Wednesday, 31 July 2013

Caregiver Wednesdays- Communication pt. 1

Enid doesn't talk much. Dementia has stolen many of her words. They come slowly and with effort.
But Enid communicates.
Because of a swallowing issue, she eats only soft or minced foods. Her fluids are thickened. Sometimes, her choices are few, and she doesn't have much enthusiasm for eating. But today, she ate a strawberry crepe. It was soft enough to be tolerated.
When she tasted the first mouthful, her face lit up, and tears sprang to her eyes.
Enid communicated!

As dementia progresses, communication becomes more difficult. Words are harder to find to express thoughts, and both parties can be frustrated. It's important to recognise there are many aspects to communication, and words are only one feature. Learning to communicate with someone with dementia means you must become a student of the person. Is that "worried" look really worry, or is it pain, or confusion, or constipation? All are possible.

To begin our discussion of communication, I want to challenge you to look at the world through the eyes of the person with dementia. Each of these won't apply to everyone, or at every stage, but there is truth here.

The World from My Perspective

  • Sometimes, the world is clear, and I understand what is happening. Sometimes, in the middle of an enjoyable experience, I don't know where I am or how I got there. This frightens me, and affects how I communicate.
  • If I can't get my ideas across, I think it's your fault. How can you be so dense? I may get angry.
  • I may communicate only with body language. It's still communication.
  • Time means little to me, so I may be living in a different time today (such as remembering the house I grew up in as "home")and another one tomorrow. Or five minutes from now.
  • I may have all kinds of ongoing physical challenges beside my dementia. My sight, hearing and mobility may not work well. I may have issues with my heart and breathing. All of these affect my ability to communicate.
  • I react to stimuli differently because I have dementia, and I don't always react in the same way. Something that usually gives me pleasure, may one day (because I am tired, or not well, or all kinds of other reasons) upset me or make me angry.
  • a lot of things that used to be true of me, aren't any more.
          Even with all of this, I'm still here. Inside, in the core of me, I am still here. 
          Your challenge is to find me.

Communication challenge:
As you go through your day, watch the non-verbal cues people are giving. What are they saying? Watch yourself. Is there a non-verbal way you respond? (Here's a hint about me--when someone hurts me, I go quiet and don't meet their eyes.) Explore non-verbal communication with your family and peers, before you try to apply it to people with dementia.

What did you learn?

Wednesday, 24 July 2013

Caregiver Wednesdays: Knowing the signs

                           My mother, Florence Everson, who
                                  died with Alzheimer's at 66

It's always there, in the background. Just there.
Then something will happen. I will search for a familiar word, or put the rice cakes in the fridge or forget an appointment. That's when it sits up and takes notice.

Because my mother had early onset Alzheimer's disease, and I am the age she was diagnosed (although she probably had it for a few years before that--they weren't as skilled at recognising it back then) the fear lurks. I don't think of it every day, but it's always there.

Knowing the signs matters to me. Because I know those behaviours I mentioned are normal, I grin and go on with life. Knowing the signs can allay unnecessary fear, as well as alert when there should be concern.

Poor hygiene
My Dad complained my mother had become a messy eater, and was always spilling things on herself. This was an early sign in our family. Sometimes people resist showers or bathing, and someone who was always immaculate in what they wore starts to look unkempt. Everyone can have a bad day, but we are looking at patterns.

Memory Loss
This is the most obvious sign, but it's important to understand what this means. Surprisingly, a percentage of people with AD don't experience memory loss at first, and this can lead to a misdiagnosis. Usually past memories are intact, and it's the most recent ones that are affected. Anyone can forget some details of a recent dinner party, but when you have no recollection of attending at all, that is a concern.

Sometimes I think, "Did I tell you this, or did I just think about telling you?" Or, "I've told this to a few people, but I can't remember if I've told you." That's normal. Asking the same question or telling the same story over and over again, sometimes minutes after the last telling, is not normal.

