Tuesday, September 8, 2015


So, I was canning summer vegetables and crying all over the tomatoes.  I was listening to the radio program "This American Life" and a rebroadcast of an episode from last summer.  The story was about Karen, her husband Mondy, and her mother Virginia.  Virginia has dementia.  Go listen HERE.  Start listening at 27:30. 
Then go to Karen's website:  In the Moment (new version) and learn about her tools and techniques. As she says " In the Moment ... was developed after my surreal world of improvisation collided with the very real world of Alzheimer's disease."
Then go to her other website Ubuntu.  Looks like some good resources. (note: 2018 Ubuntu web site down.)

Monday, April 13, 2015

death and taxes...

So here it is, the middle of April, and for those of us in the US it is TAX TIME. The deadline for filing our federal and state taxes is here.  The joy of spring is overshadowed by the task of filling out these forms. 

For many of us, we put it off until the last day, the last possible moment.

I have been doing Mom's taxes for many years. Her tax situation was very simple. There are a lot of lines on her tax form with $0.

Why have I been procrastinating? Why? Every time I sit down to start her taxes I would get a big cramp, a lump in my heart, my stomach would clench, a feeling of dread would engulf me. I could not face her taxes. Why?

I think... it's because I now remember my Mother as the woman she was. I can now remember her as the intelligent, creative, loving person she was. I am not plagued by the memories of the day-to-day devastation that dementia created. I have stopped thinking of her as ONLY that woman.

But, the tax forms, once again, take me back to that place, the place where dementia held my Mother. A place I don't want to be.  A place with the HUGE monthly checks for her assisted living residence and medications; a place with cases of incontinent panties; a place where she was so lost.

But dementia no longer has my Mother.

Mom, tomorrow I will take you walking through my spring garden, we will talk about the narcissus as they poke up from the icy soil, we will discuss rhubarb pie recipes when we see the emerging leaves, we will talk about the returning Canada geese, we will enjoy the warm sun, and try to imagine sheep shapes in the clouds.  And yes, Mom, I got your taxes done, just in time, we won't have to worry about them, every again.

Friday, March 13, 2015

Sir Terry

Alzheimer's disease has taken another of my heroes. Sir Terry Pratchett passed away yesterday. Thank you Sir for your creativity and imagination.

Wednesday, March 4, 2015

father and son

Thank you Kate Swaffer for sharing this beautiful music video, of a son and his father.  Mahamera Se

Friday, February 27, 2015

it's been one year

It's been one year since Mom died, one year without her.

There were still many things that I had to do for her this past year, even though she wasn't here. I still have to do her taxes.

She never got to cuddle her great-granddaughter.
She never knew about our farm or chased our chickens.
She never knew that I became a quilter or saw any of my quilts.
She doesn't get to watch her granddaughter play collegiate softball.
She never saw a smartphone or a tablet.
She doesn't know I drive a truck.
She never got to know the amazing men who are her grandsons.
She didn't get to bake the traditional Christmas cookies this year, but I did, and wept. 

Our lives goes on.
We live without her.

Sunday, February 8, 2015

Sister Monica Joan

Somehow I have been captured by the TV series "Call the Midwife".   The joys and heartache of childbirth and the society of nurses and Sisters that run Nonnatus House.  Nonnatus House provides health services to the people of East London in the early half of the 20th century, most specifically mother and child services.

The character of Sister Monica Joan is that of an amazing woman. She was the first nurse midwife in her area. A driven educated leader of her time.

But when we meet her in this TV series, she is in the last chapters of her life.  Something has scrambled the file cabinet of her knowledge. Sometimes she escapes reality for historical, fictional, or mythological experiences.

The character of Sister Monica Joan shows us the experience of dementia in a powerful, intelligent, and caring person.   I am in awe of this woman, the TV character and the actress who portrays her.

Her character helps to create awareness for dementia illnesses. Her character show us that dementia is NOT an "all or nothing" illness. It creeps in slowly and steals abilities bit by bit.

The actress, Judy Parfitt, who plays the character Sister Monica Joan, has had first hand experience with dementia. Her husband lived with dementia.  You can read her story here: link


Wednesday, January 14, 2015

book review

Well I've done it again, I'm reading a book for pleasure and dementia finds me. The book is "The Thirteenth Tale" by Diane Setterfield.

It is not one of the main characters, it is the minor character of The Missus, the housekeeper of Angelfield estate.

It is interesting to read how the slow devastation of dementia in The Missus is paralleled in the slow deterioration of building of Angelfield itself.  It is also interesting how, even though The Missus is the primary person responsible for this great estate and the well-being of five or more people, no one in the household cares (?) that their world has become wonky.  Their house, meals, and clothing have become irregular and squalid. Not only can The Missus not care for herself, she can no longer run the estate.

Only her long close friendship with Mr Dig keeps her safe at home.

Ms. Setterfield has written a gripping story, and a very good glimpse into the creeping devastation of dementia.