When my family first suspected that my father had Alzheimer's disease we could not find a doctor who could help us. We found one psychiatrist who advertised in the yellow pages an "interest in Alzheimer's". That was in the mid-1980s. A lot has changed since then. There is a lot of support for people with dementia, and for their family and caregivers. Diagnostic accuracy has improved. Medical interventions have improved, and so have behavioral/environmental interventions.
"Which came first, the chicken or the egg?" is one of the most famous questions of all time, and it points to an important fact:
Something always comes first.
I hear this a lot when I talk to people. "I never know when he is going to snap at me," someone might say. My automatic response is: "What happened right before he snapped at you?"
"What happened right before?" is one of the most powerful questions we can ask ourselves when we are looking to understand something.
In the example above a typical response would be something like, "I don't know. I just brought in the groceries. He didn't offer to help. I asked him if he was going to help or if he was going to keep watching t.v. and let me do all of the work."
Oh. So he snapped at you...right after you sent the message that he his a lazy good-for-nothing. And the words aren't the most powerful part of the message. The tone is. What tone of voice does one use when asking someone if they are going to continue to be selfish?
Another way of communicating disgust or disdain for another person is to ask them a rhetorical question that presupposes an undesirable quality. For instance, "Are you going to let me do all the work?" automatically sends the message "You are the type of person who is going to let me do all the work". Clearly, someone who lets someone else do all the work is not a very good person. But there is no way to effectively argue against a rhetorical question. The rhetorical question creates the message: "You are the way I describe you to be." It is passively hostile, and it leaves the sender of the message feeling powerful and the receiver of the message feeling defeated and put-down.
In the scenario above, the typical response to the question "What happened before" will begin with the person feeling like they are being accused of being to blame for being snapped at. "What do you mean he snapped at me because I was hostile toward him? You are blaming me for him snapping at me!"
No. What I am doing is pointing out that every action is a response to something that happened before. Every action is a reaction.
Take the scenario: He snapped at her after she complained that she was doing all the work. She complained that she was doing all the work because...she was doing all the work. She was tired. She was feeling more like a servant than a partner. She was frustrated. She definitely had a point to make.
My point is that we often communicate ineffectively. A different message would have been sent if he had said, "I am sorry that you are doing all the work. I feel terrible that my arthritis makes it painful for me to move, and that I avoid moving even to help you. I feel inadequate because I am not doing things that will help you, my partner."
A different message would have been sent if she had said something like, "I am feeling burned out. I am feeling frustrated and overwhelmed. I feel like it is all on my shoulders. Even if you cannot help me, I know that I need more help than I am getting."
I see this a lot with people who have dementia and their caregivers. Caregivers will complain that the person with dementia is ill-tempered. I will do a very subtle "behavior-chain analysis" in which I help the caregiver tell the story of what happened. I will point out the likely triggers for the person with dementia to express ill-temper. The caregiver will feel blamed and further overwhelmed. I will teach the caregiver to identify the antecedent...and in the process, to resist the temptation to personalize the blame and responsibility for everything that is happening.
It's a process. It's a process of learning and growing and changing.
Learning and growing and changing comes second. Experiences come first. Guidance and support help convert experience into learning, growing and changing.
Good luck. Keep up the good work! Your efforts mean that you care, even if the results are not always what you want them to be.
Until next time...
I often reflect on what makes caregiving more or less effective. Research indicates that people who are open to help from others tend to have an easier time as caregivers. Toward that end, I am going to try to add some links that might be helpful.
National Center on Elder Abuse
Caregiver Action Network
Area Agency on Aging
Administration on Aging
Center for Disease Control
Good luck in everything you do. Caregiving is the unsung heroism of our generation!