DNR's/Dying in nursing homes/ don't read if not ready.

[Guest guest]

A sad story follows, so don't read any further if your not up to

it....I'll even put it in a diffrent post/story....My mother...(all my

grown life) would talk about HER fathers life and death...saying that

all the old timey DRs said that pneumonia was " the old mans best

friend " . I guess to them that's the body's way of dying when all else

failed. Her father died in the nursing home that way....he was in very

bad shape from cardiac problems.

Last January my father passed because of infection that only I and a 2

NH nurses knew he had. I told them NOT to call the DRs in, not to send

him to the hospital, not to give him antibiotics. He didn't want to be

treated. I was with him when he passed and sat there and said to

myself.... " he's dying " , it was obvious; he had a heart attack because

his body was becoming dehydrated, his blood proteins were too low and

his Bpressure was up. The infections just weakened the system. I knew

it wouldn't be much longer after I got him in there, two weeks to the

day almost...it surprised the Drs. I had him in the NH " hospice "

room....while I was out of town for three days, they moved him into a

private room...oh yes, they called me to " ask " permission but would

have done it regardless. I hated that because any movement pained him

greatly. I got back and one of the nurses told me the CDIFF was coming

back. This is a terrible infection of the large colon that is a cycle

of antibiotics, diarrehia, antibotics, diarrehia on and on. The drugs

feed the cycle but without them it never stops. If any of you have

ever experienced it....it's just awful for someone like my father to

deal with the embarrassment. It hurts, it's constant, it's

lifethreatning. Not many people know about it...it can be contagious

but only to those who have weakened immune systems.

I write about it here because it affects the elderly in those final

years....the immune system needs to digestive system to be working.

Antibiotics kill the good flora, if the bad grows back quicker then

the patient may be doomed as my father was. It's sad....because it CAN

BE TREATED better!!! With the use of probiotics and the right foods,

C-diff can be treated....I only found out through Interent research

what to do....and it was too late. So between the pain and the

infection brought on by surgeries....he felt he would never become

well...thus the DNR. He put off his own health because he loved his

wife and wanted to take care of her and when his body gave out it was

heartbreaking....the mind was fine...the body started caving in.

My stepmother never knew...by the time all this happened in three

short months, her LEWYS had progressed to the point of no memory

except the " here and now " and we could not tell her anything...we

didn't want her to even think about him and we don't even say his name

or refer to him. They loved each other so much.

She also has a strict DNR...comfort meds only. That is why I didn't

want the REQUIP or anything to help her in this end stage. Why would I

want her to start remembering what has happened and how would I tell

her that her husband passed while she was zoned out. Of course I

really don't think it would have helped that much...but that DR sure

had high hopes.

I believe in letting someone go... but it's so hard and so torturous

to deal with. I thank goodness I knew what my father and stepmother

wanted so I could live with it. I guess that's the best thing a parent

can do for a child or a person can do for a caregiver. Thank you for

listening and I hope this frank talk hasn't upset everyone. LOVE and

much love to ALL. Sara

[Guest guest]

Sara,

my dad also had a DNR in place, but he himself voided it when he had the

pulmonary embolyis, and i couldnt make the DNR stand when dad was laying htere

in front of me, begging to be hleped, i explained teh ventilator to him and

told him he wouldnt be able to talk while it was in but if he wanted it he could

have it, he said yes, but lbd took him less than 45 days later. but much more

peacelfully, his bp just started dropping and didnt come back up, his pain was

not bothering him as i had him on 2 7.5 mg lortab/lorcet. he basically just

went to sleep. i still support a DNR and have one on me as well. i rather make

that decision that make someone else make that decision too. i am glad you

shared your story hugs, sharon m

---- Sara wrote:

A sad story follows, so don't read any further if your not up to

it....I'll even put it in a diffrent post/story....My mother...(all my

grown life) would talk about HER fathers life and death...saying that

all the old timey DRs said that pneumonia was " the old mans best

friend " . I guess to them that's the body's way of dying when all else

failed. Her father died in the nursing home that way....he was in very

bad shape from cardiac problems.

