Dementia Diary

Dear Dementia Caregiver:

It’s the middle of the night and you want to scream: 

"Why is my loved one doing this to me?

You’re angry!

You’re embarrassed!

Your Mom…Dad…Life Partner is acting strangely…

You ask yourself:  Who is this person? …and…

What is going on here? 

You are experiencing caregiver burnout. I know how you feel. Just like you,  I’ve “been there and done that.” And I can now say: IT’S NOT ABOUT YOU and IT’S NOT ABOUT ME!!!

It took me forever to understand this. The woman who birthed me, raised me, nurtured me, and loved me…MY MOTHER…had become a new person—and not a very lovable one at that. Sound familiar?

At around age 77, she changed. Gradually, but noticeably. After a lifetime of kindness and consideration. She changed and, suddenly, I needed eldercare guidance...desperately!

Could this be my mother—this woman who went out of her way to insult and demean others…including me…and who rejected all of my efforts to help her? Or......

COULD IT BE THE DEMENTIA?

I couldn’t tell. I was too close to it. I got mad every time she lashed out at me…or else I felt embarrassed whenever her target was someone else (usually in public places)—or when she over-ate without remembering that she had just eaten—or when she asked the same question over and over and over—or she was physically aggressive—or (you can fill in the blanks with other things that make you crazy). 

Every time Mom did something socially unacceptable (I won’t catalogue these things—you know what they are), my anger raged. Afterwards, of course, I felt guilty for getting angry. Well, I didn’t have to feel this way…and neither do you. 

Here’s what the social worker told me:

 “DEMENTIA IS A DISEASE PROCESS”

“Cool it buddy!” she said.  “It’s not about you. It’s about her. It’s a disease process—an illness.”  So recognize the wisdom of the social worker’s advice. 

Learn to ignore the bizarre behaviors of your loved one and to accept them as “normal” symptoms of dementia disease (and to not take them personally even when they seem to be personal). You’ll be a much happier person and a much better caregiver. 

Remember: Your Mom can’t control her dementia symptoms any more than if it were pneumonia, or heart disease, or cancer. Things are happening in her brain that make her do the things that upset you.  

IS IT ALZHEIMER’S?

Or is it one of the many other kinds of dementia that slowly rob our loved ones of their identities? It matters not which dementia they have. The effect is pretty much the same.

So I finally “got it.” Maybe you have too. But, if not, consider this: Chances are your loved one would be embarrassed to death if his earlier, healthy, self could see him now.  

It’s up to us as caregivers to recognize that Mom or Dad (or spouse) are not “doing it to us,” and to forgive them—daily if necessary. They just can’t help themselves. 

DEMENTIA CAREGIVERS OFTEN FEEL ISOLATED

They need lots of caregiver support. For a very long time, I felt TOTALLY ISOLATED—like I was the only one in the whole world carrying the burden of caring for an aging parent. I bet you sometimes do too. 

Be good to yourself. Seek dementia support services wherever and whenever you can.

That’s what I did and gradually I realized that I WAS NOT ALONE! Thousands of people were experiencing exactly what I was—dealing with memory loss and difficult behavior in a loved one, every moment of every day. Wow! 

KNOWING THIS MADE ALL THE DIFFERENCE

And that’s why I wrote my book, DEMENTIA DIARY, A Caregiver's Journal. I wanted to describe my caregiver’s journey with humor and compassion so other caregivers could laugh a bit, cry a bit, and realize that they too are not alone. 

Don't take my word for it. Click on the “REVIEWS” link to read the testimonials of eldercare experts. See why one reviewer called DEMENTIA DIARY a “Neil Simon laugh and cry scenario.” Dementia does not have to be grim. Many moments are, in fact, hilarious.  For a lot of people this is a revelation. I know it was for me. So, let me repeat...

DEMENTIA DOES NOT HAVE TO BE GRIM!

I hope that you will read my memoir, DEMENTIA DIARY, A Caregiver’s Journal,and draw comfort from it as so many other caregiver’s have done.  Check it out and see if it's as helpful to you as I say it is.

When you read about Minnie, the "Boomerang Bubbe" in Dementia Diary, with every chuckle and every sigh you’ll feel the tension ease and, maybe for the first time, you’ll appreciate what Mom or Dad are going through. In fact, here's my no-risk guarantee: if the book fails to make you laugh, return it directly to me and I'll refund your purchase price.

And you will know this:  We are all of us united by our desire to ease the fear and pain that memory loss causes for our loved ones. May your struggle with eldercare be a gentle one!

Best wishes,

Bob Tell