A Journey of Love and Compassion
Masuko (Miki) Rothenbaum
This page is devoted to my wife, my lover, my everything. From the moment I met her,
I knew that she was the one that I could spend my life with. We will try to chronicle our long battle with Alzheimer's,
a disease so horrendous just thinking about it brings tears to my eyes.
It all began in 1994, I started to notice some changes, and, at about the same time, a friend was telling me about
her husband's battle with Alzheimer's. Some of the things were similar, I talked to our doctor, he suggested that
I bring her in. While talking to him, she admitted that she had, at times, problems remembering my name, and writing
checks. He asked if she wanted some help with it, she told him, YES. Our next step was to see a Psychologist for some testing. When we got to his office, located in the Mental Health Clinic, she
saw the sign and decided she did not want to go to that clinic. That ended our trying to get help for two more
years. In Jan 1997, her brother passed away, she
took it worse than when she lost her parents. She started to withdraw, within herself, stopped visiting, and going
shopping with her girlfriend, our next door neighbor. As I look back on this I think she stopped shopping (without
me) because she had purchased duplicate clothing and did not realize it until after she came home. Also in Jan,
I convinced her that she would benefit from visiting a psychologist. After all the testing, his diagnosis was similar to our doctor, which was early dementia. He recommended
that we visit the UC Davis Alzheimer's Research Center. In Aug 1997, after extensive psychological testing, reviewing
MRI's and blood tests, their diagnosis was Alzheimer's. She was less than thrilled to hear this, and decided that
they did not know what they were talking about. She could still do things around the house, and was still able
to play the machines in Reno, quite well.
In Oct 97 I decided that I would retire completely in order to spend as much time as I could with her before we
were not able to do the things she liked. In the ensuing years, Oct 97-Jun 2004, her capabilities and desires decreased.
She could no longer pay the bills, (she was the finance expert), I started to do the cooking, she always helped,
by doing it together I am sure that it made her feel that she was contributing. Whatever
we did, we always did it together, and whenever a decision was to be made, she always had something to say about
it. Eventually, she could not make a decision, it was hard for her to decide whether she would have a cup of coffee
or tea, it was, "anything is OK". At times I felt so bad, sometimes tears in my eyes, I could see how
hard it was for her, I wondered what she was thinking. Around Jun 2004, she started to get more aggressive and
angry, and kept trying to leave the house, sometimes insisting that I was not her husband, and I was trying to
keep her here against her will. One weekend we decided to go to the Japanese Cultural Center, (shops and food),
as we got to the Bay Bridge, she accused me of kidnapping her, and by coincidence our neighbors were on the bridge
at the same time, we opened the windows and waved, they asked where we were going, she said, I don't know, he won't
tell me. After we got there, she was fine.
In July 2004, things were getting harder for me, so I tried to place her in day-care, I think it was harder for
me than her. The first day, she got with the group, participated and I watched for about 15 minutes, then left
in tears, it was difficult for me to leave her there. When I went to pick her up, she said she was happy that I
came to get her, and she asked how I knew where she was. Even though she was having all these problems, she could
still bowl, once she had the ball in her hand, she knew exactly what to do. Everyone at the Bowling Center knew
of her problem, and was very supportive. She continued bowling until early
November 2004. The latter part of Nov and early Dec she started not wanting to take her medication, and did not
want to eat. I had to take her to the hospital to get her hydrated. At that time I realized that it might be better
if I placed her in an alzheimer's care facility. We, the kids and I, started looking at different places in Fairfield
and Vacaville, we settled on one in Vacaville. Actually placing her in an Alzheimer's care facility was the hardest
thing I ever had to do in my life. All of what we had been through in our life together was coming to an end, it
felt like I was cheating on her, doing something without her knowledge did not make me happy. The day we actually
took her there, I was not able to do it, my daughter and daughter-in-law took her. The first night without her
was spent crying. It took several weeks before she started to eat, drink, and take her medication.
20 Jun 05:
Six months have gone by, and I miss her more each passing day. As our wedding anniversary
arrived, I mentioned it to her, she just stared, like not comprehending me. A few minutes later I told her that
I loved her, she responded by saying the same thing, she had a harder time trying to pronounce the words. I visit
her every day, and I rate the day, good or bad, based on whether or not I get a hug and a kiss. Today was a really
good day. It seems to me that she has entered another phase of the disease. She is having a hard time trying to
find the right words to express herself.
25 Jul 05:
Another month has gone by and the most memorable has been the last few days. Each day
I have her sit in a chair and I comb her hair, as I finished this yesterday, I told her that she looks more beautiful
now than when we got married. She looked at me and said,"we did, I don't remember". I said that's OK,
I'll remember for you, I got a big hug and a kiss, then she said, "is this the first time", I asked,
the first time for what, and she said "the first kiss". I told her that we have been doing that for many
years. A while later I was cleaning her teeth, after I finished, she got mad, I asked why, and it was because she
could not do it herself. I told her that I enjoyed doing things for her. Then she asked, "what's wrong with
me", I tried to explain, how many doctors are trying to find a medicine to help her get better, she said I
hope so. Shortly after that, she said, "I'm sorry", for what, "being sick". I told her she
did not have to feel sorry. Then she say's, " I still love you", we hugged, we both cry, tears are rolling
down my face. Clearly, the best day in a long time.
26 Jul 05:
Some days are good, some bad, today was the latter. I went a little early to take her
to the dentist, when I got there she told me that I should leave because they would eat me if I stayed. I tried
to calm her, however, when she experiences paranoia, it just has to run it's course. Sometimes it takes several
hours, sometimes thirty minutes. Sometimes I can change her attention to something else. We made it to the dentist
and all was well.
31 Jul 05:
Today was a really good day, got lots of hugs and kisses. She was very talkative and
even remarked on how nice the living room was decorated. After holding hands and walking around she asked me if
I was married, when I told her that I was, and was married to her, she smiled. I do not know what tomorrow will
bring but, today I felt good.
31 Aug 05:
Another month has gone by, I have noticed that most of the time she does not know who
I am. I discovered this as in some of our previous conversations she would ask if I was married. I decided to ask
her if she knew who I was, she looked at me and said no, then I asked her if she remembered the name Sam, she said
yes I remember that name. Well, I said, I am Sam, she thought for a moment, then gave me a big hug. When she comes
to the realization of who I am, I can see a change in her eyes, especially when she touches my cheek with her fingers,
I live for those times. The other day, after being with her for three hours, she dozed-off for about two minutes,
when she opened her eyes she looked at me and said, "where have you been", I told her that I was here
all the time, I got a big hug and a kiss. She then took a nap. What a great way to end the visit.
