Dear Just Me,  I sympathize with you in the loss of your dad, but don't let
your grief make you do something that you might later wish you hadn't.  My
husband had Alzheimers and he did not take any nourishment, food or drink,
for the last week before he died.
It was not the Nursing Home's fault; he just would not take in anything.
And to me, I knew he was so much better off that I didn't even cry when he
died.  I had done my crying during the eight months he was in the NH.
Did your father have a living will, or a health directive naming who was to
make medical decisions for him?  Both my husband and I decided years ago
that we did not want to be kept alive by feeding tubes, or any extraordinary
measure.  Just being alive (breathing) is not living; it is just existing.
What pleasure is there in that?  I'm afraid you are only thinking of
yourself, not what was good for your dad.  If I'm wrong, I sincerely
apologize.  Will making a case against the nursing home bring your father
back, or will it just ease your pain?
You will find all nursing homes keep warmer temperatures for their patients.
Most older people get cold easier than younger ones.
Every time my son comes to my house, I turn the thermostat down so he won't
be too hot; I have to add more clothes because I get colder than he does.
I'm not trying to make you angry or make a decision for you.  I just think
you need to consider all this carefully.
Gwen

By the way, was it your mom or your dad? or are you just pulling our leg?
Gwen

People with dementia often lose any sense of how much food or water they
have ingested or how much they need to ingest. We often spend a couple hours
a day to get 2 tiny meals and 2 glasses of liquid into our LO with dementia.
It can get really frustrating even for people who are there 24/7 and very
personally motivated to get one person to eat and drink,  let alone the
difficulties for someone making minimum wage with many patients to care for.
Heart rhythms will go out of whack anytime someone doesn't drink enough
water or eat properly for any length of time.

Could you relative's care been better? Maybe or Certainly - but what you
describe is pretty normal for nursing home care. People with dementia are
frequently dehydrated and not eating properly when living in an
institutional setting. Even if they had been hydrated with IVs and a feeding
tube, would this have done anything except prolong the patient's misery?
When you are dehydrated, you just sleep and aren't in pain. I'm sure this
doesn't help with your own pain but it is the truth.

No one killed your relative but you do have some grief issues to work
through. Donate your time at a nursing home or care facility. Get some grief
counseling. A lawsuit will just waste your money and increase your
frustration.

Just my 2 cents,  take care,   AW

I know you are grieving for your dad, but are you aware that tube feeding is
absolutely the unkindest thing you could have possibly done to your father?
It is a good thing they didn't do it.   I have papers signed that forbid my
family or anyone else to even consider it.    It was ultimately far kinder
to allow him to pass naturally rather than to keep him artificially alive
when every molecule of his body was saying "no more" and "let me pass in
peace".....

I tried to get

A person whose brain is actually shrinking away one cell at a time, slowly
dying by inches, who doesn't want to eat, is not going to suddenly want to
eat food in a change of scenery or when offered different or better food.

I know you are missing your Dad, but it is a fact of life that everything
that is born, eventually dies.  Everything that begins, eventually ends, and
that change is the nature of our very existence.   You cannot hold on to a
person who is dying from a horrible illness like alzheimers disease, and you
shouldn't want to, even if you loved the person very much.   In fact the
more you love them, the more you would want them to pass naturally, in
peace, in the proper time.   It is kinder to them.

If your Dad was sick enough with alzheimers, the part of him that was well
enough to call out, was probably gone long before he actually passed away.

If you had cared for your dad at home yourself for any length of time, you
would know that old people are very often cold.   Most nursing homes keep
the heat at levels that normal people find oppressive.  But the old folks
need the extra heat.

They

It does not behoove any nursing home to allow a person to die.  When they
die they don't get paid anymore.   I am not saying that your dad was treated
perfectly or that he wasn't either, but what you are saying seems to me to
be more from grief than what makes sense logically.

