Thursday, 22 June 2017
As words go, it's not one of my favourites.
Deterioration. "The process of becoming progressively worse." 1
Eww. Sounds like mouldy bread.
The reality of life is, deterioration happens to all of us adults. I used to be able to walk farther and run up a set of stairs. At one point in my life, I worked three jobs. My knees didn't hurt and I thrived on less sleep. I would come home from work and clean the house, bake and write until midnight. None of those things happens anymore.
Have I deteriorated? Or changed?
Probably some of both. What's changed is not only my body but what is important to me. I don't need or desire to work three jobs anymore. It would be great to have knees that don't hurt, but I've learned to live with it. It takes longer to clean the house, but it gets cleaned. I only bake occasionally, but that's enough. For the most part, I write on the weekends, when I am fresh. I've accommodated myself to the changes in my body, which corresponds to the changes in how I choose to spend my time.
I ask again: have I deteriorated or changed? If deterioration is becoming progressively worse, what is "worse?" I remember the days of three jobs, and I remember happy family times when my children were young. I also remember exhaustion, constant money worries and overwhelming fear of the future. The truth is, each stage of life, with its plusses and minuses, has its good times and bad, and today is better in some ways and worse in others.
Why the philosophical diatribe? Because people don't look at me with crestfallen faces and say, "She's deteriorated." But we use the D word with our elders all the time.
What would happen if we threw out the D word, and accepted people for who they are today? All the changes that affect us--physical, emotional, social, spiritual (and any other "al" that you can think of) become a part of who we are--today. I may have a life-long interest in tennis, and now I watch matches on television. Or perhaps tennis no longer excites me, but visits from my grandchildren make my eyes glow. I am always in the process of becoming. Growing. Adapting. And even at my most impaired, I am me. Look in my eyes, and find me.
I'm not in the process of becoming progressively worse. I am becoming the me I am today.
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Care Partner Wednesday--A New Look at Deteriorationhttp://ctt.ec/C01UsCare Partner Wednesday--A New Look at Deterioration
Wednesday, 14 June 2017
I saw laughter. I saw whirlwinds of activity. I saw smiles and happy tears. I saw hugs and milling crowds and eating--lots of eating. I saw all these at work today.
But I didn't see helplessness.
"An Elder-centred community creates opportunity to give as well as receive care. This is the antidote to helplessness." Eden Alternative Principle 4
Today, we had a baby shower for two of our care partners who are expecting new arrivals in August. New babies aren't common among our staff, so imagine out excitement when we discovered these two were due within three days of each other. Two neighbourhoods came together to host the shower and everyone else joined in the fun. It was family. Here are some of the scenes in the room.
- A care partner sent her regrets, because she was spending the day with her mother, who was having a birthday. She was encouraged to bring her. She arrived with her mother and three other ladies she had taken to lunch to celebrate the birthday. All were welcomed.
- A resident who had a special connection to one of the care partners, had gifts for both. Other residents made homemade wrapping paper to wrap her gifts in.
- Several residents came just to enjoy the party and the food. And that was fine.
- Family of residents joined the fun, and brought gifts for their family members to give.
Can you see it? A large room, with food-laden tables covered in pink tablecloths. Care partners, family members, residents in wheelchairs and residents with walkers, talking and laughing and having fun. Everyone oo-ing and ah-ing over tiny shoes and fluffy dresses.
Those who give care, receiving care. Those who receive care, giving it.
A beautiful day in the neighbourhood.
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Wednesday, 7 June 2017
Have you ever listened to your mind? Mine was a tornado of wildly whirling thoughts as I stood waiting for the train this morning. Here's a tiny peek inside my brain:
The renovations are starting today on my basement. Have we removed everything? Will they go smoothly? Will they be done by the time I go away?
Going away--what do I need to do before I leave? I booked a doctor's appointment for me and a vet appointment for Teddy? What else?
Teddy--how will he travel? Have to talk to the vet about his vomiting. Do I need to drug him for the trip?
Drugs--need to renew my prescription. So much to do. What about work?
