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.


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.


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.

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

Sunday, 11 August 2019

The Amazing Small Miracle of Awe-Inspiring People

The thought never occured to me to sponsor a fund raiser.

But God had other plans.

In the two years since I'd last visited my niece, Jenn, she and her family had walked a perilous journey. She'd begun her course to take Early Childhood Educator, Level 2, but almost immediately experienced disturbing symptoms. While continuing her classes and her work at a local daycare, this mother of four also found time for multiple doctor's appointments. For many months, the doctors were stymied, and during that time, her symptoms worsened. Months later, the diagnosis of an aggressive form of Parkinson's Disease or possibly Multiple Systems Atrophy set the course for the future. Her legs often failed and the resulting falls lead to painful bruises and cuts. Through the tremors, the freezing and  other difficult symptoms, she soldiered on, completing her course and graduating on her 45th birthday. Jenn calls herself a Ninja, and so she is.

As I sat across the table from her, I saw so many Jenns. There were hints of the old Jenn with the great sense of humour and the indominable spirit. I hugged her and wanted to hold her tight and somehow make it better, but of course I couldn't. I saw the Jenn with crooked glasses from multiple falls, the tremors she tried to still for our picture, the uncontrolled movements and a frailty I'd never seen before. We chatted about life, family and her disease, and she mentioned how she'd love to have a three-wheeled bike that she could ride without the fear of falling. This former marathon runner could no longer safely go for a walk, but this kind of a bike would make it possible to get out.

A bike. Hmmmm.

Something about this struck me, and without the least idea how, I knew I wanted to get her that bike.

I didn't have the money. When I returned home, I stood in my living room and looked around. What could I sell? It was then I remembered the patio table and chairs sitting in my garage. That would be a good start.

My friend helped me pull them out and I hosed them down. Dragging them into the driveway, I staged them and took pictures. Facebook Marketplace and Kijiji would certainly give me enough exposure to sell them. Excitement mounted.

At the last minute, I thought I'd send out a group email to friends and neighbours, just in case anyone wanted to purchase them. It would be easier to sell to a friend. I mentioned my price remained firm because the money would go toward the bike project. That's when God stepped in.

One of my friends replied, "IThe table's too big for me, but why don't we all pitch in and get the bike for her?" This response astounded me, but I felt a little embarrassed. I didn't want my friends to think I meant to ask for money. But before I could reply, money began arriving.

Email transfer after email transfer. People arrived at my door and stopped me in church. I couldn't hold back my tears or my excitement. This was happening.

I listed the table and chairs, and calls began for those, too.

I began talking to one of Jenn's daughters and my nephew, and together we exulted over this miracle. Within five days, the table and chair sold and the rest of the money sat in the account. I transfered it to my nephew, who took over the purchasing and assembling.

Two weeks after the day I looked around my living room for things to sell, Jenn received her bike at a family dinner. Totally astounded, her happy tears were testimony to how God brought this together.

The card read, "Dear Jenn, Years ago you ran a marathon in honour of Bill. This is me running for you." The card also contained the names of the 13 people who came together to be part of the miracle.

 Jenn needs more miracles. Cassandra, one of her daughters, has started a GoFundMe to raise money for an indoor bike (Manitoba's winters are long and cold) and a special walker. The financial burden of the family, as well as caregiver duties, have fallen to her husband, David. He, too, is a Ninja, but the burden is heavy.

Can you help? If you can, in any amount, click on the link below and give. If not, I totally understand. I'm having that kind of a week, too. But could you share the GoFundMe to your Facebook page so others can see? The more people who view, the more may want to be a part of the miracle. If you don't know how, I will post it on my page and you can share it from there.

We love you, Jenn.

Jenn's MSA/Parkinsonism Journey

The Amazing Small Miracle of Awe-Inspiring People

Wednesday, 7 August 2019

Care Partner Wednesday--The Agony and Inspiration of Elders Losing Independence

What I learned about me

The day my car died, I learned an important lesson about myself. And about the elders I serve. In fact, about life in general.

