By the time a person is diagnosed with a dementia or other illness, they may have had it for many years. Their caregivers have already been through a long and confusing journey alone. A recent experience with a client illustrates the impact that journey can have, and where attention needs to go.
One of our Care Managers (CM) interviewed an 84 year old man*, married over 55 years. His wife was diagnosed with Alzheimer’s in 2005. Our CM was reading her history from the mental health team and the hospital, and noted that it said she had a difficult personality and argumentative, and that she used to drive away friends or just couldn’t keep them.
As the CM was taking his own history for Diamond Geriatrics, the husband described a woman who had been outgoing, social, talented, a great organizer, with many friends. Thinking back to the previous records, the CM asked the man about the difference between the woman he was describing, and the woman described in the charts.
“I am talking about how she used to be,” he said.
So the CM thought for a minute and asked about when she had started to change.
“About ten years ago,” the husband said.
“And before that, she was the way you have just been describing her?”
“Yes, we used to travel, go out, play bridge, and had many friends, and then she stopped wanting to do those things and she got difficult to get along with.”
So our CM said to him, “Mr. M—, it sounds to me like she wasn’t just being difficult or mean or hard to get along with. It sounds like even ten years ago she was in the very beginning stages of her Alzheimer’s Disease.”
The husband was quiet for a minute,and the CM could see a change in him, as though a burden was being lifted from his shoulders and a shift in his understanding of what had been happening for several years before her diagnosis.
“Nobody told me that,” he said.
The CM explained to him that often in Alzheimers or other types of dementia, the first signs may not be memory loss. They may be changes in personality, in emotional expressions, in falls, or in behaviour. Changes may first be seen in what is called executive function–the ability to plan, carry out tasks, reasoning, or judgment.
It is difficult to describe how important this was to this man. It was as though he had his wife back, that she was not just being difficult, or unhappy with him or their relationship, and that she had not emotionally deserted him. He had not been suffering from abuse, he had been living with someone who had an undiagnosed disease.
This story illustrates why early diagnosis and counselling is important–for the family, as much as for a person with dementia. It shows why everyone who works with older people or their families needs to know the signs of dementias, and also know that these same signs may be symptomatic of something else.
Most likely, no one took the time after the diagnosis to look back far enough with this man and talk about what he had been going through. As noted above, dementia (or other diseases) may have been coming on slowly , unnoticed or undiagnosed for years. At some point subtle effects and signs begin to appear, affecting caregiver and the individual him/herself, but with nothing to put those effects and signs into a framework that makes sense. Often caregivers and families talk about, or receive support for what they are currently going through and not about the damage which has occurred during all that time. This vignette shows how important it can be to revisit family histories, sort out what has happened and how it has been affecting family members as well as the person directly affected. This can help to repair relationships and bring forgiveness and peace.
For More on Symptoms of Dementia
- The Alzheimer’s Society of Canada: http://www.alzheimer.ca/english/disease/dementias-intro.htm
- The Alzheimer’s Association: http://www.alz.org/index.asp
- About.com: www.alzheimers.about.com