Many families have to contend with the question of whether their elderly parents are developing dementia and what to do about it. This is painful for many possible reasons; it is sad to see one's loved ones declining in their cognitive abilities, starting to present a danger to themselves, and becoming more emotionally troubled. Furthermore, adjusting to this new reality may require major life changes and sacrifices. It is also often very difficult to know what to do, because there is often no cure, and changing one's parent's situation will upset them and cause them confusion. So it is very tempting to just hope for the best and wait until there's a crisis.
Evelyn McLay and Ellen P. Young argue in Mom's OK She Just Forgets that it is better to face realities sooner and take action to help your loved one live a safer, more comfortable life. They consider the many ways in which families engage in denial about the impairment of their loved one who has dementia, and they provide plenty of helpful suggestions about how to come to a more realistic position. Both authors have plenty of experience in dealing with Alzheimer's disease, and they draw on it to describe the many ways in which families have a hard time accepting the realities of the situation, and they draw on their experience to give readers many ideas about how to best adapt.
One of the major problems families have is in getting an initial diagnosis, especially in the early stages of dementia when there could be a variety of explanations for someone forgetting information, getting unreasonably anxious or angry, mislaying everyday items, or losing their way in familiar surroundings. McLay and Young are a little quick to label people's uncertainty about what to do as denial. Diagnosis is always difficult and there are quite high rates of misdiagnosis. It can be especially difficult in patients who already have other mental illnesses. (One recent piece of positive news from scientific research is that patients who are already on the mood stabilizer lithium could reduce the risk of Alzheimer's.)
Once a family has come to acknowledge that a member has Alzheimer's, there's the question of what to do. McLay and Young emphasize the importance of getting family understanding and cooperation, and urge that people join support groups early on. It is important, they say, for caregivers to look after themselves. They devote several chapters to how to solve problems making the care of the loved one easier, discussing communication skills and reducing the incidents of anger and frustration. They emphasize how important it is to be flexible as the condition of the loved one changes, and why caregivers should not cling rigidly to old ways of doing things. Often problems will be avoided by finding new ways to carry on family traditions or meeting people's desires.
It is slightly shocking how ready the authors are to recommend lying to people with Alzheimer's where they stubbornly stick to their false beliefs, but their point is that it is pointless arguing in such cases. So, for example, when Evelyn McLay's mother-in-law wanted to 'go home' and packed up all her belongings in readiness to do so, did not tell her that she could not move and she had to stay in the same apartment. Instead, Evelyn told the older woman that the movers had been delayed, and they would not be able to come until the next day. The woman then helped Evelyn put things back where they belonged. In normal circumstances, lying to a family member in this way would be disrespectful, but when the person has moderate or severe dementia, it is better to avoid a fight which would be painful for everyone involved.
Other chapters address when it is too dangerous for a person with Alzheimer's to be driving a car, when to make decisions about getting help in the home, how people who live a long way from their parents can be involved in their care, the value of getting a parent into day care, when it is time to move a parent into assisted living or some other residential accommodation, and more. There are resources and videos listed at the end.
Mom's OK She Just Forgets does not give every solution to every problem in dealing with Alzheimer's; that would be impossible. However, it does give suggestions about how to search out information and support when facing problems in caregiving. It does a good job of explaining the psychological difficulties for family members regarding decision-making. This would be a good book for people just beginning to identify a case of Alzheimer's in their family, or those finding that the family is having a hard time making decisions.
© 2008 Christian Perring
Christian Perring, Associate Professor of Philosophy, Dowling College, New York.
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