Re: Death and Dying

July 14, 2002

Where do you stay on tube feedings? I had a doctor say not to do it, but to

me that would be letting your LO starve to death. I questioned a nurse about

it and she said her feeling was that it was an awful way to die. Fortunately

Mom has an AD. But I hope that day never comes.

Mariea

July 14, 2002

This is a heavy issue but I agree 100%. I've been taking it all in and have

identified with all of the goings on........To me comfort and peace are the

issues. Not maintaining life or cognitive abilities no matter what. My

husband has been my everything for 46 years, but we are declining rapidly.

I'm wondering what is next........Bobbie

>

> Reply-To: LBDcaregivers

> Date: Sun, 14 Jul 2002 14:03:44 -0700

> To: <LBDcaregivers >

> Subject: Re: Death and Dying

>

> I could never deny my husband, the man I have loved almost all my life, the

> peace of a pill for the last months, days or weeks of his life.

>

> Eve Fleming

>

> I do not think ANY of us would! There is an assumption that Aricept and

> Exelon keep

> hallucinations at bay. If that is your belief, then it would be cruel to

> withold these

> meds. If presented with this issue right now...I would withdraw Aricept and

> lose a

> small amount of clarity...if it is even working still....but keep him on

> Serequel which

> takes care of his hallucinations, as well as helping him sleep. Mai-Liis

>

July 14, 2002

If a person with LBD is not able to swallow, that person is on their way to

going to the other side. I believe that this is the last stage of the

disease. My father died March 10, 2001, of LBD. He could no longer swallow.

He couldn't talk, he couldn't walk, he couldn't even turn over in bed by

himself. He suffered so much for 2 long years. When someone is put on a

feeding tube you are not prolonging their Life, you are prolonging their

death. Their body is shutting down. When my family decided to decline the

feeding tube, we placed my father in a wonder hospital with very loving,

caring people that made us feel like our decision had been the right one. He

was placed on an IV which had a strong pain Killer in it (I think is was

morphine but I am not sure). I was told that the pain killer takes away any

hunger pain that they may have. I was also told before my father lost his

ability to swallow, that many patients with LBD forget what food is and

really have no desire to eat. This was how my father was. He never wanted

to eat, he was basically forced feed before his swallowing went.

In the end my father was comfortable and seemed very much at peace. I hope

that I do not offend anyone but it was 3 weeks before my father passed away.

His family was by his bed side and he knew that it was time to go and he went

peacefully and very comfortable.

It was a very hard decision to make but I do not regret the decision nor does

my Mom or my bothers and sisters. But in the end, you must decide on what

your love one would want. Not what you want. It is very hard to let someone

go out of your life especially if that person was a major part of your life.

I believe my father would not have wanted a feeding tube.

Like I said before

" You are not prolonging life, You are prolonging death "

My heart is with you all

It does get easier. I am remembering my father in happier times these days.

Not in his last days. And I know that he is still with me.

I Love you Dad.......... Miss you.........

July 14, 2002

I could never deny my husband, the man I have loved almost all my life, the

peace of a pill for the last months, days or weeks of his life.

Eve Fleming

I do not think ANY of us would! There is an assumption that Aricept and

Exelon keep

hallucinations at bay. If that is your belief, then it would be cruel to

withold these

meds. If presented with this issue right now...I would withdraw Aricept and

lose a

small amount of clarity...if it is even working still....but keep him on

Serequel which

takes care of his hallucinations, as well as helping him sleep. Mai-Liis

July 14, 2002

Hard Choices for Loving People

http://www.hospicenet.org/html/choices.html

July 15, 2002

In a message dated 07/14/02 7:18:57 PM Central Daylight Time,

cammannadvanspec@... writes:

>

> It does get easier. I am remembering my father in happier times these

> days.

> Not in his last days. And I know that he is still with me.

> I Love you Dad.......... Miss you.........

>

,

Thank You for sharing. Dad has on his DNR papers, no tube feeding. I am so

thankful for not having to make that decision. If and when the time comes I

hope it will be easier. On the other hand my Mom will make that final

decision and I hope with our support it will make things easier for her.

Again thanks for sharing,

Debbie C

July 15, 2002

,

I just it depends on the individual situation. Thank you for sharing you

information with me. I hope the time never comes to make that decision. The

good Lord willing, when the times come and I'm not wishing it any time soon,

Mom will just go peacefully and quietly.

