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Lewybodyjournal.pdf

Lewy Body Journal:
Our Family's Experience with Lewy Body Disease
e-mail: comments "at" LewyBodyJournal.org Journal Contents
Journal Introduction .11. Who Mother Was.22. First Hints of Trouble.33. The Signs Become More Pronounced.54. Back to the Neurologist.75. Aricept and Mother's Quick Decline.86. Columbia Presbyterian Hospital .97. Dr. Jekyll and Mrs. Hyde.118. Living Arrangements and Daycare .139. We Need Aides .1510. Things Get a Bit Worse.1711. The Wheelchair Ramp .1912. "I Want to Die".2013. Hygiene and Dental Care .2114. Slow Decline Continues.2215. Living Will.2416. Coping.2517. Future Concerns .2718. The Wound Doctor (April 2003) .2819. Various Problems (August 2003).3020. Stasis (May 2004) .3221. Little Change (May 2005).3522. The New Doctor (March 2006).3823. Final Days (May 2006) .4424. In Memoriam (May 2006).48 e-mail: comments "at" LewyBodyJournal.org Journal Introduction
This journal is an account of our family's experience after our mother became ill with Lewy body disease. It was written by two of Mother's children, with input from theother two. (For purposes of clarity, the son who accompanied Mother and Dad on doctorvisits is referred to as Son.) Documenting our mother's decline has not been an easy task. Plus, we want to maintain our family's privacy. Nevertheless, we thought that writing this journal wasimportant. Knowledge is invaluable. As hard as it might be, reading this journal can helpfamilies learn what to expect when a loved one is diagnosed with Lewy body disease andhow to care for that person, particularly if you choose to care for the person at home. Ourfamily has gone through many of the challenges you will face. We hope you can learnfrom what we went through.
A second goal of this journal is simply to make Lewy body disease better known.
Everyone knows about Alzheimer's disease, but most people haven't even heard of Lewybody disease, despite the fact that it's the second most common form of dementia. Wehope this journal will help make people (including health professionals) more aware ofthe disease.
Mother passed away in May 2006. This journal chronicles our experiences from early in her illness (1997-98) until then.
e-mail: comments "at" LewyBodyJournal.org 1. Who Mother Was
Mother was born in 1927 and grew up in the Bronx, New York. Mother's immediate family consisted only of her parents and a younger brother who died inchildhood, but she had a large extended family of many cousins, aunts, and uncles withwhom she was very close. Family was always important to her. Her own mother sufferedfrom a form of dementia (although we don't know the specific type — back then, thesethings weren't diagnosed as well as today) and died in her late seventies. We are unawareof any other family member suffering from dementia.
"An excellent student,
City public schools then went to college, Mother earned two master's
degrees"
excellent student, she subsequently earneda master's degree in education. While inher forties, Mother returned to school for a second master's degree in learning disabilitieseducation.
Mother married Dad in the early 1950s. Eventually, they moved to a suburb of New York City , where they raised their four children.
Mother was a teacher. First, she taught in the New York City public school system. After moving to the suburbs and while her children were young, Mother taughtbusiness education classes at the adult school, which offered continuing education classesat night at the local high school. Because of Mother, many women who had taken timeoff to raise their children learned the skills they needed to return to the workforce. Whenher children were older and in school, Mother taught elementary school children who hadlearning disabilities. After she retired from teaching, Mother volunteered at the townlibrary and soon afterward became a staff member there.
"Mother led a full, active, and
community. She was president of the local healthy life"
and county chapters of the League ofWomen Voters, chairperson of the townplanning board which approved all new building construction, treasurer of the friends ofthe library, and treasurer of the town museum. She participated in other communityactivities as well.
Mother had diverse interests. She loved to read books on many different subjects, and she particularly enjoyed mysteries. She followed politics closely. Mother was adeptat many needlecrafts including intricate bobbin lace and knitting. She loved spendingtime outdoors, be it hiking or sitting in the backyard watching the squirrels and the birds.
She had many friends and acquaintances. She never hesitated to visit someone who wasill or to offer her assistance. In sum, she led a full, active, and healthy life.
e-mail: comments "at" LewyBodyJournal.org 2. First Hints of Trouble
The first hints that Mother was ill were subtle and easy to dismiss, even by professionals (indeed, they were dismissed). That they were signs of illness becameapparent only in retrospect. We took Mother to a neurologist for the first time after sheexhibited a troubling, albeit temporary, problem. This was in late 1997 or early 1998when she was 70 years old.
"While reading a passage out
first visit to a neurologist occurred at the loud, the words on the page
looked funny"
where the attendees swap bookrecommendations. Mother, who was agreat reader, was leading the session. She was reading a passage of a book out loud to theassembled group when all of a sudden the words on the page looked funny. Shecontinued reading without apparently knowing there were any other problems, until shelooked up and saw the expression on the faces of the others in the group. It turned outthat what she was saying was gibberish. In a few minutes she was fine and drove herselfhome. Mother's family doctor sent her to a hospital for an MRI brain scan and an ultra-sound of the arteries in her neck and arranged for her to be seen by a neurologist.
It was on this occasion that Dad told us for the first time that he already thought there was something wrong with Mother, that her behavior was "off" in some ways.
Suspecting that she might be developing Alzheimer's disease, he hoped that theneurologist would test Mother's memory. The neurologist, however, did not do so. Inretrospect, the neurologist may not have been very good. It was also the case that, despiteDad's concerns, Son, who accompanied Mother to the neurologist, didn't ask the doctor totest her memory. On his visits home he'd never seen any problems, and frankly, he didn'tknow how to bring up the issue in front of Mother. The neurologist determined thatMother's MRI was normal for someone of her age, and he performed a rudimentaryphysical exam, which found no problems. His diagnosis was that Mother had had a TIA(transient ischemic attack), a temporary neurological problem that was not necessarily aharbinger of future problems. He agreed with the family doctor's prescribing of Plavix, amild blood thinner. We let it go at that, and Mother was obviously greatly relieved, sincethe incident at the library was so disturbing for her. Mother remained anxious aboutreading aloud in public and practiced occasionally for us. A couple of months later, shewas happy to report that she had read aloud at a book meeting and everything went well.
Was the TIA an early sign of Lewy body disease? We don't know, but it seems likely that it wasn't directly related, because the disease later manifested itself sodifferently. On the other hand, it could have been a hint that not everything was right.
"Dad was concerned about
(a different one) came in the fall of 1998.
Mother's uncustomary
forgetfulness"
e-mail: comments "at" LewyBodyJournal.org thought her behavior was "off," and he had some anecdotes about uncustomaryforgetfulness. For example, one day when the two of them were going to a lunch meeting,Mother prepared them a bag lunch of cheese sandwiches. When it came time to eat, theydiscovered that Mother had included slices of bread, but no cheese. He also remarked thatMother had abandoned her needlework hobbies. At this point we children hadn't seen anysigns of problems. The only possible change was that when we came to visit for the dayor for the weekend, Mother was unusually "clingy," that is, she wanted to be around usall the time.
The neurologist did a physical examination and administered the Mini Mental Status Exam, a short test of memory, language, and thinking. Mother made no errors.
Consequently, it was easy for the neurologist to disregard Dad's anecdotes as minorincidents of normal aging. As subsequent events showed, Dad was in the best position tonotice that something was awry, and he was right.
e-mail: comments "at" LewyBodyJournal.org 3. The Signs Become More Pronounced
By late 1998 or early 1999, like Dad, we began to notice during our visits that Mother's behavior was "off." One early problem was that Mother's perception of timeseemed to be off-kilter. For example, she would start to prepare dinner at 2:30 p.m. Whenwe told her it was too early, she would stop while saying that it takes time for the food tocook. Half an hour later, she'd be back in the kitchen starting dinner again. Dad alsoreported that she would sometimes wake up in the middle of the night and begin to dressfor the day.
"Now Mother took short,
slow, guarded steps"
would no longer prepare the big dinner.
When asked why, she said, "I've beendoing it all these years and now it's time to pass the baton." This was reminiscent of herreason for retiring from her part-time job at the library ("I've been working all my life andnow it's time to retire.") or for forgoing household chores she'd done previously ("I'mretired now."). By early 1999, we started noticing that Dad was the one who was mainlypreparing their meals with Mother's assistance, instead of the other way around.
At about this time, Mother tripped on a staircase at home. While bruised, fortunately she wasn't seriously injured. Dad suggested that she use a quad cane he had.
Mother liked the idea, but she had trouble learning the procedure for using it on steps. Wealso noticed that Mother's walking had changed. She had always been a strong walker,but now she took short, slow, guarded steps.
"Mother lost her ability to do
ability to do math, something at which she math"
had previously excelled. Mother wasresponsible for maintaining the checkingaccount, but she could no longer balance the checkbook.
While we noticed these problems with Mother and saw that she was having some difficulties, we didn't want to believe it. After all, she had just been to a neurologist a fewmonths earlier and she'd done so well on his tests.
In retrospect, there were other, even earlier signs. We believe that Mother suspected that something was wrong for some time before we had noticed anything, butshe kept any concerns to herself. Later, it became evident that Mother had decided toretire from her job at the library the previous year because she realized that she was nolonger capable of doing it. Her responsibilities there had included paying invoices andoperating a computer.
