Wednesday, 19 February 2020

Care Partner Wednesday--How To Have Demetia and a Fulfilled Life

Remember my friend from a few weeks ago?
A short, gentle man with a soft voice, he'd admitted his wife to our care floor a few weeks ago, and now participated in his first care conference. This meeting, with all the staff who care for his wife giving input, gave him a chance to ask questions. Many questions. An intelligent man, he had no experience with dementia before this and it seemed every day he felt blindsided by some new crisis.

The time drew to a close and I'd dismissed the doctor and several others who had given their input. He turned to me and said, "I just have one more question. I smiled at him, inviting him to continue.

"Will she get better?"

My heart lodged firmly in my throat, I searched for how to answer him. The wild gyrations of my mind could only settle in one place. The truth.

"No, she won't get better. It's a progressive disease, and it will progress." I paused, gathering my thoughts. "Her disease will progress, but you've already seen an improvement in her quality of life, and yours, and I believe that can continue."

He gave me a quizzical look.

"Remember when she lived with you in the apartment and you looked after her. What were the hardest parts?"

"She slept most of the day and stayed awake all night. I was exhausted. And she wouldn't let me help her. She needed help getting dressed and with other things, and she got angry when I tried. And I was afraid of what she'd say in public."

"And have any of those things improved in the weeks she's lived on the first floor?"

"At first it was so hard not to sleep with her. But the reality is, now I'm getting more sleep. And she's starting to be up during the day more. Not every day, but at least half the week. I don't have to care for her and she's learned to accept care from the ladies who help her. She's sometimes still aggressive, but they are better at it than I was. They just go away and come back, and eventually, she cooperates. And it's really nice having dinner together every night. Almost like a date."

I smile at him. ""Our goal is to support you as well as your wife. We want both your lives to be the best they can be. You are welcome any time, and you can tell us about any concerns you have. Feel free to participate in activities together."

He looked puzzled. "You know, I couldn't believe it the first time she went to group exercise. She was never a joiner. And in later years wouldn't do anything without me. But now she goes to music groups and even flower arranging. It amazes me!"

I laugh. "She still wants to sleep all of some days, and sometimes she acts like every activity we suggest is beneath her. But I'm really pleased with how she's becoming a part of the community. There will be physical changes and cognitive ones, too, as the disease progresses. But there will be joy."

He stood and shook my hand. "That's the biggest surprise. I expected all the bad parts. But I didn't expect the joy."

As you go forward in your care partner journey, look for the joy.


Wednesday, 12 February 2020

Care Partner Wednesday--How To Have Dementia Without Letting It Have You

"She's getting older. I guess some fuzzy thinking can be expected."
Did you use these or similar words to rationalize the changes you saw in your loved one? It's common to believe that someone whose age is advancing would naturally experience cognitive changes. We call them "senior moments" and laugh them off until they become more severe.

Cognitive changes are not a normal part of ageing. 

Dementia is a progressive disease which is not necessarily present in an elder. The belief that all elders experience some form of memory loss and it's just a matter of degree and time, is why ageism is rampant in our culture. But that's a subject for another blog.

Dementia is not only a cognitive disease. 

It's never just one thing.

It makes sense when you think about it. The brain, as the epicentre of our beings, controls everything. So if the brain is impaired through dementia, the effects of that are going to ripple through the rest of the body.

Because dementia is progressive, even when it strikes a healthy adult, it will eventually have physical implications. It's important to realize these and understand what can happen in your loved one's body as well as their mind. Add to all this the possibility of other diseases and their implications and you have a complicated situation.

What can you expect?

