2/19/10

arguably the worst...


I've been AWOL from my crafting, which I have to say is probably the worst scenario since I definitely need a 'therapeutic' escape right now. I realize that I've been living in denial for some time now concerning my Mother's condition and status. This is strange because she's been living with me for years now, and as her primary caregiver you'd think that I would be the person most in-tune with what her condition is/has been.

My Mother, Phyllis, is the third known generation of women in her family with what is referred to as 'early onset Alzheimer's Disease'. My great-grandmother, grandmother and mother all began to exhibit small signs of what was to come before age 60. I didn't really and truly see the issue for myself until my Mother was about 62 years old, but with hindsight we know that she must have been hiding a lot from those of us around her. She is now 69 years old.

About a month ago, and after a large seizure, Mom went from fairly functional at home to dwindling in a nursing home. It's been the hardest time of my life. I have had to make decisions that she did not set in place for me long ago. And, this week, the terrible burden is to choose whether to give her a feeding tube, or not to give her one. She has refused to eat for over three weeks now and is losing weight. In the Alzheimer's patient, the ability to eat is a late-stage symptom. Probably her brain has shriveled away in that area that tells you to be hungry and to eat.

It's funny how different the scenario is just one generation after my Grandmother's passing. 20 years ago, there were no Alzheimer's drugs to be had. You simply took the long, slow deterioration of the mind. But, my Mother had the benefit of taking Alzheimer's medications. It made a huge difference for her. People often have the mistaken idea that the drugs 'help your memory'. This is not true. Once the disease sets in and damage is done, there's no coming back from it. However, the medications made my Mother's progression very different. She stayed at a level ability to function for much longer than her own Mother. That's why this quick month of decline is hard for me. I expected a slower decline. And, it feels like it's 'snuck up on me'.

The pros and cons of the feeding tube/lack thereof are neither pleasant. There's no one decision that sticks out as the better option. At first, I thought, "There is no way that I will starve her by not giving her a feeding tube." However, after some education at the hands of medical care specialists, I am not so sure that a surgical procedure (which she may not be strong enough to survive) and the potential complications from the tube are humane either? Especially when they can never be resuscitated back to something better. Still, how do I make this decision either way and be confidant in it? Life certainly can be unfair and impossible sometimes.

It must be decided soon because as she becomes more malnourished, she could slip into cardiac arrest. I have to choose if I can deal with, and accept that. Pray for me...

I really liked this Alzheimer's graphic, made to advertise a statistic, created by Graphic Designer Ethan Bennett.