There are a lot of philosophical and ethical conundrums as well as questions that go with Alzheimer’s disease and dementia. I was struck again by these challenges while participating in POV’s online chat in the wake of the airing of the documentary “The Genius of Marian” on PBS last week.
Here are some points that came up in the discussions or that I thought about while listening:
1. Difficulty of getting a diagnosis – and is it even worth it? For every person diagnosed, experts anticipate that there are three more people who are developing this degenerative brain disease. In fact, they believe that many people never get a clear diagnosis of some type of dementia. But should one subject oneself to the diagnosis when there isn’t a treatment presently available that can stop this disease?
2. Should a person with Alzheimer’s even undergo treatment? – One chat participant commented that she regretted giving her mother the medications for Alzheimer’s because it extended her suffering as well as that of her family. This person stated, “The choice (is) between no medication (or) intense but short-lived meds (that result in) a low-grade painful distress in which the illness progresses glacially slow and they exhaust all resources – time, physical, emotional, energy and money. We move from caring for them out of love to caring for them simply out of moral obligation.” That’s an interesting conundrum because, as I mentioned in the previous comment, there currently is not a medication that halts the ravages of Alzheimer’s. So would it be more humane at this point to let the loved one succumb more quickly to Alzheimer’s disease rather than dragging out their decline?
3. Where do you put your resources? And what resources are available? – The chat pointed out that caregiving differs in each individual case depending on the resources that are available. “The hardest thing for anybody who is going through this is that the process asks so much of you and it winds up becoming isolating because of the time commitment that is required, especially as the disease progresses,” said Banker White, who was the filmmaker on this project and whose mother, Pam, was the subject of the documentary. He said that Alzheimer’s and dementia have a stigma, which means that many people don’t know what to do or how to reach out to offer help. He recommended using the family’s support network while still realizing that people don’t know how specifically they can help. “We leaned quite heavily on our friends to help out and the immediate family,” he said, adding that it wasn’t until Pam reached the later stages that the family decided to bring someone into the home for paid care. Susan Rowell of the Alzheimer’s Association (who also appeared on the chat and have been involved in advising the White family) encouraged people not to do the caregiving alone and to ask for help. She encouraged people to call the Alzheimer’s Association’s 24-hour hotline.
4. Are friends available to help? And will they? – There is definitely a stigma about Alzheimer’s. Ed White, Pam’s husband, said that friends should just take control instead of waiting to be asked. Some friends, however, did drop out. “When we were secretive (about the diagnosis), and the first news of her diagnosis came out, it felt like at least half of their friends were no longer present in their lives,” Banker said. He added that these friends already were confused about what was going on with Pam prior to her diagnosis since her impairment already was showing up when she started acting differently in her book group and bridge group. Banker also pointed out that Pam is one of the first in her peer group to go through Alzheimer’s so her friends and acquaintances are just starting to come to an understanding of what she’s going through.
5. Secrecy vs. transparency -- Ed said that he has tried to remain true to his wife’s request that he not tell her friends about her Alzheimer’s diagnosis, even though she helped found the singing group and has been an active member of a book group and bridge group. “It became more and more difficult for people in those activities to have Pam with them so they would ask me to try and withdraw her from those,” he said. “I also will say that my loyalty will always be to Pam first and she never wanted anyone to know about this diagnosis. If anyone asked, ‘What’s going on with Pam?” she always said, ‘Just say she’s fine.’ And of course, I did that even though people knew I was lying to them.” He described this as being probably a common dilemma and said in retrospect he wished that someone had leaked the information so he didn’t have to.
Alzheimer’s disease and other types of dementia offers lots of big and little challenges to the person affected, the family, the caregivers and friends. By thinking about what the loved one with the disease would want, you can make better decisions. Still, caregiving conundrums will come up and you’ll need to be careful as you sort them out. In my experience, learning more about the disease was critical as was transparency about Mom's condition in avoiding these issues. However, not everyone feels that way. I hope you’ll watch the POV chat video to learn more about the Whites’ experiences.
Primary Source for This Sharepost:
POV. (2014). The Genius of Marian Online Chat. YouTube.