1) Cognitive changes

  • Poor decision making.
  • Erratic and unsafe driving.
  • Uncharacteristic changes (a tidy person suddenly becomes messy.)
  • Inability to participate in activities which were normal for them before (such as playing cards, reading, other hobbies.)
  • Forgetting appointments etc.
  • Inability to handle money, unpaid bills, abnormally erratic spending.
  • Withdrawal from activities which used to bring pleasure.
  • Eventually, speech may be affected and words may be elusive or come out garbled. In some people with end-stage dementia, speech is lost altogether.
2)  Motor changes
  • Unsteady gait, leading to frequent falls.
  • Eventually, walking without help may become impossible and unsafe.
3) Eating

  • Forgetting that they have eaten, an elder may want to eat all the time, causing weight to balloon.
  • Some crave sweets and diet becomes unhealthy and unbalanced.
  • Many find they have less and less interest in food and little hunger. Weakness and weight loss result.
  • Eating can become messy, and activities which wouldn't have been acceptable before (such as eating with fingers or spitting out food) are present.
  • In later dementia, swallowing difficulties make a diet change to a minced or pureed diet necessary. Your loved one may require cueing or even feeding in order to eat. Eventually, eating may stop entirely, either due to lack of interest or inability to swallow.
4) Elimination
  • Bladder incontinence is usually first, followed by bowel.  The sensation of needing to eliminate is no longer present.
 5) Mood

No two people are alike when it comes to mood and some dementias have the potential to affect emotions more than others. Your loved one may never experience fluctuations in mood, or they may be extreme.

  • Mood swings including anger, aggression, heightened anxiety or withdrawal. Sometimes all in an hour.
  • A tendency toward "sundowning" or heightened emotional expression later in the day.
  • Some people experience an inability to function outside of their "safe" area, so they are uncomfortable outside of their house. As this disease progresses, this safe area may shrink to one room.
6) Sleep patterns
  • Days and nights mixed so sleep occurs during the day.
  • Wandering at night when the person is wakeful, sometimes leading to unsafe situations.
  • A part of night wandering may include hallucinations and delusions.
Not a comprehensive list, this makes the point that the changes you see as the disease progresses can affect every aspect of life. However, as Dr. Bill Thomas says, and I've quoted many times, "If you see one person with dementia, you've seen one person with dementia." Each person is unique and it's important to see them as a whole person with challenges which need to be addressed, rather than someone who is broken.

Your challenge, as a care partner, is to know they have dementia and identify how the disease affects them, but not to allow dementia to have them.

Special thanks to Amy Rockford Hale, R.N.  for her input on this blog.


Wednesday, 5 February 2020

Care Partner Wednesday--How To Break Through the Agony of a Dementia Diagnosis

A short, gentle man with a soft voice, he'd admitted his wife to our care floor a few weeks ago, and now participated in the first care conference. This meeting, with all the staff who care for his wife giving input, gave him a chance to ask questions. Many questions. An intelligent man, he had no experience with dementia before this and it seemed every day he felt blindsided by some new crisis.

The time drew to a close and I'd dismissed the doctor and several others who had given their input. He turned to me and said, "I just have one more question." I smiled at him, inviting him to continue.

"Will she get better?"

The moment you hear the diagnosis, the questions flood your brain in a confused mass. What does it mean? What does the future hold? What should I do? Some questions are so elusive you don't know to ask them until later, but the answers are ones you wish you knew earlier. This month, we will look at Dementia 101 and go back to basics.

Are dementia and Alzheimer's the same?

No. Think of dementia as a huge umbrella with many spokes. It's a weird-looking umbrella, though, because the spokes aren't all the same size.

Alzheimer's Disease
If we think of the umbrella again, a large section of it would be called Alzheimer's disease, as it's by far the most common diagnosis. Alzheimer's is progressive. Although someone with the disease may have a day where they are exceptionally cognitively alert and function well, the decline in their cognitive status can be seen clearly over a period of months and certainly years. Depending on the age of diagnosis, people can live with Alzheimer's for 20 years, although eight to ten is more common. Prevalent aspects are memory loss, especially short-term memory, poor judgement, word-finding difficulty, and the need for more help in the areas of hygiene, eating, dressing and all aspects of daily living.