Doing Strange things
The minute I opened the fridge with the rice cakes in my hand, I "tsk-ed" myself and put them in the cupboard. My mind was on other things. I often get distracted as I work out a problem, or think out the next section of my novel. We had a pastor once who had the police follow him home because he forgot to pay for his gas at the gas station. (This was in the days before you could pay at the pump.) This happened twice, to his wife's huge embarrassment. He was thinking about a sermon, and got distracted. Distraction is normal, but if you put the dish soap in the freezer, and don"t realise there is a problem, that is a problem.

Word finding
Everyone has those "tip of the tongue" moments. You go to say a word, and it's not there, but it is hiding just behind a corner of your brain. The more you try to coax it out, the more it hides, until you give up and think of something else, and out it pops. That's normal. People with AD have profound difficulties with language, and as the disease progresses, conversation is a tangled ball of wool, where the listener is struggling to find the thread.

You may not notice this one at first, but over a period of months, you may see a pattern of withdrawal from activities that used to bring pleasure, or increased anger with someone who used to be easy going.
Often, the person is aware of a problem, and increasingly frightened by it, which leads to withdrawal. The unconscious thinking is, "no one will notice my problem if I don't spend time with them." Fear of what is happening can also lead to unprovoked outbursts of anger or sadness. It seems to come from nowhere. In reality, the person is shaken to their core with what is happening. Depression should also be explored medically if these signs are present.

This is often the first sign of trouble. When my mother stopped cooking (which used to be her passion) we thought she was just tired of it. It took several months to realise she didn't know how to cook any more. The day she phoned and asked how to prepare a boiled egg, I told her, and sobbed when I hung up the phone. This is difficult to watch. Getting lost in familiar neighbourhoods is another common occurrence. "Familiar" becomes a foreign word as the disease progresses.

Why go to the doctor to get a diagnosis? Many reasons.

It may not be Alzheimer's, and could possibly be treatable. There are other reasons for having some of these changes in your life.

If it is Alzheimer's, there are medications to improve function, and many supports to help you and your family deal with it.

There is no cure at this time for AD. The focus should be on knowledge, and providing the best possible quality of life for the person suffering.

Because even with Alzheimer's, every day is a gift.

Thursday, 18 July 2013

I am bigger than my disease

When a person is diagnosed with a debilitating, progressive disease, it can become huge in their life. For their caregiver, there is so much to learn, it is all-consuming. A new language, how the medical system and the systems of care work, medications, interventions--it goes on and on. If we aren't careful, the disease can become bigger than the person who has it.

It's not. Bigger.

The purpose of this blog post is to challenge you to think in a radical way.

The person you are caring for is still in there, no matter how far their disease has progressed. They still have a contribution to make. They not only take. They can give.

I can still smile
I assist a lady with her meals who has the most amazing smile. I love to say something that causes her face to light up, because it is brilliant. Every time she turns that smile on me, I am blessed.

I can still warm your heart
A gentleman with dementia attended a luncheon with his wife, His confusion is profound, but whenever he attends these kind of events with her, he relaxes and enjoys himself like anyone at a social event. As he left the luncheon, he thanked me, saying, "You fill my life with surprises and my stomach with ice cream." I've held those words close to my heart since then.

I can enjoy
Speaking of ice cream, there's nothing like this delicious treat for calming anxiety. A resident was crying and anxious, and no attempts to calm her were effective. I had just brought out a cart filled with ice cream. "Would you like ice cream? I spoke in her ear. "That would be nice." she said through her tears. A few minutes later, I was feeding her and we were laughing together. It's amazing the power of this simple treat.

I can notice
I tend to wear bright colours to work, especially in the summer. I can't tell you the number of residents, men and woman, who have noticed and commented. Yesterday, and profoundly demented woman turned to a co-worker and said, "I like your eyes."

I can respond
There is nothing like a baby, no matter what your age, mood or mental state. Today, a staff member on maternity leave brought in her three-month-old bambino, and the room just radiated. They talked to the child and gave the mother parenting advice.

I can care
"Where is your lunch? Here, take part of mine." The gentleman whose dementia was far advanced, refused to eat unless he knew I had something, too. It made sense. I started bringing my lunch along.