Work--I need to complete my section of my performance appraisal as soon as I finish in the dining room. Then I have to get two staff p.a.'s done before Friday. Not much free time on Thursday, though. Need to get lots done today...
That slice of my thoughts probably took a minute or two. Add to that an ongoing situation that was stressing me out, money worries and chronic physical pain--my mind was tumbling with worries and "to do's."
Breaking through my manic revery, I heard birds calling to each other. Blinking as if waking from a nightmare, I felt the warming sun on my head, and saw a gorgeous blue sky after multiple days of rain. The birds, in a world of their own, called back and forth in the fields on each side of the tracks. I concentrated on their music, forcing the sludge of my thoughts back where they belonged.
I listened. Took deep breaths. Listened more.
There was peace there, if I chose to reach for it. Birds are busy creatures, yet they sing.
I can sing.
As I embraced the peace, it was interrupted
Dragging my mind back, I chose to listen again.
Lord, help me to listen each day to the song of the birds, rather than the cacophony of my mind.
"The seed cast in the weeds represents the ones who hear the kingdom news, but are overwhelmed with worries about the things they have to do and all the things they want to get. The stress strangles what they heard, and nothing comes of it." Mark 4:19 The Message
The Small Miracle of Listening to Birdshttp://ctt.ec/f6t2RThe Small Miracle of Listening to Birds
Wednesday, 31 May 2017
We all know that some personalities don't get along well.
There's the person with the loud and flamboyant personality to your quiet, introverted one. Or the one who is the heroine of all her stories, who makes you want to scream. What about the one who always looks grumpy to you? Or someone who is always too busy to give you the time of day?
Taking personality out of the mix, culture has a significant effect on how we act and interact with others. Family background, environment--it's a miracle any of us get along. Most of us can find a common ground and a way to connect with most people. Most of the time, it's great and we are enriched by relationships with people who aren't like us.
What about the times when it doesn't work?
Sometimes, we can forge a working relationship with someone who we would never choose to spend time with. We can make it work if we focus on the task at hand and make interactions brief.
What happens when that's not possible?
The relationship between the care partner and the elder is a special one. It's a relationship, and both partners contribute. If you, as a family member, sense it isn't working, what do you do?
1. Give it some time. There is a period of adjustment when someone moves into care, and it's necessary for everyone to get to know each other. The care partner needs to lear the elder's routines, and how they like things done. The elder needs to communicate their preferences, and sometimes this takes several days. They need to get to know each other as people.
2. Talk to the care partner one-on-one. It's usually best to do this when the elder isn't in the room, and when things are as relaxed as possible. Trying to address the situation in the middle of a confrontation probably won't give you the best outcome. Address the concerns, but rather than being confrontational, come at it with an attitude of "how can I help to make things better?" Listen. Be open. Look for practical ways you can improve the situation. Try to convey to the care partner that we are all on the same team here.
3. What you do next depends on the outcome of your talk. If you felt progress was made, you need to give it more time again. Look for ways to encourage the relationship and connect with the care partner in the next several weeks. If your attempts were met with defensiveness, or even anger, it's time to make an appointment with someone in administration, perhaps the director of care. During this meeting, have notes from your meeting and other issues that you feel are a problem. Be comprehensive, but not nit-picky. Remember to continue to look for solutions.
4. The administration may want to bring the care partner in, either with you or in private, to address the issues. You may want to wait a little longer, to see if this helps, depending on the seriousness of the conflicts. Or, you may decide to ask for a switch. It's possible to switch assignments, so that the care partner in question works with another resident, and another care partner works with your elder. Although not common, this happens and in some circumstances it is better for both.
The end result you want is harmony and a relationship that benefits both.
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Care Partner Wednesday--When You Can't Make it Work
Wednesday, 24 May 2017
Everyone's journey is different, but here is one I see frequently.
Diane cared for her husband all their married life, and became a care partner the day he was diagnosed with Parkinson's Disease. She read everything she could find about the disease, and related topics such as the side effects of the medications. She watched over every aspect of his life with care and love, and a bit of obsession. Keeping him functioning became her purpose in life.
Inevitably, the day came when she couldn't cope. Her own health was affected, and her family insisted their dad get more care. She could visit every day, and was a partner in his care, but she was now part of a team.