There was also an incident a year before when Mother lost her balance in front of the post office and fell breaking her nose when she struck the ground. At the time, wethought nothing of it, but looking back, that fall (plus two others we remembered later) e-mail: comments "at" LewyBodyJournal.org may well have been one of the first signs of the physical effects of Lewy body disease —problems with balance, stiffness of limbs, and difficulty walking.
In the years following Mother's diagnosis with Lewy body disease, we couldn't help but look back at some prior incidents and wonder whether they were early hints of aproblem. Human behavior is so variable that it's impossible to know. With regard toMother's falls, she was seen by doctors after each one and none brought up the possibilityof a neurological problem.
e-mail: comments "at" LewyBodyJournal.org 4. Back to the Neurologist
In late winter or early spring of 1999, Mother went back to the neurologist accompanied by Dad and Son, who described to the doctor Mother's problems includingher walking. Once again, the doctor administered the Mini Mental Status Exam, but thistime Mother made two or three mistakes, which still wasn't bad but worse than a fewmonths earlier when she made no errors. We privately expressed surprise at her goodperformance on the test, because her problems at home had become obvious.
"Our family assumed the
diagnosis was Alzheimer's
disease"
dementia for that matter. (On a later visit,he showed us his records in which he hadwritten his diagnosis of Lewy body disease.) Perhaps, he feared that talking aboutdementia would upset the family. He only said that Mother had some cognitive problemsalong with aspects of Parkinson's disease. He prescribed Aricept, which was then theprimary treatment for Alzheimer's disease. Upon hearing that Aricept had beenprescribed, our family just assumed that the diagnosis was Alzheimer's.
e-mail: comments "at" LewyBodyJournal.org 5. Aricept and Mother's Quick Decline
Mother started taking a 5-mg dose of Aricept on a Friday, with the expectation that after a while the dose would be increased to 10 mg. By Sunday, however, we weredistressed at her condition. She was extremely agitated and forgetful. Just two daysbefore, she had made two or three errors on the neurologist's exam, but now it didn't seemlike she could remember anything.
"Mother started taking
too. That day, a friend was picking her up Aricept and became
to take her to a party. Mother was greatly extremely agitated and
concerned that her friend might not drive forgetful"
her home afterward, stranding her at theparty. Continual reassurance from uswouldn't suffice, and Dad had to call the friend to ask explicitly if she would driveMother home. Mother went to the party and had a good time, but we knew we had to callthe neurologist to find out what we should do.
The neurologist's secretary relayed messages between us and him, and his response was to stay on the Aricept. We did, but we decided that we needed to get asecond opinion. Our immediate problem was the effect the Aricept was having onMother. A second concern was that we get the right diagnosis. We knew that Alzheimer'sdisease was usually diagnosed only after ruling out everything else, but this neurologisthadn't done a lot of testing.
"Her agitation subsided, but
is a neurologist at Columbia Presbyterian the sudden decline in
Hospital in New York City. He referred us memory remained"
to a behavioral neurologist, and we madean appointment. During the couple ofmonths between seeing the old neurologist and the one at Columbia Presbyterian, Motherkept taking the Aricept at the 5-mg dose. Her agitation subsided, but the sudden declinein her memory remained. We have heard that Aricept seems to have helped many peoplewith Alzheimer's and Lewy body disease, but we think it had a negative effect on Mother.
Sure, her disease would have caused a decline anyway, but the Aricept seemed to speedup the process. Possibly, it was no more than a coincidence that her decline came justwhen she started taking Aricept, but as we describe later (10. Things Get a Bit Worse),we have further reason for suspecting the Aricept. This is a sore point for us. It surewould have been nice to have had a neurologist who would have talked to us directly onthe phone in a timely manner. Fortunately, doctors now have other medications availablein cases where Aricept doesn't agree with the patient.
e-mail: comments "at" LewyBodyJournal.org 6. Columbia Presbyterian Hospital
Mother's appointment at Columbia Presbyterian was scheduled, and she was anxious about it. She knew her abilities had declined, but she was eager to do well on thetests she would be given. From her experience with neurologists, she knew that they weregoing to ask her certain questions, and for some reason she fixated on one of them inparticular: she was determined to get the answer right when they asked her the date. Afew days before her appointment, she wrote the date of her doctor visit on a slip of paperand put it in her pocket. Continually over the next few days, she'd pull out that paper tocheck the date, put the paper away, and then forget the date. It was very sad to watch.
"Mother was becoming lost in
was also becoming lost in her own home.
her own home"
Initially, this happened only at night whenshe moved around the house with thelights off. After getting up in the middle of night to use the bathroom, Mother sometimesended up returning to a bed in one of her children's old bedrooms. On another occasion,instead of going to the bathroom, she wandered downstairs and urinated on a kitchenchair. Later on, she became confused even when the lights were on and during thedaytime. For example, one evening while watching television with Dad, she went downto the kitchen for a bite, became confused, and phoned Son for help. She told him that sheseemed to be alone in the house, which made him concerned that something might havehappened to Dad. He had her hang up the phone and told her not to answer when hecalled back until the phone had rung six times. Fortunately, after a few rings Dad pickedup and went down to rescue Mother. On another occasion Mother became disoriented inthe afternoon and phoned the police for help.
At Columbia Presbyterian Mother went through a battery of exams and tests that took several days to administer. On her first visit, after taking her history, the neurologistrecommended stopping the Aricept because of the problems we had associated with it.
(Over the next two months while she was off the Aricept, she did not seem to change forthe better — or for the worse.) The neurologist saw her anxiety about not doing well onhis memory tests and asked if she'd be more comfortable if her relatives waited outside.
She said she would be, so we don't know how well she did, but by this time ourexpectations were low. In addition to the neurological exam, Mother had to have a batteryof tests: extensive blood work, another MRI brain scan, a SPECT brain scan (to examineblood flow in the brain), and neuropsychological testing (a series of tests of cognitivefunctions, including memory, thinking, language, and visuospatial ability). Theneuropsych testing was particularly trying for Mother, because it lasted for several hoursand her poor performance made her feel bad.
"They told us Mother had
Lewy body disease, and it
had no cure"
was a degenerative dementia with no cure.
We had never heard of it before and were e-mail: comments "at" LewyBodyJournal.org surprised because we had assumed she had Alzheimer's disease. We had some hope thatthe presumed Alzheimer's diagnosis was wrong and that Mother had a curable disease.
Instead, the Alzheimer's diagnosis was replaced by the diagnosis of another, less well-known, incurable dementia. Mother's reaction to the diagnosis was interesting. She knewabout all of the intensive research that had been going into Alzheimer's disease, so shesaid, "It's almost too bad it's not Alzheimer's disease, because they're learning so muchabout it." The neurologist prescribed Aricept again, the medication for Alzheimer's disease, because that was the best they had to offer, although it was unclear how well it had beentested on people with Lewy body disease. He also prescribed a medication to treat thehallucinations and delusions Mother was beginning to experience. He prescribedSeroquel, but later on, another neurologist thought that drug would worsen Mother'smotor problems. He recommended Zyprexa instead.
Being a research institution, Columbia Presbyterian also gave us a form describing an investigation they were conducting. The form asked if we'd donateMother's brain post-mortem for analysis. Research is good, but this was a bit disturbingand Mother mentioned it a few times over the next week. One helpful piece of advice wasto plan ahead, because this is a progressive disease, and to seek help when needed.
e-mail: comments "at" LewyBodyJournal.org 7. Dr. Jekyll and Mrs. Hyde
People with Lewy body disease often have hallucinations about inanimate objects moving or seeing things that aren't there. Mother had these problems too, in a relativelymild way. Usually, these problems occurred only in the late afternoon or evening. This"sundown effect," in which symptoms worsen in the late afternoon and evening, is fairlycommon among people with Alzheimer's disease and apparently for those with Lewybody disease as well. As noted, these problems were relatively mild, but sundown alsobrought a delusion that caused a lot of difficulty and grief in our family: Mother began tothink that she wasn't in her own home and that Dad wasn't her husband.
"Mother began to think that
she wasn't in her own home
and that Dad wasn't her
husband"
would usually call one of her two childrenwho live locally and express her direcircumstances. They started to dread getting a phone call. If Mother called and said,"Hello, this is Mother," they'd know she was all right; if she said, "Hello, this is B— [herfirst name]," then they knew they were going to be asked to take her home. Mother couldreally make us feel guilty saying, "I'm relying on you," "You promised you'd help me,""My parents are waiting for me and don't know where I am," among other things. Whentold that she was already in her home and that Dad was her husband, she'd say, "Yes, thisis my home, but it's not my home" or "There are two identical houses and two identicalDads and I'm with the wrong ones." These delusions hit Dad particularly hard, since Mother could become quite agitated and adamant that she had to go home. Although he knew it was all due to theillness, it was hard for him to deal with her agitation and hard for him not to take itpersonally, since Mother seemed to be saying that she didn't want to be with him. Hewould tell Mother that she's staying there and she'd be sleeping in the bed with him, thebed they'd shared for nearly 50 years. From Mother's perspective this was horrifying,because she didn't want to share a bed with someone who wasn't her husband. If Mothercould be calmed down and did go to bed, the next day she was fine — until the afternoon.
Dad started saying she was like Dr. Jekyll and Mrs. Hyde.
"Mother wandered out of the
wandered out of the house in the afternoon house to find her real home"
to try to find what in her delusion shethought was her real home. One time, Dadfound her on the corner of the street. Another time, she went to the home of a neighbor,who took her in and fed her. Both times, it was only after extensive persuasion that Dadcould coax Mother to return home.
