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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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23. Final Days (May 2006)

On Thursday, April 20, Son came over to our parents' house with the groceries for the week. As he brought the bags into the kitchen, he heard a strange, regularly repeating sound. Upon investigating, it was Mother — it was the sound of her rapidly gasping for breath. The aide had her sitting up in bed; her skin had a bloodless pallor, her lips were a dark brown; her mouth was drawn back in a grimace. The aide said she had been like that since the previous evening, but despite her obvious distress, the aide hadn't said anything because "when she said things before, she got into trouble." This seemed to be related to the poor attitude the aide had adopted because of her dislike of Mother's new doctor (see 22. The New Doctor, March 2006). The aide hadn't called us or attempted to suction or use the nebulizer, although the doctor had clearly told her that she should do both as needed, which seemed to be the case now.

"Mother's lungs were filled with fluid ... She had developed congestive heart failure"
Son called the doctor, who also thought initially that Mother's distress could have been due to a buildup of phlegm. However, suctioning and administering the nebulizer now had no effect. (Having Mother lie flatter did improve her color.) Later that afternoon, the doctor came over and found that Mother's lungs were filled with fluid. She thought that Mother had developed congestive heart failure, which allowed her lungs to fill up due to weak pumping of the heart. It was not something that could be fixed with a suction machine and a nebulizer. For all these years, Mother's heart was strong and her lungs were clear, but now the doctor said she was in very bad shape and would probably not live through the weekend. The doctor called the hospice but it was too late for them to come over. The doctor urged them to come early the next day.

The doctor prescribed the two drugs used by the hospice and had us fill the prescriptions right away. The drugs (morphine sulphate and hyoscyamine) were supposed to relieve the shortness of breath and any pain and help dry out the secretions. Both come in a liquid form and were to be squirted into Mother's mouth periodically throughout the day and night. (The local pharmacy had the hyoscyamine in pill form only. This turned out to be hard to administer. Since Mother was breathing rapidly through her mouth, there wasn't much saliva to dissolve the pill, so we squirted in a little water with an eyedropper. The next day, the hospice nurse made sure we got the liquid form of hyoscyamine.) The doctor also filled out a DNR (do not resuscitate) form to keep near Mother's bed. That evening, Son and Daughter called our other siblings to tell them of the serious turn that Mother had taken.

Son was going to stay and give the drugs until 11 p.m. that night and then Daughter was going to tend to Mother for the remainder of the night. But Mother's breathing continued to be rapid with a loud gurgling and, even more disturbing, her mouth sometimes filled up with foam. After Daughter arrived, Son stayed on because he thought Mother was going to die that night and didn't want Daughter to be there alone. Mother's breathing remained rapid, gurgling, and somewhat erratic throughout the night.

"The hospice nurse said that someone in Mother's condition survives anywhere from a few hours to a few days"
Mother survived the night and the foaming stopped. The next morning, the doctor called and explained that foaming is typically an end of life sign. Soon after, a nurse and a social worker arrived from the hospice. They had already talked to the doctor that morning and were aware of the situation. The nurse said that Mother's condition was very poor and usually someone in that state survives anywhere from a few hours to a few days, but definitely not for weeks. She said that, although Mother's breathing was painful for us to hear, she wasn't in pain. She suctioned and repositioned Mother, which made her breathing less loud. It was still rapid, however, and Mother's upper body moved with each breath. The nurse had an oxygen machine delivered to make her more comfortable. Mother could no longer eat or drink, but we could put a chip of ice in her mouth or swab her mouth with some water.

Dad wasn't aware of how much distress Mother was in, but he knew something was up since all of his children were around and the doctor had visited. When the hospice people were there, we had him come down and told him how dire things were. He had previously said that he didn't want Mother dying at home. That was mainly because he thought she would stop eating at some point and he couldn't bear the thought of her wasting away over a long period of time and possibly being in pain. The social worker spoke with him and addressed these issues. Mother wasn't in pain and it seemed that her death was imminent. After treating Mother at home for all these years, it only made sense to see it through to the end. Dad agreed.

The hospice service was based in a local hospital. It provided us with regular visits by nurses, who were always very nice but, after the first visit, stayed relatively briefly. In addition, a social worker came the first day; an aide was scheduled for three times a week to give our regular aide a break; and a pastoral counselor visited that first week and would be available for 13 months after Mother's passing. The hospice had all medications and any supplies we needed delivered to us. They gave us a telephone number that we could call around the clock if we had questions or needed assistance.

