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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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22. The New Doctor (March 2006)

It's now 2006 and our family is beginning another year of living with Lewy body disease. Mother remains about the same. The one noticeable difference is that she no longer speaks at all. Until a few months ago, she would sometimes utter a recognizable word. Now, except for an occasional sound when clearing her throat, she's silent.

"Our family is beginning another year of living with Lewy body disease"
The only significant event that occurred during the second half of 2005 was Mother's need for dental work. A front tooth was loose and became positioned in a way that interfered with the aides' feeding her. The tooth beside it was loose as well. Our dentist didn't know anyone who made house calls, so we called a local nursing home to find out who they use. Their dentist was pretty expensive, but before we called him, Dad saw an ad in the newspaper for another dentist and arranged for him to come over. Mother's aide told us later that she thought she should move Mother into the wheelchair for the dental exam, but Mother kept sliding out because her body is so rigid. The dentist gave a local anesthetic and ended up removing three loose teeth. He looked around and said there wasn't any sign of infection. That surprised us, because the last time Mother had been to a dentist a few years ago, we were told that she had some big cavities and a tooth had sheared off (19. Various Problems, August 2003). We didn't treat those problems. Anyway, when the dentist wrote up the bill, he was even more expensive than the dentist from the nursing home. The funny part was that, after totaling the exorbitant charges, he deducted 10% as a senior citizen discount. Thank you very much. At least, he seemed to do a good job and even called a couple of times to make sure everything was all right.

As the new year began, a few things were on our mind: We know that Mother wouldn't want to live like this. The situation is hard on all of us, especially Dad. Another year of this. We also had some questions: Are the aides caring for Mother properly? Does Mother really need all the medications she is taking? Hospice care is appropriate only when a person is within six months of death, but how do we know when that point arrives? We decided that we should find a good doctor.

"As the new year began, a few things were on our mind ... We decided we should find a good doctor"
Before Mother got Lewy body disease, she visited a doctor regularly. Afterward, we continued to take her while she was able to sit in a wheelchair. Then she became too stiff to sit in a chair and bedridden. Since her regular doctor didn't make house calls, she was seen by a different doctor but only a few times in the past few years. We found the doctor through the referral service of a local hospital. She had no special knowledge of dementia or end of life issues, but she made house calls. After her first visit with Mother, she recommended a feeding tube, which we disagreed with and is ruled out by Mother's living will (19. Various Problems, August 2003). Last year, when Mother was gagging a lot, the doctor prescribed albuterol administered through a nebulizer and a facemask (21. Little Change, May 2005). That seemed appropriate at the time, when Mother may have had a cold. But we learned only near the end of 2005 that the doctor had prescribed the albuterol again after Mother's aide called her, and the aide was using it every two or three hours. Was that appropriate now that she no longer had a cold?

Mother has one primary aide, plus a weekend substitute. The primary aide is very diligent and we've generally left Mother's day-to-day care to her. We were surprised that she had the doctor prescribe the albuterol for such frequent use when we thought it was a temporary measure. We were also aware that the aide was suctioning Mother's mouth and throat continually throughout the day. It seemed that whenever Mother coughed a little, the aide would rush over and suction. Mother shows little reaction to anything, but she does react negatively to the suctioning. This concerned us too. (A Web site we looked at suggested that suctioning might even cause the production of more phlegm.)

"We got a doctor recommendation from the nurse at the hospice"
We were thinking about all these things, and we wondered when hospice care would be appropriate. We decided to find out more. From the National Hospice and Palliative Care Organization, we learned that all of the local hospitals have hospice programs. Son called one and spoke to the intake nurse about hospice and about Mother. The nurse said that because Mother is still eating, she could live quite a bit longer. She also said that it's not necessary to suction every time a person gurgles. Before the call was over, Son got a doctor recommendation.

We told Dad about our plan to call a new doctor and mentioned that Mother wouldn't want to live like this. He agreed and said that the situation was very hard on him too. We then told the aide that a new doctor would be visiting. Right away, she became agitated and wanted to know why we didn't get the doctor who had been there before. We explained that the new doctor was recommended by the hospice and knows about end of life issues. We didn't think Mother was ready for hospice, but we wanted to establish a relationship with a knowledgeable doctor. She calmed down, but prior to the doctor's visit, Dad said she became agitated again. Our sister had to talk to her and reassure her that she's doing a good job, which she is. She's not a nurse or a trained medical professional, but she's been good.