When Mother's pleading was strong or Dad was desperate for help, one of us would drive over to calm the situation. Often, it was enough for someone else to be there e-mail: comments "at" LewyBodyJournal.org until Mother became too tired to stay up. If that didn't work, the most effective treatmentwould be to take Mother out for a drive in the car. After spending 10 or 15 minutes in thecar, she was so happy to be home that she would give Dad a big hug and ask if he'dmissed her. In her mind she'd been away at an identical house somewhere far away.
The medication (Zyprexa) prescribed for the hallucinations did calm Mother down, but mainly because it tended to knock her out. After taking the medication, shebecame very sleepy, which didn't seem to be much of a solution either. It was mainlybecause of the delusions and the difficulty we had in dealing with them that we knewMother and Dad needed a full-time, live-in aide.
e-mail: comments "at" LewyBodyJournal.org 8. Living Arrangements and Daycare
When Mother had started doing less around the house (even before a neurologist had noted any problems), Dad took up the slack. He said he was up to the task, althoughit was not easy for him. He was then in his early eighties and he had health issues of hisown. Nevertheless, it worked out all right for a while. To ease the cooking issue, theyregularly drove to the senior center for lunch. Soon, however, it became clear thatassistance would be helpful.
"Muscle stiffness affected the
flexibility of her arms and
legs"
walking had become impaired. Soon,muscle stiffness affected the flexibility ofher arms too. Although she knew how to dress and undress herself, it became hard for herto do it herself simply because the range of movement of her arms and legs becamerestricted. For the same reason, bathing became difficult. Our parents already had ashower bench, but now our sister came over to help Mother bathe. Another problem wasthat Mother had started using the bathroom very frequently. She felt the urge to urinatefrom one to three times an hour. She was taking Detrol to try to control this, but it didn'thelp. We suspected that she might have been afraid she would wet herself and wasvisiting the bathroom frequently as a precaution. In any case, she could go to thebathroom by herself, but it meant going up and down a half flight of stairs and her stairwalking was shaky.
At first, we got an aide who came over three times a week, for a few hours each time. She assisted Mother, did housework, and prepared a meal. We had found herthrough an agency used by an acquaintance whose mother had had Alzheimer's disease. Itquickly became clear that this wasn't enough assistance.
In looking for more assistance, Dad called a friend of Mother's who worked in social services. She recommended that Mother might benefit from going to seniordaycare. This seemed reasonable. By this time, Mother had lost interest in many of herusual activities, so it would keep her occupied and it would give Dad a break fromMother, since the two of them were now together constantly. We visited a daycare center,and Mother agreed to give it a try. A week later, Mother went for her first day in daycare,she was introduced into the group, and we went to another room to give her a chance tobecome acclimated. After a few minutes, she wanted to go home. They tried to distracther, but to no avail. She insisted that she didn't fit in because, she said, all the otherpeople there were so old. The director of the center thought that Mother was still thinkingof herself as she was before she became ill. Altogether, Mother spent no more than halfan hour in daycare.
e-mail: comments "at" LewyBodyJournal.org "If they moved into assisted
living, when Mother's
condition deteriorated, they'd
split-level, which meant that the bedroom have no choice but a nursing
home"
kitchen and living room on another level,and the outside was on still another level,and Mother was having trouble with stairs. One idea we investigated was assisted living.
We visited three assisted living complexes. All seemed very nice, had a good range ofactivities and facilities, and the food looked good. All were quite costly, however, and notall were set up to provide sufficient assistance. One assisted living complex told us rightaway that it wasn't an appropriate place for Mother, and this was when her conditionwasn't too bad. Another had different levels of assistance, each with its own coststructure, plus you could hire your own aide for more help. While the cost wasdiscouraging, one other factor worked strongly against these places: Mother's conditionwas progressive, and there would come a point when no assisted living residence couldprovide adequate care for her. One facility had an adjoining nursing home if things cameto that, while a second had an Alzheimer's ward. (An Alzheimer's ward would notnecessarily be appropriate for people with Lewy body disease, who lack the mobility thatpeople with Alzheimer's generally retain.) Dad strongly felt that Mother should not gointo a nursing home, because he didn't think she would receive the proper care andattention there, but if they sold their house to move into assisted living, when Mother'scondition deteriorated, what choice would they have? Apart from assisted living, another idea Dad entertained was moving into an apartment. Again, cost was a factor because they could live at less expense if theyremained in their own home, which was fully paid for. An additional consideration wasthe limited space that would be available in an apartment. Still another concern we hadwas that Mother's confusion might worsen if she changed environment.
As it turned out, staying in the house had its benefits because it provided space for a live-in aide and for everyone to be able to have some breathing room.
e-mail: comments "at" LewyBodyJournal.org 9. We Need Aides
Living at home brought the issue back to finding an aide who could work more hours than the one we then had. The daycare center had given us a list of aides andagencies they were familiar with. One aide, who was highly recommended, already caredfor a man with Alzheimer's disease, but only in the afternoon. She could work morningsfor us, and she had a friend who could take the afternoon shift. They were very nice anddid a great job of cleaning the house. They did a little cooking too and helped Mother goto the bathroom. This was important because she was shaky on the stairs and she startedto become confused in the bathroom. First, she sometimes forgot exactly how to use thetoilet paper and where to dispose of it. Then, she sometimes wasn't sure where to sit inthe bathroom. It soon became clear that Mother needed help getting ready for bed, whichwas after the aides stopped working, and then there were the hard-to-deal-with delusions,frequent in the evenings and not stopping for the weekends when the aides didn't work.
Starting with the daycare's list, as well as other agencies we knew of, our sister made many calls to find full-time aides. Some people on the list were just individualswithout any special training, while others had experience working in nursing homes. One,who was expensive, was a nurse who moonlighted as an aide. There were also severalagencies. Some seemed to specialize in getting aides from certain countries, like the"Polish girls" and the "Slovakian girls." Some agencies required families to pay forspecial visits from supervisors. We also found that there are companies specializing ineldercare case management. While pricey, some of these may take care of most aspects offinding and managing aides.
"The job soon took its toll on
our first aide, and she
that if we had a full-time aide during the suddenly had a family crisis"
week, our sister and Dad could care forMother on the weekends. But as Motherrequired more assistance, we hired another aide to work on the weekends. Our sister wasin charge of finding, interviewing, and hiring the aides. The first full-time aide was shyand not as experienced as the aides we would later hire as Mother's condition worsened.
When we hired this aide, none of us fully realized how much work her job would entail.
Soon the job took its toll on her. Mother was waking up constantly at night to use thebathroom, and the aide wasn't getting any sleep. Mother's ability to walk up and downstairs was increasingly difficult, and because of the arrangement of the house, she had tonavigate the stairs many times throughout the day. Then, of course, there were thedelusions. After several months, the aide unexpectedly announced that she had a familycrisis and had to go to Jamaica immediately.
Mother's circumstance being what it was, we had to replace the aide as soon as possible. Thus began a procession of aides — weekday aides, weekend aides, andvacation fill-in aides. Some aides stayed for several months, while others lasted for only afew weeks. Typically, they left due to a situation in their own family or to take anotherjob. Our sister began to keep a list of standby aides we could call if an aide announced an e-mail: comments "at" LewyBodyJournal.org unexpected vacation or quit. Instead of using an agency, we had the most luck findingaides by word of mouth. Many friends or acquaintances have had an elderly relative whowas cared for by an aide, and either that aide was now available or knew of another aidewho was. Still, we always have to scramble when we need to find a new aide.
We are fortunate that our current primary aide has been with us for over two years. She has had a lot of experience caring for elderly patients. Our weekend aide is notas experienced, although she cared for an elderly woman before coming to us.
"Live-in aides provide
They generally provide excellent care for excellent care but are a
mixed blessing"
impossible for her to live at home. Thetradeoff is that there is a loss of privacyfor Dad and they have their own way of doing certain things. For example, they insist onwashing the dishes by hand, rather than using the dishwasher. Furthermore, there havebeen personality differences that we've had to overcome. Although most of the aides havebeen agreeable, one of our best aides has a strong personality and doesn't like to be toldhow to do things. On the one hand, this leads to her managing Mother's care and thehousehold quite well (she's industrious and doesn't have to be told to do things). On theother hand, if Dad or another family member doesn't like something, well, voices can beraised on both sides. Of course, we are reluctant to offend an aide for fear that she mightquit and leave us stranded at the last minute. When an aide bumps Mother's wheelchairinto a table, it's often best to bite your tongue.
e-mail: comments "at" LewyBodyJournal.org 10. Things Get a Bit Worse
Mother was still walking with assistance. She was friendly and liked to call friends and relatives on the phone (although eventually she needed someone to dial thenumbers for her). At this point, she didn't do a lot around the house. She stopped readingand wasn't interested in the books on tape that a friend gave her. (She also had greatdifficulty remembering how to use the stereo's tape player.) She watched television withDad, who likes news programs, and Mother seemed to retain a lot of the news. We weresometimes impressed by her knowledge of current events, while her memory of otherthings wasn't so good. Some things from the distant past were remembered, othersweren't; some recent things were remembered, others weren't.