Mariea

July 15, 2002

Wow, your Dad was on a feeding tube and is off it now. That's where I guess

shadows of doubt sneak in. If you hadn't gone with the tube would he still

be with you or not. Those are things we can't really answer can we. It's a

shame that you had to be rushed in to a decision. Doctors some times lose

sight of the fact that they are dealing with people and not just the

disease/symptoms.

Mariea

July 15, 2002

> Hard Choices for Loving People

> http://www.hospicenet.org/html/choices.html

This is a beautifully written piece. Thank you for posting it.

Sally

July 15, 2002

Eve

I second your opinioniated post. My dad has lived in a nh for 2+ yrs

and I continue to look for anything and everything to help his quality

of life. Whether it is medication, food, or care I am always searching

to help him. By the way, my dad started on Exelon in March, while in

the nh, and I refuse to take him off it. Take Care!

Sandie

Des Moines, IA

July 15, 2002

Mariea

I had to make the decision for a feeding tube, and had about 5 minutes

to decide. The attending doctor messed up royally and when faced with

the decision, I could only say yes as I didn't want my dad to starve to

death. If I had it to do over again, I would opt for no feeding tube.

I remember my dad used to pull the tube that was hooked to his belly,

off, and spin it in the air...like he knew what it was for and was

chosing not to get the nutrition. He has been without if for over 2

years and I don't think he remembers it. I wish I would have had my

brother there for the decision and that we could have had time to set

down and discuss it...instead of just me over the phone with the

doctor...what a horrible memory.

Sandie

Des Moines, IA

July 15, 2002

Mariea,

I was told just the opposite from the hospice people. They thought it

was more painful to tube feed if the body was shutting down. I would

not chose under normal circumstances to tube feed. If my Mom decided

not to eat that would be her decision and she has told me in the past,

" no stuff " to keep her alive. And I am glad she did as it will make my

decision much easier, I think.

Donna

A balanced diet is a cookie in each hand. Courtsey of The-Mouth.com

July 15, 2002

Mariea

I am sure my dad would not still be here if we had not put in a feeding

tube. There is so much more to the story...he was in a nursing home

where they deal with the elderly, not residents with dementia. I had

had a very bad case of the flu and hadn't been to see him for about 5

days. When I felt o.k. enough to visit him I found he had not had

anything to eat or drink for about 3 days and finally a weekend nurse

called to tell me. I rushed to the nh to find my dad...who looked like

a skeleton, with little movement, in a wheelchair, near death. We (my

aunt and myself) had him taken by ambulance to the hospital where the

doctor that oversees the residents at the nh came to the emergency room,

looked over a chart and left. He never came back to the hospital over

my dads 7-9 day stay. During that time I had taken 2 days off work to

set with my dad as 2 different swallow evaluations were done, leaving

him termed as NPO...nothing by mouth. While in the emergency room, the

er dr. said it looked like pneumonia, yet dad had no fluids in his body

to make the pneumonia. After starting an I.V. the pneumonia was

present. Well, back to the week long stay, the dr. didn't know swallow

evals. were done...of course he didn't attend them like I had.

Suddenly, during one of my 3 time a day visits I noticed my dad was

dressed, still had an I.V., and was setting up in a wheelchair. I asked

him if he was being discharged and he nodded YES. I panicked!!!

Running to the nurses station, I asked why my dad was being discharged

since he was NPO? The nurse said she had the same question and was

going to call the dr., she would let me know what the dr. said an asked

where I would be so she could give me the drs. answers. I told her I

would be right next to her side, and she needed to call the dr.

immediately. Well, she informed the dr. about the swallow evals., of

which he didn't even know had happened and said we have only one

choice...a feeding tube. So within those 5 minutes, I said " go ahead. "

The appointment was set up for 8:00 a.m. the next morning, and dad went

back to the nh with a feeding tube. He started gaining weight, started

walking, and was understanding more. When the tube was put in he

weighed 135 lbs., now he varies from 195-205, his normal weight. I

realize this is a personal, individualized choice, however, I have no

regrets for the decision I had to make at that time. Under different

circumstances, I may have chosen differently...

Sandie

Des Moines, IA

July 16, 2002

,

Thanks for the input, I'm sure it must have been the hardest decision your

family has ever had to make.......Shirley

>I believe my father would not have wanted a feeding tube.

>

>Like I said before

>

> " You are not prolonging life, You are prolonging death "

>

>My heart is with you all

>

>It does get easier. I am remembering my father in happier times these

>days.

>Not in his last days. And I know that he is still with me.

>I Love you Dad.......... Miss you.........