Vascular Dementia
Although the symptoms may look the same, vascular dementia progresses differently from Alzheimer's. Its source is from a stroke or a series of small strokes called transient ischemic attacks (TIAs) or unnoticed small vessel disease. Because its progression is based on a series of "events,"  it looks like a series of downward steps. The person with vascular dementia will continue stable for a period of time and then will have an "event" which causes a change. People often recover from TIAs, but usually have more than one, and they take their toll on cognition. Each TIA has the potential to cause permanent damage to the brain. The prognosis varies greatly.

Lewy Body Dementias
"Lewy bodies are abnormal aggregates of protein that develop inside nerve cells, contributing to Parkinson's disease (PD), the Lewy body dementias (Parkinson's disease dementia and dementia with Lewy bodies) and some other disorders."1 Lewy Body Dementia (LBD) is another umbrella term for a whole group of diseases where these Lewy bodies are present. Parkinson's dementia is one of these diseases. Lewy body dementia is another.

Parkinson's Disease Dementia
Not everyone who has PD will develop dementia, but about 70% do. The combination of the motor and other challenges of PD and the mental difficulties of dementia make this especially burdensome. Some people experience hallucinations, delusions, paranoia, vivid dreams and other difficulties. Cognitive symptoms begin at least a year after the motor symptoms and usually develop gradually.

Dementia with Lewy Bodies
Under the umbrella of  Lewy Body Dementias, is Dementia with Lewy Bodies. Confusing, right? Someone should have come up with a different name. LBD involves both motor and cognitive decline. LBD is the second most common dementia after Alzheimer's and a correct diagnosis is important.

"She has dementia. What difference does it make if we know what kind?

A significant difference. It affects treatment, medications used and many other interventions.
Some medications that are used to control behavioural symptoms in Alzheimer's can actually make the symptoms of Dementia with Lewy Bodies worse. With correct medication and treatment, someone with LBD can improve and experience a good quality of life.

My friend with the poignant question? I'll share my answer to him in the third blog of this series.

A diagnosis of dementia can bring feelings of panic. Take a step back, do some research, ask questions and talk to other care partners. Support is there for you!


Care Partner Wednesday--How To Break Through the Agony of a Dementia Diagnosis

Wednesday, 22 January 2020

Care Partner Wednesday--The Truth About Interventions for Anxiety

I'm not a doctor. Or a nurse. I come to the topic of the use of medications from a purely social standpoint. Even though I worked in a medical environment for over 20 years, I need to start with that disclaimer, and be careful that I don't come across as an "expert opinion." From a medical aspect, I'm no expert.

What I bring you is the opinion of a care partner who has seen multiple families and situations and had some experience with both medical and non-medical interventions.

Non-medical interventions


When dealing with anxiety, there may be many small issues which might not "cure" the situation, but which could improve some aspects of it. As with many problems, it often takes a many-pronged approach, and it's best to look at the least invasive first.

Become a student of your elder. What makes them more anxious, and what helps them calm down? Loud noises or bright lights were both triggers to my friend from last week. Social situations stressed her out, even something as simple as a group getting together for tea. Any large group gathering was out of the question. We learned she was happiest sitting in the dining area in a dim corner. (Actually, she was happiest stretched out on her bed, but I suggested we keep that activity to night time.)
She enjoyed when a care partner or family member would talk to her, and flourished in one-on-one card games. But should a noisy group of school children troop by, her anxiety immediately began to climb.

Another anxious resident flourished with routine. If her care partner called in sick and she had someone unfamiliar, no matter how kind and caring, disaster followed. She once had to leave the table because a service provider sat with her table mate and a cheque was written. "Doing business" at a meal escalated her anxiety until she had to leave. It's not always possible to control the environment, and sometimes you get surprises as I did that day, but knowing and watching for trigger points can help.

What helps your elder, and what sends them into an anxious spiral?