30 Sep 05:
This month did not get off to a good start, however, it ended up pretty good. She fell,
and it was assumed that she hit her head, (no one saw her fall), so she was taken to the emergency room, wound
up staying three days for them to run tests, everything normal. This picture was taken four days later, after playing
bingo, she won the stuffed rabbit and was very excited. She likes the rabbit very much, and wants it to be near
31 Oct 05:
We had some very good days this month. She seemed to be a little more talkative, mainly
about her stuffed rabbit. She wants to know if she can keep it, and when I tell her yes, she say's she will take
care of it. Then she asks how to care for it, I show her how she can hold it, and also place it on her pillow,
she say's "that's easy", then she asks again what should she do with it. This can go on for awhile, however,
I feel good that she is at least talking about something. The other day we were outside, sitting on a bench under
a shade tree, nice warm breeze, her head on my shoulder, every once in awhile she would comment on how nice it
was to be here. That is something I wish would happen more often. After returning to her room, we were talking
and hugging, I became a little emotional and tears started flowing, she looked at me and said, "don't cry,
it's all right". She is the one having a problem with alzheimer's, and she is trying to comfort me.
30 Nov 05:
The picture at left was taken on 17 Nov, after having her hair fixed in preparation
for Thanksgiving, although she has lost some weight, I think she looks great. The house in the background is where
she lives. There are five identical houses in a circle with an open park-like atmosphere in the middle. This month
was one of the best in a long time. Previously, I had asked her sister to send her a letter, she talked about what
they did as children. I read this to her several times a day, and she laughs quite a bit. She cannot pronounce
all of the Japanese words, that's why I read it to her. A friend she knew from her childhood came to visit her
two weeks ago, I do not think she remembered her, however, she enjoyed talking to her. We had Thanksgiving at our
daughter's house, the entire family was there, we had a great time. We called Japan and she got to talk to her
sister, she enjoyed that. If you have not been close to someone that has had alzheimer's, it is extremely difficult
to see them lose their capabilities, especially with someone whom you have shared the joys of marriage, raising
a family, and after so many years, are still so very much in love with. The one I love is in there someplace, lost
amidst the complex tangles of the mind, and each day I try to bring her out, sometimes I am successful, sometimes
31 Dec 05:
Not only has another month gone by, we have gone through the entire year. These past
two months have been great. She has been laughing a lot more. My daughter gave us some Japanese children's books,
we read them together and she really enjoys that, especially when it comes to making animal sounds, she laughs
real hard. However, towards the later part of the month, she started to change. She is becoming more aggressive,
and we have increased her medication to see if this will help. Christmas day was spent at my son's house in Sacramento,
she had a great time, and loved being around everyone. Our time together is becoming more precious, I can see how
happy she is when I am there, and how she reacts to others, so I try to spend more time with her than I have been.
The other day we were sitting in the living room, she in a recliner, and I next to her, holding hands. She looked
at me and asked if I was happy, I told her that as long as I was with her I was happy, she smiled, and said that
she was happy too.
31 Jan 06:
This month was not a good one. As I mentioned above, Miki has become more aggressive
and started to hit the staff and other residents. It seems that when we tried to reduce her medication so that
she could be more cognizant, she became more aggressive. Because of this, we were given an ultimatum by the facility.
Either have her go through a psychiatric evaluation to determine if there are other things causing her to strike
out, or take her home. After a week of searching, we finally found a place for her to undergo an evaluation and
to determine what type of medication would keep her on an even balance. She was placed in Alta Bates hospital in
Berkeley. I am hoping and praying that they will come up with a regimen that will be good for her, it is so terribly
hard to see her go through this.
28 Feb 06:
Miki was released from Alta Bates on 16 Feb. They did find a medication that worked
for her, the only problem is that she is a little over medicated, however, she is stable and is not aggressive
at all. Yesterday was the first day that she showed some sign of being herself, she laughed while doing some armchair
exercises. Today she was a little more talkative. As the days go by, I am hoping that she will regain some signs
that identify her as Miki. I keep waiting for the day when I go there and she is standing with her hands on her
hips, saying, "where have you been", then I get a big hug.
31 March 06: This
was an uneventful month. She is still a little over medicated, however, during the middle of the month we reduced
her morning medication from 60mg to 40mg. The reason for the change was that we were hoping for her to be a little
more alert during the middle of the day. She did become more alert, however, not to the extent I had hoped. We
plan on keeping the meds as they are for now, and will try to make another change next month.
30 Apr 06:
In the middle of this month we made another change in the medication by lowering the
evening dose from 60mg to 40mg. She is now taking the lower dose twice a day. There has been an improvement in
her alertness, and her response to questions. She is now becoming more frail, and I believe that the lower dose
of medication works because the disease has advanced. The staff tell me that she has started to participate in
some activities, and is smiling more. The day before Easter, the facility put on an egg hunt for the kids, the
whole family came and we had a very nice time. Although I see the signs of what this disease is doing to her, I
still refuse to believe that she will not be coming back home, I have not changed anything.
31 May 06: This month was a
good one, I got a lot more hugs. On Mother's Day we all gathered at my son's home in Sacramento. We sat by the
pool most of the day watching all the grandkids swim, she really had a good time. The picture at right is after
we had her hair fixed, she likes to put-on lipstick and go outside and walk around. That's one thing that has not
changed, she can be feeling bad, but fix her hair, and she is just great. Since changing her medication last month,
she has been on an even keel. Some days a little more tired than others, but by and large she stays the same.
30 Jun 06: This month was our wedding anniversary,
and I decided to take her to her favorite Japanese restaurant. The staff was very surprised to see her, as she
had lost quite a bit of weight. She did not remember the restaurant, or the people she would have normally spoken
to. When the food arrived, she ate by herself, using chopsticks, for a few minutes, then, even though she held
the chopstick, her hand just rested on the table. I started feeding her, and after a few minutes she rubbed my
face several times and said, "I like it", that brought tears to my eyes. All in all it was a good day.
Her speech is becoming more slurred, and sometimes not understandable, but we communicate anyway. Just getting
a hug is all I need.
31 Jul 06: This
month started off OK, however, during the middle of the month she started to get a little more aggressive. I guess
after three months on the lower dose of medication, she can tolerate it better. We started to increase the PM dose
back to 60mg, but only every other night. So she is taking an alternating dose of 40mg one night, and 60mg the
next night. If this does not help, I guess we will have to go back to 60mg every night. As we sit and eat lunch
every day, I tell her how much I love her, she pat's my face and say's thank you, or want's to give me a kiss.