From the first day, she went to war with the staff. They had strange names she couldn't pronounce, they didn't do things the way she did or give him the constant attention she had. What galled her the most was that her husband was thriving under their care. When she visited, he seemed happy, and often wasn't in his room, but attending an activity. She wasn't self aware enough to know that her criticism grew from her feelings of insecurity. Her role was threatened.
Not everyone struggles like Diane. Many are delighted to share the caring role, and realize how much they need to divide the load. No matter on which end of the spectrum you land, the ways in which you connect with staff is key. Here are a few simple ideas to enrich your experience.
1) It sounds simplistic, but get to know their names. Find out the names of the regular full time and part time day and evening staff who care for your elder. Write them down, and make sure you are pronouncing them correctly.
2) Ask them about themselves. Not everyone is open to sharing, and if you sense resistance, back off on this one. But if you get information, write it down beside their names. Next time you see them, ask them about their children or their dog.
3) Ask their advice. Care partners have some great ideas, and invaluable experience.
4) Take a picture of them with your loved one. It's a beautiful, non-verbal affirmation.
5) On occasion, take them a small, token gift such as some baking or flowers from your garden. It means a lot.
6) Affirm them in front of your elder. "Dorothy knows how to shower you and she will do a wonderful job. You have nothing to be afraid of."
7) Ask them to tell you stories. Ask what your loved one's day was like, what activity he enjoyed the most in the last week, what meals seem to be his favourite. Staff is a connection to your elder when you aren't there.
8) Affirm them. Sincerely tell them how much you appreciate the impact they are having on your loved one's life, and how much it means to you.
What happens when you have a staff member with whom there is a problem? I'm not talking about abuse, which of course you would report immediately, but personalities which clash. Next week, we'll talk about some strategies for that.
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Care Partner Wednesday--Connecting with Staff
Wednesday, 17 May 2017
It’s no surprise that one hundred percent of the time, the end of the care partner journey is the death of their loved one.
The problem is, death is an unpredictable creature. Sometimes he sneaks in at night, and just like that, it’s over. At other times, symptoms point in the direction of the end, and we wonder--is this it? It isn’t. What may look like end-of-life in a fragile elder can be something easily treatable like a urinary tract infection.
Deciding when “the end is the end” is difficult, even for the medical community. As a care partner, you may be asked to make complicated decisions--decisions that have no clear answer.
It helps to reason through the choices before you are caught in the web of conflicting emotions.
The final “R” in care partner is release.
As people age, their appetite dwindles. Even with nutritious, attractive meals, many eat slowly and leave half of even a small portion. They need encouragement to drink, and many are dehydrated. A doctor, nurse or dietician may suggest a supplement. Liquid supplements are popular, as most people enjoy the flavour, and they provide the nutrients for an entire meal in a small glass. For many elders, supplements provide stable health and quality of life for a period of time.
Here are a few scenerios:
Madeline struggled with eating and swallowing for over a year, and there were many choking incidents. One day, she could no longer swallow anything. Her family decided to send her to hospital to get a feeding tube. Over the next three months, her struggle intensified, and there were multiple trips to hospital. The tube became blocked, detached, and her body swelled because it wasn’t absorbing the nutrients. In the end, her family had the tube removed and she passed away peacefully.
If there was someone you might think wouldn’t benefit from supplement, it was Mary. In a wheelchair, unable to speak or do anything for herself, it would be normal to suggest Mary wasn’t a candidate for supplement. Mary didn’t think so. She pointed to the glass, indicating she wanted it, and now. She lived on supplement for a few years, and it was her choice to do so.
Amy ate little. Some days, she drank part of her supplement, and some days, not at all. One day, she didn’t eat at all, and had only a few teaspoons of water. The next was the same. On the third day, her family was called. We all agreed, Amy was sending us a clear message. She was done. Staff kept her clean and comfortable. Mouth care moistened her tongue and lips and medications were given to ensure she had no pain. Oxygen made her final breaths easier. Her favourite old movies were playing on the television. Over the course of a few days, she slipped away.
