What’s It Like to Live With Dementia?

May 20, 2008 by  
Filed under ALZHEIMER'S

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Have you ever wondered what it’s like to live with Alzheimer’s disease? I have. I used to look at my mother and wonder what she was thinking and how she was really doing.

Today, we have a glimpse into the life of someone who is living with dementia. I “met” Mary over at Alztalk.org, her story is below.

I was diagnosed 2 years ago with early onset Alzheimer’s. I’m 63. I was started immediately on Aricept, and two months later on Ebixa (called namenda in the States). Research is showing that starting both drugs early on is having better results.

In 2006 I applied to be in a neuro imaging research study for alzheimers, being conducted at the Sunnybrook Health Sciences Center in Toronto. I had my initial interview and assessment in September. After undergoing the cognitive testing there, it was determined that I didn’t have Alzheimers, but that I had another one of the dementias, the language presentation of frontal temporal dementia (FTD). This explained why I was having no memory problems. The result is the same, but with FTD the disconnects, disorientation, depression and discontent are rarely as great. I am now in an FTD study at Sunnybrook. This involves yearly SPECT scans and cognitive testing to see how the disease is progressing in my brain.

When I first received the diagnosis and started researching….it scared me to death. My brain was slowly dying and there was nothing I could do about it. Sure the medicines help with the symptoms and might slow the disease down a bit, but there is no cure……so in fact….I had just received a death sentence. So…I might as well just curl up in my chair….and start the dying process.

Wrong. I have just too much living to do right now. And I learned this from talking to people in the chat room (at Alztalk.org)….people who were diagnosed as far back as twelve years. You have to learn everything you can about the disease, know what to expect, and deal with these changes as they happen. I’ve also learned we have to have a really good sense of humor….and laugh at ourselves as we make mistakes. You need to confront the disease, talk about it with your loved ones, take care of your Powers of Attorney and other legal stuff, talk about when you want to be put in a nursing home, whether you want feeding tubes and life support – this all needs to be attended to now, while we can still make our wishes known.

My personal support group consists of my best friend and loving husband Jim, and our five sons. Jim has learned what signs to look for when my brain has had enough input, and get me to a quiet place. He encourages me in my new ventures, but keeps an eye on how I’m doing.

Mary is an amazing woman and very active in Alzheimer’s/dementia awareness. As a person who lives with dementia, Mary provides some valuable tips about navigating life with dementia, click here to check out her site.

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