Wednesday, 9 October 2019

Care Partner Wednesday--Empower Your Later Years with Awesome Decisions Now



Margaret liked her stuff. She wasn't the least bit materialistic, but her sentimentality made it impossible to part with anything which had the slightest story attached to it. In her house, whole rooms were devoted to boxes of old pictures, which she planned to sort through someday, her mother's teacups, her deceased sister's treasures and furniture with a history. She loved to walk among it, touching this box and that chair and remembering.

When she had to leave her house, it took months to decide what she could part with, and in the end, the answer was, "not much." Her apartment in her retirement home was crammed to the ceiling with boxes and stacks of precious items. Even her bathroom cupboards were packed. She sat looking at it all and wondered what to do.

Then she fell. Twice. Her family sat her down and had a serious talk with her about moving to long-term care where she would get the care she needed and staff would be around to monitor her. "But what about all my things?" Her son leaned across the table, looked in her eyes and said, "Mom, what do you think will happen to all this when you die?" His words startled her, but she knew the answer. No one in her family cared about any of the items in the boxes. 

So this time, with her daughter's help, she relentlessly discarded. Or so she thought. She exhausted herself deciding, and her dreams were full of insecurity as she questioned herself. Once she discarded an item she could never get it back so each choice she made felt momentous.

She moved into one room. After moving, a small pathway down the middle remained for her to walk, and at least 25 boxes sat outside the door. Her daughter's red face dripped with sweat, and Margaret sat on the bed and cried. What should she do?

Planning for independence later in life starts many years earlier.

I learned this lesson when I became a widow at 53. My husband liked his stuff and collected many items. His stockpile of DVDs was epic. He filled countless binders with newspaper clippings. and kept every church bulletin. He loved books, all things musical--the list went on. It fell to me to decide what to keep, what to sell, what the children might like and what to throw out. It was a huge job which I attacked in layers. As I packed and sorted and tossed and made decisions, I thought to myself, "I never want my children to have to do this for me."

Clear the Clutter
Look around your home. Check out the cupboards, the drawers, the closets, the storage rooms. What do you have which you never use? Are there boxes and bins you haven't opened for years? 

Start with one room. Give yourself as much time as you need, but keep at it. When you think you are done, give it a few days and go back and see if there's anything else you can get rid of. Reward yourself if you find something. Then move on to the next room.

Margaret let her possessions possess her. They became so big that they affected her quality of life as she aged. Don't let that happen to you.

Look After You
Medical events happen, and some aren't preventable. As you age, your body doesn't function as well as it did in your twenties. That's not rocket science. But each day, determine to live the healthiest life you can. Make nutritious food choices, limit your portions, exercise and get enough sleep.
Participate in activities and pursue relationships which give you purpose and fulfil you. Life doesn't come with guarantees, but give yourself the best chance when you pursue physical, emotional and mental fitness.

Check Your Home
Falls bring disaster. We'll talk more about that next week. Check for any tripping hazards such as electrical cords or rugs. Scatter rugs should be removed as they have great potential to lift and cause a tumble.
Have someone install grab bars in your bathroom to make getting in and out of the tub easier. 
Look into what technology has to offer in terms of monitoring, so if you do fall you can quickly get help.

Ask For Help
Don't be stubborn. I'm preaching to myself here. If a task is becoming too difficult for you, ask for help. No one gives out awards for doing your housework into your eighties or lugging bags of groceries when it hurts your back. 

Independence is a process. Start today for a better, more independent life tomorrow.

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Care Partner Wednesday--EmpowerYour Later Years With Awesome Decisions Now

Wednesday, 2 October 2019

Care Partner Wednesday--The Good, The Bad and the Ugly of Independence



Independence. Toddlers throw tantrums for it, teenagers get drunk asserting it, we all crave it. We want to do what we want to do when we want to do it. We'll stay within the law (mostly) and societal boundaries (for the most part) but we crave the ability to make our own choices and decisions.

And that's a good thing.

Right?

It's no secret that as we age, our independence is threatened by our bodies. We don't see or hear as well, some of us don't move as easily, and sometimes our judgement is as impaired as our joints. We need help, and as much as it urks us to admit it, we can't do some of the things we did even ten years ago. Or we can, but the cost is high.

