Dear Friends of My Mother,

I am writing this letter to give you an update on my mother’s health and to respond to some of your concerns. I hope that this letter will be helpful. First, I would like to thank you for your prayers on her behalf. I am sure that they are doing good wherever they are most needed.

I know that people have developed different theories about my mother’s illness, why God has allowed her to be ill and what it all means, why she hasn’t responded to various therapies. I’m not attempting to comment here on the theories, but I think that you will be able to draw better conclusions by having the facts.

As you know, my mother lives in Bozeman and she is being taken care of in the home of Murray and Claude Steinman. Murray and I share her guardianship and we’ve been working together to make important decisions on her behalf. My mother has her own apartment in the Steinman home and she has 24-hour care. I am pleased with the level of care that she has been getting. She appears to be comfortable and happy in her environment to the greatest extent possible, given her two illnesses of epilepsy and Alzheimer’s Disease.

Unfortunately, this year her health has taken a very visible turn for the worse. I believe that this change is due, in part, to two grand mal seizures--one in November 2000 and one in February 2001. As you are aware, she had gone without epilepsy medication for much of her life, except for a brief period during her forties. After she had Seth, she started taking it again to prevent her from somehow endangering him if she had a seizure. She has been taking it ever since.

These recent seizures were surprising to her guardians and caregivers since the medication was supposed to prevent them. She was taken to the hospital on both occasions, mainly for observation as there wasn’t a lot that the doctors could do for her. She had some bruising to her ribcage from falling against the kitchen counter during the second seizure.

After some tests, we found that her blood levels of epilepsy medication were not high enough, and so, in consultation with her neurologist, we increased her medication to prevent further seizures. Our first priority is to stop her from having the seizures. The medications do have their side effects but the effect of seizures is worse. First of all, they take their toll on the brain, and second, there is the danger of her hurting herself during a seizure. After the seizures, she didn’t seem to be as responsive to her friends and relatives as she had been. She lost some of her speech capability and her memory became much worse for a time. She has never returned to the level of functioning that she had before the seizures.

There has been a huge change in my mother from October 2000, when I invited my adult sisters and brother to come to Bozeman and see our mother, and this year. Last year, her capabilities were much greater than they are now. She enjoyed petting my dog, taking her for walks and giving her treats. She would join in group laughter at jokes even if she didn’t quite follow them. She still responded to French, a language she spoke fluently. I put on a CD of Edith Piaf and we danced to it, a slow two-step. We danced with Tatiana to the “Habanera” from Carmen. She enjoyed watching the comedian Victor Borje as well as Grace Kelly movies.

Now, after her seizures, she is much less responsive to pets, television shows, music, and to people in general. The last time I brought her to see my dog, she didn’t even try to pet her. Although she can still express affection through hugs and patting people on the back, her attention span is short and her vocabulary has shrunk drastically. She can still say pleasantries like “Hello,” “How are you?” and “I’m happy to see you,” but the rest is limited. Her physical body appears to be well and all of her organs are functioning. However, she can’t move as easily as in the past and has a hard time walking. Even getting in and out of cars has become difficult for her.

She still enjoys visiting with people in her home. However, she is not very responsive. She spends hours at a time sitting in a chair and looking off into space and not speaking, not getting up or moving around. She requires help with eating and has to be treated like a child in terms of being careful that she doesn’t burn herself on the stove or on hot water.

Fortunately, she is still able to visit with her son Seth. She holds him in her lap when he comes over and they watch TV together. That’s the highest level of interaction she is able to have with him. She is not able to play games or do puzzles or play ball, but she does express her love.

It’s difficult and painful for me to share this information with you, and yet I think that it is better that you know, than not. The results of a recent CAT scan were not hopeful. The neurologist informed us that her brain was quite atrophied. It had shrunken and separated from her cranium, which is a sign of senility that one would expect in a much older woman. We have to take this into account as we consider how to care for her in the remaining years of her life. There really hasn’t been a documented case where senility or Alzheimer’s Disease has been completely reversed. There have been some therapies that have allowed people to regain some of their capabilities, but not to return to full function.

Next, I would like to respond to some of the suggestions for my mother’s care that I have received, to brief you on some of the alternative therapies we have tried, and to give you my general philosophy on how to proceed in the future. I know that you care for her deeply and would like to offer anything that is possible to help her.

One theory that has been presented is that my mother’s medication could be causing some of her symptoms. Of course, sometimes medications do cause people to become more subdued or to be disengaged from their surroundings. However, none of the medications that my mother is taking would have the effect of sedating or subduing her or making it more difficult for her to talk or walk. There are people who take the same medications she does who have active jobs. It would be nice to think that if we just took her off of her medication, she would get better. In reality, that is not an option. The only possible conclusion to draw is that her behaviors and symptoms are not side effects of her medications, but the effects of her illness.