Last January my father passed because of infection that only I and a 2

NH nurses knew he had. I told them NOT to call the DRs in, not to send

him to the hospital, not to give him antibiotics. He didn't want to be

treated. I was with him when he passed and sat there and said to

myself.... " he's dying " , it was obvious; he had a heart attack because

his body was becoming dehydrated, his blood proteins were too low and

his Bpressure was up. The infections just weakened the system. I knew

it wouldn't be much longer after I got him in there, two weeks to the

day almost...it surprised the Drs. I had him in the NH " hospice "

room....while I was out of town for three days, they moved him into a

private room...oh yes, they called me to " ask " permission but would

have done it regardless. I hated that because any movement pained him

greatly. I got back and one of the nurses told me the CDIFF was coming

back. This is a terrible infection of the large colon that is a cycle

of antibiotics, diarrehia, antibotics, diarrehia on and on. The drugs

feed the cycle but without them it never stops. If any of you have

ever experienced it....it's just awful for someone like my father to

deal with the embarrassment. It hurts, it's constant, it's

lifethreatning. Not many people know about it...it can be contagious

but only to those who have weakened immune systems.

I write about it here because it affects the elderly in those final

years....the immune system needs to digestive system to be working.

Antibiotics kill the good flora, if the bad grows back quicker then

the patient may be doomed as my father was. It's sad....because it CAN

BE TREATED better!!! With the use of probiotics and the right foods,

C-diff can be treated....I only found out through Interent research

what to do....and it was too late. So between the pain and the

infection brought on by surgeries....he felt he would never become

well...thus the DNR. He put off his own health because he loved his

wife and wanted to take care of her and when his body gave out it was

heartbreaking....the mind was fine...the body started caving in.

My stepmother never knew...by the time all this happened in three

short months, her LEWYS had progressed to the point of no memory

except the " here and now " and we could not tell her anything...we

didn't want her to even think about him and we don't even say his name

or refer to him. They loved each other so much.

She also has a strict DNR...comfort meds only. That is why I didn't

want the REQUIP or anything to help her in this end stage. Why would I

want her to start remembering what has happened and how would I tell

her that her husband passed while she was zoned out. Of course I

really don't think it would have helped that much...but that DR sure

had high hopes.

I believe in letting someone go... but it's so hard and so torturous

to deal with. I thank goodness I knew what my father and stepmother

wanted so I could live with it. I guess that's the best thing a parent

can do for a child or a person can do for a caregiver. Thank you for

listening and I hope this frank talk hasn't upset everyone. LOVE and

much love to ALL. Sara

--

Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall

7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration

pneumonia and uti 8/05, died of blood pressure drop on 9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

[Guest guest]

Sara: My last job before I quite to take care of

hubby was with a law firm. When I went in later to

get the DPOA, etc., done, one of the partners told me

that his mother was a nurse. Years ago, when people

had dementia, and probably true for other illnesses,

the families would place them in front of an open

window (I suppose in the winter) to make them get

pneumonia so they wouldn't make it. Sounds awfully

cruel, but if we remember, at that time there was

nothing to help them. Not trying to excuse it or

support it; just for information.

> ---- Sara wrote:

> A sad story follows, so don't read any further if

> your not up to

> it....I'll even put it in a diffrent

> post/story....My mother...(all my

> grown life) would talk about HER fathers life and

> death...saying that

> all the old timey DRs said that pneumonia was " the

> old mans best

> friend " . I guess to them that's the body's way of

> dying when all else

> failed. Her father died in the nursing home that

> way....he was in very

> bad shape from cardiac problems.

>

> Last January my father passed because of infection

> that only I and a 2

> NH nurses knew he had. I told them NOT to call the

> DRs in, not to send

> him to the hospital, not to give him antibiotics. He

> didn't want to be

> treated. I was with him when he passed and sat there

> and said to

> myself.... " he's dying " , it was obvious; he had a

> heart attack because

> his body was becoming dehydrated, his blood proteins

> were too low and

> his Bpressure was up. The infections just weakened

> the system. I knew

> it wouldn't be much longer after I got him in there,

> two weeks to the

> day almost...it surprised the Drs. I had him in the

> NH " hospice "

> room....while I was out of town for three days, they

> moved him into a

> private room...oh yes, they called me to " ask "

> permission but would

> have done it regardless. I hated that because any

> movement pained him

> greatly. I got back and one of the nurses told me

> the CDIFF was coming

> back. This is a terrible infection of the large

> colon that is a cycle

> of antibiotics, diarrehia, antibotics, diarrehia on

> and on. The drugs

> feed the cycle but without them it never stops. If

> any of you have

> ever experienced it....it's just awful for someone

> like my father to

> deal with the embarrassment. It hurts, it's

> constant, it's

> lifethreatning. Not many people know about it...it

> can be contagious

> but only to those who have weakened immune systems.

>

> I write about it here because it affects the elderly

> in those final

> years....the immune system needs to digestive system

> to be working.

