Dec 7, 2011

My Mother Has Alzheimer's and I Am An Alzheimer's Caregiver

Yes, Alzheimer's caregiving can be painful. It can also be joyful.

By Bob DeMarco
Alzheimer's Reading Room

95 years old
My name is Bob DeMarco, I am an Alzheimer's Caregiver. I am also the Founder of this website, the Alzheimer's Reading Room.

My mother Dorothy DeMarco, now 95 years old, lives with Alzheimer's disease. She was "officially" diagnosed about seven years ago.

Our lives, together, are very different than you might think. I'll get to that in a minute.

That is Dotty over there in the picture to the left. I bet she looks a lot different than you might have expected. I took that picture on June 29, 2011. The day Dotty turned 95.

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I was just looking at an article I wrote back in 2004. You know what I was really worried about back in those days?

How long it would be before Dotty no longer knew me? How long before Dotty ended up bed ridden? How long before Dotty could no longer eat?

Every time Dotty took a turn for the worse I assumed the day was coming and coming soon.

I still worry about those a bit, but I am no longer "obsessed" by those thoughts. When I do think those thoughts, I now wonder what it is going to feel like, and what I am going to do when those days come. One thing for certain, I am going to do something when it happens.

This might sound crazy to some, even some Alzheimer's caregivers, but Dotty and I will continue to live our life together right up until the end. Yeah, I know that sounds crazy, and no I don't know right now how we will accomplish that, but I'll do my best to figure out how to accomplish that mission.

I hope I can discover something that will be useful to other AD caregivers.

Here is somethings I want to say to the readers of the Alzheimer's Reading Room. Thousands of you have sent me testimonials and emails thanking me for my efforts here. I appreciate each and every one. However, I want to make this clear. The person that benefited the most from the effort here was Dotty. I would put myself right next to her.

The two of us together benefited because of you. The reasons are many, but mostly because you encourage us to keep on going. One thing for sure, we never feel lonely, and we never feel alone. Why? Because we have you.

I understand that AD caregiving can be difficult, horrible, gut wrenching, heart breaking, confusing, and Stressful. I know this first hand, and I know because you told me about your own experience as an AD caregiver.

But here is something I know and learned. Most AD caregivers want to bring the highest quality of life possible to the person living with AD. As I learned this the last few years this knowledge lifted me up.

I doubt there is another person in the world that knows as much about AD caregivers as I do. I also doubt that there is anyone on the planet that has benefited the way we have from the worldwide Alzheimer's community. You lift us up and empower us.

I guess this helps explain why I believe there is, and can be great joy in AD caregiving. Oh yeah, AD caregiving comes with the Yin and Yang of it all. Yes we experience conflicting emotions every day.

The typical AD caregiver starts with a feeling of emptiness when the verdict comes in -- the diagnosis. This empty feeling at first seems to be all encompassing and overwhelming. Then, slowly but surely the tide turns for many. Once you accept that Alzheimer's is a disease, an illness, and not a life verdict you can slowly move on to the task at hand. The task, becoming the best caregiver you can be.

Most AD caregivers finally understand that there is "more there" than they thought, or could imagine. Granted this "more there" is very different than might have been expected. The "more there" comes in the form of a look of contentment on the face of a person living with dementia. AD patients live their life in a way that is very different than what we come to expect over the course of our own lives. They live a simpler, more down to earth existence. But live they do.

Yes, Alzheimer's caregiving can be painful. It can also be joyful.

The joy in caregiving can be elusive. But less elusive if you take a moment to realize what you are accomplishing.

Care. Caring for another human being. Where would they be without you? What would their life be life without you?

Go ahead say it, I am an Alzheimer's caregiver. Look in the mirror and say it, I am an Alzheimer's caregiver.

Let me know how it feels.

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Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The blog contains more than 3,101 articles with more than 452,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room