How do elders find their way?

Independence--The Good
The key to independence for elders is to find new pathways to former pleasures. Here are some examples:

Problem: You loved the independence of driving yourself everywhere. There's nothing like just hopping in the car (well, maybe more like hobbling than hopping, but you got there eventually) and going where you wanted to. You even gave other people rides. But lately, you realize your sight isn't as good and your reactions are slower. You're kind of dreading next year when you have to take your driver's test again.

Solution:You take cabs. It seems like a lot of money, but when you add up gas, the cost of your car and insurance, you're ahead. Or, you impress the heck out of your grandchildren by learning to take Uber. You still have you independence, your stress levels are going down and it works out cheaper in the long run.

Problem:You love to garden, but your back protests after a few minutes of weeding. Pruning, even light digging is okay, but weeding sends your back into spasm.

Solution: Hire a neighbourhood kid to weed your garden and save yourself for the fun stuff like planting and picking.

Problem: You love big family dinners, but last year the shopping, planning and cooking for Thanksgiving almost killed you. You have always been the host and you are loath to give it up, but you know the time has come.

Solution: Approach your family, telling them you'd still like to be hostess, but the work of preparing the meal is too much for you. Accept however they want to do it--divvy up the tasks, or have someone take on the job or even (gasp) order in. You do the little fun things you always enjoyed like folding the napkins fancy and making place holders.

Independence--The Bad
When is independence bad? When it's time to change, to find a creative solution, to look for new pathways, and you don't.

  • When you drive that car, even though you know you've had a few close calls because you can't bear to give it up. 
  • When you need a day to recover from doing the housework, but you don't get help because you love to hear your friends say, "And she does all her own housework--at her age."
  • When you keep working long past retirement age, even though every day is a struggle and your doctor has recommended you stop.
  • When you're using the furniture to get around the house, holding on to chairs and couches for balance, but you won't get a walker because they're for old people.
The difference between the good and the bad is often a matter of timing. And wisdom. The ability to recognize when things need to change and the wisdom to make those changes and find the pathways to new solutions--that's the good. The bad is not doing it.

Independence--The Ugly
The bad quickly slips into the ugly when the consequences of poor choices rush to meet us. 
  • A car accident that was your fault
  • a fall resulting in a hip fracture because you were trying to vacuum and tripped over the cord.
  • a heart attack because you kept pushing yourself to go to work when you no longer needed to.
The ugly has far-reaching consequences, but most importantly, it can affect your quality of life.


Before the bad becomes the ugly, why not make some wise choices and look for some new and creative ways to live your best, most independent life?

Thursday, 19 September 2019

Care Partner Wednesday--Do your Doctor's Manners Make You Angry?


Melanie shifted in the uncomfortable, straight-backed chair and glanced at her watch. It hadn't moved since the last time she looked, and compulsively staring at it wasn't doing a thing. Mom had mercifully fallen asleep in the chair beside her after almost an hour of meaningless chatter, pacing and protests loud enough that everyone in the doctor's waiting room heard them.

Studying the faces around her, Melanie tried to remember which ones had been there when they came in and which were new. Where were they in the queue? If Mom woke again before the receptionist called their names, Melanie knew there would be a scene. Correction. Another scene. Mom's restlessness spilled over at the half-hour mark and it had taken one of her pills and some chocolate to settle her down. If it happened again, she had no more tricks in her arsenal.

"Davidson." Melanie almost didn't believe it and sat for another second before scrambling to gather her things and her mother and follow the nurse into the office. Mom, befuddled and grumpy at being wakened, wasn't sure of her surroundings and protested at being moved. Melanie managed to herd her into the inner examining room, only to cringe at Mom's loud declaration, "I need to go to the bathroom." The nurse gave her a look and said, "Down the end of the hall. You can leave your things here."

Throughout the process of getting Mom down to the bathroom and helping her, Melanie's heart raced. What if, after all this wait, the doctor came to the room and they weren't there. Would they lose their chance?