"L-dopa helped with Mother's
extreme muscle tension for a
problems were really the next big concern.
while"
Mother's walking was a problem, and herarms had a lot of muscle tension. If youheld her hand, she would crush your fingers. We sought assistance by returning to thelocal neurologist, the one who had been reticent to talk about dementia. We informed himthat Mother had had a full work-up at Columbia Presbyterian, and they concluded thatshe had Lewy body disease. He was very interested in hearing about the tests that hadbeen done and produced his notes, which showed that Lewy body disease had been hisdiagnosis too. He had a couple of ideas for dealing with Mother's mental and physicalproblems. He noted that Mother was taking 5 mg of Aricept a day, so he suggestedincreasing the dose to 10 mg. We followed that suggestion briefly, because right awayMother became very agitated, just as she had when she first started taking Aricept, andwe weren't going to go through that again. On our own, we went back to the originaldosage and her agitation subsided. This is another reason why we think the Aricept wasnot a good drug for Mother.
To help Mother with the muscle tension, the neurologist prescribed L-dopa (levodopa/carbidopa or Sinemet), which is commonly given for Parkinson's disease (andwas the "miracle" drug in the movie Awakenings, based on the book by Oliver Sacks).
One big concern was that L-dopa could make Mother's hallucinations worse, whichmeant there was a tradeoff between improving her physical symptoms and worsening herhallucinations. A small dose of L-dopa did seem to improve Mother's flexibility for awhile. As things got worse again, the doctor bumped up the dosage, which againimproved things for a while.
Another thing the doctor did was to prescribe a round of physical therapy. The physical therapist was based in a local hospital but made house calls. Medicare covered alimited number of visits. The therapist told us that she had two other patients with Lewybody disease, but it was a relatively new disease for her too.
e-mail: comments "at" LewyBodyJournal.org "The physical therapist
ordered a walker, a
wheelchair, a hospital bed,
and a commode"
she knew that the house had to be set upfor improved safety and to prepare forfuture deterioration of Mother's condition. Until that point, Mother was still sleeping inher bedroom upstairs, the same level the bathroom was on, but she needed to godownstairs to eat and sit in the living room. The aide assisted her on the stairs, in usingthe bathroom, in getting dressed, and with her daily hygiene. Mother could no longer risefrom a chair by herself, so the aide would pull her up by her arms and assist her inwalking from room to room. The physical therapist didn't approve of Mother's using thestairs, and she knew what equipment we could get through Medicare. Immediately, sheordered a walker, a wheelchair with a gel seat pad, a hospital bed, and a commode. Whenthese arrived, the dining room was converted into Mother's bedroom. The commode wentbehind a screen in the corner. Now, the aide brought basins of water for Mother to washwith. Getting this equipment was the greatest service provided by the physical therapist.
(Only the walker turned out to be inessential, since Mother couldn't use it — she was toounstable. The commode was useful for about a year, until the incontinence increased.)Any physical improvement from the therapy was short-lived, however. In fact, about sixmonths later, the neurologist again prescribed physical therapy, but the therapist said thatshe could no longer help Mother.
Later on, the neurologist also thought it might be helpful for Mother to visit a rehabilitation doctor. That doctor thought Mother might benefit from being in a rehabfacility for a while. Although Mother was amenable to the idea, it seemed totallyunrealistic to the rest of us, since Mother's condition was progressive and it wasn't clearthat the rehab center was prepared to give Mother the level of care she now needed.
Instead, we opted for more physical therapy at home, but as noted, the therapist thought itwouldn't help.
Shortly before going to the rehab doctor, Mother developed a visual problem. She had trouble seeing things in the left side of her field of vision. For example, if a glass ofwater was to the left of her plate, she wouldn't notice it. In the living room, Dad usuallysat in a chair to the left of Mother's wheelchair, so she sometimes didn't know he wasthere. The rehab doctor confirmed the presence of the visual problem, but there wasnothing she could do about it.
e-mail: comments "at" LewyBodyJournal.org 11. The Wheelchair Ramp
With the new equipment at home, we were better prepared for Mother's physical needs. Taking her out of the house was a problem, though. The procedure was to wheelMother close to the front door, hoist her from the wheelchair, and assist her in walking toand getting into the car. Then we'd fold up the wheelchair, carry it to the car, and put it inthe trunk. Unfortunately, the wheelchair covered by Medicare wasn't the latest or lightestmodel. We later got a spare, more lightweight wheelchair through the local ambulancecorps (which lends out wheelchairs, walkers, and canes donated to it) and that simplifiedmatters.
"Dad decided to have a
wheelchair ramp built by a
local carpenter"
coming and Dad wanted Mother to be ableto spend time outdoors so she could enjoythe warmer weather. One thing we hadn't counted on was how long the ramp had to be. Inorder to ascend the five feet or so from ground level to the front door at a reasonableangle, we ended up with a large structure that covered a lot of the front lawn.
Nevertheless, it was worth it. Mother could go out and enjoy the weather and it waseasier to take her to the doctor. It became even easier when we started using the town'swheelchair van to take Mother to the doctor.
e-mail: comments "at" LewyBodyJournal.org 12. "I Want to Die"
Mother had periods of confusion and periods of relative lucidity. Once or twice, during a lucid period, she would tell one of us that she wanted to die. Having your mothersay this to you is hard. She said this to each of us on at least one occasion. Here isroughly how such a conversation went: Mother: "I don't want to be a burden on anyone." Us: "Don't worry about that. We'll take care of you." Us: "It can be hard to kill yourself." Mother: "That's why you have to help me." "Mother: 'I don't want to be a
burden on anyone'"
herself, simply because of her physicalincapacity. Also, her lucid moments werefleeting, and this sentiment probably wouldn't have occurred to her during a nonlucidmoment. During her lucid moments, when she could have been aware of her conditionand where she was headed, her sentiment is understandable. But life is precious, and atthat point she was still able to have some enjoyment of life from time to time. Later, itbecame less clear whether Mother had moments of enjoyment. Of course, none of uscould help our Mother die at any time.
e-mail: comments "at" LewyBodyJournal.org 13. Hygiene and Dental Care
Due to her limited range of movement and declining cognitive capacity, Mother wasn't able to wash herself. The aides washed her as she sat up in bed or, later on, as shelay in bed. We regularly bought supplies of liquid body wash, baby wipes, and disposablegloves.
Mother was never the type who liked to have people fuss over her, and that attitude continued after she became ill. Fussing over Mother's appearance, sometimes anaide would suddenly brush her hair or wipe her mouth, and Mother would complain. Shealso took to "protesting" nonverbally. For a few months, when an aide tended to her inthe wheelchair, she would try to punch the aide. Due to her limited arm movements, thisnever became a serious problem, but we know the aides found it annoying. At othertimes, when the aide was holding Mother upright with one arm while tending to her withthe other, Mother would try to bite the aide's shoulder. Perhaps, Mother's biggest protestwas over the wheelchair's seat belt. The aides and Dad liked to have the belt buckled tomake sure Mother didn't fall out of the chair. But, for some reason, Mother resisted bycomplaining about the seat belt or, on occasion, unbuckling it herself. After a fewmonths, this behavior subsided.
"The aides had to brush
care of her teeth, but now the aides had to Mother's teeth and her dental
hygiene suffered"
person's teeth isn't easy. The aides clearlydiffered in how well they did it and howwell they even tried. Some would make a good effort, while one in particular thought itwas adequate to make two or three quick swipes with the toothbrush. Needless to say,Mother's teeth suffered. She had to have several large cavities filled and two teethextracted.
To alleviate the situation, we got an electric toothbrush. A dental hygienist taught our primary aide how to do a better job, and Mother goes to the hygienist for aprofessional cleaning periodically.
The state of Mother's teeth is far from her worst problem. But after a lifetime of caring well for her teeth, it was indicative of how things had changed for her. She wascompletely dependent on the care of others.
e-mail: comments "at" LewyBodyJournal.org 14. Slow Decline Continues
Gradually over the past couple of years (from 2001 to 2003), Mother's condition has declined both mentally and physically. Soon after she began taking all the newmedications, she would get sleepy early in the evening. Now, she goes to bed at about 7p.m. and wakes up at about 9 a.m. The aide puts her to bed in the afternoon for about anhour too, but that's partly to take some of the weight off her rear so she doesn't get abedsore. During the day, she is often inalert and sleeping, sometimes with her eyes partlyopen.
"Mother's ability to interact
with people has declined"
always friendly, but at first someinappropriateness would slip into herspeech, as when she referred to Dad as her father. Things always got worse in the lateafternoon and evening. For a while, at that time of day, she would recite a bunch ofnumbers; possibly she was counting something she alone saw. Even after going to bed,she would wake up and recite numbers. Later on, she tended to stop talkingspontaneously. If you asked her a question, she'd usually answer, though, and sometimesshe'd add a remark to a conversation going on around her. Her answers and remarksbecame less and less meaningful over time. Now, she'll answer a question from time totime, but she's largely silent.
As Mother's condition declined, the delusions subsided, with only an occasional reappearance. Once in a while, when we were saying goodbye, she'd ask where we weregoing. When we said, "Home," she'd say, "Take me home too." When we told her shewas home, she would immediately acquiesce. After a while, no signs of the delusionsremained.
Physically, Mother became unable to walk even with assistance, but she was still able to support her weight on her legs for a while. The aide could pull her up and, whileMother stood with the aide's support, help her dress. After a while, Mother's legs wouldjust crumple under her. To get Mother from bed to wheelchair, we ended up getting a lift,paid for by Medicare.