Before her visit, we wanted to advise the doctor about Mother's condition and some of the issues we wanted to discuss. Son faxed her this letter:

January 18, 2006

Dear Dr. I:

Tomorrow, you will be examining my mother. Before your exam, I wanted to fill you in on my mother's condition and what we would like to get from you.

My mother was diagnosed with Lewy body disease about 7 years ago. Since then, her condition has declined significantly. Today, she is completely incapacitated and completely unaware. She is cared for at home by a live-in aide. My mother has a living will and I am her health care representative. We know that our mother would not want to live this way. Therefore, the goal of any medical treatment is to provide comfort, not to prolong life.

My mother's primary doctor had been Dr. W, but since he does not make house calls, he has not seen her in a few years. Another doctor has visited, but her advice was too aggressive for my mother's situation. For example, she recommended a feeding tube. The hospice at the local hospital referred us to you. Since you were referred by the hospice, we trust that you are knowledgeable about end of life issues.

Examination Since my mother is still eating, she probably is not within the 6-month window required for hospice care, but we would like to get your opinion.

Medication My mother is still taking all of the medications she had been prescribed before her condition declined. We would like to know whether these drugs are still necessary. The drugs are:

Suctioning My mother's aide is very conscientious, but we find that she is suctioning my mother's mouth and throat continually. The suctioning seems to be unpleasant to my mother, so we need your opinion about its necessity. The aide has also been using a nebulizer to administer albuterol, which had been prescribed long ago by another doctor when my mother had a cold. The aide is still using it. Is that necessary?

We look forward to meeting you tomorrow.

The doctor came over and gave Mother a short exam. She listened to her heart and lungs, which were fine. Because Mother's arm can't be straightened, the doctor could get only the first number of her blood pressure: a healthy 115. The aide explained how she treats Mother's sores with various creams and sometimes with Duoderm (a fabric impregnated with medicine), and the doctor was impressed. Afterward, the doctor sat down with us to get Mother's history. We also learned more about the doctor, including the fact that she used to work in a veterans' nursing home. She doesn't have in-depth knowledge of Lewy body disease, but at this point that doesn't seem necessary. In response to the letter we had faxed her, she agreed that a feeding tube would not be appropriate. We also informed her that, in line with Mother's living will, we would not treat infections like pneumonia. She said that was all right, that some families would treat infections while others would not. She generally recommends aggressive treatment only for younger patients and those who can improve.

We reviewed all of Mother's medications and the doctor thought several of them were no longer necessary. Aricept is for mild to moderate dementia and Mother is well past that. There didn't seem to be any reason to continue the potassium supplement or the hydrochlorothiazide. We also took her off Plavix, a mild blood thinner, but we had some qualms about that (what if she got a blood clot in her leg again? -- see 14. Slow Decline Continues). After our long discussion, we had the aide come back and the doctor spoke to her about suctioning. The doctor recommended not suctioning for every little thing. If Mother coughs, don't suction right away. Wait half an hour and then see if she still needs it. That turned out to be great advice, and the aide is now suctioning much less frequently.

Before leaving, the doctor said she would like to return every month. We agreed because that way she could monitor Mother's condition and know when hospice would be appropriate. She could also look at the effect of having removed the medications. There's also the possibility that she would reduce other medications.

"We were pleased with the doctor, but the aide was not"
We were pleased with the doctor, but the aide was not. She told Dad a couple of times that we were trying to kill Mother, which was untrue, of course. He had to tell her not to say that again. When our sister talked to the aide, one of the things that bothered her was the elimination of the Aricept, but that is clearly unnecessary for Mother's present condition. The aide also seemed concerned about not being able to use the albuterol nebulizer so frequently. Mother does wheeze on occasion, but it doesn't seem to bother her. In looking at the aide's reaction (before the doctor came and afterward), there might be more to it than just the medications. The aide really likes living at our parents' house and might want to continue living there as long as possible. She's also a fairly religious person and has told Dad that she is against Oregon's assisted suicide law and similar things. It's also true that she is very conscientious, and it could be that she wants to do more, rather than less. We're really not certain why the aide was hostile to the doctor and the changes to Mother's treatment.

