Dementia patients might not be able to tell you how they feel, but if you pay close attention you will learn by their behavior how they are feeling.
Alzheimer's Reading Room
In a recent email conversation with me Rudy Tanzi wrote,
people only remember how you make them feel ... more than the substance of what you say or do to them.
Rudy along with Deepak Chopra is the author of Super Brain. Rudy has the innate ability to explain how the brain works in terms that are easy to understand.
When Rudy sent me the quote above from Maya Angelou as a follow up
I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.
I understood how this could apply to Alzheimer's caregiving.
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Persons living with dementia often stop saying please, thank you, and I love you. For the caregiver this can be disconcerting and make them feel under appreciated. I understand what that feels like.
In the beginning my mother would say
"Get out, I don't need you, I can take care of myself"
this hurt me. It hurt my brain and hurt my heart. It hurt even though I knew she didn't mean it. She was just scared and confused. This is one of the things that Alzheimer's does to the brain.
Over time I figure out how to get my mom to stop saying it. I changed the dynamic and it worked.
It is my belief that we are all searching for purpose and meaning in our lives. What could be more meaningful and purposeful than caring for a person that needs us to much.
Article - The Power of Purpose in Our Lives
One of the things that has always fascinated me is what I call emotional super glue. One of, if not, the most powerful of all experiences. When 2 people get married they might believe they are bound together by pure emotion. Emotional super glue. If that is the case why do 50 percent of people get divorced?
From time to time I might meet a couple that has been married for 30 or 40 or 50 years. They seem to relate in a way that seems extraordinary to me. They laugh at each other, and laugh together. After all those years they still sit close together when they can. They hold hands and touch each other. In a way it seems miraculous. When this happens, when I see it, I always get a great feeling of happiness. I admire them. They are attached by emotional super glue.
One of the things I can say with great confidence and total belief is that caregivers and their loved one are often bound by this kind of emotional super glue.
I meet caregivers all the time that are having a problem shrugging off the effects of Alzheimer's caregiving. Sometimes they are sad, sometimes it seems like they cannot get over it. This is understandable to me. They have all these strong emotional feelings and maybe, just maybe they don't understand them.
For one thing, when caregiving ends so does the meaningful and purposeful life. Or does it?
I believe it can be replaced by understanding what it is you have accomplished. What could be more rewarding and fulfilling than caring for someone who needed you so much? The brain is fascinating. Like Rudy says - the brain is like the stomach. So what you feed the brain often determines how you think, how you feel, and what you believe.
When the caregiving ends I always suggest that you think about what you have accomplished.
Allow yourself to remember what it is you have accomplished. You are the ONE. The one that did it. If not for you what would have happened.
Rudy says your brain is like your stomach. So why not spend some time thinking about what you accomplished, rather than focusing exclusively on your loss.
The reason caregivers become sad, and miss their loved one so much, is because of the way they feel. The great feeling of emotion is gone. In a sense the lose of the emotional super glue. This can make you sad for reasons you don't understand, you just feel it. Again, what are you feeding your brain? More sadness? Why not focus instead on the simple understanding of what you have accomplished. You have lived a meaningful and purposeful life.
All the feelings are still stored in your brain. The simple fact that you were able to experience true emotional love should make you feel good. How many people get to feel the super effects of real emotional love?
One thing that bothers me is that caregivers often wonder if their loved one - loved them. Sometimes persons living with dementia forget how to say it. That does not mean they forgot how to feel it.
How do you explain the fact that they follow you around all the time, call out your name when they can't see you, ask repeatedly where you are when gone, and ask over and over when are you coming back. They ask for you repeatedly. Well they must have been feeling something if they were doing this. What were they feeling? They are feeling the effect of emotional super glue.
They just can't stand to be without you.
As a result, it is easy for to understand why caregivers can be so sad after the caregiving is over. You miss them so much because the emotional attachment was so strong. Why not focus instead on the wonder of it. Wonderful really.
For me, when I made it to Alzheimer's World I started to listen to my mom. I started to look at my mom's face. I tried to understand what she was feeling, and why she was doing the things she did.
Once I started to understand Alzheimer's - I migrated from feelings of burden, unhappiness, and heart break to a feeling of happiness for what I was accomplishing. Then one day I realized my brain had made it to a new place. A place filled with a heightened happiness which can be describe with one word.
I allowed my brain to accept what I was accomplishing. My mom was paying me back by doing one thing after another that I could never imagine. Each time I was filled with Joy.
Over time as a caregiver I experienced a long list of emotions. At first, burden and heartbreak. Then happiness. Then the belief that I was living a meaningful and purpose life. Then a heightened sense of happiness - Joy.
I also learned one thing that I wish every caregivers could understand
They Love Us More
What other conclusion could we come to if they need us so much.
I want to ask a simple question to my fellow caregivers. Would you rather be happy or sad?
You are the one that gets to decide. It all depends on how you use your brain, and what you feed your brain. If you are like me you probably heard people say - I don't know how you do it? This implies it is not easy being one of us.
I have been told - I'm a good son, I'm a Saint, and some people even tell me I am going to Heaven. I'm good with all of it - thank you.
So my brain has concluded all of what I described above. I do believe I lead a meaningful and purposeful life while caring for Dotty. I do believe my mom and me were attached by emotional super glue.
Caregiving isn't easy. But it sure is rewarding. I'm proud of myself, and you should be proud of yourself.
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Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized expert, writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide.
The Alzheimer's Reading Room contains more than 5,000 articles and has been published daily since July, 2009.
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*** Empathy the ability to understand and share the feelings of another.
*** Compassion a feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate their suffering.
*** Purpose the reason for which something is done or for which something exists. Having as one's intention or objective.
*** Happiness is a mental or emotional state of well being defined by positive emotions ranging from contentment to joy. Happy mental states also reflect judgement by a person about their overall well being.
*** Joy a feeling of great emotional pleasure that transcends happiness.
*** Caregiver is a person who gives help and protection to someone who is sick or in need.