Wednesday, 16 August 2017
My car has reached that unfortunate state where the repairs and anticipated repairs mean I need to replace it. Ugh. I am leaving for vacation in less than a week. I wasn't planning on taking my car, but the multitude of decisions necessary to get a new one will have to wait until I get back.
The problem is, I have things I need to do before I go. Things that involve me going places and doing things. I need groceries. I need food for the puppy. I need to pick up something for work.
I need my car.
My car doesn't work.
I don't consider myself to be a super independent person, but this is annoying. Every task I would do without thinking now has to be strategized and organized and sometimes involves me going, hat in hand, and asking for a favour. It's frustrating and embarrassing.
But it's only for a few weeks.
I started to think about elders and their independence. Losing your car is only the first of many losses. What if I also lost my mobility, my ability to think clearly and my independence in the bathroom? In thinking about the residents I serve, I am struck by the grace and patience with which they accept their limitations.
One of my residents is blind. She sees only vague shadows, and can't find her way around. She calls on her friend, and they go everywhere together because her friend can see. I've never heard her complain, except to state in the most matter of fact way, "I can't see." She has a sense of humour and an enthusiasm for life that inspires me. When she comes back from the hairdresser and I tell her how nice she looks, she grins and says, "I'll take your word for it."
When I grow up, I want to be her. I want to face my disabilities with grace and humour, and never complain.
Remind me I said this.
As care partners, we need to develop a sensitivity to elders who struggle with shrinking abilities. Especially when you work in the industry, it's easy to become desensitized, and not realize how difficult the losses are. We need to extend grace, patience and love to those who struggle. Imagine what it's like to live in their bodies and give them the gift of understanding. Maximize their strengths and the abilities they still have, and give them opportunities to use them. Respect their limitations, and don't expect what isn't possible.
I have chronic arthritis. One day, and for several weeks, my right knee will hurt like the dickens when I walk. Without notice, the pain will shift to my left ankle, and I'll be hobbling even worse than before. Or I will go to grab something, and my thumb joint will remind me that it's there. I hate being slow and limping and looking pathetic, but that's my life at the moment. I can't help it. Often, on my commute, I will hear the impatience of people behind me on stairs or going through doors. I try to wait until most have passed, but I have to get to work, too. When I sense someone hovering and trying to hurry me along ("why don't you just pass--there's plenty of room?") or making an impatient noise as they rush by me, I want to say, "Would you like to travel for an hour in my body?"
As a care partner, I need to extend that grace to the elders I serve. I may not fully understand their challenges, but I can extend the gift of empathy.
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Care Partnr Wednesday--Independence
Wednesday, 2 August 2017
Imagine you are 10 years old. Do you remember the house you lived in at that time? What did it look like? What did your mom and dad like to wear? Did your mom wear an apron and make your favourite foods? Was your dad busy at work all day, and did the family eat around the table at night? Did your brother tease you, and your sister take your things? What about the friends you played with
--what were your favourite games?
What if you weren't imagining or remembering. What if you woke up one morning and this was your world--except it wasn't. You feel like a 10-year-old version of yourself, and you expect to hear your mother calling you for breakfast at any moment. Except something isn't right. You look around, and nothing is familiar. This isn't your room. This isn't your house.
What would you do?
You'd say, "I want to go home! Where is my mother? She's going to be looking for me!"
Now, what if someone came up to you and said, "Of course this is your home. You live here." You look around, and you know they are lying because you know this isn't your house. Even worse, someone says to you, "Your mother? you're 80 years old. Your mother died years ago."
Your reality--your real world--is the home you grew up in, with your family all around you. My challenge, as your care partner, is to leave my reality and enter yours. I'm not lying to you, or patronising you, but I enter your world with you, and we explore it together.
So, as you panic, because you are in this "twilight zone" state, where nothing is familiar, and you can't find the people you love, I need to go there with you.
"What does your mother look like? I bet she is a good cook. What is your favourite food that she cooks? I bet she has lots of advice for you--what kinds of things does she tell you? My mother always told me to eat my peas, but I hated peas, so I always looked for ways to get out of it. Did you use to do that? Was there a food you really hated?"
Slowly, your panic dissipates, and you begin to reminisce.
Dr. Bill Thomas, the founder of the Eden Alternative, has said, "if you have met one person with dementia, you've met one person with dementia." Every situation is different, every person is unique, and what works today may not work tomorrow.
