It is a common belief that individuals living with dementia are, or will become delusional. Delusions are beliefs that are contradicted by reality or rational argument, and they are often associated with a mental disorder.
Dementia is not a form of mental illness. It is a progressive physical disease amounting to massive organ failure that results in the destruction of brain function and normal thought processes. The results can be beliefs that we regard delusional. When we call someone delusional, we must measure their thoughts against reality. But how often do we ask ourselves, “Whose reality?”
I find it unhelpful to say that a person with dementia is delusional. I find it far more useful to believe that the person living with dementia has moved to a different reality than my reality. I may not agree with it; I may not fully understand it; I may consider it contrary to what I know as fact. But I can move a step in the right direction toward compassionate care by adopting the attitude that their reality is as valid for them as mine is for me.
Let me give you an example. I had a friend whose mother had Alzheimer’s, and she began to believe that he was not her son, but her long-deceased brother. At first, the son tried to correct her, but this resulted only in angry confrontations that left both of them in tears. Eventually, the son realized that his mother’s reality was not something he could change or correct, and he began to respond to his uncle’s name.
With acceptance that he was not going to win the battle of realities, the son discovered that his visits with his mother became fulfilling and wonderful. She loved talking with him. Visits became longer, with more laughter. The son heard reminiscences that he had never heard before, and he could see that they gave his mother joy. All he needed to do was put his own ego in check and accept the persona of his uncle.
What was so profound about my friend’s experience was that as he accepted his mother’s reality and paid more attention to what she said and did, he formed the idea that in her mind she was somewhere between her late teens and early-20s. This is when he suddenly realized that at this time in her life, he – her son — hadn’t yet been born! How could his mother possibly have recognized him as her son? It made far more sense that he would be her youthful brother. If we accept her reality as valid, this seems more like logic than delusion!
The important lesson in this story is that when the son validated his mother’s reality, their relationship became so much better and care-giving became so much easier. They took joy in each other, and accepting the role of her brother enabled this man to re-kindle a wonderful relationship with his mother that he thought the disease had destroyed forever.
We, as family members, friends, and caregivers will never really know what is going on in their minds. But if we simply take the attitude that their reality is not delusional, but as valid for them as ours is for us, we can begin to move, even if just slightly, into their world and rekindle the love and joy that we thought we would never feel again.
Debbie Selsavage is a Certified Independent Trainer in the Positive Approach to Care, a Certified Dementia Practitioner, and President of the Board of Directors of the Alzheimer’s Family Organization. Her company, Coping with Dementia LLC, is dedicated to making life better for individuals and their caregivers who are living with dementia. Contact Debbie at [email protected].
Until next time remember: “We all deserve the Best”
Send your comments and stories to [email protected]
I wish so much that I could “take joy” in ANY of this. Unfortunately, my Dad seems to have gone back to his Navy days, also before the days of his daughters, so he really doesn’t remember either of us. But hey, my sister completely abandoned both of us, so a big fat “whatever” if he doesn’t remember her. She’ll certainly only remember she has a dad when it’s her turn to collect her half of dad’s estate. But he also hasn’t mistaken me for anyone else “good”- I’m just his jailer, the person who won’t let him burn down the house, leave the doors to the outside wiiiiiiide open in winter, or flood the basement, or feed the cats ice cream cake, or any of the other endless insane things he used to get up to before he had constant supervision.
LT,
This is what it is, none of us like it and I wish I could fix it for you, but I cannot. The fact that you understand that he is at a point that you were not even born is a big step ahead of others but it is not easy. Trying to go where he is and have some enjoyment at his level will be something remarkable for both of you. He may not remember your name but he is working on feelings now and he will remember how you make him feel so go with it. Do things that you know may bring him some enjoyment, think outside the box. Just listen to where he is at and work in that time frame, at this moment he does not know anything else, play music from that time, maybe come in and be dressed from that time. This may bring him comfort and he may start to reminisce with you. Thank you for your comment.
Your blog helped me tremendously. I can now see my situation in a positive light. I feel strenghthened. Thank you.
Eileen,
Thank you glad that you enjoyed the blog and it was able to put things in a different light for you. Are you a caregiver? If you would like to be added to my e-newsletter that comes out monthly please provide me with your email and I will add you. We forget how much the person living with dementia is not doing things on purpose by the disease is driving most of the behaviors that make the caregivers crazy.