Home spun truth

Before I met Alzheimer's up close and personal I had never thought about the word confabulation. There was truth and untruth and that was final. Nowadays confabulation is one of my Mother's best survival tools. Her life is no longer logical. There is no reason for her to be in a long term care facility because she is not sick. She cannot remember that she cannot remember. There was no reason for people to send get well cards when she broke her hip because unless she tried to move she could not recall breaking her hip.

Her memory is broken but her mind is still amazingly agile. She can explain every small detail even when no explanation needed or asked for. A few weeks ago she showed me a small stuffed cat in her room and related how she had recently sewn it to keep her company while Dad drives taxi. She no longer of course, has a sewing machine.

As you can see from the pictures, in her former life Mom was more than capable of sewing a stuffed animal. In fact she could look at a picture of any animal and come up with a pattern to make it. At our house the sewing machine was only ever put away a few hours before midnight on Christmas eve, when all the Christmas gifts were sewn and church pageant gowns complete.

Mom tried in vain to teach me how to sew. "Who will do your sewing when I am gone?"

Now that it's too late, of course I am learning how to sew. I applique flowers on her blouses to make them seem more like something she would have made. A few weeks ago when someone complimented her on a flower that I had sewn on her shirt, she smiled and took full credit for sewing it on. That made me feel good, because confabulation is how my Mother makes sense of life. It would make no sense that I sewed it on. Ruthe doesn't sew!

I look around her and see other folks that are far more anxious than Mom. I don't care that she is not telling the "real" truth, I am just grateful that she still has the ability to fill in the blanks in a way that brings her peace.

Living in the moment

My mother has taught me that even if it will soon be forgotten each and every moment has value. I try to give Mom lots of photo books packed with pictures of her having fun. My heart breaks a little at the times when she doesn't recognize herself in those pictures.

"Is that me?"

"Yes Mom."

"Well, I thought maybe it was my sister."

But do you know the miracle?

Most of the time she remembers her grand kids and great grand kids. I think if she could choose who she wanted to recognize it would be them.

Little pieces

During my last cold when I coughed I sounded like my mother. I have other health issues that she does as well. I don’t know what the current theory about inheriting Alzheimer’s is because I’ve given up believing that anybody really knows. I used to have an amazing memory; too good actually. I’d remember every embarrassing thing I’d ever done or said and could quote entire conversations I had years ago. Now that I’m 47 - not so much. I’m starting to forget the little things. It’s comforting that friends my age are experiencing this too. But it still scares me. A lot.

To tell the truth

I had a lovely phone conversation with Mom last night. My calico cat was stretched out on me purring into the phone as I told my mother that I wished I could share Bella's warm furry self with her. Mom enjoyed hearing the tales of what my cats are up to and laughed heartily as I described Bella's penchant for escaping into my apartment's hallway and rolling around on the floor while I vigorously shake a jar of pennies in the misguided hope of scaring her home.

I also told her I am going through her old pictures and making slide shows for her and described the two older pictures above. Mom recognized them as being her pictures and was able to tell me the the boy on stilts was my Great Uncle Emmanuel. She wasn't sure about the other one (it's actually an unmailed postcard) and asked me to bring it in sometime so she could see it.

While we were talking a nurse came in and asked Mom who she was speaking to. A reasonable question because Mom has been the victim of telephone sales people, receiving harassing calls for not paying for a credit card she did not recall signing up for. Mom told the nurse she was speaking with Karen. (My sister) That was understandable to me, our voices are almost identical on the phone, and while Mom does get family members mixed up in person too, we are enormously grateful that she always knows us as trusted family members, a luxury we know we could lose at any time.

Anyway, the nurse told Mom to tell Karen hello, so I went along with it and told her to say hello back. A few minutes later the nurse took the phone and started a conversation at which point I admitted that I was not Karen but her sister Ruth. And then I wanted to reach through the phone and hug my mother while the nurse said disparagingly, "It's not Karen at all Melinda!"

Most of Mom's care givers are wonderful, caring, loving people, but this woman is old school, errors must be corrected. I disagree with this with all my heart. Accuracy no longer counts. One of the things I am most grateful for is that my mother does not remember that my father died two years ago, and is most times content to wait for him to come home. She does not always know where he will sleep when he does show up, but she says they will make room on their small bed.

Even my 4 year old niece and 7 year old nephew understand that correcting Grandma isn't necessary. I wish more grownups could learn this small lesson in kindness.

Happiness Still Happens

I think that I take so many pictures of it when it does because it is so fleeting and soon forgotten and I hope that maybe I can help it stay.

A Rose by Any Other Name Would Still Stink

I hate the name of this disease.

No offense to Dr. Alois Alzheimer, but it's just not a catchy name. And it's way too easy for people to change it to "old timers" and dismiss it as something normal that happens to the elderly. It's not normal. That kind of thinking only works till it hits someone you love. Or yourself.

Dementia seems even worse to me. How is this a respectful name? You would be insulted if someone told you your actions where demented. Everyone but the most ignorant have stopped saying retarded because of the stigma attached to that word. Where's a kinder word for a disease where the person can't remember that they are ill, and so every time they hear the diagnosis once again feel the shame and surprise of being told they are demented - a word used interchangeably with crazy in our society?

And I love Harry Potter, but a whole new generation of people are going to grow up associating the word Dementia with Dementors: "Soulless creatures considered to be among the foulest beasts on Earth. They are soul-sucking fiends who guard the wizard prison, Azkaban."

Names are important and it should be possible to change them. Just ask anyone named Britney and I bet they'll tell you.

Amazing

My Mother is the smartest person I know. She was always well spoken and talented, but I didn't realize till she was diagnosed with Alzheimer's eight years ago how intelligent she really is.

It was tricky to convince her doctor that there was a problem and she would have passed the doctor's test for Alzheimer's except she missed a rather major question - what season it was.

The area of my mother's brain that controls social graces has not been changed too much so it is often difficult for people to believe she has Alzheimer's when they first meet her. It's not till she repeats something she's said three or even one minute ago that it becomes obvious.

Mom takes visual cues from her surroundings very well. Her newspaper is often nearby so she can glance over to see the date. She still does word puzzles and one thing we can do happily together is the daily crossword puzzle.

I admire how she attends every activity at her long term care facility and participates fully. I think in her circumstances I would sulk in my room. Once when I attended a word game activity with her I came away totally impressed. Mom could have answered every question almost instantly but many times allowed others to answer first so they could join in the game.

I've seen her greet a visitor warmly even though I could see that she was not sure who the person was: "Oh hello, I thought I might have visitors today, but I didn't know it would be you!"

Despite what I wrote yesterday, I would give anything for my mother not to have this disease. I like to think that we would have figured things out. But the fact is she does have Alzheimer's and every single time I am with her I come away truly amazed at her grace, intelligence, and ability to find enjoyment in the smallest detail.