That does sometimes happen.  They do the best they can to help them to eat,
and they provide fluids and such to the patients, but when they reach a
certain point in their illness, sometimes it is the natural result of that
illness.   In the nursing home where my mother in law stayed, they were
constantly trying to get her to eat or to drink, but she just didn't want
to.   When she was home with us, we were constantly trying to get her to eat
and to drink, and we were also frustrated by the fact she had no desire to.
Before she went into the nursing home she had gotten to the point where the
only thing she would eat was home made soup.

That is a shame, but I can relate to how difficult it must be to be caring
for a whole floor full of sick and elderly individuals.   Do you have any
real solid documentable reasons to believe that they didn't care for your
father when he needed them?   Thinking it is one thing, proving it is
another.   You would need some kind of proof in order to go further with it,
legally.

I wish I could help you to feel more at ease with your dad's passing.   Some
things are just beyond comforting, but I can tell you that the degree of
your grief, and the amount that you miss him, does not justify trying to
keep him here on this earth when he had this horrible illness.   If you need
someone to tell you that, I would like to try to help you to grasp it.

Everyone dies.  It is the natural result of having lived.   You need to talk
to someone about your fears and to reconcile yourself with his passing.   It
doesn't necessarily mean someone is to blame for it.   It is perfectly
possible that your dad got the best of care that was available and he still
died from his illness.

I hope you find peace within yourself and that you can get past the guilt
and sorrow you are feeling.   The greatest comfort you could find right now,
would be to remember the man as he was, and to think about the good times
when he was still alive and well, and to be thankful that his suffering has
ended, and that he is in peace.   I am sure that if your dad was alive he
would be unhappy to think that you were suffering like this right now.

I feel so sad for you, and hope you let these torturous and regretful
thoughts go from your mind.

Hi Just Me

My mother in law died of end stage Alzheimers. She essentially stopped
eating and drinking about 6 weeks before she died. Despite coaxing,
careful handfeeding, and every tactic we could think of to get calories
and fluids into her, she took in less and less, and eventually died. It
wasn't neglect in any way. No one manipulated her meds. Her brain
damage had just gotten to the point where everything shut down, and
what was left of her flew away. It was a very peaceful death. My
husband was there - and I have often said, we all of us regret that she
got Alzheimer's, that she had to go through all that misery and loss -
but we don't regret for one minute that we let opted for palliative
care and comfort measures only, and let her go. It was the right thing
to do for her, even though it was hard and painful experience for the
ones she left behind.

I answer Alzheimer's questions for allexperts and I get asked about
tube feeding quite often. The thing is, all the research shows that it
doesn't work for end stage dementia in terms of improving outcomes. It
makes the patient more uncomfortable, and it doesn't prolong their
lives. More than 70% of patients with tubes have to be restrained to
stop them from pulling out the tubes. Hardly a peaceful  way to end
your days.
Here is a good article http://www.aafp.org/afp/20020415/1605.html

It is also common to keep nursing homes warmer than a healthy younger
person finds comfortable. Many of the frail elderly have little
subcutaneous fat. They have trouble regulating their body temperatures
and they often feel cold - you visit any seniors place, and even in the
warm summer, many of them will be wearing sweaters. Generally, they are
more comfortable when its warmer.

As for possible cancer - well, when a person has an incurable,
untreatable terminal disease like Alzheimer's, and everything boils
down to quality of life and comfort....if he had been diagnosed with
cancer, what would you have done about it? Cancer treatments offer no
happy choices - its burn, slash or poison (ie. radiation, surgery or
chemo) and most families would only want something treated if there was
a hope the cost of the treatment in suffering would buy time with
meaningful quality of life. Personally, had my mother in law had
cancer, we would not have opted to do anything except keep her free
from pain.

I'm thinking this is more about your feelings of guilt and loss. You
have suffered an enormous loss and you weren't ready to let go - and
now you want there to be someone or something to blame. Its not your
fault he got sick and died. I don't think its anyone's fault. He had a
terrible disease, he was going downhill, and no matter where he was or
who was looking after him, the outcome would have been the same. You
made the best choices you could. There is no power in heaven or earth
that could have restored him to health. There is nothing medically
available that would have returned him to the man he was before
Alzheimer's hit, and there is nothing that could have saved him from
the inevitable end of this illness. The best anyone can hope for is
that the person goes without pain or suffering - and those last days,
they are really unaware of where they are or who they are with, unlike
people with intact minds who are dying of other things - where you
might get flashes of lucidity. With Alzheimer's, the tide just goes
out, and there is no death bed drama like a moment of your loved one
murmuring meaningful last words, or even knowing you are there.

