July 13, 1935 - June 9, 2008

After a strong recovery from a previous bout with pneumonia last
month, Mom passed away yesterday after a steep three day decline. On
Friday she was sitting up and eating, when fed by an aide, on
Saturday she was quiet and the nursing staff contacted Dad and said
"there had been a change", on Sunday I went to see her and she was
"sleeping" and quiet in bed. Dad went to see her Monday morning, she
was again/still "sleeping" and he discussed hospice with the staff,
but made no decision. At 7.15PM last night the facility called him
and notified him that she died, peacefully.

She must have said, "I want to see Jesus" thousands of times during
her last 13 months and I last heard her say just that several weeks
ago when Linda and I visited her together. Well, I believe she will
get her wish one day, but right now she knows nothing in the longest
sleep.

Dad and I are plodding through the paperwork involved in the American
way of death. After dozens of phone calls to friends and family
across the continent the word of her passing is gradually spreading
among those who loved her.

This is Craig Philpott at cphilpot@puc.edu and this blog is closed.

And on this visit

Mom was eating lunch in the dining room.

I could not, did not recognize her. Looked around, she did not seem
to be in the room. Then an aid, who was feeding her, said her name, I
looked in that direction and there she was. Her face and skin are so
different from just months ago and oh so different from a year ago,
it is sadly amazing. It has been one year, this month, that she has
been in a nursing home.

What a lovely phrase, nursing home, sound homey.

While Linda and I visited with her, and spoke with her aid, she
seemed to definitely recognize both of us. Our voices and names
seemed to bring brief recognition to her and she cried. We sat in the
front lobby together for awhile, in front of the indoor bird aviary,
and from time to time she would try to talk or say things. I love
you, I want to go home, I want to go to heaven, take me with you, you
have not been here in a long time. After each comment she would lapse
into quiet.

After months and months of decline, her level of apparent recognition
was confusing. Clearly revived from her hospital visit, she seems to
have a new chapter ahead. She is hand fed, all meals, her care staff
are very careful with her feeding, trying to prevent aspiration. She
is up in a wheel chair, unlocked and able to move, according to the
aids, a surprising amount.

And when it was time to go, she hung on to Linda's arm and just did
not want to let go.

Well, now what

Mom is doing well in a sad sortof way.

The staff are very aware of her decline and are working with her food
and fluids situation to keep her as healthy as possible. Dad has been
very pleased the care she is receiving even as the nursing staff are
asking him when he wants to place her on hospice.

Strange new world.

A mental level of finality

There is a mental level of finality involved in filling out the
papers at at nursing home to eliminate medical intervention in the
care of a patient. To realize in your head that no medical
intervention is useful is not to realize it in your heart. Making the
correct choices for another person is not easy but participating in
extending suffering is far worse. Living an honorable life while
watching another's life ebb away is distressing. Being prepared for
something you have never experienced is impossible. If death is a
sleep with no pain, why do we try to avoid it, even at the end?

Ah the power of modern medicine

And then it was Friday.

Mother has responded, finally, to the medical support in the hospital
and after four days of "non-responsive state" she is back to
"baseline" state, or, no worse off then she was about 10 days ago,
which was not very good state to begin with.

Three IV solutions have been used. Potassium, Sodium and an antibiotic.

She is now responding to speech, seems to recognize some voices and
her eyes are open some of the time.

She is asking for her father, asking for Jesus and moderately aware
between times of sleep or non-responsiveness.

The hospital doctor again repeated his professional opinion that the
"aspiration pneumonia" was ultimately untreatable since any ingestion
of food or liquid will restart the infection and he can not recommend
repeated hospital admission cycles. Dad and I agreed with his opinion.

Mom has been discharged back to the nursing home and her care plan
has been adjusted to prevent this cycle from repeating in the future.

And then it was Thursday

Today the updates on Mom are not encouraging.

She is not responding to the antibiotic IV in the hospital. She is on
a IV drip of fluid and (I presume) nutrition also.

The hospital doctor spoke with Dad and they discussed options
including ending the IV system and antibiotic intervention.

Mom is "non responsive" and unable to sit up and drink or take
nourishment by mouth.

Dad and I and doctor are meeting at bedside tomorrow around 11 AM to
discuss ending of all intervention and starting hospice.

Hospice means, among other things, palliative care only, comfort
care, no intervention, ending in death.

Mom has aspiration pneumonia

It has been a tough couple of days.

Mom was admitted to hospital yesterday and the hospital doctor, not
her regular physician, discussed the reality of aspiration pneumonia
with Dad today. I went up and visited with Dad yesterday and did not
go in and see Mom at the hospital. Dad and I shared a meal and
discussed Mom's situation with "possible pneumonia". I have learned
much in 24 hours.