"We took turns sleeping over and giving Mother morphine through the night"
From the beginning, we four siblings took turns sleeping over and giving Mother the drugs through the night. The aide did it during the day and seemed to do her job all right. By Saturday morning, Mother's breathing had slowed and quieted down, but the nurse who visited that day said that Mother's lungs were still very congested. She'd been on call the previous night and had been told to expect a call from us because it was likely that Mother would pass away Friday night. That's why it was a surprise when, the next day, the Sunday nurse said that Mother's lungs were not too congested.

The nurse who visited originally came back on Monday. She remarked that it was extraordinary how much Mother's lungs had cleared up. We asked whether it might be possible for her to eat or drink. This would require reducing the morphine she was getting, which, although a relatively small dosage, would make it difficult to swallow. However, the nurse was concerned that Mother would aspirate food (i.e., the food would go into her lungs resulting in pneumonia and other problems). She discouraged us from doing this. She thought it was possible that Mother had already been aspirating food and liquid before being in hospice care.

The hospice nurses suggested that the aide administer an enema to remove any waste and prevent a blockage that can sometimes be uncomfortable. When the enema was unsuccessful, a nurse provided suppositories, which were also ineffective. The nurses decided that any waste was probably minimal and so chose not to perform a more intrusive procedure that could have been uncomfortable for Mother.

On Tuesday, all of Mother's medical equipment was exchanged to satisfy Medicare's requirements. Hospice is covered 100% by Medicare and while a person is in hospice all of her treatment must be under hospice. Mother had a hospital bed, air mattress, lift, wheelchair, nebulizer, and suction machine, which were covered mainly by Medicare, but the medical supply company that provided these items was not the one used by the hospice. Therefore, the hospice nurse had to call the company they use and arrange to have them deliver new equipment and she had to call the company we had used and have them pick up the old stuff. It seemed kind of silly, but that's what happened.

During that whole week, Mother's condition remained about the same. Her breathing was regular with only a little gurgling. Sometimes, she would cough a bit, but shifting her position seemed to help. Dad came to see her every day and remarked that she seemed peaceful and serene. In addition to visits from the hospice nurse, the pastoral counselor came over. (Previously, the leader of our parents' own religious congregation had visited.) She was a nurse who had continued on in counseling. She spoke to Dad and us for a good while and said a nonsectarian prayer over Mother and later with Dad. She said that people who aren't eating or drinking usually survive about a week.

There was little change until the morning of Sunday, April 30, when Mother started taking short, rapid breaths. Daughter had been on duty that night, and she paged the hospice nurse. The nurse reported that Mother's lungs were congested again and she had a fever. Although her breathing didn't seem quite as bad as it had been a week before, the nurse said that things were worse because Mother was now much weaker.

" At 1 a.m., Mother was still hot and breathing rapidly. At 2 a.m. on May 1, Mother had passed away"
A neighbor who is a nurse was over several times on Sunday, trying to keep Mother comfortable by suctioning a bit and helping to shift her position. She did not think things looked good. That night, it was Son's turn to stay over. At midnight, Mother was still taking short, rapid breaths and was feverish. As Son held his hand to Mother's forehead, her breathing stopped for a few seconds then it started again. This happened a couple more times. At 1 a.m., Mother was still hot and breathing rapidly. At 2 a.m. on May 1, Mother had passed away. Her forehead was still warm, though not hot like before. There was the sound of air rustling, but it was coming from the oxygen machine until it was switched off. Mother's arms and hands, which had been stiff and tense, were loose for the first time in years. At times, we had worried that the person who was there when Mother died would be devastated. It didn't turn out to be that painful because it had been so hard to see Mother's decline in those last 12 days. Needless to say, despite the number of years she had been ill, her death was still a blow to us.

Son called Daughter, who lives nearby, and she came over quickly. He also called the hospice, which paged the on-call nurse. The nurse returned the call quickly and came over too. She was the nurse who had visited the first Saturday Mother was in hospice, the nurse who hadn't expected Mother to survive the day, let alone over a week. She said that Mother seemed peaceful. She filled out the death certificate and called the funeral home. She suggested that we tell Dad and our other siblings so that they could have the option of seeing Mother. We woke Dad and told him about Mother's passing. He immediately got dressed, but at first he said he didn't want to see her. He then changed his mind, came down, and said a prayer over Mother. The funeral took place soon after.

22. The New Doctor (March 2006)
24. In Memoriam (May 2006)
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