Saturday, March 31, 2012

April 1--A

A  Alzheimer’s Disease

People fear Alzheimer’s disease more than almost any other disease—with the possible exception of cancer—and with good reason. The fears that Alzheimer’s arouses are fundamental and existential. The disease takes away, one after another, a person’s memory, cognitive function, self-efficacy, ability to care for him- or herself, and even his or her personality. There’s no cure for Alzheimer’s, and the treatments that exist so far only work--when they do--to slow down the symptoms.

Paradoxically, this disease we fear is something that can’t even be definitively diagnosed. The characteristic plaques and tangles can only be positively identified on examination of a patient’s brain after death. A dementia diagnosis is the best that can be given.

I began this journey into the unknown with my mother three years ago. It began with a bad fall she had, resulting in her being hospitalized for four days. When we brought her home she didn’t recognize her own house. And this wasn’t a momentary thing. It lasted for weeks. At my wit’s end, I made an appointment for her with a neurologist at our state’s best private psychiatric hospital.

The neurologist looked at the brain scan the hospital had taken. He said that parts of her brain had shrunk. He gave her cognitive tests. Then he told her, flat out, “You have Alzheimer’s.” I was shocked and angry at such a blunt statement, particularly since I knew it was so difficult to diagnose. But it seemed to slide right over my mother. I guess one of the few blessings of this disease is that eventually you forget that you have it.

So we don’t really know what kind of dementia my mother has. I suspect it isn’t Alzheimer’s because her personality hasn’t changed. It makes it much easier for my husband and me that she doesn’t curse at us and accuse us of keeping her a prisoner in the assisted living facility, as some of the people there do. In fact, it seems to have brought her some kind of peace. My anxiety-ridden, worrywart mother now seems content, having forgotten all the losses in her life, including that of her son. So does that mean that her personality has changed after all, but in a more positive way? It’s a small thing to be grateful for nonetheless.

This month I concentrate my blogging on my experiences with my mother’s illness over the past few years. I don’t intend this to be a day-by-day chronicle of loss, deterioration, and sadness but a dimensional look at what her life and mine are like now, as well as how they were before this illness struck her, and even how in some ways I feel I’ve become a better person through this experience.  For one thing, I’ve now made helping Alzheimer’s research a personal cause. Last fall I participated in fundraising for the Alzheimer’s Association and was able to contribute more than $200. I now give a monthly donation and sent another in honor of my aunt who just passed away. I intend to find more things I can do for the organization or for individuals afflicted with this disease. Every little bit will help toward finding a way to eradicate this terrible scourge.

I hope you’ll follow me on this alphabetical journey through a new territory for me, and I hope that those of you who are also touched by this disease will add your own thoughts and stories on how you’ve coped with it.

Saturday, March 17, 2012

Shenanigans (part 2)

Part 2

She had started calling herself Mimi, pulling on the nickname like a new fur coat. Mimi the flirtatious, the fun lover, the butterfly, transforming Irish Catholic Molly into her idealized version of what it would be like to be French and free living.

She was barely eighteen but had become a new person. And then he—the first one, her first man—had asked if he could photograph her. He was a student, too, majoring in photography. He photographed her more and more, and the pictures grew more intimate. And so did they.

He began using his camera during their most private moments. It amused him to take pictures of their “shenanigans,” as he called them.  She thought it was strange at first, a little distasteful, but also daring and wild; and that was what she wanted. It became a private joke between them. When he wanted to meet he would walk up to her on campus and whisper “shenanigans?” She smiled widely and nodded. Soon they truncated the word into “nanigs,” more mysterious, their own word. And then they began calling each other “Nanny” and giggling like children. A childish nickname for distinctly unchildlike acts.

But she soon became tired of him and of the games. She was drenched in freedom and refused to miss any opportunity. So he became one of a half dozen, then a dozen, maybe more. And when the inevitable happened she didn’t know who to hold responsible except herself, and neither did her parents. Her father forced her to leave school (“that immoral place”) and told her she’d have to get a job (“to support yourself because we won’t do it anymore”). All of her co-sinners had deserted her, wanting nothing to do with her or with the slightest tinge of accountability. Only Nanny (whose real name was Thomas) had stood beside her, willing to take responsibility. But by that time even the thought of him repelled her. And so after the procedure she had found the bank job, gotten her own apartment, and met Freeman.