Dad called me mid-day today and updated me. The doctor apparently had
a rather frank discussion with Dad about the reality of what is
happening with Mom and the Alzheimer's. There is no way I can type
all the material I have read today on this topic and I will post some
links here on what I have found. I have known of aspiration for
years, you choke and get a little water in your windpipe. Well, with
the advanced deterioration of the brain in Alzheimer's the lower
level brain controls begin to break down and the semi-autonoumous
action of breathing or swollowing gets confused and happens at the
same time. Fluid gets into the lungs, infection sets in, aspiration
pneumonia has arrived. And medically it is discussed at length, how
much treatment is appropriate, the infection will continue reaccuring
and the cause can not, ultimately, be removed.

http://www.caregiver.org/caregiver/jsp/content_node.jsp?

nodeid=399&expandnodeid=387

http://pages.prodigy.net/bjbservices/eol.htm

http://www.cnn.com/HEALTH/library/HQ/00618.html

Tough decisions. What to do, what not to do?

Mom tipped over her wheelchair

It had to happen. No one saw it happen, she did it in the hallway all
by herself.

Stitches, bruising, torn skin that is so thin that a touch can cause
bruising and bleeding under the skin. I have not seen her. Dad
visited right after the center called us and he said she got pretty
bruised up. I guess tonight I just don't have a whole lot of words. A
person should not lose their mind and then not leave town, it just is
not fair.

Mom continues to change

Dad called and wanted to give me an update on Mom.

I went by and saw her a week ago and she did not recognize me in any
way and I did not stay and visit.

Dad visited today and right off noticed that the staff were no longer
providing the "one on one" staffing with Mom. She has slowed down, or
the medications are adjusted, or there have been internal changes.
But right now, no need for special staffing.

She did not seem to particularly recognize Dad and he stayed with her
for awhile. On the way out he spoke with the staff and asked about
the changes and was told she no longer needed the extra staffing.
She just seems slower now, quieter in her wheel chair, not trolling
the halls and bumping into others.

All just seems sort of sad.

This note feels strange

I have pondered writing this note for a very long time. My entries in
this blog about Mom are getting further and further apart, and
shorter and shorter. It feels strange in a way, it feels some how
relieving in a way also.

Mom is at peace. I mean, I am at peace with where she is. She is
comfortable, she is well cared for, she is nourished, she has little
idea of what happens day to day. And apparently I have come to some
sort of peace with all this. I seem to have nothing new to add, her
situation is not changing from day to day right now, she is well
cared for.

I on occasion drive past her facility and visit Dad without stopping
to see her. This generates far less thought or guilt then it would
have months ago. It has not even been a year yet and I am growing
complacent.

And in all this there is a sort of resignation, acceptance that what
is, IS. What will be, WILL BE.

I continue to care and concern much for the growth and transformation
of Dad into his life alone. Such is moving forward. But not moving on.

It is a new day

Dad and I just had the best evening. I cooked him an excellent home
cooked meal for dinner then we took off with me looking to take some
new sunset pictures across the lake. It was good to drive and talk
and stay connected. The sunset picture and other images of mine are
posted on my photo website, http://photo.net/photos/cphilpot.

I dropped in to see Mom for the first time since the care center took
down the signs on the door stating, "This facility is experiencing a
flu outbreak". She was resting on her bed and I had a nice visit with
her nurse aide. Mom did not recognize me, not even a little. Dad told
me that she knew his name yesterday, today, nothing. (and why is it
important, either way?) Mom sat up for a few minutes since she seemed
to know she had a visitor, but then she lay down again and drifted off.

She looks rather different then when I last saw her. Since my last
visit the facility called to notify us that the doctor had ordered
changes in Mom's meds, it is courtesy notification to the family. The
doctor has full control. Anyway, they changed her calming or sedative
medication several weeks back and the change is rather obvious. Her
face is a bit puffy from medication effects of some type, she is
calmer, quieter and yet fully able to talk to staff and ask to get in
her wheelchair or go to bed. It is an interesting change.

After so many months of seeing her so agitated and banging into
things this somehow seems better. The aide spoke of Mom as "her
favorite patient". She told of Mom always speaking of Jesus and
always being nice to the staff. This in contrast to other guest who
from what I have heard, speak of Jesus in a rather different manner.
It was a good visit.

MOM has the flu

Dad got a call from the staff last night late. They told him that Mom
was throwing up and they wanted him to know. He went by the facility
today and on the front door was posted a temporary sign saying the
facility is infected with "the flu". He went in, spoke with the staff
briefly and left with out visiting Mom or walking down any halls. The
staff did not say how many patients have the flu, but it is
considered facility wide. Dad neither wanted to contribute or
contract whatever is going around and he walked out.

I know Mom had a flu shot in the fall. Well so did I, and I am
recovering from the worst, most debilitating bout of flu I have had
in over ten years. Go figure.

I also know that there is significant risk associated with a confused
person throwing up, aspirating the expectorate and contracting
pneumonia. It is a too common series of steps from flu to pneumonia.

I trust the staff, the head nurse, a wonderful lady, and Mom's
doctor. But I worry.