My car began to reach that unfortunate stage where it was costing me money. You've all been there. You pay for "one last repair" and make the optimistic statement, "It will last one more year." You don't have anything saved, but this next year you'll set aside money every pay, and next year you can purchase a new vehicle. Optimism prevails.

And crashes. Before your next pay, something major and expensive goes wrong, and you read the writing on the wall. You need a new vehicle.

I experienced this a week before vacation a few years ago. I wasn't taking my car when travelling,  but I had a list of errands before going and no way to accomplish them. The dog needed kibbles. I didn't have enough shorts to last a week. I had to get a few special food items. Everywhere I turned, I banged into the frustration of not having my car. Or my independence.

That's when I learned I'm more independent than I thought. My anxiety climbed with each errand that required strategy, organization and begging favours. Even though it was only for a few weeks, it seriously annoyed me.

What I learned about the loss of independence

Then I thought of the residents I serve. Their lack of independence often starts with the loss of the ability to drive, but not for a few weeks--permanently. As they age their losses are compiled. Sight. Hearing. Mobility. Cognitive function. Toileting. I'm struck with the grace and patience with which they face each new challenge.

I remember a special resident who was blind. She saw only vague shadows and followed her sighted friend to activities. She sometimes stated in the most matter-of-fact way, "I can't see" but she never complained. Her sense of humour was intact, and when I'd compliment her on her way back from the hairdresser, she'd chuckle and say, "I'll take your word for it."

When I grow up, I want to be her, facing losses and disabilities with grace and humour, and never complaining.

Remind me I said this.

What we can all learn

I have chronic arthritis, and it has surprises for me every day. Today I might feel a stinging in my right knee, and tomorrow my right shoulder protests. My left hip might cause me to hobble, or maybe my ankle stabs me with a hot poker as I commute to work. My pace is often slowed by these tribulations. As I deliberately traverse the many stairs, I hear small exclamations of disgust behind me. Some rush around and that's fine. It's the ones who stay behind and make their presence known with frustrated sighs who get to me. I have many speeches for them in my head.

Slow down. As a care partner, look and listen to your loved one, and learn. Their pace is different, their challenges many.

But if you watch and listen, you may learn about grace.

Care Partner Wednesday--The Agony and Inspiration of Elders Losing Independence

Credits: photo of red Saturn ion

Wednesday, 10 July 2019

Care Partner Wednesday--Hopeful Ideas to Energize Your New Life As A Care Partner

My wedding day. My parents lived an hour's drive from the church, so the wedding party couldn't dress at their house. Our small apartment on the third floor didn't suit either. Enter Nancy Smail, who offered her attractive house, a sumptuous breakfast and the loving care this young bride needed.

That nurturing act probably seemed small 42 years ago, but it defined the faith and caring of the Smail family. Over the years of raising my family, my husband's death and life in general, I kept in touch with Nancy through friends, and eventually Facebook. That was how I learned of Doug's diagnosis of Alzheimer's. Nancy graciously agreed to share the journey of her early days as a care partner.

"I met Doug in grade nine when I was twelve years old. We didn't date until he finished Queen's University with an Engineering degree. We've been married 53 years. An incredibly intelligent man, he was a professor at Ryerson University for 38 years."

What changes did you see in Doug that started to cause you concern? Did he see them, too? He began to have trouble with mechanical things that used to be easy for him. We had to sell our cottages as Doug couldn't figure out how to maintain them, a task that came naturally to him before as a mechanical engineer. He wasn't aware and still isn't, attributing all the changes to ageing. He had a tremendous intellectual reserve which allowed him to cover up and appear normal to almost everyone.

How long from the first time you began to notice issues until diagnosis? Doug had a stroke in 2006 and our family doctor quickly diagnosed him with Alzheimer's and gave him five to seven years to live.