I can give
Every day, I rub shoulders with all kinds of people with dementia. Sometimes they are fun and we laugh together. Sometimes they are upset and angry. They are often confused, and ask the same question over and over. But every day, without fail, they give to me.

I am richer because of it.

Friday, 12 July 2013

The small miracle of emergency fun

A young couple was sitting in the kitchen, working on their budget as their two young boys played near them. They were discussing their emergency fund, when the three-year-old piped up, "I want that! I want some of that emergency fun!"

Now, there's a concept.

I've never been good at fun. My mother taught me to finish all my work before I had fun, which is an excellent Protestant work ethic principal. It's how I was brought up.

The problem comes with people like me, who never get the work finished. Never. With a demanding full-time job, a second writing career, a house and a husband, there's always something to be done. Preparing items for work, an article to write, a load of laundry-- it's always there. Fun often has to wait. Indefinitely.

But if I had a list of emergency fun things, how cool would that be? I think emergency fun has certain characteristics. The cost should be minimal, and it should be accomplished with a nominal amount of planning. Exhausted? Had a really rough week? Pull out some emergency fun and have at it.

So I made the beginnings of an emergency fun list. I'm sure I will add to it, and I bet my list is different from yours. We have this in common--we need fun in our lives, and sometimes we neglect it.

Ann's Emergency Fun List

(These are not in any order of priority)

1) Time with my granddaughter. She makes me laugh, and she gives wonderful hugs.

 2) Bubbles- I love blowing bubbles. I need to have a really interesting bubble wand on hand at all times.

3) On the bubble theme, there is nothing funnier than putting bubbles from the bath on the top of Bailey's nose, and watching him try to get them off.

4) Go for a walk. Being in nature almost always restores my soul.

5) Exploring. Although I hate shopping, exploring interesting little stores (possibly without buying anything, or very little) is delightful.

6) Cemeteries. I LOVE walking through old cemeteries. It's like participating in history.

7) Read a book, especially one of my favourite authors.

8) A hot bath.

9) Watching a really good movie while snuggled into bed.

10) Sitting and talking together about things that matter. making plans. Dreaming dreams.

"A merry heart does good like a medicine." Prov. 17:22 So pull out your emergency fun and start laughing.

What's on your list?

Wednesday, 10 July 2013

Caregiver Wednesdays- What is Alzheimer's Disease?

My mother was a nurse, and my father a pharmacist. I've worked in a long-term care setting for almost 14 years. I'm not a medical person, but I've been on the fringes of medical things most of my life, and I've learned to talk what I call medical-ese. The medical world has terms for everything, and unless you understand them, it's like a different language.

Emesis is throwing up.
You didn't cut your arm, you have a skin tear. If it's really bad, it's a wound.
And if you have cerumen, it's not a dread disease, it's ear wax. Who knew?

When it comes to understanding Alzheimer's disease, it's easy to get bogged down in medical terms. Let's look look at the definition and break it down.

"Alzheimer's dissease is a progressive neurological disease of the brain leading to irreversible loss of neaurons and the loss of intellectual abilities, including memory and resoning, which becomes severe enough to impede social or occupational functioning." 1

"A progressive neurological disease"--it's progressive in that it gets worse, and there is no cure. Everyone who has lived with Alzheimer's knows that this isn't a steady decline. There are good days where the person functions so well, you begin to wonder if the diagnosis was incorrect. On bad days, however, the fog descends and there are huge gaps in understanding of even the basics of life. When all the days are put together, however, over a period of time, you can see a decline. A neaurological disease is a disorder of the brain, spinal chord and nerves throughout the body. In Alzheimer's Disease, "plaques and tangles" develop in the brain during the course of the disease, causing brain cells to die.

People with Alzheimer's Disease also have lower levels of some brain chemicals that are important in the transmission of messages in the brain. These are called neurotransmitters.