Ralph’s family made the decision that they would let him lead in his final journey. When he stopped eating and drinking, they accepted that, and other comfort measures were put in place. After two days, Ralph looked at his sister, and said, “I’d like some chocolate ice cream.” Stunned, she rushed for the nurse, unsure of the next step. Was this a miraculous revival? Reassured, she came back to the room with a small bowl of ice cream, and fed it to her brother. After a few spoonsful, he lay back and indicated he’s had enough. A few days later, he passed away peacefully. His sister still smiles when she remembers sharing that ice cream with her brother.
In death’s unpredictable course, every care partner is called upon at some point to release their loved one. Although painful and difficult, it’s a gift.
A final, precious gift.
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Wednesday, 3 May 2017
"An elder is someone who, by virtue of life experience, is here to teach us how to live."
--The Eden Alternative definition of an elder
When I was a little girl, there was a lady in the church who "adopted" me. I was shy and socially backward, and she called me her pet, and sought me out after every service. She would hug me and tell everyone who would listen how special I was. I remember a card she sent me, where she addressed my tendency to worry with a special scripture. To this day, over 50 years later, I remember her silver hair, her soft, pink skin and how she made me feel. She was my first experience of an elder teaching me how to live.
My first, but far from my last. The final "e" in care partner is for elder. Here are some truths and nuggets of wisdom I have learned from elders over the years:
1) Compassion. The day I retuned to work after my husband died, an elder was waiting for me at the elevator. She held her arms out to me as I knelt at her wheelchair and we both sobbed. I don't remember much else from that day, but I remember her compassion.
2) Friendship. Doris has an anxiety disorder and Glenda is blind. They go everywhere together, as Doris helps Glenda find her way, and Glenda encourages Doris to be brave.
3) Love: For years, Mrs. Richards couldn't speak, or respond in any way, but Mr. Richards would take her for walks, talking to her in a soft voice and greeting everyone along the way.
4) Celebration. At a recent luncheon, a woman in her 90s proudly and with great love, presented a birthday card to a friend turning 106.
5) Fun. Elders donning outrageous Easter bonnets and giving cheesecake smiles for the camera.
6) Servanthood. Loretta comes each week to knit with her friend. It's not about the knitting, really, but about helping Vera focus on the positive and keep anxiety at bay.
7) Interest. Marjorie gave one word answers to most questions since a serious medical event seemed to steal most of her language. But when we started talking about china patterns, words poured forth as she shared her knowledge.
8) Grooming. Sarah never leaves her room. She's comfortable there, and totally happy to sit in her chair and watch the world go by. Did I say never? One day a week when she is happy to leave for an hour--to visit the hairdresser.
9) Courage. Mona watches her husband struggle from the ravages of Parkinson's disease. Every day, she looks for new ways to make the struggle easier and show him respect while helping him find his way.
10) Wit. Irene was Scottish and blind, and becoming quite agitated as the piano tuner plunked away at the keys, doing his job. Her body language showed her increasing disgust. Finally, she blurted out, "If ye canna play the thing, why don't ye just leave it alone!"
Each elder has a lesson to teach.
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Care Partner Wednesday--What is an elder?
Wednesday, 26 April 2017
"I don't feel normal. I don't feel like me."
As we talked, I asked her what she felt "normal" was. She told me about a time when she could do everything for herself, and used to run church groups. I asked my friend how long ago that had been, and we agreed it was about 15 years ago. "You've changed a lot since then, but not all of it's bad." She had new friends and had the joy of seeing her grandsons grow and start lives of their own. Many of the worries she had then, weren't an issue now. She'd learned and grown.
She had a new normal.
The "n" in care partner is for normal.
What is normal? In 1998, Patsy Clairmont first told us Normal is Just a Setting on Your Dryer. What a relief it was to learn that it's okay to not fit into society's little box. It was freeing at the time, yet we still seek "normal" in our lives.
Normal changes. When my kids were babies, normal was to be up half the night and and sleep-deprived during the day. When they were teenagers, normal was worrying when they weren't home.
Although those were special times, no part of me wants that "normal" back. I've changed, and I wouldn't have the energy for babies or teenagers any more.
