Monthly Archives: March 2014

Going home

This morning my partner said, “This Alzheimer’s stuff is terrible. You get a cold, you are stuffy for a few days, but this just goes on and on.” (My sentiments exactly!)  “It is so hard to try to find my words especially when I am talking to strangers.”

Later he came and said hopefully, “well, maybe when I come back from Ontario it will be better.” I had him repeat the phrase because I was so startled.

Wanting to live in Ontario (his boy home home specifically) and being very vocal about it has become a marker for how uneasy he is in a situation. Now this adds another dimension to all that.

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Alzheimers Society workshop

This weekend (March 29, in Courtenay) I went to the Alzheimer’s Society of BC workshop on Dementia, the disease, communication, and behaviours. I had taken several of these workshops but the first couple I spent in tears and probably got very little out of them. This time, I was able to take notes, and here are the items that struck me as highlights. I am thinking that if and when I hire more caregivers having taken some of these workshops should be required, because they do help train against the most common communication mistakes.

I really think there should be some sort of certification for dementia care workers because I have seen so many mistakes made with my partner, including the hundreds I have made myself.

  • More than 70,000 people in BC have dementia, 1.5% of the population, with 15,150 new cases diagnosed each year. I could only think of all the agony this represented, and wonder how it could be made easier for all of us caregivers. Jane noted that a workshop like this would have attracted at most six people just ten years ago, and now the room was packed with over 50, and she thought it was because at least the stigma is slowly lifting so people can talk about it.
  • Caregivers are providing more than 33 million hours of unpaid care, and yes caregivers do tend to die before their charges.
  • Dementia is a group of signs that show the brain is malfunctioning, “decline of cognitive abilities” or in short, Brain Failure.

Although there are stages in the disease’s progression, each patient is somewhat different, as different areas of the brain are damaged.

One change is that over the course of the disease, vision narrows until all peripheral vision is gone; to me this explained many of the shrieks and moans when I am driving my partner around. Some of our group have just stopped driving their husbands anywhere because of that fear and criticism.

Jane used an analogy to a broken arm — if someone walks in with a broken arm, you don’t tell them to just try harder to use it. Our friends have broken brains, but instead of recognising it, we judge that if it was ok yesterday, it should be ok today and they need to smarten up.


“Every person, regardless of their losses, maintains a core of self that can be reached.” Yes, you should visit even those who do not necessarily remember your name, because YOU know who they are!

In general, for most people, 7% of meaning is derived from words,38% from pitch and tone of voice and 55% from body language. In general, social conversation is different for men and women, with women following multi-threads with many links often simultaneously, and men focusing on the chosen subject.

People with dementia are constantly looking for cues, and become hypersensitive to body language and tone, with no judgement on whether their perceptions are correct.

Rules of thumb

  • Give EXACTLY the SAME simple answer over and over
  • Do Not argue
  • Distract
  • Focus on feelings “…People will forget what you said or did….but people will never forget how you made them feel.” (Maya Angelou)
  • Show as you talk
  • WAIT for response (it can take a long time — up to hours or even days).


  • Respond to feelings not the stories (or the not-so-facts)
  • Provide distraction or ignore
  • Maintain a positive attitude with humour
  • Be creative and patient
  • Use therapeutic fibbing (emotional truth – loving dishonesty) but Keep It Simple
  • Don’t play Prove It games (in fact they are not nice any time.) People with dementia feel stupid and crazy – we want them to feel ok so don’t go around proving them wrong.
  • And again, NO correcting. Imagine if you already knew something was wrong and people were correcting you all the time, especially somewhat the way we might correct a child. It would definitely put me in a bad mood!
  • Caring and respect go a long way
  • Reinforce existing abilities and emphasize past accomplishments
  • Protect from feelings of inadequacy
  •  Offer choices, but limit them

Communication Don’t

  • Don’t Argue
  • Don’t order someone around
  • Don’t set up expectations for their abilities that cannot be met
  • Don’t ask open-ended questions (Eventually even two choices are too much for them to handle)
  • Don’t be condescending
  • Don’t talk about the person in front of them, even around the corner. Take it outside.
  • Don’t remind the person that they have forgotten
  •  Don’t take it personally


  • There is a reason, cause, and meaning for every behaviour
  • Behaviour can be influenced (problem solve it) by responding
  • Try to determine the immediate cause
  • Don’t apply logic!
  • AGREE with the patient
  • Accept blame (people with dementia love it when other people forget things.)
  • Talk positively about the future
  • Shift to a familiar activity


  • Is this behaviour that needs to be changed? Safety being the main concern.
  • So What? (s this MY problem?
  • Apply the 5 Ws – what, where, when, who, why?
  • Four areas to check – Physical, Environment, Task related, and Communication.
  • Try the Age Line Exercise – Ask How old are you – find out where they are in time and work with it.

(Reading: Talking to Alzheimer’s, Understanding Difficult Behaviours, The 36 Hour Day)




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Can’t win

This is just a disease where you can never win. No matter how carefully you manage and manage and cope and cope, eventually it all crashes into a madness and chaos. I guess that’s why they call it dementia.

And this is not about guilt, it is simply accepting that one’s very best is not ever going to be good enough. It is about going in one’s mind to a quiet place where you step back and watch the train crash. (Ew –what a bad metaphor — considering I just booked tickets on the train to go visit our family one last time!)

Forgot to make sure my dear one (spoken sarcastically) swallowed his pills last night, and was kept up all night with his insane fretting and worry — the details don’t matter — it was just cuckoo land. I am exhausted, emotionally and physically.  This morning, I see no way out of this and no way to keep up my strength. Sweetie, of course, has gone back to bed because he is so tired. I shouldn’t let him, but, frankly, any time he just is quiet for awhile is a bonus!

And time goes slowly by, and my own vitality with it.

Yesterday was a tough day — we went to see the urologist about the prostate cancer, which is just sitting there quietly slowly growing, and the doctor said, anything we can do now will make his dementia worse, and given his age (almost 80) I think you should just stop testing even. What happens will happen.

It is like going into a black hole, to accept that, and yet, rationally, it is true.

I do not know if “the patient” understood the conversation, but I think, deep down, he did, because he was awfully quiet all evening. Until that is, it was time to sleep!



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Who are you/

Was he joking when he asked over and over this morning, “Who are you?” I was so unsure that I didn’t dare ask.

This has happened to several of the women in the Caregivers’ group just lately — like an epidemic…..and we are all trying ot get our heads around it.

I know he has not recognised me occasionally in passing once in awhile, and once for a whole morning about 8 months ago. So I suppose some day, if not today, it will happen to us – he will not know who I am. How very strange. Is there still an “us” if one of “us” doesn’t know it?


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