She needn't have worried. Even with the bathroom trip, it was another 15 minutes before he showed up in the examining room.

A cardiac specialist, she'd never met this doctor before, but rather than introducing himself or even looking at her or Mom, his entire attention was on the chart. "Shortness of breath, some edema in the legs, irregular heartbeat. Has she ever had a Holter monitor?"

Melanie knew he was asking her a question and she should answer, but she didn't have a clue what he was talking about. She looked at him blankly. "I'm not sure what you mean."

His patronizing tone set her teeth on edge. "A Holter Monitor. A device which is worn for a day or two and it collects information about the heart which we analyze. Obviously not. I'll order it."

He approached Mom without talking to her and proceeded to listen to her heart and take her blood pressure, writing numbers on the chart. Miraculously, Mom didn't protest, probably because he was wearing a lab coat and she was of a generation who held the medical community in high regard. When the machine squeezed her arm she said, "It hurts." He ignored her.

"Definitely cardiac issues. I'll order the Holter. Make an appointment for a month from now so I can review the results."

Melanie opened her mouth to ask one of the many questions that lay stacked in her brain, but the opportunity had passed. She watched his back retreat from the office.
                                                                             ---#---

This fictional worst-case scenario illustrates many of the issues that drive us nuts when visiting the doctor, which is a frequent occurrence for anyone supporting an elder.


  • Long waits before seeing the doctor. I recognize emergencies happen and I would consider a wait under 20 minutes reasonable. But beyond that, barring an emergency, shows poor planning and lack of consideration for the patients.
  • A doctor whose manner is arrogant.
  • If the doctor focuses most or all of their conversations on the care partner without addressing their patient directly, that's unacceptable.
  • Basic manners apply. Introduce yourself, make eye contact, smile.
  • Don't speak in a patronizing tone. Ever.
  • Ask permission and explain before even the simplest procedure.
  • Don't talk as if the patient isn't there.
  • Welcome questions and build time into each appointment for them.
  • When the appointment is over, excuse yourself
Other points I would add:
Be available in a reasonable time when an appointment is needed.
Phone to schedule a follow-up appointment when results are in.
Be supportive and have information available related to the disease.
Watch your tone of voice and manner. Acknowledge how difficult this journey can be for both the care partner and the elder, and don't add to the pain.



When visiting a specialist, the bottom line is that often you have little choice who you see. You are referred, appointments may take long to schedule, and you take what you get. Many wonderful specialists are also people who see you for more than their specialty.  Others don't.

But if your elder's GP has some of the above characteristics, maybe it's time to consider changing. Caring is a long-term relationship and your medical support is an important factor, but not the only one.

If your doctor's manners make you angry, is he/she the right doctor for you?

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Care Partner Wednesday--Do Your Doctor's Manners Make You Angry?

Wednesday, 11 September 2019

Care Partner Wednesday-After A Frightening Diagnosis Ask These 5 Powerful Questions



Bill and I and the doctor were crowded into a tiny examination room, peering at the computer screen. A week ago he'd had a serious event which brought him to the emergency room. His cardiologist was there that evening, and did multiple tests. We stared at the screen where the results were displayed.

"Idiopathic Cardiac Myopathy." Finally this series of symptoms, which we knew were heart related, had a name.

Kindly, he explained that idiopathic meant they had no idea why Bill developed this. "It means the medical profession are idiots," the doctor quipped. Cardiac meant it involved his heart, which we  knew. But the doctor pointed to the computer screen and explained how Bill's heart was big and floppy and not functioning as a heart should. That was why his elbows and knees were turning black, his ankles were double their normal size, and Bill was short of breath.

Obviously, it wasn't good news. But we felt an incredible relief. This thing had a name.

As a care partner, you will quickly learn that many hours are spent in doctor's offices. Especially with your GP, what are the questions you need to ask?

1. Diagnosis--what is the name? With a proper diagnosis, you can do your own research into all aspects of the disease. Ask which are the most reliable sources for finding information. Are there support groups or societies for that disease which you could access? He might have pamphlets to get you started. You know, I'm sure, that not every internet site is a reliable source of information. Organizations formed around a disease, such as the Alzheimer Society, are a great place to start to look for both information and support. Ask your doctor where to start.

