As family members watch a loved one age, it is easy to be confused into not recognizing how fragile or precarious that person’s condition may be. This month, Elder Voice helps you understand how to assess what you are seeing.
Elsie was two weeks shy of 95 when her daughter, Marie, came to see us, trying to make some plans so that the family could avoid a crisis. She was needing more and more help to organize her time and her day. She would forget appointments unless reminded, she would become anxious if her schedule was changed. Without the daily reminding from the staff at the Seniors community where she lived, she had been forgetting her medications. She became argumentative and stubborn when Marie tried to point things out. Previously she had been fastidious, now she would go several days without changing her clothes and her apartment was cluttered. She still bathed daily, but did not recognize and was not able to handle her little bit of incontinence.
But, Marie said, Elsie was still charming with other people, who delighted in her company. She was still the good conversationalist she had always been and interested in other people. She would often tell many stories of her childhood, family, marriage. She was clear about what she wanted in her life. She was able to tell the doctor about her daily life, and even ask about his! She would go outside for walks every day, but always come back, and would go directly back into her building, if she were dropped off on the right side of the street.
Marie’s dilemma is a common one with adult children. It is hard to figure out how “impaired” mother really is and so not know what to do. On one hand, she needs increasing help and on the other hand, in many ways she seems the same as she had always been.
There are several reasons this is difficult. One, family members minimize or go into denial about what they are seeing because it is so sad and painful for them. Also, it is hard to know how much weight to put on the various aspects of what one is seeing. If they do acknowledge the depth of the decline, they may then have to make the next move which they are afraid the person may resist or become angry about. Last is that at the best of times, dementia is confusing and variable from day to day; family members generally do not know enough about dementia to know how to accurately assess what is “really” occurring.
The key is to pay attention to behaviour, not personality; what someone does, not what they say. For instance, the true picture of Elsie’s needs is not that she is still charming, social, and outgoing and can still tell her stories. It is not that she still enjoys her daily walks, good food, and the company of her family. Rather, it is that:
- Her short term memory is increasingly failing. She retains the old memories, but finds it very difficult to make new ones.
- She has increasing difficulty with organizing herself and her surroundings with,insight, and with judgment. These are what is called executive function.
- She relies on habit and daily structure; when that is disrupted she is unable to cope.
- Her self awareness is impaired.
- She is paying less attention to, and not even noticing things that used to matter.
- Her ability to do her personal care is increasingly impaired, for example, she is making mistakes in dressing, not changing her clothes.
- Her ability to do the practical chores of living is impaired–for example keeping her home neat.
- Her self reporting of her condition, her day, and activities is significantly different than what she is actually doing.
The combination of increasing inability to do personal and practical tasks combined with the decline in executive function are the factors that indicate Elsie’s true condition. She needs significantly more help, without which she will become more and more at risk. The solutions might be more help at home which will be increased over time, or as in Elsie’s situation, a move to a nursing home.
Elsie’s personality is a strength, that helps her through social situations so that she presents very well, but it is also a mask that keeps Marie and the family from recognizing the extent of Elsie’s impairment. They don’t see how she is understanding her world and managing in it.
After having a thorough exam from her family doctor to rule out reversible causes of decline, Elsie’s family should start to make a list followed by two columns, of all of her skills/abilities: her personal care, managing of her environment, and her ability to understand and make appropriate decisions and carry out tasks. They can assign a value from one to five for each area. One is completely able, five is completely unable. One column will mark her present ability and the second,her abilities six months ago. This chart will give her family a black and white picture of her, and help them determine what they need to do next.