One of the things I like is sitting outside in the gazebo with her head on my shoulder. Sometimes she dozes off,
it just seems like all our worries are gone.
31 Aug 06: The
alternating doses of medication did not last too long, we had to go back to 60mg each night. On 5 Aug she fell
and cut her head, she was taken to the emergency room where it took 6 staples to close the wound. We had the staples
taken out on 15 Aug, and three days later she fell again, breaking open the same area on her head, this time it
was three stitches. In between the time she fell and had the staples removed, she was not eating, and barely drinking
enough liquids. She lost a lot of weight, however, after removal of the staples, she started eating again, and
drinking Ensure, she has gained three pounds back. Because she is a little unsteady on her feet, we have started
to keep her in a wheelchair most of the time. I do keep her walking when I am there with her. This month I have
not received the hugs that I was getting, it seems that she just stares straight ahead, and is ambivalous of me.
I hope this changes, it is making me feel rather bad. I know that the day will come where she will not recognize
me, I hope this is not the start of it.
30 Sep 06: During
this month we had to increase her morning dose of medication due to her aggressiveness. It took about a week and
she settled down. As I mentioned above, I do not get the hugs I used to, however, last week while sitting in her
room, it must have dawned on her that I was there, the look on her face and the hugs I received brought tears to
my eyes, I thanked the lord for that moment. A few minutes later, she was pushing me away. One day she crumbled
up a piece of a napkin, and indicated that she wanted to give it to someone, I told her that I would take it, she
gave it to me, and I walked over gave it to the person, came back and told her the person said thanks, she smiled,
and said, that's nice. It must have made her feel good to do something like that. She is still in there some place,
I hope she can hang on until someone discovers a cure.
31 Oct 06: This
was a very good month, she had a visit from her sister, from Japan. Prior to her sister coming, I kept telling
her that she was coming, and the response I got was a smile. When she got here they talked about when they were
kids, and the things they used to do, actually, her sister did most of the talking, she just listened and smiled.
On one occasion she said, "did I do that?" One day we were sitting outside, getting some sun, and her
sister started to sing some kids song to her, like a mother would do to a child. She laid her head on her sister's
shoulder and listened with a smile. We all got together at my daughter's house, with someone playing the keyboard,
her sister again sang her songs, this time she remembered a song from kindergarten called, "Yuyake Koyake",
and sang some of the words. It's about the sun going down and kids holding hands and going home. This time we all
had tears in our eyes.
30 Nov 06: During
the past month she has been sleeping a lot more. She stays in bed until 0830-0900, eats breakfast, finishing around
1000. I arrive around 1130 to eat lunch with her, and then around 1330-1400 she starts getting sleepy, she then
sleeps until 5PM, getting up for dinner, then its back to bed between 8-9PM. After her sister returned to Japan,
she e-mailed me the words to the song she sang, and each day I try to sing them to her. On some occasions, she
does mouth a few of the words, mostly, she smiles. Maybe the smiles are because I am doing such a bad job of singing.
We spent thanksgiving at my daughters house, the whole family was there. Miki did not say much, but she was awake
the whole time, and watching everyone.
31 Dec 06: Well, we have gone through another year, and it has been a little over twelve years since a doctor
has said that she had early dementia. She has gotten a lot worse since then, and as I look around the facility
at some of the other people, I realize that this is something that is not going to stop. Our only hope is that
someone somewhere will find cure or some way to slow down or even stop the progression of this terrible disease.
I was thinking that it would be great if Oprah would do some kind of special on Alzheimer's in order to place more
emphasis on the need for funds for research. It is a shame that this year, the government has reduced the amount
of money allocated to alzheimer's research. Christmas day was spent at my son's house in Sacramento, we were all
there. This year she was more subdued, mostly just staring. When given a present, she did not open it, just stared
straight ahead. The hugs and kisses are few and far between, but I enjoy them even more.
31 Jan 07: It has been one year since being placed on her current medication, she has become more relaxed,
and her agressive behavior has declined. She has been participating more in morning, chair-type, exercises. She
has also been eating real well, especially when I am there, I keep telling her that the food tastes better when
I eat with her, she smiles when I say that. The other day when I told her that she rubbed my face, kind of hard
to keep from crying. Last week while I colored her hair, she kept wanting to touch it and I had a hard time to
keep her hands away. After I got her to the beauty shop she was calm, and when it was finished, we pointed her
to the mirror and she had a big smile on her face, it was worth the trouble. The shop is located within the facility,
and opened one day a week. When we got back to her house, everyone said that she looked pretty, again she had a
big smile and I know that she must have felt good, it certainly made me feel good.
28 Feb 07: Well,
we have gone through another month and there has not been any significant changes. It is still hit and miss on
getting hugs and kisses. The other day I told her that I was lucky to be married to her, she had a big smile and
patted my face. A few days later I told her that in four months we will be married 51 years. Her response was,
you are lying, she said that in Japanese. I continue to bring Sushi every Friday, she really enjoys that. Whenever
I ask her if she would like to have Sushi, she has a big smile. I am not sure if she remembers me anymore, because
I go there every day there might be some connection she makes when she see's me, however, I do not think she realizes
that we are married. She might have forgotten me, but I know who she is, and I will remember for the both of us.
Thought I might change the font to see if this is easier to read, if so, I will change
the whole page. I keep trying to come up with various things to make her smile, telling her how pretty she looks,
talking about the grandchildren, and sushi, all bring a smile. Whenever I can get her to smile it seems like she
has a much better day. Since the weather has become a little warmer, we go outside to look at the flowers, walk
around, and sit in the gazebo. There always seems to be a light breeze, it feels good. Most of the time, she has
her eyes closed, however, I have learned that she is still listening, if it is something that interests her. While
feeding her the other day, she was eating with her eyes closed, when I started to tell her that one of our grandchildren
was coming, she opened her eyes and smiled.
30 Apr 07: This
was a pretty good month, I had more kisses and
hugs than I have had for awhile. The day before Easter, like last year, they had a BBQ, and egg hunt for children.
Everyone came and we sat around eating talking and having a good time. The other day one of the workers told me,
"thank you Sam", when she heard my name, she looked at me, smiled and started to kiss my hand, and just
as quick, she turned away and it was over. I have learned to treasure those little moments, and look forward to
receiving more of them.
