We are often constrained in our caregiving effort by our own inability to understand that Alzheimer's patients are capable of more than we can imagine.
By Bob DeMarco
Alzheimer's Reading Room
I'm sitting here thinking about my eight and a half years as an Alzheimer's caregiver. Together Dotty and I traveled an interesting path -
from Burden to Joy.
As I think of the first eighteen months I now realize how emotionally painful it was. How painful it can be.
There is no doubt that caring for anyone who is ill is burdensome. But caring for someone living with Alzheimer's or a related dementia can in some ways seem tortuous if you allow it to be so.
Typically, Alzheimer's patients decline slowly over a long period of time. This period of time typically lasts 7 to 8 years.
It took me a long time to understand this - even though I knew it. For the first couple of years when people would ask, how long do you think you will be doing this? I usually answered another year or two.
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However, once I decided, became determined really, to keep Dotty at home to the very end if possible, my answer became very simple,
at least one more day.
That is how I began to envision our life, one day at a time.
I decided along the way that Dotty and I would begin living our lives.
Living the way we did before a diagnosis of AD. Living our life just like we always did -- to the degree possible.
We did it. We did it for all but the last 20 days. Amazingly, we went out to eat and had a nice time 21 days before Dotty went to Heaven.
I can still envision Dotty chomping on her last cheese steak. It was really amazing watching Dotty eat. She often ate with real passion. When I would ask her while eating any of her favorite foods, how is it, she would respond delicious.
It wasn't always that way. During the period of greatest burden her answer to the same question was also always the same - okay.
I didn't like that answer. It made me feel sad.
Many of you reading this article are new to the Alzheimer's Reading Room, so you probable didn't read my hundreds of stories about Dotty and me. Hundreds of happy tales.
I'm sitting here remembering when Dotty started singing a song I had never heard in my life - Ghost of a Chance. It happened while we were watching the HBO hit show TREME.
One of the main characters Antoine (Wendell Pierce) is walking down Bourbon street when he comes up on characters Sonny (keyboard) and Annie (violin).
Antoine starts singing the song. As he does this on TV, Dotty starts singing along with him. I was so stunned I kinda short circuited. I asked Dotty, do you know that song? She said yes. I asked, do you know the name and she said no.
I couldn't shake it off so the next day I put Dotty in front of the computer, played the song on YouTube, and sure enough Dotty started singing the song. I hit the stop button on YouTube and Dotty just kept on singing. Wow.
Persons living with dementia seem to like music. They can remember songs from the distance past. A Ghost of a Chance was written in 1932. It was first sung and made famous by Billie Holiday. Later it was modernized and re-recorded by Frank Sinatra. Dotty was born in 1916.
From that point on I started putting on the Swing music channel on our television every day. Dotty would start singing out of nowhere usually the more popular songs from her era. But sure enough, every once in a while she would start singing a song I never heard in my life.
It would be impossible for me to tell you how happy this made me feel. Joy. Real Joy.
Dementia patients also like pictures.
You might find this hard to believe but
the ability to remember pictures is actually greater in patients with Alzheimer’s disease than in healthy older adults.
This is the finding of Dr. Brandon Ally at Vanderbilt University. Dr. Ally is one of the few that is actually trying to discover strategies that can ease the burden on caregivers.
I once showed Dotty a picture of her granddaughter Katilyn. While discussing the picture I asked Dotty, do you remember where you went to first grade? Without hesitation she answered - Saint Monica's.
Dotty started first grade in 1922.
In order to move from burden to Joy you have to accept the things you cannot control.
Then, start looking for things that bring a smile to the face of a person living with dementia. You can start with music and pictures.
There is a lot more in there, in the brains of Alzheimer's patients than we can imagine.
We are often constrained in our caregiving effort by our own inability to understand that Alzheimer's patients are capable of more, much more, than we can imagine.
We often constrain ourselves by focusing on what isn't. Instead we should focus on what is, and what can be.
Alzheimer's patients can continue to live their lives. They just need a little help.
I guess you could say you have to figure out how to be part of the solution, instead of part of the problem.
One of the first steps in a solution is to
start living life.
Do that and eventually you will come to the fork in the road. Take one big step to the left and get off the path of burden and on to the path of Joy.
I learned that Joy is a cumulative emotion. A kind of intense happiness that builds on itself over time.
Amazingly these feeling of happiness rub off on us.
And, it is the Alzheimer's patient that delivers these feelings of Joy if you allow them to do so.
How to Get Answers To Your Questions About Alzheimer's and Dementia
Dementia, Overstimulation, Sundowning, and the Holidays
What is the Difference Between Alzheimer’s and Dementia
The Seven Stages of Alzheimer's
Alzheimer's Care and Communication
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We help caregivers live a better life.
*** 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.
*** Hug an act of holding someone tightly in one's arms to express affection, caring, and understanding.
*** Sadness is a normal human emotion. Sadness is an emotional pain associated with, or characterized by, feelings of disadvantage, loss, despair, grief, helplessness, disappointment and sorrow.
*** Caregiver is a person who gives help and protection to someone who is sick or in need.
Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob lives in Delray Beach, FL.
Original content the Alzheimer's Reading Room