My father is in the beginning stages of it.  Right now, he's at home
with me.  Granted, the nursing home is recommending the feeding tube for
your father, but if he can, he can drink what is used for a feeding tube
orally.  5 cans a day equals 1250 calories, which is enough to sustain
him.  A feeding tube is not that hard to take care of as I take care of
people who are developmentally disabled and have operated feeding tubes
myself, but does your father have a living will of any sort?  Feeding
tubes can sustain life for a short time, but would that go against his
wishes?  From what I've read from you regarding your father, it sounds
like he's ready to go, and losing weight is just the beginning.
Incontinence is also a part of it, along with the loss of speech,
walking, etc.  Eventually, and I'm being honest, his body will start
shutting down.  There are medications that might increase his appetite.
You might want to look into that, too.  The feeding tube can be used to
administer medications, too.  However, is that what he would want?
Follow your intuiton...you know what's going on better
than any of us ever could.

I wish you peace in this troubling time.

wouldn't.

My prayers are with you.

Barb

I'd echo what Evelyn said, but of course, if you know of anything your
father said when he was lucid to the contrary, I think it would be
reasonable and moral to follow what you best understand he would have
wished.  I did take part in a deathbed vigil with a friend with advanced
motor neuron disease a few years ago - he had refused medicine and food, and
(though he was diabetic, which sped the process) it's my understanding that
this way of dying is not as painful as we generally conceive it - but given
the experience with the nursing home staff in that case, I'd also agree with
Dennis that Hospice might be a good decision.

My father has still not signed the medical or durable POAs, or the Advance
Directive, though he's told other relatives on two occasions that we had set
appointments to do it. At the hospital for tests earlier this month, he
pointed the sig about requiring POAs to be presented at every check-in, as
though he thought he had executed them.  I'm afraid my reply to him was a
bit sharp and snide - that the sign only applied to people who had done the
responsible thing and executed POAs, not to people who had stalled on it,
that I had the documents at hand, but he had never signed them.  Didn't faze
him a bit.

I wish you, and your father, peace through this.
--
Robert

I agree with Evelyn it is recommended at this stage NO FEEDING
TUBE...What are you going to safe him from with a feeding tube? You are
going to add more suffering as the tube is not pleasent.
I have been thru this with my husband and did not use a f.t. it would
only prolong suffering.In my opinion let him die with natural means.
Sandra

Hi,

You have to ask yourself, "what would your dad have wanted?" Then,
ask yourself what would I have wanted?"

It's very hard to make these desisions, but now your the parent of your
parents.

I feel for you, going through the same with my mom.

merry christmas to all,
dianne

An excellent post, Mary.   About eating.....

A strange quirk I have found, (oddly enough) is that Ida eats more when
there is NO one near her!   You wouldn't think it, but it is so.   We
discovered that sitting at the table and eating with the family is almost a
guarantee she will whine and refuse to eat, etc.

We discovered this by accident one time when we were going out for dinner
and it proved over time to be true that if we feed her dinner all by
herself, she will patiently eat every morsel.   Makes no sense, but it
works, so we don't argue with success.

There is apparently something about having a table full of people that all
she does is stare at them - first one then the next, and the next thing she
is refusing to eat.   Put her alone and she eats everything.   I think she
may feel the stress of having others around on some level, and it is
confusing to her.   When she is alone she can focus ONLY on her dinner and
that is exactly what she does.

Also my best secret is making lots of good thick, stew-like, homemade soups
for her.   She will always eat soup.   Of course homemade soup is easily
eaten, contains lots of good healthy fresh vegetables, and tastes great.
Anything complicated, like too many different items on her dinner plate, or
if it is hard to chew, forget it.

We found a freezer a great help, since it is only practical if you make soup
in quantities.  Another tip is using a pressure cooker to make the meat and
stock separately, then combine with the veggies later.   A food processor
can chop the veggies but of course you still need to peel and trim and wash
them by hand.   It may be time consuming but it has been very worthwhile for
us.

I also have found that Ida will say she is not hungry, but if we believe her
and she goes to bed without eating, she gets up often and is restless all
night.   I think that people with this illness don't recognize hunger and
thirst anymore.

At any rate, I wouldn't want a feeding tube no matter what, not for her or
for either of us.  I'd let nature take its course.