Speaking dementia requires creativity. The bottom line is to realize that the person with dementia is in a different place right now. You need to find the place where they are and go there with them. You should never try to drag them back to your world. That will confuse, frighten and anger them, and it won't work. In the end, they will know you are wrong.
- One daughter made a fake medical degree and framed it for her father, who was convinced he was a doctor. (He had started in medicine, but the war interrupted his efforts. But in his mind, he practised medicine, so his daughter made it happen.
- The same man was convinced he'd been asked to appear as a guest conductor on the Lawrence Welk Show (long after Mr. Welk was dead because he saw reruns on TV.) His daughter bought him a conductor's wand and big band CDs, and he conducted the band. 1.
- I have spoken on a dead phone to a "father," asking him if his daughter could stay for dinner with us. She was afraid he would be angry if she didn't leave right now. He "gave his permission" and she immediately relaxed. After dinner, she'd forgotten the whole conversation.
"Validation is not about treating someone as a child. It's about respecting the person with dementia as he or she sees the world. It's about overcoming our own bias. It's about adding some dignity to the last years of our elder's lives by accepting that maybe there is more than one way to see the world. There is our way, of course. There is our neighbour's way. And there is our elder's way, even when dementia is present." 1.
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Cre Partner Wednesday--I Speak Dementiahttp://ctt.ec/S05c2Care Partner Wednesday--I Speak Dementia
Wednesday, 26 July 2017
We often associate anxiety with dementia, and that's legitimate. There's nothing like an impaired memory to cause fear, especially if everything and everyone is new to you every day--that's scary.
But that's a topic for another day. Elders who don't suffer from cognitive decline, but have an anxiety disorder, have an especially poignant struggle. I am care partner for one such elder, and I've worked with others in the past. They live a special kind of hell, and their care partner's challenge is to bring both peace and well-being into each troubled day.
Each person with an anxiety disorder has triggers. Small events can escalate into a full blown attack in minutes. An unfamiliar environment, some small medical issue (like a rash or a cough) an unfamiliar person giving care--these are just a few examples. An event which seems minuscule to us has huge, unresolvable implications for them.
When an attack occurs, there are several aspects:
- Speech may become slurred, and the ability to express themselves is hampered by hundreds of conflicting thoughts, running through their brain. Picture a Pacman game, where the little creatures are constantly colliding.
- Reasoning is missing. Don't even try to explain or reason with the person, as they aren't listening.
- Conversation is cyclical. You will go around in circles. Over and over again.
- They might become short of breath and dizzy. They are definitely a fall risk.
- There is no sense of humour present. You may be able to joke this same person out of mild anxiety, but it won't work during an attack.
- Distraction seldom works during a full blown attack. They know something terrible is about to happen, and they won't be distracted.
For the care partner, special grace is needed. Patience, wisdom, love, compassion and a sense of humour. (Keep the sense of humour to yourself during a full-blown attack, but it will help you get through.)
Sometimes, attacks come out of the blue, and you will shake your head, wondering where that came from. There are times when you can identify triggers and head them off. Sometimes, you just have to go through it with the person, because there is no way around it.
I am facing such a circumstance. On Monday, I have to tell someone with high anxiety that she needs to move from the room she is in, to another one down the hall. It's an unusual circumstance, but it's necessary. Here are some of the steps I have taken to make this go as smoothly as possible.
- I will tell her Monday afternoon. The move will happen Tuesday morning. This gives her the respect of knowing ahead of time but minimizes the stress time.
- I have a whole team of people ready to swoop in as soon as she goes to breakfast. We should be totally finished (including pictures hung) by lunch.
- Someone is taking her out for the morning after breakfast. Someone else is coming to have lunch with her.
- Her new room will be set up as closely as possible to the way the old room is set up. The bed she is used to is being moved.
- All staff are aware and are supportive.
- Staffing assignments are being changed so that she will have familiar staff in her new room.
- She has an (as needed) order for anti-anxiety medication, and it will be needed those few days.
With all this preparation, will it be seamless, and without anxiety? No, it won't. But we've made a plan, and it will be as good as it can. In a few days, we will be over this challenge, and on to the next.
Living with chronic anxiety is a burden. Care partners need to offer both strength and grace, through a filter of wisdom.
And don't forget the sense of humour!
CLICK TO TWEET--Care Partner Wednesday--The Crippling Force of Anxietyhttp://ctt.ec/0LsMaCare Partner Wednesday--The Crippling Force of Anxiety
Wednesday, 19 July 2017
Imagine you're snuggled in bed having a great sleep, and at about 7:00 a.m., a stranger walks in your bedroom, turns on the light, and begins rifling through your clothes. As you cower under the sheets, she grabs the covers out of your hand, ripping them off you, and starts to perform some extremely personal acts on your body.