If you are elderly, especially if you are in frail health, your normal can change in a flash and the change tilts your world. Maybe it will return to to "normal" or maybe a new normal will emerge. Sometimes you barely have a chance to figure out the new normal before it's changed again.
One of my residents was finishing her lunch. She got up, and as she reached for her walker, she turned and lost her balance. The fall that resulted tilted her world. A broken hip, and arm, surgery, rehab and months of recovery. Thankfully, her world has adjusted to it's pre-fall state, but the tilt was dramatic and harrowing for her.
As a care partner, finding normal can be a never-ending quest.
Here's my five suggestions when looking for normal.
1) Be flexible. Realise that life changes, people change and things will never be exactly as they have been. And that's okay. Look for the fun and the joy in what today brings. As a care partner, you can quietly grieve some of the losses, but determine to look for and celebrate the joy that today brings. If you are honest, there were times when the old "normal" wasn't that great.
2) Find some normal. In the midst of change, look for some memories or familiar objects that bring a sense of comfort. A picture, a favourite chair, a painting, a photo album full of precious memories. An activity you used to like to do together that is still possible. A little normal can make a whole lot of change easier to deal with.
3) Expect change. I have seen care partners and family members stress over change and try desperately to make things the way they were, when their loved one has changed and doesn't care about that any more. "She always loved to do crafts. Make sure to involve her when you are doing crafts." The person did love crafts in a different season of their lives. Now they would rather sit and look out the window or feel the fresh breezes in the garden. Everyone has interests that change as they get older.
4) When you "get it," help your family members. There's always one in a family, and often more, who lag behind in wishing Mom would be like she used to be, or worse, feeling that Mom is gone because she isn't "normal." Help them to see the beauty in the person who is there now.
5) Express to your loved one how you are enjoying who they are today. Even with cognitive impairment, elders know they aren't who they used to be. Your job is to recognise that and celebrate who they are today. Look for their wisdom and learn from them. Listen to their stories, even if you have heard them before.
Every day is a gift and normal is highly over-rated.
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Care Partner Wednesday--What is Normal?
Wednesday, 19 April 2017
Have you ever run into an old friend you haven’t seen for a long time? After the obligatory, “Hi, how are you?” the answer is inevitably, “Busy.”
We wear “busy” like a badge of honour. Our time is full, and somehow that makes us better, more important people.
For care partners, balancing life is especially challenging. The T in care partner is for time.
Full time care partners have the biggest challenge. For them, the demands can be unrelenting, as day runs into night. Unending tasks, lack of sleep, appointments and repetitive conversations fill the days and stretch incessantly. They wonder, “Can I stay the course?”
To the full time care partner, I say get help. Everyone and no one is a hero in this situation. You are a hero for being there when you want to run away, or when all you really want is a full night’s sleep. Don’t fall into the trap of thinking that you are the only one who can provide care, or that you are somehow less caring or giving when you take advantage of the many supports that are out there. Government programs, respite care, friends, family—there is help available, and you need to use as much as you can. You will be no help to your loved one if you get sick or burn out.
Care partners who have an elder living in care, also struggle. Sometimes, it’s trying to make the right care decisions when the answer isn’t obvious. Sometimes, it’s trying to balance home, family, work and time with their elder. Guilt raises its ugly head and it’s difficult to make wise decisions with all the pulls on your time. “When are you coming to visit? I thought you were coming today.” A friendly conversation becomes a burden of guilt and even anger.
To this care partner, I say set boundaries. A frank discussion, sometimes held over several weeks and months, assures your elder of your love, and lays out clearly what you can and can’t do. “I can come one night a week to have dinner with you, I can take you to appointments, I can bring the grandchildren to spend time with you. I can’t be here every night, or even talk to you every day on the phone.” Time together needs to be enriching for both of you, not burdened by misplaced obligation.
All care partners need to remember this: time is finite.
This week, I saw two special care partners say good-bye to their elders. No matter what the age, the experience is wrenching, and terribly final. In the midst of whatever challenges you are having, remember this: someday it will end. Someday, you will have to say good-bye, and your time with your loved one will be over.
Time. A precious commodity.
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