31 May 07:
This month was a continuation of last month. On Mother's Day we all gathered at our
daughters house, spent several hours together, than we all went to a Japanese restaurant for dinner. It was nice
and we had a good time. Sometime after the middle of the month, we started to notice how sleepy she was getting,
and how hard it was to get her to walk. The nurse decided to withhold one of her morning meds., she became more
alert, based on this, we asked for a reduction in the medication dosage. It should start around the first week
of June. As you all know, Friday is Sushi day, well last Friday I brought Sushi as usual. It just so happened they
were BBQ'ing hamburgers and hot dogs, I asked her which she would like to have, and she chose the BBQ, that really
surprised me. The weather was nice and everyone ate at tables set-up outside. It is quite evident that after almost
13 years, the disease is taking a toll on her, she is growing very frail.
30 Jun 07: During the first week of this month we lowered her medication.
It took about a week before the lower dose was apparent, she seems to be more alert, especially during lunch. During
the past 10 days she has been eating real well, although she still only weighs 92lbs, hopefully she will gain some
back. On Father's Day, we all went to our daughters house for a BBQ, steak and chicken, we had a good time. The
picture at left was taken on Father's Day. The weather has been good, and several times we have had picnic type
lunches out on the patio, she seems to enjoy that. Everyday, as I search for news about alzheimers, there are articles
about new medications on the horizon. However, they are still in the testing phases, and even if approved, would
not be ready for a couple of years. I pray every night for something sooner, as I look forward to someday bringing
her back home.
31 Jul 07: This has been a very good month. She continues to eat very good, and when she was weighed today,
it showed 95lbs, that is three pounds over her last weight check. I certainly hope that it continues. The 4th of
July was spent at our son's house in Sacramento. It was by far the best day that she has had in a long time. We
sat outside by the pool, she does not know how to swim, however, when I asked her if she wanted to swim, she said
yes. We sat her beside the pool and let her feet hang in the water, she really liked that. She liked to watch all
the grandchildren play in the pool. As the disease gets worse, it is harder to understand what she is saying, a
lot of it is garbled. However, the other day while we were sitting outside in the gazebo, she dozed off, and I
started to get ready to take her in for a nap. When I moved, she woke up and said, "where you going",
which was very clear, I was surprised, and said, inside for you to take a nap. She was OK with that, as she was
a little tired.
31 Aug 07:
This month was a continuation of last month. She is still eating good, on her
last weight check she stayed the same. On the 3rd we celebrated her 75th birthday, she was very surprised. I took
this picture when we all sang Happy Birthday, I think she was trying to suppress the tears. Because it was a weekday,
the kids could not make it. We did it again the following Sunday, at our daughters house. Its always nice to get
together with the family, we had a good time, and also had another birthday cake. A few days ago, while she was
sleeping, I was fixing her closet, my back was to her. All of a sudden I heard, "honey", I was surprised
and turned around, her eyes were open, she was trying to say something, but it came out garbled. I knelt down beside
the bed and held her hand, she smiled and went back to sleep. Those times are really precious.
1 Sep - 31 Oct 07:
I did not write an update on 30 Sep as I was getting ready for a trip to Japan. Our
son Don, had to go to Guam for business, he was going to stop in Japan on the way back, and asked me to go with
him. While he went to Guam, I went to Japan and waited for him, it was a great trip, and I got to see the family.
One of Miki's older brothers also has alzheimer's, he is not quite as advanced as Miki, however, he is much worse
than the last time I saw him. His short term memory is about 30 seconds long. Although I have known him for more
than 50 years, he kept asking his wife who I was. While I was gone, our daughter and son filled in for me with
Miki. They did such a good job I don't think she realized I was gone. We have stopped some of her medications that
the doctor thinks is no longer necessary, they include blood pressure, cholesterol and, potassium supplements.
She still continues to eat good, and has gained three pounds since her last weight check. Her mood seems good,
and she does smile a lot, that's something I am grateful for.
30 Nov 07: This
has been another good month. Her appetite is still good, however, she did lose one pound on her last weight check.
We spent thanskgiving at our daughters house, the whole family was there, 15 of us. We ate good, played games,
and had a real nice time. This was the first time I got to see Wii games, quite a machine. Miki stayed awake the
whole time, although she did not participate in much conversation, I think she just likes being around everyone.
We called her sister in Japan, and Miki got to listen to her on the speaker phone, she kept looking at the phone,
like someone asking, "where is she", after awhile she did acknowledge her. The other day when I got there
she was in the TV room. I went beside her and whispered in her ear, "honey, I love you", she had a big
smile on her face, and when I hugged her, she nuzzled her head on my shoulder. That does not happen very often,
it made me feel real good.
31 Dec 07: Well,
we have gone through another year. It has now been a little over 13 years since a doctor had said, "I think
she has early dementia". It has actually been longer than that. Now when I think back, I can pinpoint some
things that happened around 1991 and 1992, however, at the time I was not thinking about alzheimer's. She continues
to eat well, and her last weight check showed she stayed the same. We spent Christmas at our son's house in Sacramento,
everyone was there. We ate well, and had a good time. On new years eve, Miki and I went to our daughters house
for dinner. We called her sister and brother, in Japan, although she could not speak, she heard their voices on
the speaker phone, and a tear rolled down the side of her cheek. As she cannot express herself, it is so hard to
know what she is thinking. As long as I see a smile on her face I feel good.
31 Jan 08: This
is the start of a new year, and hopefully, we will hear some good things about turning back alzheimer's. As I read
the "Alzheimer's News" every day, there are so many research organizations coming up with new ideas,
so I am optimistic that we will have something this year. For the last six months she has been eating well, and
I am hoping that this will keep her strength up, she has been the same weight for the last three months. Last week
we had an unusually good day. She seemed to be more cognizant, and she smiled a lot more. When I asked her a question
she answered by saying yes or OK. She was more alert during lunch, and when I told her how beautiful she was, she
responded, in Japanese, by saying, "I know". Those type of day's do not happen very often, so when they
do, I am deeply touched.
29 Feb 08: This
has been another good month. She is still eating good, and has gained one pound from last month. In between the
rainstorms, the weather seems to be getting a little warmer, so we have started to go back outside and sit in the
sun. The day we took this picture was a good day, as we walked around I would whisper something in one ear, then
do it again in the other ear, and she would laugh. As some of the staff stopped by to say hello she smiled at them.
I think she realizes that her speech is not good, therefore does not reply unless it is to say OK, or yes/no. Lately,
we seem to be having more good days than we have had in the past. One day last week, before I arrived, one of the
staff had made her a picture using kraft paper and stick-on cut-outs, and when I got there she was looking at it
and touching it and it made her very happy. It certainly has made me feel good seeing her in a better mood.