Tell me about the diagnosis, and your reactions, as well as those of Doug and your family.  I was in disbelief at first. The doctor didn't tell Doug as he said he was concerned Doug would give up hope. My children didn't believe me. My daughter, Dawn, who is a nurse, went with me to the doctor and had the diagnosis confirmed.

Our doctor's refusal to tell Doug caused so many problems. My family wouldn't believe me, and that was difficult. When I broached the subject with Doug, he would say, "Well the doctor didn't tell me." I understand the doctor didn't want Doug to lose hope, but he didn't consider the effect of his decision on other family members. I don't agree with his decision as it prevented Doug and me from strategizing for the future.

How did you find taking on the role of a care partner as well as a wife? Did they conflict in any way? As the disease progressed slowly, it wasn't difficult at first, but as time passed my roles changed and I was more involved in his care. This caused some tension. I first took over paying all the bills, and this was stressful for Doug. He suffered a TIA* (see explanation below) as a result of his anxiety. I also eventually took over all of the driving. It affected our lifestyle in many ways, and at first, I was resentful. However, by God's grace, I have accepted this as a gift from God to fulfill His plan for Doug and I and our marriage.

I was in denial for a long time. Learning to accept came slowly, and I have been losing my husband by degrees for many years now.

What was the role of your friends in your journey?  I told my friends immediately as I needed their support.  They were there for me from the beginning, eager to help in any way they could. They began to accompany me on trips to do activities with Doug and relieve me. I appreciated the much-needed break.

How has your faith affected your experience? I can't say how many times in a day I cry out to God and say, "Help me, Jesus!" Without my faith, I wouldn't be able to carry on and would have suffered burnout many years ago. God told me at the beginning of this journey that He would be with me throughout, and He has been faithful to His promise.

What advice would you give to someone just starting out? What supports were the most helpful? Learn everything you can quickly and connect with solid supports like The Alzheimer Society. Let your partner do as much as they can for as long as they can, and don't be too hasty to take over for them. Doug drove until recently although some thought it unwise. We also took a major trip recently against some people's advice due to Doug's profound memory loss. He did get lost at one point, which was scary.

Be open and honest with family and friends and don't be afraid to tell them that the journey is hard. I recently said, "I am learning joy in the midst of my pain."

*"Transient ischemic attack (TIA) is like a stroke, producing similar symptoms, but usually lasting only a few minutes and causing no permanent damage. Often called ministrokes, a transient ischemic attack may be a warning. About 1 in 3 people who have a transient ischemic attack will eventually have a stroke, with about half occurring within a year of the transient ischemic attack."1


Care Partner Wednesday--Hopeful Ideas to Energize Your New Life As A Care Partner

Wednesday, 3 July 2019

Care Partner Wednesday--How to Begin Your Alzheimer's Journey in 3 (Not So) Easy Steps

I'm writing to you because it's so much more personal than a blog post, and the diagnosis your received last week is as personal as it gets. Alzheimer's. I bet you're still in a fog, trying to assimilate what this means for the rest of your life.

Can I give you some advice? (You know me, I'm going to give it anyway. Why do I even ask?) Just breathe. Give your self as much time as you need to think and pray and grieve. Yes, grieve. You are facing losses and a different life than you imagined. Give yourself time to grieve.

But don't stay there. At some point, you need to square your shoulders and say, "What will my life look like now?" and "How do I want it to look?" You get to decide at least some of that, you know.

Things to give up

As we age, we all bump up against experiences we will never have again. I remember the day I realized I would never nurse another baby. This wonderful, nurturing experience had been a part of my life for the past 10 years, but when my last baby left it behind that season ended. It hurt, and I cried some private tears. (There's that grieving again.) But soon I happily moved into the next season with my children.

There will be areas of your life which will change with this diagnosis. Some change may be immediate, and some you might need to grow into. From what I've seen, as difficult as it might be, making your own decisions about what to give up and when is the best way to go. It gives you power. You are in control.