A problem with sitting all day is that Mother has become susceptible to bedsores and blood clots. One day, her leg swelled up and she was diagnosed with deep veinthrombosis, a blood clot in the leg. (This also can happen to airline passengers and hasbeen called "economy class syndrome" in the press.) Mother had to spend almost a weekin the hospital while getting Heparin, a blood thinner, intravenously. When she got home,she had to take the Coumadin blood thinner orally for a while. Keeping her legs elevatedseems to help.
e-mail: comments "at" LewyBodyJournal.org "Mother now has so much
muscle tension that her arms
crossed in front of her and very restricted are always crossed in front of
in their range of movement. Her hands are her"
always balled tightly into fists.
Sometimes, she would get a rash on herpalm or her fingers would bruise her palm. Putting a sock or washcloth in each handhelped with that. Still, Mother continued to damage herself. Recently, a wound doctortook a look and found that the tendon going to her thumb was exposed because Mother'sfingers were digging into that area. The doctor had Mother visit the rehab department of alocal hospital, where they built special hand splints for her. The splints keep her handsopen a bit and should prevent that kind of damage in the future.
Mother has lost control of her bladder, which means a lot of adult diapers, bed pads, and laundry washing. Possibly due to her sedentary life, constipation is a problem.
At first, prune juice, Metamucil, and senna helped. Now, periodic enemas are a necessity.
Because of her physical problems, Mother lost her ability to use silverware or pick up a glass, so she has to be fed. For a while, she could pick up some kinds of foodwith her hand, but now even lifting her hand to her mouth would be difficult. A morerecent problem is that Mother is having some trouble eating. The aide gives her soft foodor uses a food processor to break her food into small pieces. The aide sometimes has totell her to open her mouth, chew, and swallow. Her swallowing isn't good.
e-mail: comments "at" LewyBodyJournal.org 15. Living Will
Before she became ill, Mother had signed a living will and executed a power of attorney. The power of attorney allows us to manage her financial affairs without gettingthe authorization of a court. The living will is a more sensitive matter. It states thatMother doesn't want to receive extraordinary care that would extend her life. This isgoing to pose issues for us down the road as Mother's health worsens and we have tomake decisions about her treatment. Of course, any decisions of this kind are to be madein consultation with Mother's doctor. But it raises the issue for us of what constitutesextraordinary care for a person suffering from Lewy body disease where the inevitableresult is a vegetative state and a slow death.
"The living will states that
Mother doesn't want to
receive extraordinary care
that would extend her life"
consider whether we would want tosubject Mother to chemotherapy andradiation and whatever other treatments there are for cancer. The treatments would causeMother pain and suffering. And, considering her quality of life, for what result? When weexpressed these concerns to the doctor, she was sympathetic. If it was cancer, Motherwould take an oral medication and no more. Fortunately, the lump wasn't cancerous, butit did give us pause, and we re-read Mother's living will with a fine-tooth comb.
A second concern raised similar issues. Mother is having trouble swallowing. On the two occasions that Dad has mentioned this to her doctor, he said that in the futureMother might have to have a feeding tube inserted. But the living will gives the feedingtube as an example of the kind of extraordinary care that is not authorized. As a result, wemade sure that Mother's doctor had a copy of the living will and understood that Son, notDad, was Mother's authorized healthcare representative. This was significant because itseemed that Dad's first priority was to make sure Mother always has the best treatmentand we were concerned he might take actions that would prolong Mother's life at anyexpense. As it turned out, when we discussed the matter with him, we found that hisattitude had changed and he agreed that life-prolonging treatment wouldn't make sense.
We think this is because, when Mother was first diagnosed and for several yearsafterwards, Dad clung to the hope that there would be a cure or at least some drug thatwould stop the disease from worsening. As Mother's quality of life deteriorated, Dadseemed to recognize that Mother will eventually succumb to this disease. In fact, herecounted the futility of measures taken by his mother to prolong his father's life.
e-mail: comments "at" LewyBodyJournal.org 16. Coping
Dad deserves a lot of credit, because he's the one who has observed firsthand Mother's decline and has put up with the aides. His world has been turned upside down,but he has seen to it that Mother is cared for well. If anyone has done his best to upholdthe traditional marriage vow of "in sickness and in health," it's him. When someone whodidn't know Mother before the onset of the disease comes to the house, Dad feelscompelled to describe to them what Mother was like when she was healthy so that theycan possibly glimpse the woman he knew — the smart, vibrant, active woman she used tobe.
"Dad would say with
disappointment, 'Your
mother isn't getting better'"
better; with others you can't be cured butyour symptoms can be treated. Lewy bodydisease is completely different. Mother started taking Aricept and all the othermedications, but with little effect. Dad would say with disappointment, "Your motherisn't getting better." When we got up the courage, we'd tell him that she won't be. Heknew that, of course, but he didn't want to believe it or give up hope for improvement.
For Dad, Mother's decreasing responsiveness seemed to be a particularly salient indication of her decline. Every morning, he would say "Good morning" to her, and shewould reply, "Good morning." Sometimes, he would ask, "How are you feeling?" Shewould usually say, "Fine," which consoled him, since she wasn't in pain despite herproblems. As the weeks passed, however, on some days Mother didn't respond. Thatbothered Dad. Still later, she stopped responding altogether. That was a hard blow forhim.
Early on, we investigated support groups. There are none for Lewy body disease, but there are many nearby support groups for Alzheimer's. We encouraged Dad to attend,because we thought it might help him if he could speak to others about what he wasgoing through. However, he was disinclined to attend. He subscribes to an Internet e-maillist for caregivers. In general, though, he doesn't have the patience to read all thecomments and finds that many of the people cared for are mildly afflicted or are in anursing home. He reads some of the comments, but they don't give him solace.
Dad is bitter that most of Mother's friends "Mother's friends abandoned
and acquaintances have stopped visiting.
her when she still would
have enjoyed their company"
illness, a number of her friends madeefforts to visit. After Mother's situationdeteriorated significantly, these friends stopped visiting. It was understandably difficultfor them because Mother didn't interact much with others, and later on, it became unclearwhether she knew they were there. But we think that friends abandoned her too soon, at a e-mail: comments "at" LewyBodyJournal.org time when she still would have enjoyed their company and welcomed the diversion. Ofcourse, Dad would still enjoy their company.
As for Dad, for us children this is a sad situation. Each of us visits regularly, but we have our own lives, so we're not constantly faced with Mother's illness and can put itout of our minds for a while. It's certainly hard to share our experience with friends.
Talking about it can be hard. Friends who haven't had a parent with dementia cannotcomprehend what we are going through. Everyone is quick to say the correctcatchphrases ("I'm so sorry"), and some friends ask occasionally how things are going,but it's apparent that many others would rather not know.
e-mail: comments "at" LewyBodyJournal.org 17. Future Concerns
Mother's doctor continues to report that her heart and lungs are healthy. Until the onset of Lewy body disease, Mother had few health problems. It's now 2003, four yearssince Mother was diagnosed with Lewy body disease and over two years since she wasable to walk. She is inattentive but occasionally responds when given a rousing "Hello,Mother." Sometimes, she replies with a plain "Hello," other times with a "Hello, Father"(regardless of who she's responding to). Recently, she responded with "Hello, Donald."(We don't have any relatives with that name.) On occasion, a stereotyped question suchas, "I'm back, Mother; did you miss me?" will elicit a response of "Yes, of course." Toother questions, she might nod her head or say a word or two. She is often inalert, sofrequently no reply is made.
"Mother is dependent on
all aspects of her care. The major concern others for all aspects of her
care"
food. She is still able to be fed by hand,but her food often has to be chopped intosmall pieces. Her eating has to be rated as her biggest problem.
Aside from our concerns about Mother, we have concerns about our own future.
Will we contract this disease when we get older? Did we inherit a gene for it? No oneknows what causes Lewy body disease, but it's hard to avoid having a fatalistic view.
"Any thoughts Mother may
harbored thoughts like these herself. In old have had about her own
future health clearly did not
prevent her from leading a
didn't diagnose the kind of dementia like productive life"
they do today, but Mother saw her motherdecline. In the back of her mind, could shehave had questions about her own future? If she did, she clearly didn't let them preventher from leading a productive life. In that way, she provides a good example for us tofollow.
All we can do is follow news reports about progress being made in understanding and treating Alzheimer's disease. We continue to hope that more attention will be givento Lewy body disease.
e-mail: comments "at" LewyBodyJournal.org 18. The Wound Doctor (April 2003)
Over the past few months, Mother developed some additional physical problems, but there was also a glimmer of good news.
On most days Mother spent many hours sitting in a wheelchair. Since she went to bed early and got up late, about half her day was spent in bed. Also, during the day shewould be put to bed for a couple of hours, mainly to relieve the pressure on her back sideand prevent bedsores. It turned out that this wasn't good enough. From sitting in thewheelchair so much, Mother started to develop many sores on her back and behind. Now,she spends most of the day in bed, and the aide shifts her position now and then. Becauseshe is spending so much time in bed, she now seems more isolated.
"From sitting in the
developed a red rash on the upper half of wheelchair so much, Mother
started to develop many
sores"
started coming over every week or two,originally to examine Mother's handwound. He seems to think the rash might be an allergic reaction. But Mother never hadallergies and the rash affects only her upper body. In any case Mother now takes anallergy medicine, which seems to be having some effect.
