I lead a purposeful and meaning life while caring from my mom. My life was rich in spirit and I have no regrets.
Today I decided to write about me.
Back when I was caring for my mom Jane Gross wrote an article about the Alzheimer's Reading Room on the New Old Age blog on the New York Times website. If you have not yet read it, go here.
During my time as a full time caregiver for my mom, Dotty, many people worried about me. I took care of my mom for 8 and a half years, 3,112 days. Right up until the day she went to Heaven right here in our home.
By Bob DeMarco
Alzheimer's Reading Room
There was one thing in the NY Times article that always bugged me though - a lot of people came to the conclusion that I had no life while caring for my mom. No life? Let's go ahead and straighten this out right how.
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I lead a purposeful and meaning life while caring from my mom. My life was rich in spirit and I have no regrets. I understand its hard for some people to understand. But it is my life and I decided how to live it.
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In the article about me on the New Old Age a reader made this comment,
I think it is insane to even consider - sacrificing the rest of our life in its entirety - work; marriage; friendship; any other leisure pursuits EVER - to care for an elder who needs round-the-clock care.Yikes. Not insane for me. And by the way, I only sacrificed a part of my life, not the rest of my life.
My life before Alzheimer's wasn't so bad. I have been to the top of the Jungfrau, stayed in the Hotel du Cap, walked on the Avenue des Champs-Élysées, had lunch at the Polo club, rubbed elbows with movie stars at the Ginger Man, been back stage at a Robert Plant concert, Super Bowl, Final Four, the Masters, World Series, you name it.
Those were fun experiences. But, put em all together and they still don't come close to my life as a caregiver for my mom.
During my life I have done some things that are hard to imagine. Can you believe I managed to cut school for two weeks in second grade before I got caught. Another school story, I had a teacher in tenth grade tell me "I was going to Hell".
Pretty amazing when you think about that last one. While caring for my mom I had thousands of people tell me - I was a good son. Thousands wrote to me and told me I was going to Heaven. Like I had somehow punched my ticket to Heaven. Heaven or Hell? We shall see.
I even had people tell me I was a Saint, and a few thought I should become a priest. I'm still working on the miracles. Saint Bobby, I like it. Maybe I could be the patron saint of Alzheimer's caregivers?
I could go on for hours and tell you about the big wonderful "cartoon" that has been my life.
My life by the way is not over. Wanna know how I know? I'm still here cranking away in the Alzheimer's Reading Room and it is almost five years since my mother went to Heaven. I started this place eight years ago! More than 16 million unique readers have visited the ARR.
This might amaze you. I think about Alzheimer's caregivers every day.
Let me throw this in right here. My mom, Dotty was the greatest!
I look back on my experience as an Alzheimer's caregiver as if it was the most important part of my life; and, its till going right here in the Alzheimer's Reading Room.
My Life is Rich in Spirit.
Now I want to say a few words to my fellow caregivers.
Here is what I realized here in the Alzheimer's Reading Room. They love us more. Yep, they love us more. If you are wondering how I came to this conclusion I encourage you to read this article.
It is okay by me if you believe me, or if you don't believe me.
People tell me over and over they couldn't do what I did. I'll let you in on a little secret,
There are people all over the World doing exactly what I did right this minute. Millions of them.
Here is something I know for certain.
The typical Alzheimer's caregiver is searching for "tools". The tools they are looking for will help them to accomplish their own mission. What is the mission they are on?
They want to bring to the person living with Alzheimer's the highest quality of life possible.
When they come here, to the ARR, I do my best to hand them the "key". The key to what? The key that opens the door to Alzheimer's World.
By the way, the entrance to Alzheimer's World is only one big step to the left. In Alzheimer's World all the behaviors that can drive you crazy become the normal. They become the expected.
Once you accept this new normal the amount of stress, anxiety, and frustration you are facing everyday begins to melt away. You have to make to Alzheimer's World.
Once you make it to AW you then have to start giving yourself some credit for what you are accomplishing.
Ever had a person say - I don't know how you do it? That is a compliment. Of course, if you are anything like me you might yourself thinking - if you know it is so difficult how come you are not helping me. Sadly lack of help often comes with this territory.
Via the ARR, I managed to plug into the positive spirit of Alzheimer's caregivers all over the world. I think we plug into each other. This is why I can say, without doubt
I have a life that is now rich in spirit.
Come on now. Give yourself some credit.
You are accomplishing more each day that most people could ever imagine.
You are caring for someone who is so fragile that they need 24 hours a day.
You are their lifeline.
You are their connection to the World.
Where would they be without you?
And the best part of it all - You are the ONE.
I suggest you read the following articles and check out the custom searches when you have the time. Give yourself a hug. Smile. You might be punching your ticket to Heaven right now. One thing is certain - you are earning the respect of everyone around you. Of this I am certain.
The Effect of Emotional Super Glue in Alzheimer's Care
13 Things Every Alzheimer's Caregiver Needs to Know
What is the Difference Between Alzheimer’s and Dementia
Test Your Memory for Alzheimer's (5 Best Tests)
6 reasons why you might have to put someone with dementia in a memory care facility or nursing home
Is Alzheimer's World an Irrational Place?
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.
*** Cope. To face and deal with responsibilities, problems, or difficulties in an effective and calm manner or way. Coping requires us to make our own conscious effort to solve personal and interpersonal problems. This allows us to minimize stress, reduce conflict, and to better understand our situation.