First, if you are offended easily by language or thoughts about language, this is the time to stop reading and go on to something more comfortable and easily assimilated.
There are some thoughts that have been swirling around in my mind and some things happened yesterday that concretized them In no special order as I remember them.
It is not that there are more on-the-fringe thinkers in this world than before, it’s just that social media makes it possible for these fringe adherents to aggregate and become visible. This is both a negative and positive result. Negative in that their sometimes-wacky statements reinforce each other and then each of those involved gets some strokes out of it. Positive in that I get to laugh more often. These fringe groups often aren’t homogeneous; there may be opinions that are diametrically opposite but just the shared feeling of being out on the fringe and against the main stream thought makes them feel united.
It is possible that there is no idea, no matter how wacky and without evidence that will not draw some sort of agreement and support in the appropriate FB support group. Some of this may be that both caregivers and PsWD really are helpless in the face of the lack of available help and the progress if these diseases is relatively slow, compared to something like a lightning bolt from Zeus, and so people have time to let their thoughts and hopes run free, unconstrained by sense, common or not. Some of this is compliance bias; the caregivers or the PsWD really, really want to do something and really really want the disease to get better – and so they see improvement.
Some of the ‘improvement in health’, particularly with the nutrition-based solutions may also be because the negative effects of poor diet is additive or even multiplicative to the disease process. If you eat a bad diet, you feel bad and unhealthy. If you improve your diet, you will feel better and that MAY affect the underlying disease. Some diseases are affected more by diet and exercise than others, diabetes, for example. You can eat well and exercise more and reduce your need for insulin but no amount of seeds from some magic tree will cause non-functional pancreas to function again. Since I’ve been doing all the shopping and cooking (along with our caregiver who actually does more cooking than I) we have a big veggie salad and fruit salad every day. We eat less and, nominally, my wife’s health is better. She no longer complains of knee pain (she was never overweight), does not get hives from eggs not bloated from gluten or dairy. She is, however, getting a bit crazier every day and still dying from FTD.
The term ‘crazy’ reminds of the last thought that hardens into a conviction.
Long ago I realized that there is an almost irresistible urge for individuals and groups to try and exert their influence over others – or even just to compete with others to win in whatever competition one is in.
In the FB groups associated with the dementias or spousal caregiving, there are lots of little competitions. Someone will start a thread about how their loved one did such and so. There will be a string of responses trying to give comfort and then someone, or more than one, will pop in with their even greater tale of woe, attempting to draw attention or sympathy – the agony olympics.
Yesterday I had seen a kerfluffle over the use of a specific word on one FB group (the word being suffering as used in suffering with dementia.) and, not being attentive to where it was and not skilled at Facebook-ing I couldn’t locate the original discussion and so I asked in one associated group what the issue was with the use of the word.
Well, the response was just amazing and illuminating. First I was told that particular word was stigmatizing and the source of this information was a survey among those who were being stigmatized, then the source was a well known advocate who somehow knew what all those being stigmatized thought about this word and then it turned out that a Canadian advocacy organization had published a seven (7) page document on words and phrases to be avoided because they stigmatized those who had the disease.
Sometime during the discussion I said that I didn’t respond well, if at all, to being told how to talk if I could see no inherent problem with the words. Others agreed and thought the word was fine.
Well, then the discussion turned to how heart-broken some people were that we were so resistant to being instructed about the right way to speak. Heart-broken! Really?
The question was then posed as to whether I (or we) was criticizing or ridiculing. I was torn about which one I meant, so I took a few minutes to actually read the article from the Canadian advocacy group. That article immediately convinced me that either the Canadians had an excruciating and subtle sense of humor or that the advocacy group had too much time and money on their hands.
Some examples should give the flavor of that type of self-aware attention that is given to the damage that words in the wrong hands can bring. For example, instead of using the term ‘sundowning‘, I should say ‘the person with the disease ‘seems to become agitated or nervous about 5-6 PM every day‘ or whatever the specifics are for the person I am referring to. Of course that becomes a problem if I am referring to that general phenomenon where PWD ‘respond to the change in light or time of the day by altering their behavior, becoming more restless or upset or even the reverse, becoming more lucid and interested.’ That seem a bit more cumbersome that saying ‘sundowning‘.
How about the alternative to ‘Support Group Leader‘? The problem with that term, according to the document, is that it ‘sounds “expert” and disempowering of group.’ Instead the “Person-Centred Language’ should be Group facilitator (e.g. person’s role is not to be an expert but rather to facilitate group discussion) A good facilitator is neither a content expert nor a lecturer. A facilitator guides a process that will help participants to reach their stated goals and objectives within the time allotted.’
So, if I speak correctly, which will mean having that document available and referring to it at all times, I will be doing what?
To me, and perhaps to many of us who spend much of our day just trying to hold on, to keep the status quo actually quo, this emphasis on the correct language because of some ambiguous claim about stigmatization is weak sauce besides the real issue that our loved ones, or ourselves, have a disease without a cure, a disease that ruins as much as possible about our remaining days, a death sentence.
Now let me explain the picture at the top of this article.
A boxer recognizes his real enemy in the long run and his needs – strength, endurance, tenacity, the willingness to endure.
Our enemy is the disease and not words that others, although caring, might speak – the disease and the daily grind of care.