I'm so sorry you are in such pain and are having such a hard time
coming to terms with your father's death. My father died suddenly at
63, and I struggled with that, but time gave me some perspective. It
happened. There is nothing to be done now except remember with love, be
grateful for what you had, and honour him with actions that make the
hard world a kinder better place.

M

I doubt if you do.  Besides, why would you have wanted them to
prolong his life?  So he could stay confused and upset, and
suffer more?  

It's normal for someone who is dying to stop drinking and eating,
and feeding someone through a tube is one of the cruellest and
most upsetting things you can do, especially to a demented person
who wouldn't understand why you are doing it.

And what good would it do to run cancer tests on someone who is
dying from a fatal disease anyway, when the tests would be
intrusive and confusing, and there is no reason to treat cancer
in a person dying from AD?  Why prolong the misery they're
already undergoing?

I'm sorry for your loss, and it's obvious that you're looking for
someone to blame.  Anger is one of the phases of mourning, and
it's normal, but you don't want to get stuck there.  

I know from my own experience that if you don't deal with these
feelings in counseling, the anger can manifest itself at the most
inappropriate times, much to your detriment.  Please do yourself
a favor and call your local hospice organization and get yourself
into one of their grief counseling sessions so you can work
through this.

My wife died Thursday Dec. 14th of Alzheimer's after going thru the
no-eat/drink stage and I can only echo the opinions already expressed.

Bud

I'm so sorry for your loss.  I wasn't going to reply to your post because of
the painful memories from losing my MIL last year but maybe it will help you
understand.   My MIL was 101 years old but she didn't suffer from dementia
until the last few months of her life.   She was very family orientated and
had been a widow for 57 years at the time of her death.   At the age of 100
(almost 101) she was bowling and keeping up her own house and then she fell
at home.   I figure she had a stroke.   She went willingly to the NH.  She
became dizzy when she tried to walk had to use a walker or be confined to a
wheel chair.   At the age of 100 doctors really don't try to diagnose
anything other what is needed to make someone comfortable.   She lost her
appetite and she tried to eat for the first week because she really wanted
out of the nursing home.   But she couldn't eat and then eventually she
didn't want to try.  I know that either consciously or subconsciously she
wanted her life to end.   She had macular degeneration and was very hard of
hearing.  In the previous months before her fall, she had been going through
her house and organizing her things.   Getting rid of a lot of stuff like
old Christmas cards, letters etc.  After a couple of weeks of not eating and
refusing to try to walk she started having hallucinations.   The
hallucinations eventfully stopped.  Long ago she had made the decision of no
feeding tube and the family respected that.  She  starved to death but the
doctor put Alzheimer's on her death certificate.  He couldn't very well put
what really happened.  It was hard to stand by and watch what was happening.
I first met her at the age of 88; she was planning her trip to Australia.
She went and had a good time BTW.   She always liked me.   She said it was
nice to have someone around that called her by her first name.   She would
have over 50 family members over for Christmas and just about everybody
called her Mom or Grandma.  I miss her this time of year because she really
loved Christmas.   We kept some of her decorations and put them out.
When she was close to death, hospice was with her.  The hospice nurse
recommended that no family members stay that night because it would more
difficult for her to go.   My 81 year old sister-in-law wanted to stay with
her mother even though she has her own serious health problems.   Other
family members wanted to stay too but none of us did.  The hospice lady
stayed instead and my MIL passed peacefully.
I guess I'm rambling here.  What I'm saying that not eating is not at all
unusual and sometimes we just want to fix things that can't be fixed.
Don't be too hard on yourself.  Could the nursing home have done better?
Probably.  I think that could be said of most of them.  My advice is let it
go .......June