This particular doctor started making house calls to examine wounds that had developed on Mother's hands. Mother had so much muscle tension that her hands werealways clenched into fists and her fingertips were digging into her flesh. Her left handwas a particular problem, since her thumb was usually trapped inside the fist. Until thedoctor came over, the aide tried to put a rolled-up washcloth inside each fist. The doctor,who specializes in wounds and bedsores and often sees patients in nursing homes, foundthat Mother's fingers had damaged the tendon of her left thumb. He sent her to a localhospital, where they built splints to hold her fingers apart somewhat. Use of Duoderm, afabric impregnated with medicine, helped the wound heal. Although the splints seemed towork, the damage to the tendon was done and Mother's left thumb is permanentlydamaged. Additionally, the splints irritated the rash Mother had developed, so the aidecan't use them for now. That means it's back to using the less effective rolled-upwashcloths. The only thing that has prevented this from being a bigger problem is thatMother's muscle tension has decreased somewhat due to a new drug treatment.
The wound doctor consulted with a neurologist about how to deal with Mother's extreme muscle tension. The neurologist recommended a drug called Requip. This drug issometimes used by people with Parkinson's disease. Apparently, it can enhance the effectof L-dopa, which Mother was already taking for muscle tension. A major side effect ofRequip is somnolence. In fact, Mother had tried Requip over a year ago, but she wasalways so sleepy that we had it stopped. This time around, the Requip has had a morepositive effect.
e-mail: comments "at" LewyBodyJournal.org "A small dose of Requip
made Mother more vocal and
reported that her flexibility increased. To alert"
us, a second effect was more striking:Mother became more vocal and seemedmore alert. Before the Requip, Mother was almost always silent, but now she startedtalking again. She responded to questions and spoke up during the conversations sheheard going on around her or to words she heard on television. Admittedly, a lot of whatshe said wasn't coherent. Still, it seemed to be a positive development. Over the next fewweeks, the doctor increased the dosage. Unfortunately, that had the effect of inhibitingMother's speech.
We liked it when Mother was more alert and more vocal on the lower dose of Requip. The aides, on the other hand, like the higher dose, because Mother seems to bemore flexible. Our first reaction was to go back to the lower dose, especially since ourgoal isn't to make life easier for the aides. Rather, we want what is best for Mother, whichis an almost impossible judgment at this point. Does greater alertness increase the qualityof Mother's life, or does it just make the family feel a little better? It turned out that theproper course to take became clear. The aides told us that Mother is better able to eat andswallow with the higher dose. The higher dose it was.
The weather is warming up and Mother has been able to spend some time e-mail: comments "at" LewyBodyJournal.org 19. Various Problems (August 2003)
The effect of the Requip was short-lived. In our April 2003 update, we reported that a medication called Requip made Mother more alert and vocal. Unfortunately, theeffect was only temporary. After a few weeks, Mother became largely silent andunresponsive again.
The reversal of the Requip wasn't our only setback.
"The reversal of the Requip
wasn't our only setback"
professional cleaning. With the aide usingan electric toothbrush, she hadn't had amajor dental problem in about a year. In her last visit, however, the dentist foundproblems with three of her teeth. He said that two teeth had such big cavities that theyshould have root canal procedures and a third tooth had sheared off completely. Wedecided that we didn't want to subject Mother to invasive, prolonged procedures to fixthese problems. She doesn't seem to have any discomfort, although it can be hard to tell.
Bedsores have continued to be a problem. Because of the bedsores, Mother is mainly confined to bed, with the aide shifting her position throughout the day. Thebeginning of summer was particularly cool and rainy this year, but even when theweather has been decent, Mother hasn't been outside for long because sitting in thewheelchair inflames the sores. One thing that has perhaps improved the situation has beenthe air mattress. Paid for by Medicare, we now have an air mattress that replacedMother's traditional bed mattress. The air mattress has an electric pump, which keeps itinflated to the right pressure.
In addition to the bedsores, Mother continues to have a problem with constipation, and for a while her general appearance was not good. (Also, she seems to chew her lowerlip sometimes.) Dad decided that it would be good to have a doctor make an occasionalhouse call. Until this time, he had periodically taken Mother via wheelchair van to theirregular doctor. Their regular doctor didn't make house calls, but by calling a referralservice at a local hospital, he found one that did. The new doctor came over and, althoughshe hadn't heard of Lewy body disease, Dad was pleased with the exam she gave. A weeklater, she called Dad with a new recommendation she had. She told him that Mothermight benefit from a feeding tube, since that could help hydrate her body.
"The doctor understood that
the goal wasn't life
issue of the feeding tube (15. Living Will) extension"
when it had been raised by Mother'sregular doctor. Now, this second doctorbrought the issue back to the fore. After much discussion, Son called the doctor andadvised her of Mother's living will, which explicitly cites the feeding tube as a procedureshe doesn't want. Mother had signed the living will many years before, when she was in e-mail: comments "at" LewyBodyJournal.org good health and showed no signs of dementia. Son also told the doctor that Mother hadexpressed a desire to die some two years earlier (12. "I Want to Die"), so her sentimentshadn't changed after she became ill. The doctor accepted all of this amicably. She saidthat she now understood that the goal wasn't life extension. Son said that we wantedMother to be comfortable. (See the Information section of LewyBodyJournal.org formore about feeding tubes.) Mother now lies in bed almost all the time. She is still able to eat as long as her food is chopped into small pieces. When we talk to her, she seldom responds. Sometimes,she'll nod her head slightly, often with her eyes closed. Once in a while, usually in theevening, she'll vocalize a little. When we gently stroke her arm, sometimes it seems todisturb her, as her breathing speeds up and becomes more forceful. Because of herunresponsiveness, it's sad to say that she has become more marginalized. We think thateveryone spends less time trying to interact with her. Dad has begun to think about wherehe might want to live after Mother is gone. A couple of Mother and Dad's friends havecalled, and Dad has described Mother as like "the living dead." That may sound harsh,but we can't say that it's not reality.
e-mail: comments "at" LewyBodyJournal.org 20. Stasis (May 2004)
From week to week, it's hard to notice changes in Mother's condition, and that's made it difficult for us to write a journal update. But now when we look back, theoperative word is stasis. In the April 2003 and August 2003 updates, things weren'tlooking good, mainly because Mother had eating problems and bedsores. Now, Mother iseating fairly well and her bedsores have healed.
"The operative word is stasis
. Mother is eating fairly well
smaller and smaller pieces. Now, they use and her bedsores have
a food processor to chop solid food up.
healed"
When they put food into Mother's mouth,she chews and swallows. Occasionally,she'll swallow wrong, but her eating doesn't seem like the serious problem it did before.
Careful attention to Mother's bedsores fixed that problem. Mother sleeps on an air mattress, and the aides shift her position periodically. One aide also gives her a gentlemassage once in a while to get the blood flowing. It seems like the only wound Mothergets is one on her ear from lying on her side, but even that is infrequent.
Mother had had a constipation problem, but that was resolved as well. One of the aides has a friend who works in a nursing home. The friend gives her portions of a pruneconcentrate to feed to Mother. A regular dose of that really does the job. Mother used toneed a couple of enemas a week. No longer. We believe the product is Fruit-Eze(www.fruit-eze.com). When it isn't available, the aide has stewed prunes in prune juice.
This is practically the same thing and seems to work as well.
Phlegm has become an occasional problem. It collects in Mother's throat and she seems to be too weak to cough it up. Mother regularly takes cough medicine to helpbreak it up. In addition, two or three times a week the aide uses a strange toothbrush toreach in and pull out gobs of phlegm. The toothbrush is a piece of foam on a thin plasticdowel. A neighbor who is a nurse gave us a few. Apparently, this kind of toothbrush isused in hospitals and nursing homes.
"Mother's extreme rigidity
continues"
into fists and her arms are crossed in frontof her. Touching her arm reveals howtense her muscles are. When touched, she usually flexes her arm even more. This winter,Dad had a doctor come over to give Mother a flu shot. He wanted to take her bloodpressure, but he was afraid he'd break her arm if he tried to straighten it. Her legs don'tseem as tense, but they can't be straightened fully either. Now that the weather is warmer,the aides are trying to get Mother outside for some fresh air. The problem is that she canno longer bend enough to sit properly in the wheelchair. The aides have to be very carefulto make sure she doesn't slide off the chair.
e-mail: comments "at" LewyBodyJournal.org We had written before about the splints that were constructed to keep Mother's hands open to prevent her fingernails from digging into her palms. The splints were useduntil Mother's palms healed. Now, because of the extreme muscle tension, it's notpossible for the aides to put the splints on Mother. Instead, they put rolls of gauze in herhands and that has sufficed. Mother's fists are so tightly closed that fresh air can't reachher palms, and her hands can get smelly. The aides solved this problem by cleaning herpalms with vinegar, which we're told is an old folk remedy.
A strange thing has happened for a year or two that we haven't written about.
Mother sometimes perspires profusely for no apparent reason. A few years ago, we hadnoticed that her face would sometimes become flushed and she would breathe heavily fora few minutes, then she would be back to normal. About a year or two ago, she started toperspire heavily every afternoon for an hour or two, regardless of the season or indoortemperature. This continues today. To try to keep Mother comfortable, we have a smallfan aimed in her direction, which the aides turn on when the perspiring begins.