And she had forgotten the photos. Until today, when his long-ago voice had broken her peace: This is Thomas. Nanny. Remember? She remembered that he had promised her never to show them to anyone else, to destroy them. But he hadn’t.

And now what was she to do?

She had gone to meet him, ready to hear his demands that she give him money to destroy the photos and not show them to Freeman. Except that he hadn’t demanded exactly that. Money, yes, but more, too.  An unspoken more. She had been prepared to be further repelled when she saw him. But she hadn’t been; in fact, she had felt the opposite, and by the time she left him, she was no longer sure who she was.

He had yanked her out of Mrs. Freeman Hazard and set her down as Molly Adair again, and she had liked the feeling. He still wanted her, she knew. He had been scarred by life and was all the sexier for it. He knew things and experiences that Freeman never would. He lived on the fly, the life of an artist, an itinerant photographer. An admittedly moneyless life, free of—she surprised herself with the thought—the way having money could tie you down. She knew that if she offered him money he would take it, and if she offered him herself, he would take that, too. There was an unscrupulousness in him now that made him attractive to her again.

The word “blackmail” never entered her mind, nor did any consciousness of herself as being victimized. What she did sense was opportunity.

She was Mrs. Freeman Hazard; that was how she was known on her committees, in her charity work, at church, at the dinner parties she gave for Freeman’s colleagues. There was no room there for Molly Adair. Yet now she just might have an opportunity to determine the course of her life again.

It astonished her that she was able to think about shedding Mrs. Freeman Hazard as easily as her bathrobe. The shock of self-realization made the barrier give way, and her thoughts tumbled out and over each other. She saw all the possibilities at once.

To do nothing, to let Thomas reveal the photos to Freeman, would mire her husband in scandal and undoubtedly lead to divorce and the loss of so much. And she had no desire to hurt him that way. She could give Thomas a lump sum of money (but how to explain that to Freeman?) and never be sure whether he would come back again.

But there were more dangerous possibilities still.

She could take the money and go away with him.

Or—and her heart began to beat faster at this thought—she could bring him a small amount now and tell him to come back next week for more. Freeman likely wouldn’t notice a small withdrawal at once; he’d think she’d gone shopping or for a beauty treatment. She could keep him coming back this way—once a week, twice a month—almost indefinitely. And it wasn’t really necessary for either of them to know whether he was coming for the money or for other reasons.

He wanted her answer by tonight.

She stared at the clock, stared at the kitchen walls, stared as the minutes went by. She shook her head. The bank closed at three, and she knew what she would do.

She stood, took her purse, put on her coat, and left the house.

The End

Shenanigans: A Short Fiction

Part 1 

Mr. Freeman Hazard, assistant vice president of the Two Rivers National Bank of Massachusetts, kissed his wife on his way out the door as he always did, then walked to his Lincoln Continental, opened the door, and started the engine. Mrs. Freeman Hazard stood in the double doorway as she always did, watching across the large Victorian’s half-moon porch, watching her husband back out of the long driveway on his way to work. She waved him out of the gate.

Satisfied, Mrs. Freeman Hazard turned back into the house to return to the kitchen. Having had coffee with her husband, she would now finish her leisurely breakfast over the paper before dressing for another day of comfortable idleness.

But the phone rang.

Picking it up, she heard a voice that wasn’t altogether unfamiliar asking for “Mrs. Freeman Hazard.” Just that way.

“Yes,” she said. “That’s me. Who is this?... Who? Oh, yes, I remember….” With some trepidation. (But it had been so many years.) “You have what?.... What kind of…..” The silence was long this time, finally broken by the sound of the receiver settling back into the cradle and a wavering breath. Then she walked up the stairs to get ready to go out.

Two hours later, when the front door opened again, it was Molly Adair who walked in, who took off Mrs. Freeman Hazard’s sheared-lamb-wool coat and flung it on the sofa, who took the pins out of Mrs. Freeman Hazard’s hair and let it fall free, shaking it and raking it with her fingers so it spread out around her shoulders the way it used to when she had been only Molly Adair.

She walked into the kitchen and opened a cabinet. She curled her fingers around the slender neck of a bottle of Scotch. As she tilted it toward her she suddenly thought no. She uncurled her fingers and the bottle swayed and rattled back flat on the floor of the cabinet. “Coffee,” she said out loud. “Coffee. And I’ll think.”

