Expert: Mary Gordon - 1/2/2006

Question
-------------------------
Followup To
Question -
Hi - we are possibly at the end stages of AD with my mother-in-
law - after going into a nursing home just 12 days ago (she was
at home, eating limited soft foods, doing puzzle books,
walking), she has refused food and water and is now weak,
barely communicative and severely dehydrated.  We are
struggling with taking her to the hospital to IV hydrate her -
could this be the end stage of AD or has she gotten to this state
by her initial refusal to eat until she got home - how do they
make her comfortable if this is the end?  It's a terribly heart-
wrenching disease to watch.  Thanks for your comments.
Answer -
Hi Deirdre,

It would be extremely unusual for her to make such a precipitate
change in such a short time due
to the Alzheimer's.

The progress of AD is not that fast - just to give you an example, my
mother in law was pretty
much text book - she was an extremely healthy woman, so she
survived right to the end of
Alzheimer's. She stopped walking following a fall and became
completely incontinent about two
years before she died. She lost intelligible speech about 1 1/2 years
before the end. By the time
she stopped eating and drinking, she could no longer even sit in a
chair without being propped -
essentially, she spent her days in a recliner or in bed, sleeping all the
time, unable to do much,
recognizing no one, unaware of her surroundings, unable to do
anything for herself, and being
hand fed.

Below, I've pasted the clinical description of the last stages for your
reference. When you read
them, I think you will see why I doubt very much what you are seeing is
actually the final stage -
just prior to the move, she sounds more like early stage 6, but I
understand the dilemna of what
to do about her current condition. Having said that she is not in the
last stage doesn't mean she
may not die from what is going on.

I think when it comes to AD, the lucky ones who are those who are
carried away by other
illnesses - because the natural end of AD is pretty brutal on everyone
(much more so on the
family than the person) - as I'm sure you have an inkling of - I recall
seeing some of the "living
dead" in the nursing home long before poor Dolli reached that stage
and I just couldn't imagine
her like that. However, to me, it seems that your mother is more in a
temporary trough brought
on by distress. If she is rehydrated, she may bounce back. Only you
know what she has left in
terms of quality of life. Clearly, she had a lot of self awareness prior to
the move if she was that
aware of the change. You want to be in the place that you really feel in
your gut that letting her
go is the right thing.

This is a very personal thing - but having been through the deaths of
many loved ones, I would
never permit a feeding tube unless it was a situation where the person
was temporarily impaired
and there was hope of real recovery to the point where the tubes would
be shortly unnecessary -
and this is not the case with true end stage Alzheimers. However, your
mother may be helped by
rehydration (just some fluids to see what happens, not a feeding tube).

With my mother in law in the end stage, she essentially stopped eating
about 6 weeks before she
died - she just ate less and less until she stopped despite best efforts.
It did not seem to bother
her at all - I am not sure if she had gotten to the point with brain
damage if she didn't feel
hunger or thirst, or just didn't know what food or drink was. We kept
her very comfortable and
kept offering her food and drink many, many times a day right to the
end (and she continued to
refuse, right up to the end). I'm sorry to be so graphic - but it actually
was a very gentle death,
with my husband holding her hand. She did not seem to be suffering or
in any discomfort,
distress or pain - she just sort of faded away over a period of a couple
of weeks. They kept her
lips and mouth moist with glycerine wipes. I wonder if what was left of
her just decided she had
struggled enough and it was time to go.

I know how very painful the entire subject is - and how much you love
your mother and want to
do the best for her. What have they tried with her? Has a doctor ruled
out any other cause of her
sudden decline - i.e. could she have had a stroke, or have any minor
infection?

Are they actively coaxing her with anything she will take in? Are they
actively working on it? Have
they tried feeding her in a quiet place rather than a bustling dining
hall? My mother in law did
better at that stage eating alone - the noise and distraction of the main
dining hall was too much
for her. Have they tried anti-agitation or anti-depression meds to help
her get over the
adjustment hump? Does the facility and doctor not have any advice or
insight? Just seems to me
to be likely a very extreme adjustment trauma, and they should be
equipped to deal with similar
issues.

I know this a horrible situation. I never, ever thought the day would
come when I would actively
pray for someone to die, and that day did come for our family. The
whole thing just breaks your
heart - no one deserves this - not your mother, not your family. Its just
totally crummy, unfair,
and sad.

Thinking of you.

Mary G.

Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD).
May occasionally forget the
name of the spouse upon whom they are entirely dependent for
survival. Will be largely unaware
of all recent events and experiences in their lives. Retain some
knowledge of their past lives but
this is very sketchy. Generally unaware of their surroundings, the year,
the season, etc. May have
difficulty counting from 10, both backward and sometimes forward.
Will require some assistance
with activities of daily living, e.g., may become incontinent, will require
travel assistance but
occasionally will display ability to familiar locations. Diurnal rhythm
frequently disturbed. Almost
always recall their own name. Frequently continue to be able to
distinguish familiar from
unfamiliar persons in their environment. Personality and emotional
changes occur. These are
quite variable and include
(a) delusional behavior, e.g., patients may accuse their spouse of being
an impostor, may talk to
imaginary figures in the environment, or to their own reflection in the
mirror;
(b) obsessive symptoms, e.g., person may
continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent
violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot
carry a thought long
enough to determine a purposeful course of
action.

6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence

Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal
abilities are lost.
Frequently there is no speech at all - only grunting. Incontinent of
urine, requires assistance
toileting and feeding. Lose basic psychomotor skills, e.g., ability to
walk, sitting and head
control. The brain appears to no longer be able to tell the body what to
do. Generalized and
cortical neurologic signs and symptoms are frequently present.

7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost

Hi Mary - thanks so much for the quick response.  I would agree that
she was early Stage 6 on
the 21st of December - the doctor at the nursing home has put her on
an anti-psychotic
(respiridol) to see if that will improve her attitude and then she may
eat.  We have been actively
working with her to eat and other than the odd sip of something,
completely refuses.  At home,
she was down to eating a mushy bowl of cereal for breakfast with a
coffee and then pea soup for
dinner, that's it.  She would never eat  or drink anywhere but home.  
She has also just been
diagnosed with average-growth rate lung cancer that we are not
treating.  She has a living will
and her wishes are that nature take its course and nothing
extraordinary is done to keep her
alive.  It just seems like such a quick transition - and now her refusal
to eat is causing a major
dilemma for everyone.  My fear is that it will be assumed by all that she
has progressed rapidly to
end stage and her wishes will be honoured and we will watch her die
when we could have in fact
done something.  The terrible irony of course is that we would be
prolonging the inevitable
horrible end similar to what she is going through now.  The doctor at
the nursing home seems to think that she has 0 to low cognitive and
that if we can't get her to eat, then she is near the end.   I don't know if
there's really anymore that
you can add but I appreciate your thoughts.

Answer
Thanks for the additional details - her cancer does make a difference, in my mind, as does the fact she made her wishes known. I had another woman asking a similar question just a few days ago. Her mother was also just diagnosed with lung cancer, but they had elected to start her on radiation, and the difficult side effects were making them all wonder if they should just leave her be, and make her final months as comfortable and happy as possible.

If the goal is palliative - you keep doing just what you are doing. No tubes, no IVs, nothing but comfort, love and gentle support. You do your best, you watch and wait, you keep her out of pain, and you let God and nature take their course. The rest is out of your hands. You just have to be ready to let the tide go out.

If you did take action to intervene, would it be about what is best for her or about what is least frightening for you? No matter what you do, her time is short, so quality of life matters. Perhaps this is her way to show you she's really had enough. If you were able to restore somewhat her via medical intervention, would that mean a better death for her later or a worse one? Death from lung cancer isn't pretty. Death from Alzheimer's can also be very hard on everyone - its like dying by inches over months, with the person becoming a living corpse without the closure of a funeral. Sometimes you have to wonder if there are worse things than dying. They used to call pneumonia the old people's friend for a reason.

We live in a culture that is not accustomed to letting death come. When we see death coming, we feel we should be doing something, fighting it, throwing every weapon we have at it. The very hardest thing to do is to be courageous and just stand by. Your real job as her daughter to love her, and make sure her last time is as happy, peaceful, comfortable and loving as possible. If you can stand still for a minute, and shut off the noise in your head from all the "shoulda/woulda/couldas" that fear and guilt create , what does your heart tell you to do? Never mind what anyone else thinks or would say. You are her daughter. You know her almost better than anyone.

Does the nursing home offer hospice support services? She certainly would qualify for most palliative programs, and you might want to talk to local support organizations to connect with others who have gone through similar stages and had to make hard choices. You sound like you need some reassurance and support.

I know this is rough and scary for all of you who love her, but the last days (if these are indeed those), whether from Alzheimer's or cancer, or what is happening now, don't have to be frightening. This is harder on you than on her. We do have a horror of the idea of dying from dehydration or starvation, but people who go this way don't seem to be hurting at all.  

The times I've sat by the bedside of someone I love in their last weeks are among the most treasured and transforming experiences of my life. Its hard to put into words - but think how lucky you are to be able to be there for her, and be the priviledged witness to something truly holy - the gentle close to her story. Every moment of her life has been a gift, and now you have the gift of being there for her.

Hang in - its your turn to be strong for her. You can watch and wait. The bird is on the branch - it may fly or stay for a little while yet.

Mary G.
Toronto