Take driving, for example. That's a big one. It's your independence, and life is not only complicated but humiliating without a vehicle. You ask for rides and feel like a burden. Your natural inclination is to hang on as long as possible, even though you notice your responses getting sluggish, and you're afraid of anything but the most familiar routes. Then one day, your son comes over and sits you down to talk about your driving, or the doctor revokes your licence. It's humiliating. Why not take control and make the decision yourself? Impress the socks off your family by learning how to use Uber, and voila--you're independent again,

What other decisions might land in the "give up" pile? Perhaps, once you get over the fear of living somewhere different, you would enjoy the freedom of a smaller place. Maybe the lonliness you struggle with could be dealt with through living in community.

After you get over the initial shock, spend some time looking at how you'd like to live your life. Are there decisions you could make which would give you control, and a life that looks more like what you'd like?

Things to decide

While you're on a roll of taking control, there's a lot of decisions you need to make. You're a smart lady, so you may have already thought of some of these, but let's look at them anyway.

  • a will--you probably have one, but does it need to be updated? Pull it out of it's file folder and have a look. Maybe you've added three grandchildren to your family since it was written.
  • powers of attorney--You'll need a POA of care who will make decisions about your care when you can't, and a POA of finance who will look after your money. If you have more than one person, should they be able to each make decisions, or do they all have to agree before a decision is made?
  • Grab yourself a big mug of tea and go sit on the porch swing. You have some thinking to do. When the day comes when you can't live alone, where would you like to live? I don't mean a specific place, because that's a lot to figure out. But what would you like it to be like? How would you like to be treated? What's important to you?
          Knowing I was writing to you, I did some thinking myself. I've discovered over the last few 
          years that I can't live without gardens and flowers. Preferrably ones I can help with. And I don't 
          want anyone getting me up until I'm ready in the morning. And I'd like to have good quality 
          Greek yogurt whenever I want it! The bottom line is flexibility and respect. Take a notepad out 
          to the porch swing and start writing a list of what matters to you. When it's ready, share it with 
          your kids, and make sure they listen.
Gather your tribe

You can't do this alone! Your family loves you and will be there for you, although they will have lots to learn along the way. But what about friends? You're going to need those who can listen and visit and be there when you just need a cup of tea and a chat. Think about who those friends are, and chat with them. Let them know what you are facing and what kinds of care would mean a lot to you.

Look for others, too. The Alzheimer Society has all kinds of wonderful resources, and you may find new friends there.

You still have so much to give, my dear. Alzheimer's is scary, but you can live a full and fulfilled life. Especially with a little planning. And while you're gathering your tribe, make sure I'm on the list.

Your friend,

Care Partner Wednesday--How To Begin Your Alzheimer's Journey in 3 (Not So) Easy Steps

Wednesday, 26 June 2019

Care Partner Wednesday--How To Thrive After A Diagnosis of Dementia

"You have dementia, probably Alzheimer's type."

Time stops. None of the rest of the world exists. At this moment, only you, the doctor and this room matter. The walls seem to close in and there is a strange whistling in your ears. Alzheimer's? It's Alzheimer's?

You already strongly suspected, but the seed of hope still sprouted furtively in your soul. Perhaps an underlying cause could be found. Perhaps a medication would take it all away.

With six words, the doctor reached for that seedling of hope, grabbed it out of the soil of your soul and threw it on the ground.

Hope is dead.

Or is it?

For twenty years, I've worked with frail elderly people, many with Alzheimer's or other forms of dementia. They are the kindest, most delightful friends I have, who care, make important contributions and forgive my mistakes in an instant. Although devastating at first, especially to their families, they don't allow their diagnosis to define them.

