Friday, May 11, 2007

What Do You Want to Do With the Time You Have Left?

I used to work as a family consultant for people taking care of a loved one with Alzheimer's Disease, Parkinson's Disease, stroke and other neurological illnesses and injuries, and the vast majority of the patients involved were in their 70's, 80's, and 90's. There were no cures for any of these diseases, at least not in the later stages. All of these illnesses were correlated with high incidents of anxiety and depression and I have a strong conviction that some of these illnesses could have been reversed in the very earliest stages if the emotional and mental patterns underlying the illnesses could have been addressed. However, that's a topic for another blog entry or more.

I wrote a monthly newsletter when I did this work (same as I do now) and I'm currently rereading all those old articles for compiling into a book. While writing an introduction to accompany these articles I realized that the main thrust of my job (my current career as well?) was to help people come to grips with accepting the truth of their lives as they existed in that moment and get ready for and work with the changes they might need to make. Sometimes there was no change besides acceptance of the present day situation that needed to happen. If their loved one was resistant to alternative forms of help or secretly ready to pass on, there was nothing that could be done besides shepherd them through the process of letting go of their previous lives.

And yet that was hardly ever done. 99% of the people who walked into my office insisted that I help them figure out how to keep things the same. "Mom has to stay home as long as possible!" they would say. "She'll never submit to living in a nursing home. But I have to find a way to do everything that needs to be done because they won't allow a stranger into their house!" And on and on.

The idea that the time for transitioning was here rarely came up. After all, this wasn't hospice care. These patients didn't have a diagnosis that said they had 6 months or less to live. Many of them deteriorated one painful step at a time over the course of years and years. Their families were living with death and change without the permission of their loved ones, themselves, or our society to really let that reality in. How many of these patients said good-bye or made arrangements to heal old rifts or leave a special legacy for the ones they were about to leave behind? How many of them decided to go after special dreams in the time they had left, took time to travel, visit relatives who moved away, or did anything left over that they really meant to do?

They weren't of that mindset. Most of them spent all day in front of their television sets. Disconnected from active engagement with life. Stationary as much as possible. Not really happy but not admitting to checking out.

An exception that proves the rule stands out. She had a familial form of Alzheimer's Disease and was not clinically depressed. Quite the contrary. She had a great relationship with her kids who visited her and took her home with them for mini-vacations on a regular basis so her husband/caregiver could get some rest. She worked in her garden every day—in the end she ripped up all her plants and replanted them again the next day when she forgot why she took them out over and over again—but she was happy and engaged. She remained social. She went to church every day and, even when she could no longer figure out the appropriate steps to make a peanut butter sandwich, everyone who met her found her a pleasure and delight to talk with. What stands out most in my mind is that most people who are diagnosed with Alzheimer's Disease, especially the familial form, are dead within 7-8 years. The last time I saw her she was still considered to be in the early-mid stage of the disease and she had had the diagnosis for 15 years. She KNEW she had the disease, she talked about the diagnosis and what it meant openly, she participated in putting her affairs in order, and she lived her life to the fullest because she knew she was supposed to die from it and didn't really know how much time she had left.

Ironically, I think her family's choice to live as well as possible with the prospect of her death was the reason why she was having a longer and more functional than average (at least for Alzheimer' Disease) kind of life. We all could stand to benefit from that.

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