How would you feel?
Frightened? Disrespected? Violated? Angry? Would you scream? Hit someone?
Yet in places where elders are receiving care, this happens every morning.
"Now wait a minute. I say, 'Good morning, and I'm not a stranger. I'm helping her every morning.'"
But if someone has dementia, they may not recognize you. Even if you go in every morning. Even if you are related. And the natural reaction is fear, leading to aggression.
Try this scenario instead. (Knocking on the door) "Jean, can I come in?" (no answer, enters the room and quietly rubs Jean's arm until her eyes open.) Smiling, speaking softly, "Good morning, Jean, it's Judy. I've come to help you get ready for breakfast. Are you ready to get up?" If the answer is "No," Judy leaves and comes back later.
Approach is key elder care, but especially with people with dementia. We refer to "behaviours" that occur at times when people have dementia. When we say this, we mean actions like aggression, crying, hitting and punching, screaming and sometimes loud, inappropriate laughter. There is a nasty cycle where elders exhibit one or more of these behaviours over a period of time, and the solution is often to medicate them. Problem solved. No more behaviour--they are asleep.
Let's look at approach. It's not magic. Sometimes there is still agitation, and there are times when medication is needed. However, many times, the right approach can change the entire atmosphere, and bring calm, pleasure and even humour. Here are some tips:
1. Slow down. Rushing increases agitation and sends the clear message, "I don't have time for you."
2. Smile. A genuine smile is hard to disregard.
3. Watch your body language. Did you know most people with dementia can read body language perfectly, even if they can no longer read words, or even speak? Check your attitude at the door. One of my co-workers impressed me with the way she greeted people. She made it sound like meeting them was the best part of her day. I'm sure they picked up on that.
4. Communicate. Ask permission if you want to do something that involves touching them. "Could I just push your glasses up for you, Mary?" I've seen people come up from behind and hike an elder's pants up or move their wheelchair without saying anything. Next time you see a teenager on the street with his pants hanging around his bottom, come up from behind, don't say anything, and hike them up. Then send me a note, and let me know how it went.
5. Focus. Don't have a conversation with someone else, or interrupt what you are doing to greet another person. When you are with an elder, they are the most important person.
6. What is the unmet need? Often, if you can find this and meet it, the problem dissipates. I observed an elder just this morning who often comes to the breakfast table angry. She talks loudly, accusing others of lying. When she begins to eat her breakfast, the anger disappears. She's hungry. (Later in the day, the same behaviour occurs, and it's not hunger. The same person may have several unmet needs.)
Approach is all about respect. No matter what they do or don't understand, each elder is a person. Give them the gift of respect, approach them with gentleness and joy, and many times behavioural problems will vanish.
Care Partner Wednesday--It's All About Approachhttp://ctt.ec/AkHufCare Partner Wednesday--It's All About Approach
Wednesday, 12 July 2017
A Shattered Hallelujah
A shattered hallelujah is now my song of praise
Its notes are all the sweeter when my voice can barely raise.
Arms outflung, He calls to me to walk among the waves
To trust beyond what's in my heart, to find my inner brave.
I sob and stumble, gasp and fall
"This journey is too hard!" I call.
"They say I'm strong, but they can't see
the endless, wrenching pain in me."
His loving eyes stretch to my heart,
He listens to my song.
His hands reach out to grasp my pain,
"I've been here all along.
I'm holding you, each frightening day,
I'm Peace to sleep at night.
I'm the order in your chaos,
the joy that finds the light.
I'm the hazy future you can't see,
I hold those painful memories.
Your broken song is beautiful.
I know it's precious cost.
I'm here with you, I'll bring you through.
You're never, never lost."
My shattered hallelujah is still my only song.
The waves are unrelenting and my world still feels so wrong.
Yet I am moving forward with my hands stretched to my Friend,
Because I know He'll hold me, and some day, my heart will mend.
Ann Peachman Stewart
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The Small Miracle of the Brokenhttp://ctt.ec/UMdJdThe Small Miracle of the Broken
Wednesday, 5 July 2017
It wasn't the best of mornings.
I had ten minutes to blow dry my hair, change my shoes and get out the door. At that precise moment, my puppy discovered the enticing, dangling toilet paper, and ran with it in his mouth through the house. The other end was still attached to the roll. I scolded him, salvaged what I could and threw the rest away. Watching the clock, I returned to my blow drying.
