I try to read articles and books with suggestions that we give people with dementia or Alzheimer’s what they want with an open mind. I am not a doctor, I don’t run a nursing home, and I am not an expert in dementia. All I know is that we live with it every day and in our experience, this information presented to the public without added research and explanation, can be harmful.
For instance, the New York Times article, Giving Alzheimer’s Patients What They Want, Even Chocolate, has caused more harm than good in our home. The good was that it reminded me that some of the things Mom does are coping mechanisms. If she wants to wash one or two pairs of pants at a time over and over again, and she has the energy to do so on that day, we should let her do it because it brings her comfort. The article also shows some amazingly innovative and more caring ways to deal with dementia. However, other parts of the article were less helpful.
The article talks about letting patients eat whatever they want and shower at 3am if they want. What the public does not realize in reading these articles is that this is a care facility, not a home, where it is someone’s job to be awake at 3am. They come in for the night shift, they have not already cared all day for someone. And for nutrition, they do not address if these people, in addition to the chocolate, also eat well balanced meals. They also do not go into what happens when someone refuses to eat nutritious food. Where all they want to eat is chocolate Special K, hot dogs and candy. When that makes them sick, what do you do? What happens when the person sits in bed all day, never getting any exercise because they don’t want to do it? Their muscles weaken and they can barely hold up the weight of their skeletal system. What do we do then? What do we do when Mom won’t go out and get’s depressed because she has not seen her friends and had any fun?
In our home care experience, we can’t just let Mom eat whatever she wants, not exercise, and stay in bed all day. Yet others who read article’s like this one tell us “The article says it’s ok, that’s what you should do.” Some people think we are being mean to Mom by trying to get her to eat well and exercise when she does not want to do it. Mom reads these articles and hears the speakers mention this type of care, and even she says that since these “experts” say it’s ok, we should let her do whatever she wants.
But, it is not ok. Mom does not deserve a life where she is uncomfortable and sick all the time because she does not take care of herself. And in reality, it is us, those who care for Mom, who are responsible for the ramifications of letting Mom do whatever she wants. We will be the ones to carry her in and out of bed when she can’t lift her own body. We will be the ones to wash and bath her. We are the ones that have to take care of the many things that happen when she gets sick. Clearly we are willing to do all of those things, but we don’t want to make it happen faster than it needs to. And the psychological and physical pain all this causes Mom is immense, she should not have to live that way.
I don’t know how to tell people this, but unless you live with a person with dementia every day, not for a week or two, but 24/7, you will not understand the ramifications of things that seem so insignificant. Cereal for dinner on one day seems harmless, but when a person eats unhealthy all week, they get sick. Missing exercise one day seems fine, but not when someone has not really been active for a long time and looses muscle mass. An alcoholic “nip at night,” as the article mentions, is fine unless it increases hallucinations.
All I ask is please, if you write such articles or present this information, please think about the people who do home care. Please think of how the generality of the information leads people to make sweeping assumptions that this kind of care works for everyone in all situations. And if you read this kind of information, first, thank you for caring enough about dementia to gain more knowledge about it. Second, please remember that this information does not work for everyone. The disease affects everyone differently and home care is much different than institutional care.