Posts Tagged Alzheimers

Created by Anna Mo on Flickr.

So you may be wondering why my blog turned purple.

Today is Alzheimer’s Action Day.

Alzheimer’s is sort of a pet cause of mine. You see, my grandmother lies in a nursing home now, unable to recognize any of her children or grandchildren, only occasionally able to recognize her husband, and completely unable to communicate.

For more than a year now, the only two words she seems to still know how to say are “No” and “Yes”, and even those seem difficult to manage and are indicators of a lucidity that comes at rapidly decreasing intervals. She is trapped in a mind that no longer functions, in a body that continues on in good health in spite of the fact that she can’t quite figure out how to operate it.  She smiles one second and weeps the next, and can tell no one why she does one or the other.  At other times she seems petrified, afraid of some monster that only she can see.

The woman who taught me how to read and write can no longer form words.

And this is a disease that doesn’t stop with the afflicted. In some cases, the patient is the one getting the better end of the deal, for he or she can no longer know or understand what is happening to them. Alzheimer’s is as much a disease afflicting the caregivers as the patient.

When my grandmother became unable to care for herself anymore, unable to even manage basic necessities, it sent my grandfather into such a tailspin of depression that his own mind, once a mind that I considered one of the most brilliant I have ever known, has begun to fail. He has become paranoid, a conspiracy theorist, and so desirous of having something good happen that he has become every conman’s favorite mark.

It’s not his memory that is failing. It is his emotional control. It started when he was forced to become the primary caretaker for my grandmother, and worsened drastically when we were finally forced to put her into the nursing home and he was left living alone for the first time in his life.  Now, he is likely to soon be forced to go into assisted living, at the least, and my mother and aunt are considering a guardianship petition to keep him from throwing what’s left of his life savings away on sweepstakes, lottery, and investment scams.

For my mother and aunt, it has placed extra financial stress, while the emotional stress has been on all of us.

My greatest fear about aging is not pain or lack of mobility. My greatest fear is lack of self, for that is what Alzheimer’s robs its victims of, while their families are forced to sit and watch. It is our intellect, our memories, our histories and relationships, our pasts that make us who we are. Alzheimer’s strips all of that away. Alzheimer’s robs the patient of the very essence of what makes them who they are. And it is one of the top 10 killers in this country.

Alzheimer's Research Graph from the National Institute of Health

And yet it receives a fraction of the funding for research.  Relatively curable and non-lethal diseases such as breast cancer receive millions upon millions of dollars more each year for research into cures, while research dollars spent on Alzheimer’s, which will affect and kill many more people and cost many, many more dollars in healthcare costs, are just a drop in the research bucket.

So I work to make that drop bigger.  I don’t have much money of my own to give, so I do what I can to spread the word and fundraise.

Alzheimer’s disease is the only leading cause of death in this country that has no way to stop or slow the progression of the disease. The only way to find one is with research and research requires funding.

So if you have a few dollars to spare, head over to the Alzheimer’s Association to donate.  Help to save memories.

I’ve written on this before, but one of Neil Gaiman‘s latest blog posts brought the issue to mind again, and I very nearly missed the deadline to add my own thoughts to the open forum discussion on this topic.

You see, my grandmother has Alzheimer’s disease. She is at a very late, advanced stage. She is no longer easily able to form entire words, much less sentences, she does not recognize her daughters, grandchildren, or husband. She has to be fed, or she forgets to eat any food placed in front of her, and she has to wear diapers, for she has forgotten how to use a toilet or clean herself.  And yet, her body, such as it is, remains fairly healthy. She exists lost in a mind that has become so twisted and tangled that she cannot find her way out.

There is no hope that she will ever regain her memory, that she will ever be able to function normally again, that she will ever regain the dignity she has lost.

But Alzheimers is a hereditary disease. She was not the first in our family to have it, all of her sisters had it.  It’s probable that my aunt, my mother, my cousins, or myself will one day face this same thing.

Stem-cell research is the only research avenue offering hope for a real result, perhaps not a cure, perhaps only a stay-of-execution….but of a far better and more successful result than any of the current medicines can offer.

If you have anything to say on this topic, whatsoever…please visit the links mentioned here: http://docs.google.com/Doc?id=dd5vs2xt_0hkwp6xd8 and let your voice be heard.