He did it again. He responds well to loud noises, and normally I would clap my hands, but I had a blow dryer in one hand and a brush in another. So I banged my brush on the side of the sink.
Wrong move. The entire porcelain corner broke off and fell to the floor, shattering into a million pieces. Stunned, I looked at my ugly sink. Bathroom vanity replacement wasn't in the budget, so I determined to live with it until the day it made it to the top of my "urgent needs" list.
A few months later, that happened. I was cleaning the ugly sink when I noticed copious amounts of water on the floor. Further examination showed that the pipe was no longer connected to the sink because the piece that connected the two had broken off. Any running of water brought floods on the floor. Suddenly my bathroom vanity was at the top of the "urgent needs" list. I could live with an ugly sink, but I couldn't live with no sink. I had no choice.
Then there's my basement. In January, I had a sewer backup. Conversations back and forth with the insurance company, the condominium and the contracted construction company took months, but eventually, they gutted my basement in preparation for renovations. Then, everything stopped. They found mould. Four small spots that aren't related to the sewer backup or each other. Now I am told I have to have an environmental company do an assessment before anything more happens in my basement. The cost of the assessment is astronomical, and I have to pay it. I have no choice.
No choice feels like restrictive clothing. It feels bleak and hopeless and empty. Someone else is in charge of my life.
I make hundreds of choices in a day. But these two instances where I have no choice rankle me. How much worse must our elders feel as their world and their choices shrink as their disabilities increase?
Why does this happen?
Many reasons. Particularly with dementia, it's easy to assume that the elder is no longer able to make choices. The truth is, there are certain choices that are beyond their scope, and many others which aren't. An elder may no longer be able to make or even comprehend financial decisions but can decide what they would prefer to eat, wear, and events they would like to attend. Often, we take choices from elders without thinking about it. We feel we know what is best. We forget to offer choices. We get used to being in charge.
Try wearing a piece of clothing that is too tight for a day. Part-way through, you feel like you can't breathe. You just want to get out of it, to feel comfortable. Lack of choice feels like that. If an elder can't express how they feel, it can manifest in angry behaviour or resignation. Either way, it's a desolate way to live.
Honouring elder's choices is the essence of person-directed care.
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Care Partner Wednesday--"I have no choice"http://ctt.ec/9364cCare Partner Wednesday--"I have no choice"
Wednesday, 28 June 2017
Families can be the best aspect of our lives, or the worst, or somewhere in between.
The reality is that if families aren't functioning well, or one member isn't, becoming a care partner will make this more difficult. Rather than fighting, dysfunctional families will often stay away from each other, having as little contact as possible in order to cope. That works until mother needs more care and has appointed all the siblings as joint powers of attorney.
Resentment can build quickly. How do you find a way to work together? It's not always possible, but here are a few suggestions.
What is your goal? If you want to bring the family together in harmony as you discuss your mother's issues, that's a great goal, but it may not be reasonable. If there hasn't been harmony to this point, being care partners together probably won't bring it. Try looking at small, reachable goals. Getting the right supports for mom to live independently. Talking honestly about next steps.
Find your best method of communication. Technology makes communication possible, even if people live on the other side of the country. However, difficulties with communication are seldom related to physical space, but emotional. Think about the family member who frustrates you. How do they communicate best? Is face-to-face possible and desirable? Would a phone call work better? Maybe an email, where you have the time to think about what you want to say? Could you Skype as a family? Try to be flexible and find the method that makes the "difficult" person most comfortable.
Be clear. Express what is needed in the clearest, most non-confrontational way possible. Try not to be directive. "You need to..." Rather use phrases like, "The doctor said this was needed, how would you like to go forward?"
Leave your high horse at home. There may be words spoken that anger you or attitudes that make you want to retort in kind. There might be times when you have to seal your mouth with duct tape. Do it. This isn't about you or the other person, but about your elder. The other issues can be dealt with at a later time. (Or not. Sometimes you need to just, as the song says, "Let it go.")
Be realistic If all your best methods don't work, do what you have to do and go on alone. You have tried your best, and you are not responsible for the other person's actions.
Being a care partner when the family isn't working together, or is fighting against everything you are trying to do, is incredibly challenging. In the end, you are responsible for your reactions and no one else's. Concentrate on your relationship with you elder, and do your best.
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Care Partner Wednesday--All in the Familyhttp://ctt.ec/7IWk3Care Partner Wednesday--All in the Family