Archive for November, 2010

Alzheimer’s Disease Resources

My Mother My Child: A Daughter’s Journey Through Alzheimer’s Disease

This is part one of a longer story.

I was 28 years old when Alzheimer’s disease sneaked its way into our lives. It was the Fall of 1982 and I was just coming out of a two year post-divorce reclusive period. I was back in school, dating, and starting a new job. I felt free from the burden of my heart ache and guilt. I now could do anything I wanted and spent lots of my time in bookstores and travel agencies seeking information about the world, preparing to explore it fully. I sat this one Thursday afternoon in my studio apartment, wrapped in a soft yellow shawl sipping tea and sorting through brochures about Tahiti, Bali and New Zealand. These were the lands of my dreams- exotic, beautiful and far away.

The telephone interrupted my dreaming. It was My mother’s doctor with a diagnosis for me. Alzheimer’s Disease. He explained something about plaques and tangles in the brain and described the gradual deterioration of memory. I waited for him to mention a pill or therapy that would cure my mother’s problem. I asked him. The doctor lowered his voice in reply: “there is no known cure.” He explained that Alzheimer’s is a progressive, irreversible brain disorder that usually affects persons over age 60. (My mother was 65), but some individuals in their 40s and 50s are afflicted. “I’m very sorry.” He invited me to enroll in a new research program for people like my mom. I made those arrangements with him and hung up.

I sat in my room shivering in the dusk while the full meaning of what I learned sank in. My mother has an irreversible brain disorder which will gradually take her away from me, her only child. How will I take care of her, pay the bills, go to school? What about my new life and dating again and finding a husband? Who will want me? Where will we live? I felt certain in that moment that my life was over.

During that next year life just kind of went on. Mom continued working as a live-in housekeeper. I went to school and work. I put travel ideas on hold, though. I would receive regular phone calls from mom’s employers who shared details of her forgetfulness: sugar in the fridge, brooms in the clothes closet, chicken bones in the laundry hamper. I felt impatient with them. Couldn’t they pardon a few inconveniences? After all my mother had served them well for over thirty years. What was wrong with these people?

We participated in the Alzheimer’s research program. We met with various doctors, social workers, psychologists, students and other interested parties. Mom was asked to answer again and again such questions as who is the President of the United States? do you know what day it is? What year is this? Please count backwards from ten. Mom would laugh as she struggled with the answers. Why, Kennedy was the President. Everyone knows that! She looked at me for help and I squeezed her hand encouraging her to answer the best she could. Secretly I found the whole thing annoying. What difference did it make what day it was? I explained to these people that my mother lived a simple life. She was kind and thoughtful. She loved all living things, and she never ever forgot to feed the birds. She was self-reliant and very practical. There wasn’t anything she couldn’t mend with simple tools or needle and thread. She sang beautiful soprano and read scores of books by Dale Carnegie, Howard Vernon, and Norman Vincent Peale. She believed that if you only filled your mind with pure and simple thoughts, your life would be blessed with happiness and good health. Wasn’t this important? They smiled politely and nodded. Some would place a reassuring pat on my arm. I can still remember the click of ball point pens recording whatever they were finding notable and continuing to ask their relentlessly dumb questions.

After a year of this, the whole thing seemed too inane to continue. These visits were not helping my mother and they were a great hassle for me. Meanwhile the stories from Mom’s employers continued. She was now mixing the darks with the whites, throwing $100 silk panties in the hot cycle and flirting with the repairmen. She would have to go.

I found us an apartment and gave Mom the master bedroom with private bath. She hated it and was angry with me for making her live there. She wanted to work and be useful. She wanted her old room at the house she lived in for 31 years. If I had to pick the most agonizing period of my mother’s illness, this was it. She had enough understanding to know something terrible was happening to her yet I could not find the words to ease her suffering.

~To be continued.

One Point in Time

I sat there among the paper, projects, commitments, emails, bills, promises and looming deadlines. And I sat and continued to sit, unable to move on any of it. Full blown inertia set in and I was hopelessly stuck in it. This familiar moment in time is one I relive over and over and have little warning when it will show up. Several inner sparks tell me to gather the bills, write an email, or sort through the file. Others say create a plan, prioritize, call someone. Still more admonish my laziness;others push my head into my hands and plead with me to do something! No thought of threat or reward can lift me. I have lost many opportunities, much money, jobs, potential clients and a few friends over the years- all traceable to one or more of these quick sand moments in time.

On its face this does look like simple procrastination or laziness. I have work to do and promises to keep and I am doing nothing. There are reasons why I’m in this predicament- most of them the results of choices I made. I took on too much. I waited too long. I over-promised. I allowed too much to accumulate. I did procrastinate and succumb to more interesting pursuits instead of doing what needed to be done when it needed doing. This is all true. There is no one to blame but myself.

I have shelves lined with advice for how to organize my time and space; how to manage my things and my schedule. These are valuable resources in my life and in my work as a life coach. The myriad tips and tools for managing oneself are like bricks and mortar for creating an empowered existence. Each tool is an opportunity to build a stronger foundation and a calmer, more successful life. I can start fresh each day with a new way of being: From this day forth, all my incoming mail and papers go in the red basket. Starting right now, I check my emails three times a day and turn off my Blackberry between the hours of 2 and 4pm. I do a lot of cooking on Monday nights so that I need not cook for several days. As soon as I accept a new project, I outline its parameters and create a time line for completing it. These are all tools I use to create order in my life. When I commit to these kinds of activities, over a period of weeks, months, and years, much of the mundane aspects of living are automatically handled. With the start of these kinds of habits I have come miles on this journey toward living a fully harmonious life.

And yet even the finest sieve lets particles through. Despite my efforts to form good habits and commit to them, I sometimes forget to turn off the Blackberry. I’ll sign up for a Monday night exercise class or the red basket is co-opted for another purpose, leaving the incoming papers to fend for themselves. Without a contingency plan, there go the systems. This partially explains why, on this particular day, I sat there among the paper, projects, commitments and looming deadlines and felt so overwhelmed. My pre-frontal cortex, that part of my brain that plans and organizes and handles the details of my life, seemingly shut down. All the books, advice, tools, programs, habits and support groups in the world could not help me in that precise moment. I was stuck.

One Point in Time:
Sitting there at my desk at 7:07pm, mental wheels spinning wildly, I saw in my mind’s eye, a large period. I picked up my pencil and drew that large period on a piece of paper. Then I put my finger on that period. I thought of it as a pause button. STOP! Stop spinning. Stop thinking, ruminating, judging, deliberating, drowning. STOP. Breathe. Keeping my finger on the dot, I then I drew a small circle. What should be the very next thing I do? I wrote it in the circle. (walk to ladies room). When I returned to my desk I put my finger back on the circle. I drew a triangle. What is the very next thing I should do? Pack up to go home. I put my finger on the triangle, took a moment to pause and breathe. I packed up to leave. I drew a square. What next? I wrote in the square Go Home.

This whole process from the moment I drew the first period to the time I locked my office door took 7 minutes. At another time I would have sat there until 10pm feverishly plugging away. During my pausing moments, I focused only on what I need to do in the next moment. You can only fill a moment with one activity. My periods and other patterns represented those moments for me- one at a time. They allowed me to pause, and consider what do I really need to do next. I could take myself home to my family and make dinner for us, and sit down and eat it. Once I did that, I came to my home office and drew a diamond shape: 10 minutes plan for tomorrow. I made a list of 5 important things to take care of, with a reminder to place Periods through out the day in order to STOP, breath, notice, and decide. What’s Next?