31 Mar 2008:
Another good month. She is still eating good, and her weight has stayed the same from
last month. During the early part of the month, we visited her doctor and asked if we could lower part of the medication
that is used to keep her from being aggressive. She takes it twice a day, we lowered the morning dose from 40mg
to 20mg. All was well for about 3 weeks, then she started to be more aggressive with the staff, pushing them away,
and not letting them take care of her. Sometime this week we will revert to the 40mg dose. The week before Easter
the facility had a BBQ and easter egg hunt. We all got together, ate hot dogs and hamburgers, and had a good time.
The other day a woman brought her two dogs to visit the residents, these are called therapy dogs, that promote
emotional well being. Miki was really happy to see and pet the dogs, she had a big smile.
30 Apr 2008:
During this month there were a few changes. She is still eating, however, not quite
as good as before. Subsequently, she lost two pounds. We had a dental appointment this month, and prior to going
we always give her a sedative. Approximately one and one half hours after giving her the pill, a new staff member
observed her sleeping in her wheel- chair, could not get her to respond, so they called 911. After, they called
to notified me, I told them it was her normal reaction to the medication, they said she appeared to be not breathing.
When the ambulance came, they put her on the gurney, she tried to push them away, but was unsuccessful. When I
got there they had already left, when I was told about her trying to push them away, I knew that she was fine.
The only good thing that came out of this, she was given an EKG, XRAY, several blood tests, and all were negative.
She is in good health, except for the alzheimer's.
31 May 2008:
A very good month. Not only is she eating good, she gained back the two pounds she
lost last month. On Mother's Day, we gathered at our daughters house and BBQ'd some chicken. I was really surprised
on the amount of food she ate. I guess being around family helps. About ten days ago, while a staff member was
getting her up in the morning, she placed her in the wheel chair and, I guess had not put her feet in the foot
rest, well, she leaned forward and fell out of the chair, hit her head on the corner of the night stand which caused
a gash on her right temple. They called 911, took her to the hospital, by the time I got there, they had already
given her a CAT scan. They glued the skin together and we were back to the facility by 10AM. The other day while
I was helping her out of the wheel chair, I was surprised that she gave me a hug, have not had one in a long time.
As I responded, and held her I could hear a little whimper from her, that really made me feel good. A moment later
it was over, but at least, I had that moment.
30 Jun 2008:
Another good month. She is still eating good, however, she did lose one pound. On Fathers
Day we again gathered at our daughters house. Not only was it fathers day, it was also our 52nd wedding anniversary.
I tried several times to explain to her that it was our anniversary, however, she just looked straight ahead, one
time she smiled, another time she answered in Japanese, saying "really", then it was all over. The house
she lives in is made for 15 people, two double rooms, and 11 singles. There are 13 women and two men. Because Miki
is petite, some of the women think she is my daughter, when they ask her age, and I respond, they are surprised.
Even though I am there every day they still do not remember me. Each day when I get there, I always whisper something
in Japanese in her ear. When I did that today she laughed, and when I sat down, she rubbed my cheek, what a great
31 Jul 2008:
This month started out good, however, it was almost a disaster. On the 14th she started
coughing, and had a hard time breathing. She was taken to the hospital and after several hours, diagnosed with
aspiration pneumonia, she was admitted and given a high doses of antibiotics. This type of pneumonia is common
for people with alzheimer's, as the disease advances it affects the swallowing mechanism, and sometimes they breath
in liquids, this builds up in the lungs and affects breathing, and causes an infection. She was placed on oxygen
for one day, this in conjunction with the antibiotics helped clear it up. The doctor wanted to start her on a feeding
tube, however, we decided to try a puree diet. She was released on the 18th and has been doing well since. All
her food is pureed, and her drinks are thickened. I still bring sushi every week, this also is pureed, I tasted
it and it is good. We have gone through many phases of this disease, and I am not looking forward to the next one.
31 Aug 2008: This
has been a pretty good month. The pureed diet seems to be working, she is eating good, however,
she did lose 3 pounds. About the 25th of Jul we lowered a dose of medication that was used for aggressiveness.
Also, they are letting her sleep-in until she wakes up, rather than waking her up with the other residents. Sometimes
she does not get up until 9:30 or 10 o'clock. They feed her a small amount and she is wide awake when we eat lunch
together. We are just now seeing the results of this, and for the last few days she seems to be more alert and
responsive. The staff has commented on how much more she is smiling, I hope this continues. The picture at right
is one of those times where she is more alert and smiling, and I can also get more kisses. As the disease progresses,
she is starting to sleep a lot more. Normally up at 10AM, takes a nap at 2PM, up at 5PM, then to bed at about 8:30,
sleeping through the night.
30 Sep 2008: This
month was a continuation of last month. She is still eating good, and on her last weight check she was the same
as last month. Because the facility is not fully staffed with nurses (only 1 nurse), as would be if it were a nursing
home, due to the aspiration pneumonia and the requirement to be on a puree diet, she had to be placed on hospice.
This then allows outside nurses to come and monitor her. So far, this has been working good. There is not much
to report other than the breaking of my heart to see her going through this, and I pray that god will guide someone
to find a cure.
31 Oct 2008: This
month has been kind of a see-saw one. Even though she lost three pounds, she was still eating good. About the middle
of the month she started having problems with sleeping too much. There were several occasions when we could not
wake her up, and when we did she did not want to eat. It looked like this was going to be the end of our journey.
After talking with the hospice nurse and consulting with a doctor, we decided to stop some of her medication, as
it was no longer doing what it was designed for. I was beside myself, having to confront the reality of losing
her was just too much to bear. Approximately two days after stopping her medication, she became more alert, and
starting eating again. We could not believe what was happening, there is just no way you can underestimate the
power of prayer. As long as this keeps up, we are looking forward to having a great Thanksgiving and Christmas.
30 Nov 2008: Although
she has lost another pound things are still going OK. We spent Thanksgiving at our daughters house, everyone was
there, we had a good time. It is always nice to be together with family, and I am looking forward to Christmas
when we do it again at our son's house. For the past several months she has been quite agitated, by that I mean
she has some uncontrolled movements in her legs while she is awake. When sleeping her body is not as rigid, and
she is more relaxed. Next week we are going to try a medication called Marinol, which is a synthetic THC, one of
the ingredients of "MJ". We hope this will relax her more and allow her to be more comfortable. A side
effect of this medication, it promotes an appetite, at 87 pounds she could use it.
31 Dec 2008:
Well, we have gone through another year, and I would have thought that by this time,
something would have been found to help my honey. We have started the Marinol, and it has helped her to relax more,
however, she has still declined. I guess there is nothing that will stop that. We thought this medication might
help her eat more, however, she has lost five pounds. I am trying to maintain a positive outlook, but it is difficult.