Last year, I sat in a packed auditorium and listened to a man describe his journey with Alzheimer's. He'd experienced losses, and they weren't all memory. His wife left and took his dog. His children didn't understand. Although supported by friends, his family had all deserted. Yet he spoke to hundreds of people, and said, "I have Alzheimer's but it doesn't have me."

Those words resonated with me. No matter what disease someone is diagnosed with, their personhood remains intact. They will change because we all change and grow until we die. I'm not the same person I was at 20, a fact which gives me joy. I've grown, matured, handled challenges and become a better version of myself. This is possible for anyone, even someone with dementia.

I remember a care conference in January with a husband whose wife had just come to my neighbourhood. He lived independently in our apartments and was worried and weary. He asked many insightful questions as he struggled with understanding. Finally, he said, "I just have one more question. Is she going to get better?"

Time stopped. A breath and then another. I looked into his soft blue eyes and said, "No, she isn't."

He looked at the floor. "Is she going to get worse?"

I love my job, but not at this moment. "Yes, she will get worse." He met my gaze and said, "Thank you for your honesty."

"The thing is," I went on, "we believe people with dementia can live full, even happy lives. We want her to have meaning and purpose in her life, attend activities she enjoys and become part of the community. Our goal is that she will have quality of life and feel fulfilled, even in the later stages of her dementia."

Thursday, 13 June 2019

Care Partner Wednesday--5 Simple Strategies To Care For Yourself When You Don't Know How

Welcome to your flight care partner journey. Fasten your seat belts because it's going to be quite a ride. There are many instructions, but here's the most important one. Put your own oxygen mask on first.

We've all watched or tried not to watch, the boring movie about seat belts, exits by wings and washrooms. The oxygen mask falls from the ceiling for no apparent reason and a mother calmly puts it on her child first.

The picture this paints seems unrealistic. What harried parent wouldn't grab for the mask, screaming, "We're all going to die!" Still, it makes me think.

Why do we have so much trouble putting our own mask on first?

Applied to care partners, why is it so hard to take care of ourselves?

Here are some reasons given:
"I don't have time."
"Compared to my loved one's pain, my complaints are small and unimportant."
"My head is so full of the details of their care, I forget about myself."

These aren't excuses. Each of these and other statements are legitimate. Caring takes gobs of time and heaps of headspace. But consider this:

An oft-cited 1999 study found that caregivers have a 63 percent higher mortality rate than non-caregivers, and according to Sanford University, 40 percent of Alzheimer's caregivers die from stress-related disorders before the patient dies. 1

Sobering, isn't it?

Here's the bottom line:

Look after yourself or you won't be here to look after your loved one.

How do you do it? It's nothing you haven't heard before, but with statistics that high, it bears repeating.

1. Get Enough Sleep

Everyone is different in the amount of sleep they need, but it's a good guess that you aren't getting enough.

  • Don't stay up to get things accomplished when your loved one goes to sleep.
  • Take a nap when they do.
  • If they wander or are wakeful, hire someone for several nights a week to be with them while you sleep.
2. Drink Enough Water
  • Fill a large water bottle with water and ice and take it with you wherever you go. Flavour it if you have trouble drinking water as I do. 
  • When it's empty, fill a large water bottle...
3. Eat Healthly Food
  • Don't bring junk food into the house, except for a rare treat.
  • Make sure there are healthy options of finger foods available that you can grab on the run.
  • When you are able to cook, make larger batches and divide into meal-sized portions for freezing.
  • When you don't have time to cook, have simple options that are quick to prepare and easy to grab on the run, such as fish sticks, cheese, cut-up fruit etc.
4. Physical Health
  • Keep doctor's appointments for yourself.
  • Deal with any physical issues. Don't put things off.
  • Exercise, even in small increments. Use the stairs instead of an elevator, or park at the far end of the parking lot.
  • If you have a friend or family member staying with your loved one, resist the temptation to run around like a crazy person getting things done. Use the time for you and take a walk. Let nature speak to you.
5. Emotional/Mental Health
  • Acknowledge your feelings. Are you angry? Depressed? Frustrated? Name what it is you are feeling so you can begin to deal with it.
  • Talk to a counsellor. Perhaps a pastor or even a paid counsellor can help you walk through this time. It's always wise to get help.
  • Find a support group. Everyone needs this. Your friends and even your family may be well-meaning, but there's nothing on earth like talking to someone who understands.
  • Be honest with your family. Tell them you need help. If they can't supply it, perhaps they would be willing to help pay for it.
  • Look for community resources--respite care, day programs, special activities.
  • Talk to a friend. Even if they aren't in the same situation and can't totally understand, they cvan provide a listening ear.
  • Keep your sense of humour. It's a key ingredient to keeping your sanity.
  • What gives you a sense of purpose and fulfilment (outside of caring?) Spend some time each week doing that.
Remember--put your own oxygen mask on first!