After the supply of albuterol ran out, the aide complained to our sister about it, because she thought it was so important. Son called the doctor's office to have it prescribed again, if the doctor approved. (During the doctor's visit, she had told us that she didn't think it was doing much.) The doctor's assistant said she would call the pharmacy to renew the prescription. Fortunately, our sister called the pharmacy, because the doctor's assistant had simply renewed the prescription as written by the previous doctor -- which called for using the nebulizer four times a day and giving five refills. Our sister told the pharmacist not to fill the prescription until we saw that it was really necessary. The next day, she went over and found that Mother wheezed a bit, but otherwise seemed all right. We didn't fill the prescription.

The new doctor was supposed to visit again in a month, but we asked her to come back sooner as the aide again started telling Dad and a neighbor that we were trying to kill Mother. Dad got particularly upset when the aide waited until he was within earshot and told Mother, "They're trying to kill you" and "You'll be in a better place soon." The irony was that the aide was saying this when Mother was under the regular care of a doctor for the first time in years. Before Mother's doctor returned, Son took Dad for a visit to his doctor, the same doctor who used to treat Mother. That doctor said that it was good that we found a doctor to come over regularly, and he agreed about dropping medications. In fact, he said he probably would have dropped all the medications. He thought the aide was afraid of losing her job after Mother was gone.

Before the doctor came for her second visit, Son faxed her this letter:

February 7, 2006

Dear Dr. I:

It's been three weeks since you examined our mother, so I would like to schedule your monthly appointment. For the reasons I go into below, I would like to schedule the appointment sooner rather than later.

Last week, I called your office because we were out of albuterol. Your assistant called the pharmacy and renewed the prescription. My sister, who you met, called the pharmacy to check on it and found that the pharmacist was duplicating the prescription that had been written previously by another doctor. That prescription called for administering the albuterol four times a day and gave five refills. Since we thought our aide was using the albuterol too frequently, it seemed that that prescription would give her license to continue overusing it. When we visited our mother, we found that she wheezed sometimes but it didn't seem serious. Therefore, we did not fill the prescription.

Our most serious problem right now is with the attitude of the aide toward the changes in our mother's treatment. For reasons that are not clear to us, she was not happy about having you come over and she remained unhappy after your visit. In fact, she has been telling people (our father, neighbors) that we are "trying to kill" our mother. My sister has spoken to her and she seems concerned about dropping the Aricept and about not being permitted to give the albuterol continually. Even though you found that our mother's lungs are clear, she seems to be concerned about fluid buildup, because she now spends a lot of time tapping our mother's back.

Please understand that all the members of our family agree with your treatment. At the same time, it is important for us to keep the aide happy, since our mother depends on her and she can make life miserable for our father. Being sensitive to the aide's feelings may amount to no more than including her in our discussions, reassuring her about our mother's condition, and explaining why certain medicines and treatments are not necessary. I want to make it clear that, however the aide may feel about things, we do not want treatment that will prolong our mother's life -- our mother would not want that. All treatment is for comfort only.

Please let me know when you will be returning.

The doctor came over shortly after receiving the fax. Her exam found Mother to be the same as before. When we sat down to discuss things, we asked the aide to join us, but instead she left the room. The doctor heard Mother wheezing a bit, so she recommended using the albuterol again as needed. We called the aide back so that the doctor could instruct her. The doctor also explained that wheezing and phlegm would not cause fluid to build up in the lungs; fluid in the lungs is caused by congestive heart failure (weak pumping of the heart), which Mother doesn't have. The albuterol would provide some comfort and not extend life. While the aide was there, we asked if dropping medications had a negative effect on Mother. The doctor said it didn't and started to explain that Aricept is not for advanced dementia. In the middle of her explanation, the aide asked for the doctor's permission to leave and there was no choice but to grant it.

"It is good that a doctor is visiting regularly ... We should have found a doctor a long time ago"
After the aide was gone, the doctor wanted to know more about why the aide was unhappy. The doctor assumed that the aide was used to being in charge and now she had to follow a doctor's orders. That may be. We really don't know. Whatever the case, all the members of the family agree that it is good that we have a doctor visiting regularly. If we'd found the doctor earlier, we don't think that would have affected Mother's treatment or the progression of the disease, but we are finding it reassuring now. Mother is a very sick person and should be under a doctor's care. We should have done this a long time ago.
21. Little Change (May 2005)
23.Final Days (May 2006)
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