>

_________________________________________________________________

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July 16, 2002

Mariea

I wish I could give you a hug and take some of your pain away. I felt

and still feel a lot of what you have mentioned. When the decision was

made to put my dad into a nh there was so much going on. I had taken

care of him for 3-4 yrs before he went to the nh. At one point I had

a nurse, and a home health aid that came into his apartment 2 or 3 times

a week. The nurse called me shortly after I had left and told me dad

was indicating he would harm himself. It was her job and duty to make

sure he was safe. We ended up taking him to an adult psychiatric

hospital where he was admitted. When he was discharged, he was never

the same. From there he went into a nh and is now living in a different

nh. It's so hard to explain...he still walks, but with stiffness and a

gait. He can still eat yet chokes often. I think this disease has

really affected his mind and thinking. I know he knows me as he smiles

when he sees me, then cries the rest of the visit unless I do something

crazy to make him laugh. He sets around a lot, seeming to not have any

will power to do anything. The guilt and sadness I feel, still, is

overwhelming, however with prayer I have found strength to face every

day. Also, I went to my doctor and explained life to him. I have been

taking 50 mg. of Zoloft daily for 1 or 2 yrs. So much more is going on

that often life seems unbearable yet I chose to look at the positives

and gifts I am given. I am thankful I am able to view life from above

ground. I am thankful I have 3 healthy, wonderful boys. There are

times when I could drown myself in sorrows, and after my small pitty

party I stand up again to face the next moment. I have given support to

other people when they have lost a parent...didn't like losing my mom

when I was 19 and she was 47 but there is a reason for everything. I

truly hate that my dad has this disease yet have been able to give

support to other people because of it. You will make it through this

with your mom...the guilt, depression, and sadness. Give yourself a

little time to process what is happening. Please keep talking about

what is happening to you and what you are feeling. There is no better

reason to be on earth than to listen to and be there for other people

and I will be here for you!! Take special care of yourself and you will

be in my prayers.

Sandie

Des Moines, IA

July 16, 2002

Sandie,

I didn't know you had 3 boys! Wow. That is a full time job alone. You are

simply an amazing person! I have a boy and a girl (the boy is my soon to be

step son) and I am tired! I can't imagine 3!! School, homework, meals,

doctors, dentists, laundry, cleaning, emotional support and the list as you

know is endless, and to lose your mom and now caring for your father - Wow -

that is a lot, and that is why I say you are amazing! Working, my home, my

children, my fiancé, helping out with my MIL, and caring for my father is

certainly a balancing act. Sometimes, as I am sure you know, it is

overwhelming. Your posting made me look at what I have and I feel very

thankful for all it.

Hang in there and take care!

> Re: Death and Dying

>

> Mariea

> I wish I could give you a hug and take some of your pain away. I felt

> and still feel a lot of what you have mentioned. When the decision was

> made to put my dad into a nh there was so much going on. I had taken

> care of him for 3-4 yrs before he went to the nh. At one point I had

> a nurse, and a home health aid that came into his apartment 2 or 3 times

> a week. The nurse called me shortly after I had left and told me dad

> was indicating he would harm himself. It was her job and duty to make

> sure he was safe. We ended up taking him to an adult psychiatric

> hospital where he was admitted. When he was discharged, he was never

> the same. From there he went into a nh and is now living in a different

> nh. It's so hard to explain...he still walks, but with stiffness and a

> gait. He can still eat yet chokes often. I think this disease has

> really affected his mind and thinking. I know he knows me as he smiles

> when he sees me, then cries the rest of the visit unless I do something

> crazy to make him laugh. He sets around a lot, seeming to not have any

> will power to do anything. The guilt and sadness I feel, still, is

> overwhelming, however with prayer I have found strength to face every

> day. Also, I went to my doctor and explained life to him. I have been

> taking 50 mg. of Zoloft daily for 1 or 2 yrs. So much more is going on

> that often life seems unbearable yet I chose to look at the positives

> and gifts I am given. I am thankful I am able to view life from above

> ground. I am thankful I have 3 healthy, wonderful boys. There are

> times when I could drown myself in sorrows, and after my small pitty

> party I stand up again to face the next moment. I have given support to

> other people when they have lost a parent...didn't like losing my mom

> when I was 19 and she was 47 but there is a reason for everything. I

> truly hate that my dad has this disease yet have been able to give

> support to other people because of it. You will make it through this

> with your mom...the guilt, depression, and sadness. Give yourself a

> little time to process what is happening. Please keep talking about

> what is happening to you and what you are feeling. There is no better

> reason to be on earth than to listen to and be there for other people

> and I will be here for you!! Take special care of yourself and you will

> be in my prayers.

