From his own perspective, Graboys and his friend, Peter Zheutlin co-wrote a book discussing the devastating effects of such incremental dependency, and loss of personal dignity.
In a recent New England Journal of Medicine (Nov 27. 2008) book review of this book Dr Joanne Lynn describes how "Graboys worried about the effects of his illness on his family, finances, and reputation, but he had enough family, relationships, and resources to support care at home."
She went on to say that "most Americans with similar dependency face impoverishment and institutionalization, chaotic and impersonal services, and routine errors in treatment. Policymakers complain about Medicare’s costs and Social Security’s shortfalls, but they rarely recognize the inadequate supply of at-home caregivers and the inevitable reduction in retirement income, both of which are personal calamities. We do not have a plan that could mitigate these problems,..."
"Graboys and his coauthor present the hard truths of these situations, such as the distress of family members who are caregivers, the potential persistence of a fragile life beyond all predictions, the problem of finding meaning in life when one has serious dementia, the overwhelming financial burdens, and the frustrations of losing one’s social role and memory. Graboys also mentions, but does not quite believe in, the possibility that family life could actually deepen its meaningfulness when members care for one another during progressive disability that eventually ends in death."
"Our society needs the perspectives that are provided by the stories in books like this, since our ability to evaluate the choices that patients and families make may be limited by our lack of experience. The narrative Graboys and his family encountered a profoundly problematic set of challenges as he lost his body movement, his medical practice, and then his memory. Exploration of his account and of other narratives of disabling and fatal illness helps our society to learn which actions in such circumstances are appropriate, which are heroic, and which are immoral."
Also a special thanks to my brother Henry, who furnished the following ideas through his search for how to sensitise ourselves to these problems of ageing and how we can all learn to cope with it and increase our understanding and perhaps ease the discomfort level of our loved ones who may suffer from these.
The following excerpts are from the familydoctor.org
"Dementia: Info and Advice for Caregivers
What is dementia?
Dementia is a brain disorder that makes it hard for people to remember, learn and communicate. These changes eventually make it hard for people who have dementia to care for themselves. Dementia may also cause changes in mood and personality. Early on, lapses in memory and clear thinking may bother the person with dementia. Later, disruptive behavior and other problems can create a burden for caregivers and other family members.
Dementia is caused by the damage of brain cells. A head injury, stroke, brain tumor or disease (such as Alzheimer's disease) can damage brain cells and lead to dementia.
How is dementia treated?
Some causes of dementia can be treated. However, once brain cells have been destroyed, they cannot be replaced. Treatment may slow or stop the loss of more brain cells. When the cause of dementia can't be treated, the focus of care is on helping the person with his or her daily activities and reducing upsetting symptoms. Some medicines can help people who have dementia. Your family doctor will talk with you about treatment options.
Why do people who have dementia become agitated?
The agitation can have many causes. A sudden change in surroundings or frustrating situations can cause people who have dementia to become agitated. For example, getting dressed or giving the wrong answer to a question may cause frustration. Being challenged about the confusion or inability to do things caused by the dementia may also make the person agitated. As a result, the person may cry, become irritable, or try to hurt others in some way.
How can I deal with agitation?
One of the most important things you can do is avoid situations in which your loved one might become frustrated. Try to make your loved one's tasks less difficult. For example, instead of expecting him or her to get dressed alone, you can just have your loved one put on one thing, such as a jacket, on his or her own.
You can also try to limit the number of difficult situations your loved one must face. For example, if taking a bath or shower causes problems, have him or her take one every other day instead of every day. Also, you can schedule difficult activities for a time of day when your loved one tends to be less agitated. It's helpful to give frequent reassurance and avoid contradicting him or her.
What should I do if hallucinations are a problem?
If the hallucinations are not making your loved one scared or anxious, you don't need to do anything. It's better not to confront people about their hallucinations. Arguing may just upset a person who has dementia. If the hallucinations are scary to your loved one, you can try to distract the person by involving him or her in a pleasant activity.
What if my loved one will not go to sleep at night?
Try one or more of the following if your loved one is having trouble sleeping:
- Try to make the person more aware of what time of day it is. Place clocks where he or she can see them.
- Keep curtains or blinds open so that he or she can tell when it is daytime and when it is nighttime.
- Limit the amount of caffeine he or she consumes.
- Try to help your loved one get some exercise every day.
- Don't let him or her take too many naps during the day.
- Make your loved one's bedroom peaceful. It is easier to sleep in a quiet room.
- At night, provide a night light or leave a dim light on. Total darkness can add to confusion.
- If your loved one has arthritis or another painful condition that interrupts his or her sleep, ask your doctor if it is okay to give your loved one medicine for pain right before bed.
Sometimes very simple things can help with this problem. It is all right for your loved one to wander in a safe place, such as in a fenced yard. By providing a safe place, you may avoid confrontation. If this doesn't work, remind your loved one not to go out a certain door by placing a stop sign on it or putting a piece of furniture in front of it. A ribbon tied across a door can serve as a similar reminder. Hiding the doorknob by placing a strip of cloth over it may also be helpful.
An alarm system will alert you that your loved one is trying to leave a certain area. Your alarm system may just be a few empty cans tied to a string on the doorknob. You might have to place special locks on the doors, but be aware that such locks might be dangerous if a house fire occurs. Don't use this method if your loved one will be left home alone. Make sure your loved one wears a medical bracelet, in case he or she does wander away from home."
Finally, it is good for all of us to constantly remind ourselves that we are also one day going to be growing much older and would soon be facing the eventualities that could cripple us in more ways than one--that loss of memory, self esteem, dignity, independence and creeping confusion, can be very scaring. Yet we must all learn to cope and hope to forestall this possible deterioration for as long as possible, by learning to take some proactive and preventive steps...
Unfortunately, very little is known with certainty, about how we can exactly make ourselves impregnable from this mental and physical decline and decay. Perhaps decay and decline is inevitable, but we can try lessen the pain and difficulty for ourselves and our loved ones, by understanding that little bit better, the inexorable processes and dynamics that accompany our mental and physical entropy...
“I went to the woods because
I wished to live deliberately,
To front only the essential facts of life
And see if I could not learn what I had to teach
And not, when I came to die,
Discover that I had not lived.”
~Henry David Thoreau