A few years ago, I knew it would be an effort to get my anxious friend to participate in an outing. I also knew that if I continued to encourage and support, she would go and have a wonderful time. It was worth all the effort to see her enjoy herself.

One day that changed. On a picnic excursion to a park one summer, her anxiety never abated and we all returned exhausted. That day I realized we had turned a corner and that became her last trip. Be aware of the many variables which can change the outcome.


Cognitive-behavioural therapy is usually only helpful to elders who don't suffer from dementia. It involves talking with someone who is trained in these skills and who can help them develop coping mechanisms which can be used in times of stress. Breathing techniques, therapy to discover underlying causes and other relaxation skills can be taught and these approaches can help in times of high stress.


Medication shouldn't be the first or only solution, but it can be effective in controlling anxiety. However, there is no "magic pill." Did you hear me? Medication can help, but it isn't magic. The groups of medications usually used are anti-depressants, anti-anxiety medications and sometimes
beta-blockers. The best approach is to start low and go slow. The lowest dose of the medication is given at first, and the doctor slowly titrates the dosage up until a therapeutic dosage is found. The doctor is dependent on you, the care partner, to give an accurate account of how the anxiety is being affected by the drug.

So many factors can affect how the drug works. Other medical conditions, infections, interactions with other drugs. Doctors also need to be aware of how older bodies process medication and watch kidney function and other issues. All drugs have side effects and together you need to weigh the final outcome. It's tricky.

Another medication which is a relative newcomer is CBD--medical cannabis. Whatever your views on this, it is often effective in reducing anxiety in the elderly. It can be used on its own or in combination with other drugs. Unlike the others, the side effects are fewer and the effects last only a few hours. As such, it's another possibility.

Anxiety can be more crippling than polio. In looking for a solution, the goal is always the same. What intervention or combination of choices will bring the best quality of life? A smile, a relaxed game of cards, an easy conversation with joking and laughter. These are the rewards for an unrelenting search for answers.

Care Partner Wednesday--The Truth About Interventions For Anxiety

Wednesday, 15 January 2020

Care Partner Wednesday--Unlock the Mystery of Anxiety and Find Hope

Immediately after lunch finished, it began.
"Who's looking after me tonight?"
I told her the name of her full-time, regular care partner who would arrive at 3:00 p.m.
"What's she going to do?"
The same things she does every night. Get you ready for bed.
"What if she won't look after me?"
It's her job to look after you, but she also loves you and wants to see you comfortable.
"What if she doesn't come?"
She will be here. She arrives at 3:00.
"Do I have a shower tonight?"
No, no shower tonight.
"Who's looking after me tonight?"

At other times, the conversation would be:
"I need to wash my hands."
We just washed them a few minutes ago.
"But I touched something."
You aren't eating, so they are fine. We will wash them just before you eat.
"I need to wash my hands."
If we washed them again, a few minutes later, the conversation would start again.

Another version is:
"I need to see the doctor."
The doctor isn't here right now, but he sees you every time he's in. Why do you need to see him?
"I'm sick."
How are you sick?
"Just look at me. I'm sick."
What do you think is wrong?
"I can't look after myself."
It's been that way for a long time. You're not sick, you're 93. Often when you get older, you need some help. That's normal.
"I need to see the doctor and go to the hospital."

My friend had the unfortunate combination of dementia, depression and an anxiety disorder. Dementia and depression fueled the anxiety and sometimes sent it spiralling out of control.

Depression and anxiety in the elderly can often be seen as they deal with accumulating losses. Loss of abilities, health, friends and changes in their living situations all can lead to feelings of sadness. These normal emotions can be coped with and overcome with proper supports. But if anxiety escalates to beyond normal, extra help must be offered.

