 1 March 2017

Care Partner Wednesday--What is a Care Partner?



It's a question there is no one answer to. Care partners have different roles, depending on who they are and who they are partnering in care with.

For the next several weeks, we are going to be looking at care partners and their roles, by looking at each letter in their name. C-A-R-E  P-A-R-T-N-E-R, who are you?

The letter C obviously stands for care, but what does care look like?

One phrase I've heard many times is, "I'm not a care partner, I just..." (fill in the blank--I just visit, pick up a few things, drop in on weekends, listen, make some meals for her etc.) These all make me cringe, but the one that makes my eyebrows fly up and causes me to bite my tongue is, "I'm not a care partner, I'm just his wife." Care partners come in many forms, but you are all care partners. Especially spouses.

Here is what a care partner isn't: perfect. Like anyone else, we reach the edge of patience at times, and have to dig deeper for love when someone acts unkindly. We get embarrassed and exhausted and have our limits. Not all care partners do everything, and that's okay. I have been a care partner for 18 years, and still have to turn my head away and stifle my gag reflex when teeth come out of mouths. I have other areas of care I am good at, but teeth aren't my forte.

Care partners have something to give. It might be a listening ear, kindness, a trip to the park, or practical items like tissues and toothpaste. It might be taking to appointments and listening to doctors and trying to help decide the best course of action. It might be listening to the same story over and over again.

Sometimes care partners feel inadequate. "I didn't ask for this job, I'm not patient enough. I don't have the skills, I'm not good at it." It's easy to feel frustrated and live with a constant sense of failure, which is sometimes reinforced by your elder. Take heart! You may be stretched and challenged, but there will be moments when you can look back and say, "I made a difference."

Other care partners are naturally nurturing people who have cared for their elder (spouse, sibling, friend) for years, and are having trouble letting go. Others are now involved in their care, and this is difficult for you to accept. Your role is important, but it's changing, and you struggle to find your sense of purpose.

Then there is the care partner who is overwhelmed. Beside your elder, you have a growing family, a job and other responsibilities. You are exhausted and wonder if you are doing any of it right.

Do you see yourself among these care partners? The truth is, both care and care partners come in many versions, and all are needed. I may not be good at teeth, but I'm a good listener, and sometimes I can coax a laugh. Your practical help can compliment a volunteer who takes your elder out for a walk.

It takes a village--of care partners--to care for our elders. Maybe the question is not what is a care partner, but who is a care partner?

The answer is--you.

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