She sat with her coffee and rested her head for a moment on the kitchen table. She lifted her head again and looked around her at her brand-new kitchen, just updated in the most modern 1962 style, complete with the latest appliances, even a dishwasher, which none of her friends owned. Freeman always wanted her to have the best.  

They had been married for nine years, and it had been good. He was good to her, generous and kind. She couldn’t ask for a better husband. He was smart and hardworking; he had become an assistant vice president in an amazingly short time. And what woman didn’t want a good husband and good provider? It was all good.

She had met Freeman Hazard when he was a graduate student in finance and she was a secretary at the bank where he was interning. He had graduated, gotten a job at the bank, and proposed to her all in the same month. He told her he was going to be a bigwig at the bank someday; she told him she’d gone to college but realized it wasn’t for her, so she’d dropped out and taken a job. He was sympathetic and smug. He didn’t really believe college was for women, he said.

She hadn’t told him that those two years had been the most exciting of her life. She hadn’t told him what had excited her in those days.

To be continued...

Tuesday, March 13, 2012

The Losses Pile Up

I lost another family member this week.

This is the latest in a string of losses that’s been going on for more than ten years now. It seems that almost every year there’s another death.

This week it was one of my two remaining aunts, both sisters-in-law of my mother. Aunt Rita had been ill for a while but just made it to her ninetieth birthday before she was taken.

This is my mother’s generation, the slew of aunts and uncles I grew up with and loved. My mother’s five siblings and their spouses. Now there are only two left: my mother and her youngest sister-in-law.

My mother (second from left) with her sister Rita (far left) and her sisters-in-law Rita and Virginia

Of course, for the most part these were not unexpected as they all grew older. But a few of the losses were a shock, those in my generation, the ones supposed to be too young to die. A cousin. And, several years afterward, my brother. They were both fifty-five when they passed. And neither my aunt nor my mother ever really recovered from those losses. My mother’s sister lived only a year after losing her son; my mother’s descent into dementia accelerated.

We never lived very close to my mother’s extended family. They were all in New York and New Jersey; I was born in Illinois and then moved to Rhode Island. From here we were able to see our family more often, at least once a year, sometimes more. Yet that was enough to allow me to feel close to them. I was a terribly shy adolescent and didn’t have many friends, so my cousins meant a lot to me. I looked forward to family gatherings and enjoyed the company of aunts and uncles as much as of my cousins. And I learned a lot from them all.

Rita was an outgoing, happy person. I remember her enthusiasm, especially for the arts. She loved theater and music, loved New York City, having lived in the Bronx for many years. At parties she would always ask me if I had seen any plays, if my husband and I had been to New York City recently. She would talk about plays she had seen, in the city or in local theater. She spent many happy summers going to classical concerts at Tanglewood in the Berkshires. It was always fun to hear her talk about them. My aunts and uncles, whether blood relatives or by marriage, were all intelligent, interesting, and young at heart. I’m lucky to have had such a great family.

Now I have the dilemma of how to handle this latest loss with my mother. I visited her on Sunday, the day Aunt Rita died, and deliberately didn’t say anything. I know that she doesn’t remember that all her siblings have passed away, and she wouldn’t remember this, either, after the fact.

So do I need to tell her something that will upset her in the moment but that she’ll forget a moment later? Do I have the right to keep it from her, or am I obligated to spare her? Somehow it doesn’t seem right not to say something to her, but this is no ordinary case. This is a time when I need to think like dementia, a completely different state of mind. Is it really important that she know? At this point in her life, probably not.

Thinking like dementia is what finally taught me not to keep reminding her about my brother’s death when she would ask about him, trading truth for the relief of not having to see her face crumple and hear her heartbroken question, “why?” I learned to go along, to tell her what will keep her calm and contented. When she says she has to get home to fix David’s dinner, I tell her that his wife will do that. When she asks where he is, I tell her he’s working.

This situation is really no different.

Yet I’m planning a family party for her one hundredth birthday in August. She may well ask my cousin how her mother is doing. That’s a difficult spot for my cousin to be in. And we’re heading off to a family funeral for the first time without her. That will be difficult for me.

In the end I suppose the problem is really more mine than my mother’s. It’s about how I feel to be withholding such important information from her. It’s about the awkwardness of knowing what she doesn’t know. If it’s being dishonest, then maybe the answer is just that dementia has its own sense of honesty. Just as it has its own reality, which the rest of us have to accept. Maybe there is no choice.

Friday, March 9, 2012

Versatile Blogger!