Wednesday, 5 June 2019

Care Partner Wednesday--The Shocking Truth About Care Partner Trauma

Two flights of stairs stretched below me as I juggled my immense black suitcase, a purse and my lunch bag. So far I'd stuffed the suitcase in my car, drove to the station and hauled my bags on and off the train. But now the staircase loomed. Half my journey still awaited me, my shoulders ached and I wasn't sure if I or the suitcase would bump down the stairs next.

I'm notorious for trundling to work with heavy bags, but the day I packed the entire ingredients for Irish Stew for 50 into my oversized suitcase, I learned a valuable lesson. Streaming sweat and screaming muscles are the results of carrying a massive burden alone. The ensuing trauma is real and damaging.

"An oft-cited 1999 study found that caregivers have a 63 percent higher mortality rate than non-caregivers, and according to Stanford University 40 percent of Alzheimer's caregivers die from stress related disorders before the patient dies." 1
"What's the alternative? I need to care for my loved one."

You can. The key is to share your burden.

What Does the Trauma Look Like? 

Do you consistently feel overwhelmed,  angry, irritated or exhausted? Do you feel isolated by your care role, and have you lost interest in activities that used to excite you? Is sleep elusive and are your physical problems mounting?

You may be experiencing care partner stress.

Stress of any kind which comes from many sources and escalates soon becomes a trauma. What kind of symptoms should you look for?

  • Depression--everyone struggles with grey days, but when they string together into a continuous stormy sky, you need help
  • Continual sickness--Are you always coming down with something, fighting an infection or struggling with an illness?
  • Anxiety--is your "worrier" working overtime, so you never have peace?
  • Are you gaining or losing weight no matter what you do?
  • Stress puts you at higher risk for chronic diseases such as diabetes or heart disease.
  • Trouble focusing. Your thoughts are scattered and you have trouble completing a task because your mind is like a handful of marbles dropped on the floor. You sometimes worry you are developing dementia.
  • Excesses which were never a problem before--overeating, alcohol consumption, smoking etc. Looking for relief from stress in the wrong places.
  • Resentment

 What Is The Answer?

In taking an honest look at the problem, I've painted a bleak picture. If you suffer from several of these symptoms, even if they aren't continual, you need help.

The good news is found in community. You aren't alone. "Tune in" next week as we explore ways to share your burden.


Care Partner Wednesday--The Shocking Truth About Care Partner Trauma

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?

Wednesday, 24 April 2019

Care Partner Wednesday--Sign Up for the Newsletter


It's new, practical and full of ideas you can use as you navigate the tricky world of the care partner. Click the link above and sign up for my new monthly newsletter.

Each newsletter will contain links to three blog posts, five quick tips for some aspect of your care partner journey, and a recipe. Something healthy, quick and easy that a busy care partner can put together in no time.

Here we go:
                 5 Reasons to Sign Up for the 5 Tips Newsletter

1. Valuable information for care partners from someone who has "learned in the trenches," probably made every mistake possible, and grown.