Mother's mental condition remains poor. She spends all day in bed and is very inattentive. She still sleeps most of the day and usually has her eyes closed. We've foundthat having her eyes open or closed is not necessarily a good indication of whether she'sasleep. When her eyes are open, you might touch her or speak to her and she'll bestartled, possibly because she'd really been asleep. When her eyes are closed and you saysomething, she might nod her head slightly.
"There's little evidence that
Mother can understand what
we say"
question, she'll nod her head; more rarely,she'll say, "Yes." We don't think thatmeans she understands us. Rather, she might be responding to our voice intonation. Whenpeople are talking nearby, Mother sometimes makes a word-like utterance or two. Herreaction to touch varies a lot, from no response to startle. At times, she winces, especiallywhen touched around the head or face. When touched on the arm, as noted, the armusually flexes, but there's usually no response from touching her leg. Otherwise, sheseems largely unaware of what's going on around her.
We continue to rent all of our medical equipment, despite the fact that we have rented long enough to take possession of all the items. This way, when anything needs tobe repaired, the equipment company is responsible. Medicare may be changing itsreimbursement policy for the wheelchair, since we've had it so long, so we might takeownership of that. Mother rarely uses it, so repairs won't be a big factor. A couple ofitems that did need repairs lately were the hospital bed and the air mattress. With the airmattress, the problem was that a section of it wasn't retaining the air. The equipmentcompany sent someone over to examine it, and he determined that it should be replaced.
Someone else then came over with a new mattress, installed it, and left. The training forthese guys couldn't be very good, since the new mattress didn't hold the air. Calls to the e-mail: comments "at" LewyBodyJournal.org company simply provided the obvious advice to make sure the valve was closed. Finally,by unzipping the mattress cover, deep inside we found a second valve that had never beenclosed. What a mess that was for a couple of hours.
It's clear that the aides who care for Mother are very good. Both our regular aide and the weekend substitute have now been with us for more than three years. If not forthem, it's doubtful that Mother would have survived until now. Would Mother havewanted this? We don't know.
e-mail: comments "at" LewyBodyJournal.org 21. Little Change (May 2005)
Mother's condition remains poor. Her body is tense and inflexible, with her hands in fists and her elbows and knees always bent. She has her eyes closed much of the time,and when they are open, she stares blankly. When touched on the upper body, Motheroften flinches. (Our sister thinks this may be a reaction to being "handled" — washed,rolled over — by the aides. Or maybe it's just a surprise response.) Touching her legsdoesn't seem to elicit a response. She is largely silent, but on occasion she utters somesyllables and, rarely, a recognizable word. Our sister thinks she shows some response tothe sound of familiar voices, but we're not so sure. In any case, when the aides put food inher mouth, she chews and swallows.
"Mother's condition remains
require a lot of chewing, such as crushed poor . but when food is put
pineapple, lentil soup, and tuna. The aides in her mouth, she chews and
swallows"
the food into a consistency she can handle.
Mother didn't have a problem with liquidsuntil this year, when she would sometimes gag while drinking. To help with thatproblem, the aides thicken her liquids with Thick-It or Thicken-Up. These productsmainly consist of cornstarch, with another ingredient or two to prevent lumps. We've readthat plain cornstarch might work as well if you use a small wire whisk to combine thecornstarch and the liquid.
To prevent bedsores, Mother's bed has an air mattress, and the aides shift her position regularly. Since she is always in bed, she does get sores and the aides tend tothem regularly. So far, they have been successful in preventing them from becoming aproblem. The latest device they've been using is an inflatable rubber doughnut. Whilebeing fed, Mother has to spend a certain amount of time on her back, and her back wouldget red. The doughnut is placed under her and keeps pressure off the affected body parts.
Constipation continues to be a problem, but the aides haven't had to resort to enemas. The combination of senna, prunes, and prune juice seems to be working.
"Mother would choke on the
2004) that phlegm had become a problem.
phlegm, so the doctor wrote
an order for a suction
machine"
the phlegm up. They also pulled phlegmout using a special toothbrush (a piece offoam on the end of a thin plastic dowel). After a while, this wasn't sufficient, as Motherwould choke on the phlegm. It was really horrible to hear. To take care of the problem,the doctor wrote an order for a suction machine, which we rent from a medical supplycompany. Now, the aides suction Mother's mouth and throat as needed, which hasbecome a few times a day. Hearing Mother choke on the phlegm was unbearable, buthearing her being suctioned isn't pleasant either.
e-mail: comments "at" LewyBodyJournal.org Part of Mother's phlegm problem may have been due to a cold. Her gagging became so frequent that an aide called a doctor who makes house calls. According to theaide, the doctor wanted Mother to go to a hospital and be hooked up to some kind ofmachine for the delivery of medicine. This was the doctor's opinion without firstexamining Mother. When we heard about the plan, we thought it sounded like it wouldviolate Mother's living will. When the doctor came over to examine Mother, our sisterwas sure to be present. She made it clear to the doctor that the treatment should be forcomfort, not for life extension. The doctor thought part of Mother's phlegm problemcould have been due to a cold. She prescribed a decongestant that came in a liquid form.
She also prescribed albuterol, a medicine that is often used to treat the wheezing andbreathing problems in diseases such as asthma and bronchitis. In Mother's case, thealbuterol is given through a nebulizer. This is a small machine that vaporizes the drug anddelivers it through a facemask. Mother just breathes it in. The treatment has helped.
Mother's coughing and gagging have diminished, but she still has problems, which is whythe suction machine is used.
"All of this sounds bleak and
bleak and it is, but being in our parents' it is, but being in our parents'
house isn't as depressing as
think. That's partly because this has been you might think"
going on for so long that everyone hasbecome accustomed to things — to theextent that we can. The amount of time visitors spend with Mother varies a lot. Somepeople take only a quick look. When we visit, we talk to Mother for a while, but it can behard to spend a lot of time with her. No one wants to be present when an aide is caringfor her (feeding, cleaning, or changing her). Every morning, Dad says hello and touchesMother's face, and he looks so sad. Other than that, he keeps his distance.
We are now renting a lot of medical equipment, and we have had problems with the suppliers. The hospital bed and air mattress seem to break down fairly regularly. Themedical supply company often sends over someone who can't fix the problem, so nothinggets done until the second or third visit. The bed we have is electrically powered, but thecompany says that it made a mistake in giving us this bed. They say that Medicare is onlysupposed to cover manually adjustable beds. Whenever our sister calls about getting thebed repaired, the company always offers to take it away and replace it with a mechanicalbed, which we don't want. Dad also became quite annoyed about Mother's wheelchair. Hehad wanted to stop renting it and take possession of it, but he couldn't. The wheelchairprovided by the supply company was old and worn. Over the years, though, we had thecompany replace practically every part of it. Renting still made sense, since the companywould be responsible for repairs. Now that Mother is rarely in the chair and most of theparts haven been replaced, Dad thought we could save Medicare money by takingpossession of it. The medical supply company informed us that it was too late for that.
We could have taken possession a couple of years ago, but we didn't, so now thewheelchair can only be rented. Dad was quite annoyed, since the government hasprobably paid for that old wheelchair several times over.
e-mail: comments "at" LewyBodyJournal.org Dad has cut out ads from the newspaper about hospices, and he's had us call the insurance company to find out about hospice coverage. We don't know when we'll needit, but it can't hurt to be ready.
Over the past few months, the case of Terri Schiavo was a major news story.
Doctors said she was in a persistent vegetative state, so her husband wanted to removeher feeding tube and let her die, while her parents opposed that action. This storyresonated with our situation with Mother. She was diagnosed with Lewy body diseaseabout six years ago, and her situation has been bad for the past few years. From the newscoverage, we learned a few new things about persistent vegetative states and living wills.
We're glad that Mother had the foresight to make out a living will to guide us in makingdecisions on her behalf.
e-mail: comments "at" LewyBodyJournal.org 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 nolonger speaks at all. Until a few months ago, she would sometimes utter a recognizableword. 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"
front tooth was loose and becamepositioned in a way that interfered withthe aides' feeding her. The tooth beside it was loose as well. Our dentist didn't knowanyone who made house calls, so we called a local nursing home to find out who theyuse. Their dentist was pretty expensive, but before we called him, Dad saw an ad in thenewspaper for another dentist and arranged for him to come over. Mother's aide told uslater 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 localanesthetic and ended up removing three loose teeth. He looked around and said therewasn't any sign of infection. That surprised us, because the last time Mother had been to adentist a few years ago, we were told that she had some big cavities and a tooth hadsheared 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 dentistfrom the nursing home. The funny part was that, after totaling the exorbitant charges, hededucted 10% as a senior citizen discount. Thank you very much. At least, he seemed todo 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. Anotheryear of this. We also had some questions: Are the aides caring for Mother properly? DoesMother really need all the medications she is taking? Hospice care is appropriate onlywhen a person is within six months of death, but how do we know when that pointarrives? We decided that we should find a good doctor.