Many thanks to Mary Beth at Pleasing 2 the Eye: http://pleasing2theeye.blogspot.com/ for this award! I love it! I'm late in accepting it, but that's not because I don't appreciate the thought.  I just finally had time to get this up and fulfill (at least in part) the requirements:

In a post on your blog, nominate 15 fellow bloggers for The Versatile Blogger Award.

              In the same post, add the Versatile Blogger Award.

In the same post, thank the blogger who nominated you in a post with a link back to their blog.

In the same post, share 7 completely random pieces of information about yourself.

In the same post, include this set of rules.

Inform each nominated blogger of their nomination by posting a comment on each of their blogs.

So here are seven random things.

1. I am a passionate lover of art, but I have no talent.

2. I have written a fan-fiction novel, and one year I wrote a “mainstream” novel during NaNoWriMo. I’m still stuck in the middle of the second draft of the latter.

3. I love tea, hate coffee.

4. I don’t like seafood or steak.

5. I hated school all the way through high school. After graduation I took a secretarial course and worked for three years, then decided I wanted to go to college. I loved it, and I never really stopped going to school for at least twenty years thereafter.

6. At various times in my life I’ve wanted to be a writer (always), a jockey, a film critic, a historian, a photographer, an art historian, a librarian/archivist, and an editor. I accomplished the last one and am still working on the first. My ambition is to be a lifelong learner.

7. I am a city person. My favorite cities (besides my home, Providence) are Chicago, Toronto, London, and New York.

As for the nominations--this is the hard part. Not that I don't love a lot of blogs, but many of my favorites do already have this award. I've picked out nine deserving bloggers for the award and reserve the right to nominate six more bloggers to be named later, as I continue to expand my blogging experiences.

My nominations are:

My Child Is Very Advanced  http://mychildisveryadvanced.blogspot.com/

Andrea's Andi's Book Reviews http://andisbookreviews.blogspot.com

and How to Laugh at Alzheimer's http://laughatalzheimers.blogspot.com

Passionate Pursuits: http://www.brendamoguez.com

Hearts in Fur Coats: http://www.heartsinfurcoats.com

I hope you all enjoy this award as much as I do.

Sunday, March 4, 2012

The Simple Life? Do We Really Want It?

So many people talk wistfully about how they would like to be able to live “simply.” But if you think about it, what would a “simple” life really mean, and would we really like it? Did our ancestors in caves live simple lives? They had to fight and scratch just for survival; their existence centered around obtaining food, fighting others for resources, and just staying alive. Primitive societies were subject to all kinds of natural perils, diseases, and early deaths. And man soon learned that problems needed to be and could be solved, and there began the evolution of our complexity. We learned to build homes to protect us from the elements; to grow food; to form communities for mutual benefit.

I don’t believe humans were meant to live simple lives. Our complex, intricate brains suggest otherwise. We were meant to dream, to imagine, to create; to make metaphors and symphonies, algorithms and architecture; to reflect on our lives and those of others. Our brains are plastic and malleable; they grow through being challenged. Our hearts and souls grow through being challenged. We grow and develop through our intricate interactions with others.

Yes, with complexity comes stress, but a certain amount of stress is necessary to spur us on to invent, to solve problems, to see things that can be improved and improve on them. Without complexity of thought we wouldn’t have philosophy or art or literature, science or medicine.

I know there are times when we all would love to escape from all the complications of our modern world. My life over the past three years certainly has not been easy, and not a day went by that I didn’t long for something simpler, for some relief from the stress and strain of caregiving. Yet now that the burden has largely passed from me, I can see what I gained from it, in patience and compassion, in learning to stretch beyond myself to really put another’s needs first. And I learned about and became involved in the world of those with Alzheimer’s and other dementias and those who are working hard to care for these patients and to find palliative medications and eventually a cure. I intend to become more involved, doing whatever I can to help those afflicted and those who search for medical answers. Will this further complicate my life? Yes, somewhat, but it will offer rewards, and so does living in a complex world, a world in which medical “miracles” are no longer beyond reach.

Could we accomplish such things if we all sat in green fields all day watching birds fly? Certainly we need some days like that, but how much would we value it if it was all we did every day? We’d become bored and would stop growing. Maybe our cries for simplicity are actually cries for more balance in our lives. I believe that to survive and grow our species needs both--simplicity and complexity--in harmonious balance. We need to exercise our brains and nurture our spirits, not exchange one for the other.