Adelle Stanley, is the director of dementia programs for Agape Senior South Carolina. Adelle, in the story below, talks about her observations and interaction of dementia patient and primary caregiver and gives some advice for anyone dealing with the care of someone with dementia.
I have decided to forgo my usual information-only blog this week because of what I experienced today.
Today I am sitting waiting for my husband as he has a stress test. The waiting room is filled with people both patients and those waiting for them. Each of us waiting for the patient (I dislike that word, it is so impersonal), we all have been told, “You can’t go back with them, that it will take about two hours and then they can come back out for abreak”. So they have just told me I can’t go back with my husband of 39 years. I have followed him around the world in the military, he followed me into the labor and delivery room of our three children, we have seen each other through a lot but they control the threshold of the door. So I come back and sit down to wait.
There are two reasons this has clutched my spirit this morning. The first, :we are sometimes keepers of the door or “threshold” for the person with dementia. That will be my next blog to address next week. The second: I see a couple that is sitting and waiting, I would assume they have been married even longer than Howard and I. The wife answers questions and smiles. She hands the husband a magazine.
He says “I’m hungry”
She says “we will get something to eat later”
He asks “why are we here?”
She smiles and says “you have an appointment with the doctor today and this is the doctor’s office”
I have suspected before now that he had dementia but now I am sure. She has been so involved with him since their arrival. She has made sure he is with her, that he doesn’t walk too far away, and keeping an eye on him like she would a child, but being very respectful. I don’t think she is aware that she will not be able to go back with him.
They have just called his name; she gets up to go with him.
They look at her and say, “You’ll have to wait out here, it will be about two hours and then he will have a break”.
She starts to say something and they say, “You have a seat and he’ll be back later”
I want to step in, but it is not my place at this time. Maybe he will be alright but two hours without the one person a dementia patient depends on is a very long time, especially if they are put in a situation where they have people “barking orders” at them. I have a feeling the person that just told her that, will be back before the two hours are up. This day may be more rewarding than I first thought.
The wife goes and sits down with a worried look on her face and her body language is that of someone that has been defeated. I wonder why sometimes at Dr. Offices, they think they know everything about everyone. Why can’t they simply take the time to listen, or why don’t we know how to be a better advocate for our loved ones?
Twenty minutes go by and yes, there appears the person that gave the order that she could not go back with him. She is now telling the dear woman that the test cannot be completed because he is not able to follow directions. The husband is upset and agitated, and the wife looks like she could cry. My heart sinks as once again something that I feel could have gone a lot better…has turned out to be a disaster.
One of the ways we can be an advocate for our loved ones is to talk with the physician. Ask the physician making the appointment to make sure that they let the staff know that our loved one has dementia. Let them know if at all possible to allow you to go back with your loved one. Our loved ones “speak” a different language and we understand it. They would not send a child back without the parent, why do they insist on a dementia patient going back without their loved one or caregiver?
Please give me a call if you would like to have a class in your area to know how to better deal with situations like this, or send me an e-mail. The classes are free and very informative.
I began holding a physician’s conference five years ago to educate all types of physicians about ways to better impact families with Alzheimer’s and like dementia. The University of South Carolina joined me in the effort two years ago. The problem I faced is that some, alright a lot, of doctors do not seem to think that there is anything they can do with the dementia patient, so they will not attend the conference…I need your help to change that.
Be advocates for your loved ones. Tell their physician(s) about the conference and tell them how important it is that they know what they can do. Let them know how to get in touch with me. I will go to their office to present an in-service for them and their staff whenever they would like. We need to rally around our loved ones and make this easier for them and also easier for the physicians and staff that help care for them.
Thank you for listening and making a difference in your loved one’s life.