The Problem With Diagnosis

Anxiety hides behind many other labels, making it difficult to diagnose. Often related to a severe life change like the death of a spouse, it can be mistaken for grieving. Someone with obsessive-compulsive disorder may have dealt with it to some degree all their lives and changes just passed off as "that's Grandma." Many people deal with phobias of some kind, so seeing new ones emerge or present ones escalate may not be immediately evident. People with social phobias may be seen as shy or socially awkward, but it's seldom understood as more than a peculiarity.  Some of the symptoms which accompany anxiety, such as panic attacks, poor sleep, headaches and breathlessness can be part of many diseases. Or, some could be a natural part of ageing. Can you understand how diagnosis and treatment can be elusive?

The Problem With Assumptions

People dealing with anxiety are often convinced of two truths.

This is normal, or at least my normal.

There's no way to make it better.

The problem with these "truths" is that they aren't true. If you assume what you're going through is normal and not fix-able, you accept it as your lot in life. What a sad, defeated way to live when resources are available.

The Problem With Anxiety

Do you suspect your elder may be coping with more than normal anxiety or depression?

The first step is to observe. Spend some time with them on several occasions. Symptoms or behaviours can be hidden in brief encounters, but not with repeated exposure. Talk to friends (carefully and discretely) sharing your concerns. Write down what you are seeing and look for patterns.

If your suspicions are confirmed, have a conversation with your elder. Although there may be denial and resistance, come at it from a position of love. "Mom, I've seen you struggling in these ways and I know there are ways to help with that." It may take several conversations and the need for reinforcements, such as other family members or friends, but persist.

The next step should be a visit to the doctor. Even if they regularly see a physician and take medication for anxiety or depression, this is an important step. The doctor may not be aware of recent changes, and medications are tricky. Different medications, dosages and timing can all change the outcome. He/she may need to refer to a specialist or do tests to rule out other medical conditions.

Sometimes pinning down the cause and finding help for anxiety can feel like pinning jello to the wall. This can be the case for doctors as well because the number of variables remains vast. The outcome, a better quality of life, is worth the journey.

Care Partner Wednesday--Unlock the Mystery of Anxiety and Find Hope

Wednesday, 8 January 2020

Care Partner Wednesday--4 Smarter Ways to Conquer Care Partner Anxiety

"You had one job..." Did you know there are whole web sites of people's blunders? We relish each other's mistakes, although I'll admit most are hilarious, or embarrassing.

  • A bag labelled "ice" that's full of popcorn
  • a cup with its handle on the inside
  • a sign which says OEPN
  • a clock hung upside down (how do you even do that?) 
and my personal favourite...

  • the African-American baby doll waving its little white hand.
The implication of saying "You had one job..." is that even the simple task you were trusted with, you blew. You failed and looked stupid to the whole world while doing it.

Care partners almost certainly have more than one job, but the sense of responsibility and the fear of failure can be intense.

The job didn't come with a rule book and learning it can feel like groping in the dark.
Just when you get a handle on it, things change.
Caring for an elderly loved one can be a roller coaster of good and bad days when you aren't sure of anything.
Factors such as medication changes or infection can change everything.
Your heart breaks for the issues they face but the right direction isn't always clear.
"You had  one job..."

Care partners sometimes deal with tremendous insecurity and guilt. They question whether they are making correct decisions. They worry about the future and feel secret fears about their ability to stay the course. Anxiety can overwhelm.

Care partner anxiety is insidious. Yesterday things were going well, but one questionable decision, a small crisis and a sleepless night and confidence and coping skills flee.

Here are a few tools to pack in your arsenal and pull out when your confidence is scraping the bottom and your anxiety is high.

1. Support

Before things get to crisis mode, gather a support group. Yes, I know, I harp on this all the time. Caring feels lonely on good days and when a crisis hits, you need at least one other person to lean on. Better to have a whole group you meet with regularly to learn, share and support each other.

I can hear you saying,  "I can't leave the house to go to a support group." Yes, you can, but for now, Google and find one online. You'd be amazed at how close you can feel to people who live across the country and you've never met. A side benefit comes from your ability to provide support as well. An amazing feeling.