We spent Christmas at our son's house in Sacramento, everyone was there, sixteen of us now. We always have a good
time when we are together, hopefully these gatherings will continue for a long time.
31 Jan 2009: We
are still using the Marinol, and she has stayed the same weight as last month, 82 pounds. Basically, she only eats
one good meal a day, however, she drinks a lot of Ensure, I think this has helped her maintain her weight. In the
past couple of weeks, I have received a lot more smiles, I interpret them to mean that she recognizes me, and it
makes me extremely happy. Every once in a while she say's, "anta", which in japanese is a term of endearment
with married couples. So she is still in there, we just have to have the right combination of meds, which has not
been discovered yet, to let her out. I certainly hope that my prayers do not fall on deaf ears.
28 Feb 2009: At
the end of this month she came down with a bout of diarrhea, which has left her kind of weak. As we thought, she
lost almost 2 pounds, she now weighs 80.5 lbs. As of yesterday the diarrhea has stopped, now I am hoping we can
get her back to where she was. She has started to eat a little more each day, however, she is still very weak.
I started writing this a couple of days ago, for the past three days her eating is back to normal and, she has
regained her color. I wish it was as easy as that to get back to normal from alzheimer's.
31 Mar 2009: This
has been a good month as far as eating goes, however, she still lost one pound. Maybe she is just trying to get
down to her fighting weight. Yesterday I had a great reception, she had just been given a bed bath and was ready
to come out of her room, when she saw me she had a big smile and I even got a kiss. The days are starting to get
a little warmer and we go outside in the sun more often. I am trying to strengthen her legs more, so I have started
to make her walk a little each day. I stand behind her, she leans against me and takes small steps, I hope it helps
make her legs stronger.
30 Apr 2009: This
month was a continuation of last month, she is still eating good, and her weight has stayed the same. The day before
Easter, like last year, the facility had a BBQ, and egg hunt for children, two of our grandchildren came, it was
nice to have the kids there. Its hard to determine if she recognizes our grandchildren, the only one that she paid
any attention to was our youngest granddaughter, she is eight months old, and that was when she was sitting on
her lap crying. She actually made an attempt to try to comfort her. The other day I brought a headset for her to
listen to some music, she always liked Neil Diamond, so I played a couple of his songs, she seemed to enjoy it.
31 May 2009: This
month takes on a new look, although she is still eating good, she has lost another pound, down to 78 pounds. I
have been told that in late stage alzheimer's, the body processes the food, but the nutrients are not absorbed.
We have also increased the amount of Ensure that she drinks, hoping this will help. It seems like this is the time
I was hoping would never come. Several days ago I baked some oatmeal cookies, from scratch, and took them to her,
when I told her that I made them, she had a big smile. She ate two of them, and I have been giving her some each
30 Jun 2009: This
has been a good month, she is still eating well, and her weight has stayed the same. I am hopeful that the increase
in Ensure will help her. For Father's Day we went to our son's house in Sacramento, everyone was there. We had
a good time and got to see all the grandkids. A couple of weeks ago, after receiving a bed-bath, she was in a great
mood. She really enjoys the bed-bath and it seems to relax her more, besides, I get a lot more smiles and kisses.
On this particular day she was acting rather coy and it made me feel good to see her like that. I wish everyday
could be like that.
31 Jul 2009: Well,
we are just a couple of days from her birthday, 3 Aug, and things are about the same. She is still eating well,
however, she did lose another pound, she is now 77 pounds, I also notice that she seems to be a little more tired
during lunch, dozing- off more. Whenever I cut her toenails she always moves around and it is hard to do, however,
yesterday she fell asleep, so I am wondering what's going on. As you can see from the picture on the right, she
has lost a lot of weight compared to the picture of one year ago. She has always liked carrot cake, so on Monday
we are going to have a small birthday party for her with the other residents, and we will have a carrot cake.
31 Aug 2009: The months seem to go by rather quickly and I wish there was some way
to slow it down. Even though she seems to be eating good she still lost another pound, she is now 76 pounds. As
you can see from the picture on the left, we had a small party for her birthday. Our daughter and granddaughter
was there and we shared a carrot cake with all the residents. A few months ago I mentioned that I was trying to
get her to walk by leaning against me and taking small steps. It got to a point that I did not have to hold her
up that much, however, now I am noticing that her legs are getting weaker and she cannot hold up her weight. These
are not very good signs.
30 Sep 2009: Another
month has gone by and although she is eating good she still lost another pound, she is now 75 pounds. The hospice
nurse visited her yesterday, checked her vital signs, all are good, her lungs are clear. I was concerned about
that since she had aspiration pneumonia last year. I am still getting some smiles and kisses, which makes me feel
good. One day last week when I came for lunch, I whispered in her ear that I was looking for her, she laughed,
when I sat down she said, "I've been waiting", I was surprised to hear that, especially since her speech
is so garbled. Every so often she says something that I can understand, and is in response to our conversation.
I just wish I knew what was going on inside her head, and how I could help her.
31 Oct 2009:
This month has been a continuation of last month. Still eating, however, she did lose
some weight, she now weighs 74 1/4 pounds. Hopefully, this will be leveling off, I just don't know how this can
continue and she still be somewhat functional. The last few days she has been talking a lot, I have not been able
to understand her, so I just agree with her. I interrupted her by saying, "honey", she looked at me,
I said, "I just wanted to tell you that I love you", her response was, "umm", then she put
her head closer to mine. I think she understands more than I thought she did. Today I told her that when she gets
better we will go shopping for new clothes, then take a trip to Japan to visit her family, again she said, "umm".
30 Nov 2009: Things
are still the same, she is still eating, however, she did lose about 1/2 pound, she is now 73 3/4 pounds. I think
her weight might be leveling off, there just isn't much more that she can lose. Just one year ago, when we started
giving her Marinol, she was 87 pounds. I had thought this medication might help her gain weight, but the illness
is not letting it happen. We spent Thanksgiving at our daughters house, everyone was there, and as always we had
a good time. As a family guy, I always look forward to these gatherings, I just wish we could do them more often.
Before Miki got sick, and even for a few years after, we would always go places and experience things together.
Having someone to share things with is one of the things I really miss. Now-a-days, our sharing is a little different,
not quite as much fun, but something I look forward to every day.
31 Dec 2009:
Well we have gone through another year and it is now 15 years since a
doctor has said he thought she had early dementia. I would have thought there would be some progress by now. This
month she gained about 1/4 pound, she is now 74 pounds. We really had a very good month, she has been eating good
and, in a good mood. We all gathered at our son's house in Sacramento, and as usual a good time was had by all.
