9.21.2009

DEMENTIA

"THE MAP IS NOT THE TERRITORY"
Alfred Korzbybsk

Some people think they have their lives mapped out for themselves, then an unfamiliar landscape rises up and changes the map.

That is what has happened in my sisters life.

She worked as a legal secretary, now days called paralegal. She was very good at her job. She always had a very precise mind. Neat and orderly. A place for everything and everything in it's place.

Lois has always taken great pains to order her life and surroundings in a way that gave her control over them.
She is a very Private person.

I'm sixteen years younger and have always thought of her as my elegant sister. She has style! Even now, when she isn't feeling well, she is up and dressed, her hair perfect, lipstick on. You get the picture. Her look is very important to her.

I've always said, "You could wear a gunny sack, and still look stylish, I don't know how you do that?"

We are moving her up to Bend to assisted living. A very nice place just a few streets away from where we live and where our in town brother works. As I wrote before, it is very hard to be making these decisions for someone else, but that responsibility has basically fallen to me, with the moral support from the rest of the family, I'm doing my best for her. I want her to be as comfortable as possible.

Dementia is not something I'd ever read up on before, no reason, until now...
We still don't know what this will mean for her immediate future, or even the long run, but we know her life map has changed, and that right now she needs help.

She ask me last week, "When you lose pieces of your mind, where do they go?"

I didn't have an answer.

7 comments:

  1. Linda....this is going to be very difficult, but at the same time, it will bring out more love in you than you think is possible. I watched my Grandma Rose go through every stage. At one point, Grandma forgot how to talk, but she could still express the joy in her heart by singing. I would walk in the room and she would just sing "la lalalalal alalalaaaa." She was still in there, whether she remembered me or not. I am very forgetful and absent-minded...and I look just like Grandma. I live my life assuming I will go the same way. It's all okay. My dad would play the guitar for her, and he noticed she and all the other Alzheimer patients loved guitar music. You should play your music for her.

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  2. Hi Kelly, that could be something I'll try. She is still very present most of the time. So far it is only her meds, meal and money she can't seem to figure out. They just confuse her.
    The things I read on some of the sites I went to when I did some research, say there are a number of forms of Dementia, Alzheimer's being the worst of them. But not all forms make you forget your family or yourself. So there is hope.
    Your Grandma singing made me smile.
    Thanks

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  3. Hi Linda, I am a fellow, very long time Bendite - BSH class of '63, retired RN..... I am caring for my mother who lives next door and lives with dementia. It is such a horrid, cruel disease. I hate what it robs from life - the person's who has to live with it, and from those of us watching and caring for our beloved family member. I will follow your blog. Feel free to ask me any questions you might have. We all need to be resources for each other.

    Kathy Poncy - 5 Cats and the Truth is my blog.

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  4. Oh Linda, I know the dichotomy of death with dementia as part of the equation. I am so sorry for the void in your life in the loss of your sister. Sisters are such a wonderful gift in life. For you sister I rejoice in that the trials of living with dementia are no longer part of her existence. Thank you for your comment on my blog and I do look forward to your continued writing soon and who knows, perhaps I will come in to your store and introduce myself one day. I love books. Kathy

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  5. I just lost my Father to Alzheimer's. I am the youngest of his nine children and I was one of his main caregivers. I know you mentioned dementia but they are very similar I think. I would like to recommend a book for you to read that was very helpful to my family when my father was diagnosed. "Learning to Speak Alzheimer's: A Groundbreaking Approach for everyone dealing with the Disease" by Joanne Koenig Coste.
    I wish you and your sister the best. <3

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  7. What a profound question: "Where do they go?" It somehow seems to say something about the condition itself, if only how very personal it is. I don't feel I have much to give by way of a response, except to wish you both every blessing from now on.

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