"loss of intellectual abilities, including memory and reasoning." Alzheimer's is so much more than memory loss. It affects the ability of a person to reason and make decisions. Someone with Alzheimer's finds it increasingly difficult to come to conclusions based on arguments or a perceived outcome. An example of this maight be bathing. Some people become resistent to bathing, and no amount of reasoning (you'll feel better, you'll smell better, it's healthy to bathe etc.) will change their mind. They don't want to bathe, and reasoning means nothing to them.

"which becomes severe enough to impede social or occupational functioning." The bottom line is, Alzheimer's changes so much of the life of the person who has the disease. Social masks, which we all wear, often drop away, so that what we might think, the person with Alzheimer's might say. Quickly into the disease progress, the person is no longer able to drive, unable to continue working and may not be able to live alone.

Another medical term (which I've referred to before) is the ADL's. The activities of daily living. These are often referred to because they are the basics- eating, dressing, personal hygiene, handling bowel and bladder functions, mobility. As the disease progresses, the person with Alzheimer's Disease has more difficulties with these basic functions, and needs more support.

Do I paint a bleak picture? At first glance, it is, and a diagnosis of Alzheimer's Disease can be devastating. However, life isn' over, and there can be joy.

Next week- I have Alzheimer's Disease. What can I still do?

Wednesday, 3 July 2013

Caregiver Wednesdays--Understanding Dementia pt. 1

What is the difference between Alzheimer's Disease and dementia?
Can I catch either one?
Does it run in families?
I keep losing my keys. Should I be worried?
I'm getting older, I guess I should expect this.
Can I have "a little bit of dementia?"

This month, we're going to look at Dementia 101.

Simply put, Alzheimer's is a form of dementia, but dementia isn't necessarily Alzheimer's.

Do you remember when you heard whispers about your grandmother going "senile"? That term isn't used any more (or shouldn't be). Instead we talk of people having dementia. Dementia is an umbrella term for a series of symptoms. The most prominent of these is memory loss, but there are many others, including the ability to reason and make decisions, language, and attention span. The main issue here is that it is severe enough to affect what is called the activities of daily living (ADLs). Everyone forgets things at times, or can't find the right word, or is distracted. But when it becomes a pattern that affects my ability to do my job, care for my family (or myself), it needs to be assessed by a qualified physician.

Imagine you had a stomach ache. You had no idea where it came from, but it was making you miserable. The stomach ache is a symptom. You need to know what is causing it before you can effectively treat it. Did you eat something that had gone bad? Did you eat too much? Is it an ulcer? Is it cancer? Until you know the cause, you have no idea how to treat it.

Dementia is like the stomach ache. If you are experiencing a variety of symptoms, such as memory loss, getting lost in familiar circumstances, not wanting to bathe and increased confusion, then the root cause needs to be found. Some forms of dementia, such as those from vitamin deficiency and some thyroid conditions, are curable. Others, such as those associated with Alzheimer's Disease and Parkinson's, are treatable. Symptoms can be lessened for a time, and quality of life can be improved.

Alzheimer's disease and other dementias are not a normal part of ageing. Even though the instances increase with age, healthy cognitive function is normal. You should not "expect" cognitive loss as you get older.

I've heard people say, "He has dementia, but at least he doesn't have Alzheimer's." One is not a degree of the other. AD is the disease and dementia is the symptom. If you have dementia from another source (such as vascular dementia, Parkinson's etc.) it's still dementia, and presents much the same.

You can't have a little bit of dementia. Both dementia and AD are categorised as mild, mid-stage and end-stage or severe. You can't catch it.  If you have a parent, brother, sister or child with AD, you are more likely get it. A gene, called APOE-e4, has been identified as a risk gene. If you inherit it from one parent, you have a 20-25% chance of getting the disease. If you inherited it from both parents, your chances are greater. However, having the gene, even from both parents, does not guarantee you will get the disease.

I have lived with this for many years. My mother died with early onset AD (she was diagnosed before 60) which makes my chances of contracting the disease greater. I am now about the age Mom was when she was diagnosed. I try not to think about it.

Next week-What is Alzheimer's disease?