"As the new year began, a
disease, she visited a doctor regularly.
few things were on our mind
Afterward, we continued to take her while . We decided we should find
she was able to sit in a wheelchair. Then a good doctor"
she became too stiff to sit in a chair andbedridden. Since her regular doctor didn'tmake house calls, she was seen by a different doctor but only a few times in the past fewyears. We found the doctor through the referral service of a local hospital. She had nospecial knowledge of dementia or end of life issues, but she made house calls. After herfirst visit with Mother, she recommended a feeding tube, which we disagreed with and isruled out by Mother's living will (19. Various Problems, August 2003). Last year, whenMother was gagging a lot, the doctor prescribed albuterol administered through a e-mail: comments "at" LewyBodyJournal.org nebulizer and a facemask (21. Little Change, May 2005). That seemed appropriate at thetime, when Mother may have had a cold. But we learned only near the end of 2005 thatthe doctor had prescribed the albuterol again after Mother's aide called her, and the aidewas using it every two or three hours. Was that appropriate now that she no longer had acold? 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 thatshe had the doctor prescribe the albuterol for such frequent use when we thought it was atemporary measure. We were also aware that the aide was suctioning Mother's mouth andthroat 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 shedoes react negatively to the suctioning. This concerned us too. (A Web site we looked atsuggested that suctioning might even cause the production of more phlegm.) "We got a doctor
recommendation from the
nurse at the hospice"
find out more. From the National Hospiceand Palliative Care Organization(www.nhpco.org), we learned that all of the local hospitals have hospice programs. Soncalled one and spoke to the intake nurse about hospice and about Mother. The nurse saidthat because Mother is still eating, she could live quite a bit longer. She also said that it'snot necessary to suction every time a person gurgles. Before the call was over, Son got adoctor 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 himtoo. We then told the aide that a new doctor would be visiting. Right away, she becameagitated and wanted to know why we didn't get the doctor who had been there before. Weexplained that the new doctor was recommended by the hospice and knows about end oflife issues. We didn't think Mother was ready for hospice, but we wanted to establish arelationship with a knowledgeable doctor. She calmed down, but prior to the doctor'svisit, Dad said she became agitated again. Our sister had to talk to her and reassure herthat she's doing a good job, which she is. She's not a nurse or a trained medicalprofessional, 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: Tomorrow, you will be examining my mother. Before your exam, I wanted to fillyou in on my mother's condition and what we would like to get from you.
e-mail: comments "at" LewyBodyJournal.org My mother was diagnosed with Lewy body disease about 7 years ago. Since then,her condition has declined significantly. Today, she is completely incapacitatedand completely unaware. She is cared for at home by a live-in aide. My motherhas a living will and I am her health care representative. We know that our motherwould not want to live this way. Therefore, the goal of any medical treatment is toprovide comfort, not to prolong life.
My mother's primary doctor had been Dr. W, but since he does not make housecalls, he has not seen her in a few years. Another doctor has visited, but heradvice was too aggressive for my mother's situation. For example, sherecommended 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 knowledgeableabout 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:
• Potassium chloride 10meq er, one per day • Hydrochlorothiazide 25mg, one per day 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 getonly the first number of her blood pressure: a healthy 115. The aide explained how shetreats Mother's sores with various creams and sometimes with Duoderm (a fabricimpregnated with medicine), and the doctor was impressed. Afterward, the doctor satdown with us to get Mother's history. We also learned more about the doctor, includingthe fact that she used to work in a veterans' nursing home. She doesn't have in-depth e-mail: comments "at" LewyBodyJournal.org knowledge of Lewy body disease, but at this point that doesn't seem necessary. Inresponse to the letter we had faxed her, she agreed that a feeding tube would not beappropriate. We also informed her that, in line with Mother's living will, we would nottreat infections like pneumonia. She said that was all right, that some families would treatinfections while others would not. She generally recommends aggressive treatment onlyfor 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 wellpast that. There didn't seem to be any reason to continue the potassium supplement or thehydrochlorothiazide. We also took her off Plavix, a mild blood thinner, but we had somequalms about that (what if she got a blood clot in her leg again? — see 14. Slow DeclineContinues). After our long discussion, we had the aide come back and the doctor spoke toher about suctioning. The doctor recommended not suctioning for every little thing. IfMother coughs, don't suction right away. Wait half an hour and then see if she still needsit. That turned out to be great advice, and the aide is now suctioning much lessfrequently.
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 beappropriate. She could also look at the effect of having removed the medications. There'salso the possibility that she would reduce other medications.
"We were pleased with the
doctor, but the aide was not"
couple of times that we were trying to killMother, which was untrue, of course. Hehad to tell her not to say that again. When our sister talked to the aide, one of the thingsthat bothered her was the elimination of the Aricept, but that is clearly unnecessary forMother's present condition. The aide also seemed concerned about not being able to usethe albuterol nebulizer so frequently. Mother does wheeze on occasion, but it doesn'tseem to bother her. In looking at the aide's reaction (before the doctor came andafterward), there might be more to it than just the medications. The aide really likesliving 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 assistedsuicide law and similar things. It's also true that she is very conscientious, and it could bethat she wants to do more, rather than less. We're really not certain why the aide washostile 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 itprescribed again, if the doctor approved. (During the doctor's visit, she had told us thatshe didn't think it was doing much.) The doctor's assistant said she would call thepharmacy to renew the prescription. Fortunately, our sister called the pharmacy, becausethe doctor's assistant had simply renewed the prescription as written by the previousdoctor — which called for using the nebulizer four times a day and giving five refills.
e-mail: comments "at" LewyBodyJournal.org Our sister told the pharmacist not to fill the prescription until we saw that it was reallynecessary. The next day, she went over and found that Mother wheezed a bit, butotherwise 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 tokill Mother. Dad got particularly upset when the aide waited until he was within earshotand told Mother, "They're trying to kill you" and "You'll be in a better place soon." Theirony was that the aide was saying this when Mother was under the regular care of adoctor for the first time in years. Before Mother's doctor returned, Son took Dad for avisit to his doctor, the same doctor who used to treat Mother. That doctor said that it wasgood that we found a doctor to come over regularly, and he agreed about droppingmedications. In fact, he said he probably would have dropped all the medications. Hethought 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: It's been three weeks since you examined our mother, so I would like to scheduleyour monthly appointment. For the reasons I go into below, I would like toschedule the appointment sooner rather than later.
Last week, I called your office because we were out of albuterol. Your assistantcalled the pharmacy and renewed the prescription. My sister, who you met, calledthe pharmacy to check on it and found that the pharmacist was duplicating theprescription that had been written previously by another doctor. That prescriptioncalled for administering the albuterol four times a day and gave five refills. Sincewe thought our aide was using the albuterol too frequently, it seemed that thatprescription would give her license to continue overusing it. When we visited ourmother, 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 thechanges in our mother's treatment. For reasons that are not clear to us, she was nothappy about having you come over and she remained unhappy after your visit. Infact, 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 droppingthe Aricept and about not being permitted to give the albuterol continually. Eventhough you found that our mother's lungs are clear, she seems to be concernedabout fluid buildup, because she now spends a lot of time tapping our mother'sback.
e-mail: comments "at" LewyBodyJournal.org 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 motherdepends on her and she can make life miserable for our father. Being sensitive tothe aide's feelings may amount to no more than including her in our discussions,reassuring her about our mother's condition, and explaining why certainmedicines and treatments are not necessary. I want to make it clear that, howeverthe aide may feel about things, we do not want treatment that will prolong ourmother'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 sherecommended using the albuterol again as needed. We called the aide back so that thedoctor could instruct her. The doctor also explained that wheezing and phlegm would notcause 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 providesome comfort and not extend life. While the aide was there, we asked if droppingmedications had a negative effect on Mother. The doctor said it didn't and started toexplain that Aricept is not for advanced dementia. In the middle of her explanation, theaide 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"
she had to follow a doctor's orders. Thatmay be. We really don't know. Whateverthe case, all the members of the family agree that it is good that we have a doctor visitingregularly. If we'd found the doctor earlier, we don't think that would have affectedMother'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 donethis a long time ago.
e-mail: comments "at" LewyBodyJournal.org 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 repeatingsound. Upon investigating, it was Mother — it was the sound of her rapidly gasping forbreath. The aide had her sitting up in bed; her skin had a bloodless pallor, her lips were adark brown; her mouth was drawn back in a grimace. The aide said she had been like thatsince the previous evening, but despite her obvious distress, the aide hadn't said anythingbecause "when she said things before, she got into trouble." This seemed to be related tothe poor attitude the aide had adopted because of her dislike of Mother's new doctor (see22. The New Doctor, March 2006). The aide hadn't called us or attempted to suction oruse the nebulizer, although the doctor had clearly told her that she should do both asneeded, which seemed to be the case now.
"Mother's lungs were filled
with fluid . She had
developed congestive heart
failure"
administering the nebulizer now had noeffect. (Having Mother lie flatter didimprove her color.) Later that afternoon, the doctor came over and found that Mother'slungs were filled with fluid. She thought that Mother had developed congestive heartfailure, which allowed her lungs to fill up due to weak pumping of the heart. It was notsomething 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 invery bad shape and would probably not live through the weekend. The doctor called thehospice but it was too late for them to come over. The doctor urged them to come earlythe 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 supposedto relieve the shortness of breath and any pain and help dry out the secretions. Both comein a liquid form and were to be squirted into Mother's mouth periodically throughout theday and night. (The local pharmacy had the hyoscyamine in pill form only. This turnedout 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 aneyedropper. The next day, the hospice nurse made sure we got the liquid form ofhyoscyamine.) The doctor also filled out a DNR (do not resuscitate) form to keep nearMother's bed. That evening, Son and Daughter called our other siblings to tell them of theserious turn that Mother had taken.

Source: http://www.lewybodyjournal.org/journal/LewyBodyJournal.pdf

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