As you can see from the picture on the right, my honey has a big smile, that was my christmas present. This is
the best picture we've had for a couple of years. She had taken a nap and when she woke up it was all smiles. Our
daughter-in-law waited and got this shot at the right time. I am looking forward to the new year and hoping that
we will all have something to celebrate and, in particular, a break-through for alzheimer's.
31 Jan 2010: Today
was a real good one, I got many kisses, she was in a good mood. We had a couple of episodes of her throwing-up
about 15 minutes after eating. The nurse seems to think that her stomach is getting smaller and we are trying to
feed her too much at one time. So, we have stopped giving her ensure and dessert with her lunch and now give it
to her as a snack a couple of hours later. She seems to be tolerating that a little better, however, she lost one
pound, she is now back to 73 pounds. I have added Ensure pudding in addition to the drink to see if that helps.
Through-out this month the days have been varied, some good, some just OK. I feel that the good days have out-numbered
the OK ones, those are the days that I get a lot of smiles and kisses. As we look forward to a new month I am hoping
for more of the same.
28 Feb 2010: This
was a good month, she did not have any problems with throwing-up. However, she still lost 1/4 pound, she is now
72 3/4 pounds. There were no down days at all, the entire month was the same from beginning to end, this is the
first time in a long while. The other day our oldest son came to visit, in some past visits she did not even look
at him, this time was a little different. She smiled at him and tried to say something, the smiling made him feel
good, meaning that she recognized him. Today we received a package from her sister in Japan, she sent a sweater,
shirt and a painting that she made. I will take them in tomorrow and show them to Miki, I am sure that she will
31 Mar 2010:
We picked-up this month right where we left off last month. She is still eating good,
she started the month at 72 3/4 pounds, however, around the 15th I weighed her and she was down to 71 pounds. By
the end of the month she was at 72 pounds, so overall she lost 3/4 of a pound. We are trying to make sure that
she has at least 2 bottles of Ensure and 2 Ensure pudding's each day, it seems to be working OK. Her mood is excellent
and she seems to be in good spirits. Our day-to-day routine has not changed much, when I get there she is normally
at the table waiting for me. We normally start eating about 1/2 hour after I arrive, it takes approximately 1 hour
or more to feed her, after which we sit around or go outside until she gets tired. Then it's time for a nap and
our day comes to an end.
30 Apr 2010: Things are
still about the same, she is still eating good, however, she did lose a little weight, she is 71 3/4 pounds. As
you can see from the picture on the left she was in a great mood today. Whenever we are out walking around and
the staff stop to say hello, she always has a smile for them. With spring in the air, the flowers in the courtyard
are blooming and they look very nice. We stop at all the pots and plants to soak in the colors. Because she is
so small some of the residents think she is my daughter, there is one that thinks she is my granddaughter, even
though I tell them different the next time we see them it's the same thing all over again. Maybe I should color
31 May 2010: Things
are going along smoothly, with her weight at 71 1/2 pounds, she is still eating good. We had a little scare earlier
in the month, for about 6 days, she was not eating to good, falling asleep during meals and, when I laid her down
in bed for a nap, she would be sleeping before her head hit the pillow. This lasted about 6 days, then she slowly
returned to her old self, but not quite. This has occurred before, what we think happened is that she went into
another level of decline. Each person declines at their own rate, there is no timetable. I am just so happy that
my honey's rate of decline is really slow. When the hospice nurse visited her on Friday, she was greeted with a
smile, and she was surprised to see her so alert. I hope this goes on for a long long time.
30 Jun 2010: Well,
we are still moving along. Although she is still eating good, she still lost almost 1/2 pound, she was just a hair
over 71 pounds. The 15th of June was our wedding anniversary, and as I think back to that time it brings back so
many wonderful memories. We had to wait until the 15th (payday) to get married because we did not have any money.
Even so, those were some great times. Trying to get her to understand what day it was was difficult, however, when
I got her to focus on what I was saying, her voice raised and she started to say something, I got a hug, then it
was gone. However, that moment meant a lot to me.
31 Jul 2010: Well
we have gone through another month and she has lost another 1/2 pound. She is just a little under 71 pounds, I
don't know how long this can go on, I am really worried. However, she is still in a good mood and I am still getting
some smiles, in fact today when I told her I loved her she leaned toward me for a kiss. I was a little surprised
as she does not do that very often. As you look back through some of the other pictures here, you can see that
in the picture on the right she appears a little more gaunt. Tuesday is her birthday and we are planning a little
party for her and inviting the other residents. Hopefully we will get a good picture to post for next month.
2010: As the picture shows, we celebrated her birthday on the 3rd. She always liked
carrot cake, so that's what we got, everyone else enjoyed it also. Our daughter came to help in the celebration.
Her weight today was a surprise, the scale measured 70 pounds exactly. She lost much more than I thought. The past
few months we had been seeing about 1/2 lb per month loss, this month almost a full pound. The hospice nurse came
today, listened to her lungs, checked her heart, everything seem's OK, he was surprised about her condition and
how good she looked. She is still in a good mood, and I am still getting some smiles. However, I can see some slight
changes in her, she seems to be a little more lathargic, that along with the weight loss does not seem good. I
told her today that we will go to the beauty shop tomorrow, but that did not bring any response, normally she gets
a little more upbeat. Hopefully, after we fix her hair she will feel better.
30 Sep 2010: Well,
this is how she looked after we got her hair fixed. She was a little more upbeat,
everything taken into consideration, this was a fairly good month. Although still eating good, she did lose another
1/2 pound, she is now 69 1/2 pounds. Other than the alzheimer's, she is still in pretty good health. She is not
experiencing any pain, the only medication she takes is Marinol, which was started to help with her uncontrollable
leg movements, it is pretty well under control now. I was thinking of stopping this medication, however, one of
it's side effects, it promotes a better appetite. With her losing weight, I want to give her every opportunity
to keep the weight loss to an absolute minimum.
31 Oct 2010:
I do not know if we are making any headway or not, however, she did not lose any weight
this month, she is still at 69 1/2 pounds. The hospice nurse had previously said that at some point she will level
off. I am hoping so because she cannot afford to lose any more weight. Several weeks ago, when I arrived, I started
placing myself close to her, and in her line of sight, to see if she would recognize me. Usually, when she see's
me I get a smile, one time when I did this she said, "anta", in japanese, which means "you",
but for married couples it means "dear". This really made me feel good, but it has happened only once.
I will keep trying for a repeat.
30 Nov 2010:
The levelling off of the weight only lasted two months, this month she was at 69 pounds.