2. A wide variety of topics covering every aspect of eldercare.

3. A sound philosophy. Care should be person-centred, respectful, reciprocal and creative. Elders need purpose and given the opportunity to contribute.

4. Practical advice that can be applied easily.

5. A sense of humour maintained in every situation. Being a care partner is hard some days and impossible others. Uphold your sanity through the ability to see the funny side of the ridiculous. Learn to not take yourself or today too seriously.

The first volume will come out the end of this week. Make sure you sign up to receive the newsletter monthly.  Do you know someone who is walking the care partner journey? Tell them about it.

Here's the link again, because you don't want to miss this!

 Care Partner Wednesday--Sign Up For the Newsletter

Wednesday, 17 April 2019

Care Partner Wednesday--"But I Don't Drink Water!"

"She's dehydrated."
The hospital nurse's tone spoke volumes and her message was clear. The resident we sent to the hospital was suffering from dehydration on our watch, so obviously we gave terrible care. The judgement was in her voice, the look on her face and the stance of her body.

I wanted to punch her. Hey, I'm human, too.

She didn't see the multiple times a day we encouraged fluids. The various attempts to hydrate.

Dehydration among the elderly is a huge problem, and it causes multiple problems in the body.
Why does it happen?
  • Because of problems with incontinence, elders are reluctant to drink enough in case they can't make it to the bathroom in time. This is especially true later in the day.
  • Many people suffering from heart disease require diuretics to control excess fluid retention. This results in urinating more, which can result in incontinence. See above.
  • Some elders don't experience thirst, even in warm weather, like they did when they were younger.
  • Memory issues can make it difficult to remember to drink.
  • Illnesses such as vomiting or diarrhea can cause dehydration quickly if a person is borderline, to begin with. Many elders live verging on dehydration.
  • Some elders in the latter stage of several diseases have swallowing difficulties, which makes drinking difficult.
How do you know if your elder is dehydrated or verging on this state? Blood work will indicate immediately if someone is dehydrated, but certain signs are signposts to indicate a problem.

Signs of dehydration
  • dark coloured urine is a sure indicator. If urine is concentrated, there isn't enough fluid going in.
  • infrequent urination
  • dizziness or weakness
  • low blood pressure
  • sunken eyes, or skin, when pinched, that holds the shape of the pinch rather than plumping back
  • increased confusion
  • increased heart rate
Of course, the difficulty is that most of these symptoms could be indicators of any number of problems. But if you suspect, push fluids and see if the symptom disappears.

What problems does it cause?
  • constipation
  • urinary tract infections
  • dizziness and weakness can lead to falls
  • kidney stones
  • increased confusion in people with dementia
How much is enough?
Seven cups of water a day is suggested for elders.

How do I do that?
It sounds daunting, doesn't it? Here are a few tips:
  • It doesn't have to just be water. Some people detest water and refuse to drink it. Any fluid that is enjoyed (tea, coffee, juice, milk etc. counts toward your total fluid intake. Alcohol has a diuretic effect and should only be consumed on occasion, and soda should be limited (although this generation generally doesn't enjoy soda.)
  • Try adding flavouring to water, which can be bought at the grocery store in multiple flavours. Or make "fruity water" as pictured above with cucumber, mint, strawberries etc. It's remarkably flavourful and refreshing.
  • Any fluid counts. Soup, pudding, ice cream.
  • Try offering fluids of choice on a regular basis, and toileting regularly if this is a concern.
  • Go outside. There's nothing like fresh air and sunshine to work up a thirst. 
  • Set the example. Have a drink together several times a day.
I have no scientific research to back this, just anecdotal. When I get used to being hydrated, I get thirsty more frequently. It feels as if my body enjoys the feeling of being well hydrated and sends out signals more quickly, telling me to drink. 

As warmer weather approaches, keep hydration always on your radar.

Care Partner Wednesday--"But I Don't Drink Water!"