OR, as we found out in our family, they are homes run by the
Catholic Church or its various health care affiliates (Sisters of
St. Anne, Sisters of Providence, etc.).  We had to hunt around to
find a doctor who would buck them get my great aunt OUT of a
Catholic nursing home.  

Because she became incompetent due to strokes the year before our
state passed a Living Will law, she was never able to sign one,
although during the battle to pass it (opposed by the Catholic
Church, BTW) she had been a strong advocate and had expressed her
wish to NEVER be fed through a tube.  

She had a tube inserted in the hospital after one of her last
strokes so that they could give her Dilantin to stop her grand
mal seizures caused by stroke damage, and unfortunately they
started feeding her through the tube contrary to her wishes.

When she finally awoke from a 60 day coma, it was obvious she
didn't want the tube --- she tried several times to pull it out
but was too weak --- and that she didn't want to be in the home
either.  My mom and uncle were able to get a friendly doctor to
allow her to go to my mom's place, where we had arranged Hospice
care.  

Someone in the family pulled out the feeding tube as soon as the
ambulance crew left, and we let her know that she was home, in
her old room from 15 years prior, and that if she wanted to leave
now it was OK.  She came home in the afternoon and died
peacefully early the next morning.

It was during her coma that I made my Living Will and made it
very clear that I NEVER want a feeding tube.

Group: alt.support.alzheimers Date: Tue, Dec 23, 2003, 6:10am (CST-2)
From: Mary_Gordon@tvo.org (Mary Gordon)
Bob, my heart goes out to you. As your father enters the final stages,
there are painful realities to face, and difficult choices to grapple
with.
If you go to Google.com and run a search on feeding tubes and dementia,
you will see that there is very little evidence that a feeding tube
prolongs life OR alleviates suffering - in fact, most of the evidence
suggests it actually causes suffering. Very few doctors who are
experienced with later stage issues for Alzheimers patients would
recommend such a measure - the majority would support hand feeding and
palliative support as the most humane.
Absolutely, you do not have to permit this to be done to him. The fact
that you are asking the question tells me your gut is talking to you. I
personally would never permit a feeding tube or IVs unless it was a
situation where the person was temporarily impaired and would recover to
the point where they would be shortly unnecessary - but as you know, no
matter how he is fed, your father is not going to regain much ground.
However, some of his current state may be from lack of nutrition.
If you run the google search you will also see that there have been
studies done on nursing homes that push feeding tubes. They tend be
ignorant of late stage Alzheimer's issues and the current research,
motivated by fear of law suits - and they also tend to be for profit and
see the time required for careful hand feeding as an expensive burden.
As Alzheimers progresses, it is common for decreases in appetite to
occur. Beside loss of appetite, brain impairment also contributes to
difficulties in using utensils and in chewing and swallowing.
Some suggestions to get more food into your father include
- maintaining as much physical activity as you can for the person to
stimulate appetite (having said that, you don't want them pacing all
day, since they may be burning more calories than they can take in),
- providing regular meals and snacks that follow a routine,
- try more frequent smaller meals and snacks - sometimes that can keep
the weight on better than larger meals three times a day
- eating with the person (seeing someone else eating can get them going
as well),
- preparing familiar and favourite foods (hey whatever works - if they
will eat spagetti 5 nights a week, go for it)
- making sure the food can be easily chewed and swallowed (she may need
a soft diet of pureed food and thickened liquids)
- precut meat or finger foods as necessary,
- let them get the food into themselves any way that works - for
example, let them eat with their hands, or drink soup in a cup -
whatever will get it into them.
- give the person utensils that are easy to hold (they make spoons etc.
with big grips for people who have limited fine coordination),
- as coodination deteriorates, offer direct assistance (the person may
need to be prompted to chew and swallow or actually fed)
- many choices of food on a plate can confuse an impaired person - try
serving one part of the meal at a time
- consider vitamins or food supplements (i.e. Boost, Ensure etc.)
- make every calory count - if the person is drinking a lot of juice, it
can kill their appetite for more nutritious fare
- make sure the person has lots of time to eat (it can be very time
consuming to get food into them)
- try and keep things calm, relaxed and pleasant at meal time, since
many people will pick up on a tense atmosphere and it can make things
worse.
Hope this helps
Mary G.  

Dear Mary,

Thank you for putting in this list of advice on how to get a loved one
to eat and or eat more at times. I've printed it off to reread when I'm
more wide awake. :-) But I already see somethings I need to keep doing
and or can try with my Mom.

Love,

Ronny