> Sandie

> Des Moines, IA

>

August 31, 2002

Andy

Thank you!! You have reminded me that as long as there is life, there

is hope. You are so very right in saying that our LO will some day be

gone...I feel that my dad left me so long ago yet I am still caring for

him. You have shed a light on the side of life that we must keep on

going on! Your words are an inspiration! I am sure you are an

inspiration to those around you...will look forward to more posts from

you.

Sandie

Des Moines, IA

August 31, 2002

>

>I think if my mother, who is turning 89 this month and has all her

>mental abilities, were to need nursing care...well I might

>want to put her in a nursing home but she would never let me.

Imelda, Your above statement brought to mind my Grandmother...she

resisted the idea of going into a nursing home (this is probably 20

years ago) until it the choice was taken out of her hands, she went

out while my aunt was at work to pick blackberries and fell, had to

lay there for over 4 hours. It was not longer safe to leave her by

herself. She was eventually put into the nursing home that I worked

at (after she died). I mentioned it before, a non-profit, well run

place that is still one of the best in the area.

My grandmother fought this move but lost, about a month after she was

placed there was family reunion and Grandma was brought back to my

aunts home for the day...within an hour she started demanding that

they take her home (the nursing home). She had found a whole new

world, people her age who had time to talk to her and a day filled

with activities. All of us have pictures that she painted at the

nursing home when she took a painting class...they arn't Grandma

Moses, but we would not part with them for anything. The last few

years of her life she could not recognize anyone and was total

care...and she was taken care of lovenly. One thing I will point out

here is that someone from the family stopped by to see her daily, at

differant times of the day.

All we ever hear is the negative side of nursing homes...but as you

point out there is good. It won't always be the way we would take

care of our loved ones but we care for them one on one, they can't.

God Bless you and yours, Barb

September 1, 2002

Thank you Andy, and God bless you too, Shirley(daughter of an Lbd Mom)

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: Re: Death and Dying

>Date: Sat, 31 Aug 2002 17:20:29 -0000

>

>Hi,

>

>Speaking from the patint side, not of LBD but a severe form of

>muscular dystrophy, it is often harder on the family then it is for

>the one who has to cope. I normally council other disabled people

>to try and keep thier care as seperate from the family as possible.

>If you don't the line that defines the relactionship becomes blured.

>Often there are many emotions to handle even if they are not the

>caregiver. Of course the most obvious the pain of watching someone

>you love suffer, there guilt. Guilt because you can't make them

>better or that you have your health and they don't. The stress from

>having to deal with medical, legal, financial and care can wear even

>the best of us.

>

>On the nursing home end you need to do your homework pay unscheduled

>visits. The good news is that the government treats long term care

>that specialize in Alzheimer's better, funding is faster and more.

>Because of that the level of care is much better. Look for an

>Alzheimer's unit they would mostly likely take an LBD patient.

>

>Take care of your self, do what you can and know your limits.

>Disease like this are terrible, there will come a time when you

>realize the person you and love is no longer there, even if thier

>body is. And although these diseases are horrible to watch, the

>patient has the benefit of not really being aware of thier illness

>since short term memery is one of he 1st thing to go.

>

>Hang in there all and don't beat yourselves up. You didn't give

>them the disease. A day is coming where there will be no more pain

>and sorrow, until then perservere for you are not alone!

>

>May God strengthen and bless you,

>

>Andy

>

> > I guess it is all about how you look at it.......I feel that when

>it comes

> > to Death and Dying, it is a very personal thing that differs from

>person to

> > person.

> >

> > I am glad we are having this discussion on nursing homes. I think

>it is

> > much harder, for reasons I cannot identify, for a child to think

>of putting

> > their parent in a nursing home than for a spouse. Perhaps because

>children

> > know they are expected to have their own life and have their own

>primary

> > responsabilities: spouse, children, home. While if you are the

>spouse, you

> > made a promise " in sickness and in health " and probably when you

>made it,

> > you really meant it.

> > Need I say that there are pros and cons to nursing homes? We know

>all the

> > bad stuff, sins of commission as well as omission (like not

>helping people

> > toilet themselves). But there is all the good stuff, a lot of

>which we

> > cannot give at home: the different kinds of mental stimulation,

>sometimes

> > activities or P.T. , the more constant medical care, even though

>we focus

> > on the mistakes.

