By Kate Kelsall, MSW, blogger at Shake, Rattle and Roll: An Insider’s View of Parkinson’s disease and DBS The challenges involved in hospitalization of the person with Parkinson’s Disease (PD) can be overwhelming for the patient and family. These problems may include medication mismanagement and the lack of training of the hospital staff about how…Continue Reading »
This week, we are delighted to feature Dr. Roderick Shields O’Brien, Director of Care for Homewatch CareGivers of Colorado Springs. Dr. O’Brien shares his expertise in the context of personal experience, offering wisdom and advice for those supporting a relative through Alzheimer’s disease.
I’ve had a lot of exposure to people with Alzheimer’s disease having completed two residencies after medical school: one in psychiatry and one in neurology. Each of those specialties is deeply involved in the medical care of patients with dementia of all types.
Over the past year, working at Homewatch CareGivers of Colorado Springs, I’ve met many more individuals who are struggling with dementia. Many of them have become our clients and I’ve had the privilege of spending days and nights with them and their families at home (rather than 15-30 short minutes in an artificial environment). I have seen the behaviors and patterns that are commonplace in dementia that would seem peculiar in other settings.
However, none of my family members have had this exposure. So when a close relative was diagnosed with Alzheimer’s, there was a lot of confusion. I heard proclamations like: “Why is my father being so stubborn? He can’t remember things for more than 10 minutes—and he knows it! I showed him the dirty dishes this morning and the empty wrapper from the bacon he cooked; but he still would not believe that he already ate breakfast!”
Well, the truth of the matter is that this particular family member always has been stubborn. There is nothing about dementia that resolves life-long personality “qualities.” However, dementia adds many nuances to the situation and complicates social interactions. People with dementia often develop inability to accept their limitations. This is called anosognosia, which means the loss of knowledge of a disease. And it is not denial or stubbornness! Again, there is nothing about dementia that prevents a person from using denial as a coping mechanism when he is presented with bad news.
But in the case of my relative, he was experiencing anosognosia and was not connecting the dots in his own mind. It just did not compute. When I first started seeing this in the “trenches” of dementia care (I mean in the real venues where the down-and-dirty work of taking care of somebody with Alzheimer’s disease occurs—the home), I was reminded of a very enlightening experience I had back in school.
As a medical student, I was assigned to help care for Mr. J at the beginning of my psychiatry rotation. He was the first person I’d ever met who suffered from schizophrenia. Nothing about him seemed unusual until the following day when the topic of cars came up. Mr. J was absolutely certain that he was a car. I found this hard to believe. I thought he was pulling my leg. I quickly realized that challenging this “belief” caused him to get angry. I read through his chart in great detail that night with amazement. It turned out that no matter how much clear evidence was presented to him, Mr. J would not accept that he was not a car. This was a delusion—a fixed [permanent], false belief.
Although anosognosia is not technically a delusion, it is still futile to present evidence in hopes that your loved-one is going to come around to seeing the “truth.” Arguing over the “facts” usually causes agitation and hard feelings. Even when it doesn’t generate tension, it never changes the fixed, false belief!
Most people who have moderate or severe (and even some people with mild) dementia cannot remember much after 3 to 5 minutes—unless there is a thread holding that information current in their consciousness. A common thread that can keep a topic or a piece of information on anybody’s mind is anger. Have you ever been in an argument and felt embarrassed because you were told you were wrong in front of a lot of people? Imagine how much worse it would be if you also were convinced that you were actually correct—you only had to remember some fact that was just on the tip of your tongue or just barely out of reach (somewhere in your memory) cognitively—and then you could redeem yourself. That emotional energy can cause you to ruminate about that injustice for hours or perhaps even longer.
Well this happens all the time when a family member is confronted about why he should not have a drivers license or why he can’t have access to his gun collection; what an injustice! Instead of forgetting about the topic in a few minutes, the elderly parent turns it over and over in his mind until he explodes hours later. And now, the family is surprised that dad remembered something from this morning, but couldn’t he have remember to shut off the water in the tub (which caused a flood in the basement). Now everyone in the home is angry!
Living with any type of dementia (Alzheimer’s just happens to be the most common form) is like moving to a new country where all the social customs are different and where many of the words and phrases have variable new meanings. It is so difficult for everyone, not just the individual who was diagnosed! But there is hope. It takes a lot of patience and a lot of education, but you can learn how to reconnect with your love-one in a way that will allow you to reach the pieces of that person that are still present and begging to be set free.
About the Author
Dr. Roderick Shields O’Brien is from Wisconsin. He attended undergrad at Notre Dame and med school at Indiana University, so he also considers himself part “Hoosier.” He completed two residencies, also at IU, in Psychiatry and Neurology and then served in the US Air Force. His combination of Neurology and Psychiatry backgrounds was a natural path to his current passion for dementia care. As the Director of Care for the Colorado Springs branch of Homewatch CareGivers, Rod enjoys the change of perspective that his current responsibilities offer. When practicing Neurology in the military, time was short and there was a culture of medicating problems as a “Band-Aid” solution. He now spends his spare time teaching, writing, and volunteering. He frequently gives lectures for the Alzheimer’s Association of Colorado Springs and is dedicated to raising awareness of the growing epidemic of dementia and other elder care needs.
Homewatch CareGivers is a premier caregiver agency, providing home care for all ages. We invite you to visit www.homewatchcaregivers.com, where you can read articles related to home health, Dementia Care Tips and home care news; or download PDF home care resources. From health care coordination and hospital discharge planning to home care transportation and daily living assistance, let our family of caregivers care for yours.