2. Learn

The old adage "Knowledge is power" still holds true. Ask your new support group friends where they go online for information about whatever issue you find challenging at the moment. Do a Google search. Check out Amazon for books on the subject.  Check out your local library. Be discerning of course, and use reliable sources, but learn.

3. Rest

If you only gave your car a few gallons of gas at a time, how well would it run? We all know the importance of rest, but the realities of life and its demands get in the way. Lack of sleep is one issue, but another is the weariness that comes from dealing with chronic conditions. Sometimes you need to get away, sometimes you need sleep, sometimes both. Look for one afternoon or evening a week to get out of the house and do something entirely different. If this means hiring help or using respite, consider it a wise use of resources.

4. Plan

Coping day-to-day can feel tedious. Plan something fun for you and your elder, but adjust your expectations so if it doesn't produce the joy you hoped for, you aren't devastated. Keep it simple.

Every year at Christie Gardens, we have a picnic. Although it sounds complicated, it simply means taking everyone to the park across the street. We also haul the bbq, and although we bring sandwiches
and everyone swears that's what they want, when they smell the hot dogs cooking they change their minds. Families join, hats are donned and the kids in the neighbourhood entertain just by running through the paddling pool. It's both the simplest and the best event and all we do is walk across the street and roast hot dogs.

Fill your arsenal today with these tools to tackle your anxiety tomorrow.

Care Partner Wednesday--4 Smarter Ways to Conquer Care Partner Anxiety

Sunday, 22 December 2019

The Small Miracle of the Next Stop

"Next stop, Melita Avenue."

For just short of twenty-one years, I've heard those words as the bus pulled up to Christie Gardens and I crossed Christie Street in Toronto to go to work. Usually, the bus came late and all of us who stood shivering in the bus stop, or roasting in the summer, complained to no avail. Usually, I lugged at least one bag, sometimes several as I crossed the busy street. Usually, I stood in the centre of the road, waiting for cars to pass because no one bothers to use the crosswalk up the street.

Yesterday, "usually" didn't happen. Yesterday I retired.

I turned 65 in May and in the summer faced the decision which had haunted me for at least a year. I loved my job and couldn't imagine life without it, but the commute to work took a toll on my body. The three hours each day involved a short car ride, then train, subway and bus. In this accessible age, I still struggled with hundreds of steps and my arthritis protested more with each passing day.

 Even at work, although the physical aspects of the job remained minimal, when they occurred I struggled. The days we replaced all the residents'mattresses I wondered if I would survive. Do you have any idea how heavy and unwieldy a mattress is as you drag it down an interminable hallway, into an elevator and down another hallway out the door? Times 30?

As I pondered the decision, I realized my horror of two scenarios. At Christie Gardens, many staff stay for years. We have employees who continue to work after 35 years. No one wants to leave. However, over the years I have been a part of closed-door conversations where I heard the comment "she needs to retire." I didn't want that said of me. Secondly, I didn't want to put my fellow Advocates in a position where they needed to pick up the slack for me because the physical aspects of the job were too challenging. This dismaying situation loomed and I hated it.

I prayed over the summer months. Could I do this? Should I do this? God answered and I made the decision. It ripped my heart apart to contemplate leaving my Christie Gardens family, but I needed to trust Him for the next stop. Many times I asked Him about it. I like to plan, you know? It seemed like a reasonable question. Each time He said, "Trust." Not the answer I looked for but exactly the one I needed.

Peter wouldn't have experienced walking on water unless he'd obeyed Jesus' command to get out of the boat. He didn't know what came next  and the directive must have seemed both crazy and terrifying. I get that. The only saving grace came from the fact that Jesus did the asking. I get that, too.

Here I stand. I look back with overwhelming thanks for all He taught me, for the experiences, the growth and the many wonderful friends. Then I look forward, grasping the hand of the One who helps me step out of the boat.

Now, together, we walk on the water.

The Small Miracle of the Next Stop