> > Eve, you sound like you had parents who gave a lot of love and

> > understanding to you. I think if my mother, who is turning 89 this

>month

> > and has all her mental abilities, were to need nursing

>care...well I might

> > want to put her in a nursing home but she would never let me.

>Sometimes I

> > think I am more her servant, one she can critisize without any

> > consideration. Yes, she too, raised me with her kind of fierce

>love and

> > care, and raised us all well. But she is a very difficult person

>and she

> > wears me down. I dread the time when she will need full time care.

>Luckily

> > I have four sisters, three of whom would be able to pitch in. On

>the other

> > hand, my father was so gentle and giving that giving back to him

>for the

> > year of his dying was more like a gift to all of us. And, of

>course I feel

> > guilty that I distinguish between the two.

> > I know there will come a time when Wil will need more care than

>I,even with

> > help, can give. I just hope I can postpone that moment as long as

>possible.

> > Imelda

> >

> > To learn more about Lewy Body Disase, please visit the Lewy Body

>Disease

> > Association site at: http://www.lewybodydisease.org

>

_________________________________________________________________

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September 3, 2002

Andy,

Your words are full of a wisdom so many of us will appreciate. Thank you

for this as it really does help. I wish you the best and will keep you in

my prayers!

Re: Death and Dying

Hi,

Speaking from the patint side, not of LBD but a severe form of

muscular dystrophy, it is often harder on the family then it is for

the one who has to cope. I normally council other disabled people

to try and keep thier care as seperate from the family as possible.

If you don't the line that defines the relactionship becomes blured.

Often there are many emotions to handle even if they are not the

caregiver. Of course the most obvious the pain of watching someone

you love suffer, there guilt. Guilt because you can't make them

better or that you have your health and they don't. The stress from

having to deal with medical, legal, financial and care can wear even

the best of us.

On the nursing home end you need to do your homework pay unscheduled

visits. The good news is that the government treats long term care

that specialize in Alzheimer's better, funding is faster and more.

Because of that the level of care is much better. Look for an

Alzheimer's unit they would mostly likely take an LBD patient.

Take care of your self, do what you can and know your limits.

Disease like this are terrible, there will come a time when you

realize the person you and love is no longer there, even if thier

body is. And although these diseases are horrible to watch, the

patient has the benefit of not really being aware of thier illness

since short term memery is one of he 1st thing to go.

Hang in there all and don't beat yourselves up. You didn't give

them the disease. A day is coming where there will be no more pain

and sorrow, until then perservere for you are not alone!

May God strengthen and bless you,

Andy

> I guess it is all about how you look at it.......I feel that when

it comes

> to Death and Dying, it is a very personal thing that differs from

person to

> person.

>

> I am glad we are having this discussion on nursing homes. I think

it is

> much harder, for reasons I cannot identify, for a child to think

of putting

> their parent in a nursing home than for a spouse. Perhaps because

children

> know they are expected to have their own life and have their own

primary

> responsabilities: spouse, children, home. While if you are the

spouse, you

> made a promise " in sickness and in health " and probably when you

made it,

> you really meant it.

> Need I say that there are pros and cons to nursing homes? We know

all the

> bad stuff, sins of commission as well as omission (like not

helping people

> toilet themselves). But there is all the good stuff, a lot of

which we

> cannot give at home: the different kinds of mental stimulation,

sometimes

> activities or P.T. , the more constant medical care, even though

we focus

> on the mistakes.

> Eve, you sound like you had parents who gave a lot of love and

> understanding to you. I think if my mother, who is turning 89 this

month

> and has all her mental abilities, were to need nursing

care...well I might

> want to put her in a nursing home but she would never let me.

Sometimes I

> think I am more her servant, one she can critisize without any

> consideration. Yes, she too, raised me with her kind of fierce

love and

> care, and raised us all well. But she is a very difficult person

and she

> wears me down. I dread the time when she will need full time care.

Luckily

> I have four sisters, three of whom would be able to pitch in. On

the other

> hand, my father was so gentle and giving that giving back to him

for the

> year of his dying was more like a gift to all of us. And, of

course I feel

> guilty that I distinguish between the two.

> I know there will come a time when Wil will need more care than

I,even with

> help, can give. I just hope I can postpone that moment as long as

possible.

> Imelda

>

> To learn more about Lewy Body Disase, please visit the Lewy Body

Disease

> Association site at: http://www.lewybodydisease.org

September 3, 2002

Thank you for pointing out the good in the nursing homes. You are right

that all to often we think of the " bad " commonly associated with nursing

homes. It is nice to see there is good in them too.

Thank Barb. Take care,