2. Prognosis--No doctor has a crystal ball, and most families would love to look into one. But he can tell you what to expect in the next days or years. Most diseases have an early, middle and late stage. Ask him what each of these looks like, how long they generally last and what kind of treatments are given. Take notes, but know that you can also find more information online.

3. Treatment--Focus on the stage of the disease where you loved one is living. What kinds of medications are given at this stage, what are the side effects and what benefits should you expect to see. Is there anything you should know about administering the medication? Timing is vital in the case of some medications, and others need to be taken whole and can't be crushed.

What other non-medical interventions are important? Exercise is often key, but how much and what kind? What other kind of therapies would benefit? My niece attends a Parkinson's boxing class and loves it, and it helps her with balance and strength and coordination. She attends a choir with the same group, and loves it less, but it strengthens her voice, which is always an issue in her disease. Your doctor may not know all the resources available, but it's a place to start.

4. Specialists--Your GP is probably your primary care physician. However, your loved one may need several specialists, depending on other conditions and the severity of their condition. Ask about this, and at what point will they enter the picture.

Something to consider: Your doctor and specialists should be in a close geographic proximity and have privileges at the same hospital. We learned this the hard way. Bill had a GP in downtown Toronto because it was handy for him to visit her immediately after work. For many years this worked well, but when he got sicker and needed a cardiologist and other specialized treatments, they were in Mississauga where we lived. Because of the distance, the doctors didn't talk to each other, and his care suffered. When we tried to get a GP at our local hospital no one was accepting patients. Thankfully, a friend asked a favour of her doctor and he took him on, but we had an anxious several weeks trying to work out the details.

5. Heredity--Should other members of the family be tested for this disease? Does it run in families? As scary as the answer might be, this is vital information.

Have your questions listed, and prioritize them as there may not be time for all of them. Remember, this won't be your only visit, so some questions could be deferred while others will occur to you later. Keep a running list.

Your doctor is part of the team caring for your loved one. Make sure your relationship gives you the freedom to ask all the questions you need answers to.

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Care Partner Wednesday--After A Frightening Diagnosis, Ask These 5 Powerful Questions

Wednesday, 4 September 2019

Care Partner Wednesday--Do You Have The Right Doctor?


Older people's bodies aren't the same as younger people's.

Duh. Am I a master of stating the obvious? But there's more to it than you might realize. And the implications for you and your elder might be something you haven't considered.

What are the Differences?

By no means a comprehensive list, here are a few of the implications of aging:

  1. Older people are more sensitive to temperature changes.
  2. They are less able to cope with the side effects of drugs because their kidney and liver function (the ability of their body to remove the drugs from their systems) are less efficient.
  3. Their bones become less dense. 
  4. Their night vision is poorer and their reactions slower, and they cope with dry eyes.
  5. They tend to not hear high pitched sounds as well.
  6. Some people have issues with constipation, diarrhea, and incontinence.
  7. Their immune system is less efficient, making them more prone to infections.
  8. Many serious medical issues, such as heart attacks, depression, and thyroid issues present differently than in younger people and are easily misdiagnosed by a medical professional not familiar with the elderly population.
Should you consider a different doctor?

Changing doctors can be a difficult decision, and not one considered lightly. In some communities, finding any doctor to take on a new patient is a challenge. Why would you contemplate such a move?
Here are a few questions to evaluate:

1. Does your present doctor serve a significant aging population and understand the differences?

2. When you take your elder to their GP, do they see one doctor or are their several physicians and you may get any one of them?

3. Are you in an area where a geriatrician is available, and would you be able to get a referral to them?

4. Are you comfortable with wait times in the office and the level of respect given your elder when they visit the doctor? (We'll be dealing with this in another blog post.)


5. How would your elder respond to the suggestion of changing doctors? If the reasons were explained, would they be open to it?

When you weigh all the options, changing doctors might not be the best option. Or it might be the wisest move you could make. 

Only you and your elder know the answer.

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Care Partner Wednesday--Do You Have The Right Doctor?

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.

No.

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.

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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.



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