The New York Times 2007 article, Treating Dementia, but Overlooking Its Physical Toll, talks about how many of our loved ones, towards the end of their lives, are subjected to unnecessary life prolonging treatments such as dialysis and colonoscopies. Author Tara Parker-Pope says this is because so few recognize dementia as a physical, as well as mental disease. Fast forward to 2012. Parker-Pope's article is still relevant. People, including those in the medical community, still have trouble accepting that end-of-life needs are different. These treatments have their place when we are younger, healthier. With an eye towards a better future, most of us are willing to put up with some discomfort and inconvenience, even surgery.
But this changes when the end of life is near. Then, quality of life becomes more important than a little more time. This is especially a concern with LBD, which causes so many physical problems in addition to the dementia. There comes a time when treatment for something such as kidney failure will make little difference—except to decrease the quality of one’s final days. Our LBD folks are also especially sensitive to stress. These treatments will almost always add stress of some sort—which increases LBD symptoms—and probably increase the progress of LBD as well. Who’s to say whether these treatments really extend life at all, when this is taken into consideration?
A common example of “aggressive treatment” is the use of feeding tubes with an end-of-life dementia patient. Dementia is a debilitating disease. As the brain dies, so does the body—and its need for nourishment. Not only can the tube be an unnecessary torture, but the food, going into a system no longer capable of processing it, adds to the discomfort. (Think about what it’s like for you when you feel very constipated.)
It’s not just the treatments. It can also be a state of mind. Carrie is a good example. Early in the LBD journey with her mother, she learned to aggressively push anything that might delay the dementia. She searched the internet for the newest ideas and treatments. She pushed her mother to get out and socialize, to move and exercise, to drink enough fluids, to eat enough of the right foods, and on and on. The experts tell us all of this will help the dementia progresses more slowly. Carrie wanted the best for her mother and so it bacome a habit—a way of life.
But dementia DOES progress, and no matter how she tried, the time did eventually come when their journey with LBD is almost over. Accepting this was seldom easy. She didn’t want to lose this person she held so dearly. Of course, she didn’t—but it is no longer her choice. Her mother had moved into a different space with different needs now. At first, Carrie felt as though she was failing. Maybe she just needed to work harder, push a little more. The failure would have been if she hadn’t been able to move past her own needs and see that it was time to change her goals, her behaviors and her expectations to support her mother’s end-of-life need for peace and comfort.
Now is the time to relax. Carrie‘s aggressively proactive approach, once so helpful, was no longer supportive of her mother’s needs. Now is the time to sit and talk and laugh and touch and just be there. Daytime sleeping, once such a concern, is no longer something to worry about; 20 hours out of 24 is not unusual at this stage. She may also need to take a stand against medical personnel who have been trained that they must work to extend life, no matter what the cost. The good news is that with palliative treatment, there’s less stress and thus, reduced LBD symptoms—and maybe a longer life.