There are some environmental agents that can produce symptoms of Alzheimer’s, such as heavy metal poisoning or mercury amalgam fillings. She has been tested for heavy metals and did go on a complete oral chelation regime to get rid of them. In addition, she had all of her mercury amalgam fillings taken out in 1992. She actually went through a very painful process where the doctor goes in and scrapes the bone to try and get rid of all of the mercury that possibly could have been in her mouth. She couldn’t eat for days afterwards. So she explored that possibility to the fullest. I think you all know that my mother was very thorough in her approach to health and was willing to try just about everything to increase her stamina and health.

Most of you know that she was careful to drink purified water and eat primarily organic foods. She also took many of the health supplements that are believed to increase memory and brain function such as DHEA, Ginkgo biloba, acetyl-L-carnitine, Coenzyme Q10. She took those supplements for at least eight years and the astonishing thing is that none of them had any effect on her condition. In fact, nothing that we have tried has caused even a plateau in the downward trend of her illness.

I know that there are reports of miracle cures from various remedies. There are other epileptics who are able to control their seizures without drugs. However, every case is individual. In spite of these wonderful, anecdotal stories, most people who have Alzheimer’s Disease follow a well-documented pattern. In my own life, I prefer an alternative health approach, just as do many people in the church. My mother was the same way. But she believed that if one had tried all the natural remedies without success, that one should follow the advice of medical doctors.

I have also received a lot of suggestions about the various drugs for treating Alzheimer’s disease. Some of them, such as Aricept, have helped Alzheimer’s patients to improve their functioning. However, most of these drugs are not appropriate for the state that my mother is at. They were developed to help people in early to mid-stage—people who are getting lost on the way to the grocery store or having trouble with their keys—to improve functioning. We tried Aricept and the only thing it did for my mother was that it made her more agitated.

It’s been almost three years since my mother was diagnosed, and at the time of diagnosis, she was exhibiting symptoms of somebody well into mid-stage Alzheimer’s Disease. At this time, she is definitely in what is called the late stage Alzheimer’s.

When my mother was first diagnosed, she was quite shaken. But soon after, she became optimistic. She believed those of you who told her that if she would only take this or that supplement or do this or that parasite cleanse, she could restore herself to health or at least have another ten good years. Unfortunately, her capacities diminished so quickly that she soon lost the ability even to say the name of her illness.

At this stage in my mother’s life, I am faced with the question of whether to continue trying extreme alternative therapies. Any kind of travel or stimulation is exhausting for her. The slim hope held out by these therapies is a mild return to capabilities that the patient possessed a few months ago or a year ago. Since none of these therapies promises a cure, but only improvement in function, I have decided at this point not to try any more alternative remedies, but to continue with some basic vitamins and mineral supplements.

I partially base my decision on a conversation I had with my mother soon after she was diagnosed. At that point, she told me that she did not want to live if she could have her full capacity. I would probably say the same thing if it happened to me. This is not to say that she does not have a quality of life and that it is not important for us to keep her safe, happy and comfortable for the rest of her life. It has just helped me to make the decision to no longer put her under the stress of further cures.

This summer, Tatiana came to visit our mother and she and I were talking about the fact that we never really said goodbye to her because she didn’t want to admit the possibility of not being cured. I am sure that those of you who know her character will be familiar with this quality. But soon, it got to the point that we couldn’t talk to her about her illness or prospects for life. We could still hug her and hold her hand, but the relationship had quickly shifted to one in which we are the adults and she is the child.

Someone told me about an article in the New York Times that discusses what’s called an “ambiguous loss.” It’s about people whose relatives have slow, progressive illnesses. It’s called ambiguous because the person is still alive, their heart is still beating and their organs are working but they can’t communicate with you as they used to. They can’t respond to you or meet your needs. I imagine that it is hard for those of you who have looked to my mother as a spiritual parent. I am sure you would like to hear some words of comfort from her, especially in this time of international conflict and turmoil. Knowing her character, I can say that she would have been here at the altar every night decreeing on the war and the terrorist attacks. And I imagine her spirit is here, appreciating all of the work you have been doing.

At this point, I find comfort in Ecclesiastes chapter 3, “To everything there is a season, and a time for every purpose under the heaven.” This finds resonance in the Taoist and Buddhist idea of viewing life as a cycle. My mother said many times, when comforting others, that the body is no more than a coat for the soul. So we move on and we take what we can learn from our experiences together. Thank you again for your concern about her. I wish you the best as you process this information.

Sincerely,

Erin L. Prophet

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