I learned this simple lesson over and over, there are a lot of people that believe when Alzheimer's strikes the situation is hopeless. I also learned first hand, nothing could be further from the truth.
Alzheimer's Reading Room
I can't escape it. I go out to have a good time and it happens almost every time - I meet someone who has a parent, spouse or close relative who lives or lived with Alzheimer's.
I don't look for them. They find me.
In 2005, I wrote about a Harris Poll that indicated over 50 percent of people had been "touched by Alzheimer's". Subsequently I talked to Rudy Tanzi who told me by 2015 we would reach the "tipping point". By then almost everyone will be "touched by Alzheimer's or a related dementia". We have reached the tipping point.
So anyway, I was in the Banana Boat trying to have a good time and then it happened. A women I never met before asks me what I do. I explain about the Alzheimer's Reading Room. She started asking me questions.
For example.
She asked, can you make a lot of money blogging about Alzheimer's? Not really. I laughed when I said that.
She then asked, why would people want to read about what you did with your mother? I answered, well usually they are taking care of someone they love and they are searching for better more effective ways to care. They want to learn how to cope and communicate effectively with a person living with dementia.
She then said, what's the use? I shuddered internally and asked what do you mean?
She said, well, when a person has Alzheimer's there is nothing you can do, its just a matter of time.
At this point, the right hand side of my brain, and the left hand side of my brain are in combat mode. If I use one side, I'll get angry and probably berate the person. If I use the other side, I'll remain calm, cool, and collected, and be nice.
I have to tell myself in my head - relax. This means don't use your tongue as a sword.
"They are amazing with what they can learn (Alzheimer's patients). I know they have a stigma about them that they can't learn anymore. It is not true". ~Marisa Henrickson
Eventually I asked, do you know someone that has Alzheimer's? She answered, yes, my mother. I asked, is she alive? She answered, yes.
I asked, do you think it is hopeless. She said, yes. I asked why?
She said, she is a mean Bi**h, and she is going to die anyway.
The hair on the back of my neck stood up. At this point, I am fighting a battle in my head. I want to remain nice, but all kinds of nasty responses are flying through my head. I take a deep breath and switch over to my nice side.
For some wild and crazy reason I ask, is your mother here in Florida? She says, yes. I then say, maybe I should meet her. She asks why? I respond, see what is going on. For what purpose she asks?
Then I go really wild. I say, so I can show you there is more there than you can imagine.
This conversation went on for a bit and went nowhere.
Finally, I grabbed a napkin and wrote AlzheimersReadingRoom.com on it. I said, if you like, you can take a look at my blog, and decide for yourself if it is really - gulp - hopeless.
And that was that.
I am not in the habit of telling people what to think or feel. As you probably noticed here on the ARR, I don't mind sharing advice, or writing about my own experience. But you are the one that decides if you want to be here, or if you want to read.
I took away a lot from the conversation.
Let me make this clear -
most Alzheimer's patients are not mean and nasty,
they are easily confused and then they become mean and nasty. How do you operate when you are confused or scared?
I have visited 19 adult day care services around the country. Met thousands of people living with dementia, and more caregivers there and on this blog than I can count. Over a million for sure.
When I meet Alzheimer's patients in adult day care they are almost always sweeter than sugar. This tell me it is just not true - dementia patients are not intrinsically mean and nasty.
When I see dementia patients I walk right up to them. I smile, and hold out my hand. They take my hand and smile back at me. I usually say a few words in a low voice. Sometimes they say something back to me.
To me they seem sweet. They also look and feel very fragile. They are not mean and nasty. Adult day services work.
I actually believe I can talk to any dementia patients and make a difference. If nothing else, my brain is telling me I can bring out the more there. One thing for sure, there is more there. I am confident about that conclusion.
Sadly and this is a bit harsh. I learned that there are probably a lot of people out there that think and believe - Why bother. This means you can't do anything, and they are going to die anyway.
That makes me sad and I don't believe it, and I never will.
I took care of my mom for eight and half years, 3,112 days. I know how you feel. I felt just like you feel. I never stopped learning and improving the life of my mom. I had hundreds of ideas in my da Vinci pad that I never got too went she went to Heaven.
Here is the best part of caregiving. Once you start learning how to understand, cope and communicate with a person living with dementia - things get better and better. Once you get in the groove, so does your loved one. Life gets better, regardless of stage.
Hopeless? NO. You the caregiver are the conduit of hope - and love. You can accomplish more than you could ever imagine.
You will have to use your brain. Sooner or later your brain will realize that you are accomplishing more than most people could ever imagine.
Now here are some custom topic pages. These pages are designed to help you learn how to understand, cope and communicate. Ten articles on the first page of every search. Take a look, pick one, read, think about it. Get in the habit of sending the link from these custom pages to family, friends, and support group members. Over time, you get in the groove.
Alzheimer's World
Dementia Patients Can Deceive Others to the Distress of Their Caregiver
Urinary Tract Infection, You Can Learn From My Experience
I wish more people would share the links to these custom search topic pages. Most of the caregivers in the world have never seen them.
Search the Alzheimer's Reading Room for Answers to Your Questions About Alzheimer's and dementia
Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR).
The Alzheimer's Reading Room operates for the benefit of society.
The goal of the Alzheimer's Reading Room is to Educate and Empower Alzheimer's caregivers, their families, and the entire Alzheimer's community.
At its core the Alzheimer's Reading Room is about helping everyone to better understand, cope, and communicate with a person living with dementia.