Other than that everything else remains the same. She still seems to be in a good mood, and occasionally very happy
to see me. We spent thanksgiving at our son's house, everyone except our oldest grandson was there, he is in Korea
teaching english. We had a good time, family gatherings like this have always been my favorite. Although our grandson
is in Korea we still had a visit with him via Skype, when we woke him up, everyone had a chance to see and talk
to him. What a great technology. I will be looking forward to our family Christmas gathering, so we can do this
31 Dec 2010: Well,
we have come to the end of another year, and it is now 16 years since she was first diagnosed with alzheimer's.
It does not feel like we are any closer to a cure than we were 10 years ago. Her weight this month dropped to 68
pounds. She is still eating good, but it is just not staying with her. We celebrated Christmas at our son's house
in Sacramento, I enjoy our family gatherings and even though not everyone could be there we had a good time. Her
sister now has Skype video capability, so I have been taking a video of Miki and showing it to her sister in Japan.
I think her sister feels a little better now that she can see her.
31 Jan 2011:
We start this year hoping that it will bring some success in our quest for an Alzheimer's
cure. Not much has changed during this month, even though her weight stayed the same, she looks so frail. We did
have one scare this month, one morning she had a temperature of 103o and she would not eat breakfast. She was given a tylenol plus several glasses of juice and water,
and her temp came down after two hours. Since then there have not been any recurrences, we were really worried
at the time. Our next door neighbor, who is Japanese, came to visit her, and I was surprised at how Miki reacted.
She smiled several times, and nodded at questions and although she could not respond I think that she understood
and was very happy with the visit. I am looking forward to more of these visits.
28 Feb 2011: As
we continue on our journey not much has changed, she is still eating good, however, she is still losing weight.
She is now 67 1/2 pounds. I am amazed at how strong she seems to be and how good of a mood she is always in. We
did get some bad news last week, her brother, who also had alzheimer's, passed away, he was diagnosed about ten
years after she was. I do not plan on telling her as I do not think she would be able to comprehend it anyway.
The last time we were in Japan, 2003, we spent a fun evening with him and his wife. It was at that time that I
realized something was going on with him, and shortly thereafter he was diagnosed. Hopefully, in the not too distant
future, we will be looking at a cure for this terrible disease.
31 Mar 2011: I
would like to say that this was an uneventful month, however, we had a little problem. While I was toileting her,
I turned around to get paper towels and she fell off the toilet, hit the side of her head, causing a cut on her
forehead and a bruise on her checkbone. At about the same time, the hospice nurse was coming for a visit, and he
took care of her. He used steristrips instead of stitches, they were on for about a week, then a bandaid, which
comes off tomorrow. She never indicated that it hurt, even when I held an icepack to the bruise, there was no indication
that she felt anything. On another note, she is still eating good, however, her weight has gone down to 66 pounds.
She is starting to lose more muscle weight, as evidenced by her fall from the toilet, unable to balance herself.
I also notice that her legs are getting weaker, when I try to stand her up to put her in bed, her legs are bent
and are not able to hold up her body. In the past I used to walk her by letting her lean on me, I would be behind
her, I thought this would help strengthen her legs more. Well if I try this now, I must hold her up a lot more.
I keep telling her how much I love her, and that everything is going to be OK, however, I am not too sure about
the last part, things are slowly deterioating.
30 Apr 2011: A
few months back I talked about her weight leveling off, don't know if this is it, however,
for two months she is still the same weight, 66 pounds, and she is still eating good. It is starting to get a little
warmer now, so we have been going outside to look at the flowers and sit in the sun. Here is a picture of her while
we were sitting in the gazebo. We had her hair done a few days ago, I think she looks pretty good, in fact, she
looks real good. A few weeks ago, another Japanese lady moved in to the same house where Miki is. She sits at our
table during meals, and when I bring in sushi, we share some of it with her. She is in the middle stages of alzheimer's,
as she can still feed herself, and respond to questions. She is from the southern part of Japan and was married
to a military guy. Apparently he was taking care of her in their home when he unexpectedly passed away. Because
of her condition, she did not realize that he was gone, and they were not discovered for a couple of days. Once
in a while she will ask where her husband is, and tears come to her eyes. Stories such as this are abound in the
world of alzheimer's, and there is nothing on the horizon to help. On the brighter side, my honey seems to be acknowledging
people more and smiling at them, sometimes a little laugh. While this does not sound like a big thing, it makes
me feel better, before she would just stare at them.
31 May 2011: This
month started off very good, a continuation of last month. She did lose another pound, down to 65 pounds, but still
good. This month we had an Italian Theme night, all families were invited for a home-cooked italian dinner, it
was very good. Our daughter Dorothy, son-in-law, Victor and our granddaughter Julianna came. We had a great time
and Miki enjoyed it. A couple of days later Miki started with diarrhea that lasted two weeks, after the first day
it was just water with no fecal matter, and occurred after the noon meal, the last three days it was a thick mucus.
We tried medication, rice porridge, just warm liquids, it did not stop. During the last week of the month I met
with the hospice nurse and social worker. Based on what had occurred he thought that her intestines were starting
to shut-down. This hit me very hard, although I knew what was in the future, I was not prepared to hear this. He
also mentioned that since Miki has lost so much weight, if we continue to let her sit in the wheelchair, the probability
of the skin around her tailbone could break, it would then be very painful for her. Also, her body does not have
the capabililty to heal a break. So, at the end of the month we started her on bed rest only.
21 Jun 2011, 1745:
As with all journeys, at some point they end. Our journey of love and compassion ended all too soon. When I arrived
in the morning, she was having a hard time breathing. I called the woman in charge and she responded by trying
to sit her up a little higher, which helped her breathing a little. She had eaten some hot cereal for breakfast
and showed no signs of having a problem. Apparently she must have aspirated, which is not uncommon in late stage
alzheimer's. By this time I had called our children and told them, "something is not right", our daughter,
who lives the closest, arrived first followed by our youngest son, our oldest son was in Idaho for the week, he
called right away. The hospice nurse arrived, examined her and administered a small dose of morphine to try to
help her breathing. The nurse explained that based on his exam and Miki's condition, he thinks she has somewhere
between 24-48 hours. I kneeled by her side, held her hand, and told her how much I loved her. This went on for
a couple of hours. The woman in charge must have realized what was happening, she asked me if I would like to hold
Miki, I replied yes. They brought a recliner into the room, sat me down, placed a blanket over me, and placed Miki
in my arms. When they did that, she started to breath normal again. I talked to her and told her that I loved her,
and everything was going to be OK. A few minutes later her breathing started to slow down, after 30 minutes, she
stopped. To me this was such an incredible experience, as I was able to hold my honey to the very end.
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