Wednesday, January 15, 2014

The Forgetting, and remembering

My mother died of Alzheimer's disease, and my dad is disappearing in a similar way. He's not been diagnosed with Alz., but what's the difference? His memory and personality are both diminishing, just as hers did. Looking at all the literature, it seems that he is in the final stage, in fact.

The http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp#stage7 :
Very severe cognitive decline
(Severe or late-stage Alzheimer's disease)
In the final stage of this disease, individuals lose the ability to respond to their environment, to carry on a conversation and, eventually, to control movement. They may still say words or phrases.
At this stage, individuals need help with much of their daily personal care, including eating or using the toilet. They may also lose the ability to smile, to sit without support and to hold their heads up. Reflexes become abnormal. Muscles grow rigid. Swallowing impaired.
These details are mostly true for my dad, although he still holds up his head. So far, he eats well, although sometimes must be prompted to do so. He lives in the wheelchair though, and rarely if ever moves his body.

When my mother was losing her mind, she had some bizarre theories of her problems and quite destructive paranoia, and I mourned her loss constantly. When she died, I found that all that grief was just a waste; I had to grieve her death anyway. So when my dad started down the same road, after my first rebellion against it, I thought it through, and decided to do things differently this time. I uncluttered my life, and started doing that to the house too. I said no quite a bit, and shed jobs and tasks like crazy. Until I got bored! That was the point at which I started reading email again, started visiting IRC more often, and began pitching in as I had time and interest.

So as my dad is slipping away, we're making progress on the house, and life is pretty peaceful and delightful. I'm able to enjoy the time I spend with Dad, and also the days I have to skip my visits, whether it's for a local meeting or a trip to Europe. When he goes, I'll grieve his death, but I'm not finding this process painful. It helps a lot that I alternate visits with my sister, so the pressure is shared, and he's in a nursing home, so neither of us is changing his diapers or brushing his teeth. I don't think suffering is a healthy response to his slow death, so I'm choosing instead to enjoy the time I have left with my dad.

Oddly enough, it helps to read up on Alzheimer's; what it is, and what progress is being made in the fight against it. This is important, because my generation, the baby boomers, are entering their sixties. This disease could bring the health care establishment to its knees, all around the world.

I've just finished a remarkable book, called The Forgetting - Alzheimer's: Portrait of an Epidemic, by David Schenk. It's a really great synthesis of history, experience, research, and thinking about dementia. Just for myself, I'm going to copy part of what he says in Chapter 16, called Things To Avoid, on page 228:
Doctors cannot yet cure Alzheimer's, or prevent it, or even mask its symptoms for very long. But hundreds of studies have begun to produce a pointillist portrait of how people can help themselves--things to do for the body, mind, and spirit that might reduce the risk of getting the disease, or at least delay its onset:
     Avoid head injuries,
     Avoid fatty foods,
     Avoid high blood pressure,
     Eat foods rich in antioxidants, which eliminate damaging free-radical molecules. Eat, specifically, prunes, raisins, blueberries, blackberries, kale, strawberries, spinach, raspberries, brussels sprouts, plums, alfalfa sprouts, broccoli, beets, oranges, red grapes, red peppers, and cherries. (Foods listed according to their antioxidant content, in descending order.)
     Eat foods rich in folic acid, and in vitamin B6, B12, C, and E.
     Eat tuna, salmon, and other foods rich in fatty acids.
     Don't drink too much alcohol. (A moderate amount might be slightly beneficial.)
     Don't skimp on sleep. (Sleep is rejuvenating to the brain and the body; sleep seems to play a very important role in long-term memory formation.)
     Exercise.
     Maintain a high level of social contact (and consider marriage--one study shows fewer married people getting Alzheimer's).
     If you are a woman past menopause, consider estrogen replacement therapy. (Some studies suggest it may reduce Alzheimer's incidence by as much as half.)
     If you like to chew gum, continue chewing gum.....
     If you regularly take non-steroidal anti-inflammatory drugs such as ibuprofen for another reason, continue. (Some studies show a benefit.)
     Get a thorough education.
     Keep your mind active. Read, discuss, debate, create, play word games, do crossword puzzles, meet new people, learn new languages. Studies show that people with very high levels of education, while not immune from Alzheimer's, do tend to get the disease later than others.
That last paragraph supports the work I began when we first got our Coleco ADAM computer. I've learned how to use computers to edit newsletters, do genealogy research, use and administer mail lists, forums, newgroups, websites. I used Macs, some Windows machines, and then found my true home in FOSS, and the communities I found there: KDEKubuntuLinuxchix, the Ubuntu Women, and Linuxfest Northwest.