> Antibiotics kill the good flora, if the bad grows

> back quicker then

> the patient may be doomed as my father was. It's

> sad....because it CAN

> BE TREATED better!!! With the use of probiotics and

> the right foods,

> C-diff can be treated....I only found out through

> Interent research

> what to do....and it was too late. So between the

> pain and the

> infection brought on by surgeries....he felt he

> would never become

> well...thus the DNR. He put off his own health

> because he loved his

> wife and wanted to take care of her and when his

> body gave out it was

> heartbreaking....the mind was fine...the body

> started caving in.

>

> My stepmother never knew...by the time all this

> happened in three

> short months, her LEWYS had progressed to the point

> of no memory

> except the " here and now " and we could not tell her

> anything...we

> didn't want her to even think about him and we don't

> even say his name

> or refer to him. They loved each other so much.

>

> She also has a strict DNR...comfort meds only. That

> is why I didn't

> want the REQUIP or anything to help her in this end

> stage. Why would I

> want her to start remembering what has happened and

> how would I tell

> her that her husband passed while she was zoned out.

> Of course I

> really don't think it would have helped that

> much...but that DR sure

> had high hopes.

>

> I believe in letting someone go... but it's so hard

> and so torturous

> to deal with. I thank goodness I knew what my father

> and stepmother

> wanted so I could live with it. I guess that's the

> best thing a parent

> can do for a child or a person can do for a

> caregiver. Thank you for

> listening and I hope this frank talk hasn't upset

> everyone. LOVE and

> much love to ALL. Sara

>

>

>

>

>

>

>

> --

> Daugher of Leonard, diag May 2004, had lbd since

> 1993, had hip surgery from fall 7/05, aspiration

> pneumonia 7/05 with pulmonary embolyis, had

> aspiration pneumonia and uti 8/05, died of blood

> pressure drop on 9/25/05,

> may he rest in peace with his mom and dad,

> a smile a day keeps the meanies away

>

>

__________________________________________________

[Guest guest]

Without looking things back up, I am guessing that it was 10 years ago, mom and

I were at the death bed in the nursing home of my Great Aunt. Mom had lived

with the Aunt through highschool, and had been close as a grandmother to me.

It was undiagnosed, but my great Aunt had symptoms of LBD: Slow parkinson's

gate, falls, halucinations, moderate dementia. She eventually lost use of her

legs, and was had to live with those saturated adult diapers in the nursing

home. There was no post mortem exam, but I would guess that she probably passed

as a result of a series of urinary infections, kidney failure.

Mom's health started failing only a couple years after the Aunt's passing.

Mom had periods that weren't much fun. As the disease progressed she got the

horrible weepies and cried... some times verbally, she cried over and over..

" I just wanted to die " . I did my best to work through her weepies and get her

mind working on a different level. Sometimes it was setting a goal like "

Suzy is coming to visit " We have to get ready. " Some of the worst periods

were several years after the PD diagnosis, but before the Lewy diagnosis.

However, with the diagnosis of LBD, we got some different medicine that

helped. The aricept got her mind working better, in her words " my mind is

clicking better today " . When we got her off the siniment, the halucinations

were not that big of a problem.

She had some very good months, and was able to get out and go some, and even

enjoy shopping in the grocery store. During this last period, she attended

plays and concerts for grandkids, and started enjoying some TV again.

To say it mildly, every day with LBD wasn't roses, but mom passed at home, on

her own terms. Mom had a tough, long night, but we made the morning. The

county nurse was making her routine call about 9 AM that morning, and mom

passed about an hour before the nurse's scheduled visit. I think her heart

quit.

In hindsite, I don't think that there was anything, that an emergency room

could have done: especially in reference to mom's DNR. Regardless of the

DNR, I still don't think of making a flying trip to the hospital would have

made any difference.

I didn't know that we had reached the last stages until about 15 minutes

before she passed. None of us were ready to let her go, and hoped that we would

have some more good days. When my time comes, if I can pass with as much

dignity, that would be great.

With my 20/20 hindsight, I am most angry about the PD meds that rather than

help, may have accelerated mom's decline.

Dann

[Guest guest]

Dann, it is hard looking back about meds and what they do and don't

do. I just wish that the dang DRs learned and observed as much as we

do and when they DON'T listen to us.....grrr.

I'm glad the aricept helped...it's so much nicer to know your mom had

good times too.

June, thanks for that part of the old timers story...I knew there was

something else but couldn't remember what. How different attitudes

were before drugs....I wonder how much lack of Hope and positive

thinking played into that. Sara

[Guest guest]

I have no doubt that the meds taht my husband was

given when he was in the rehab hospital for a broken

shoulder and a psychiatrist was called in. He

proceeded to put him on several different

neuroleptics, and that with oxycontin, was the first

time he ever was " out of it completely. " From then

on, he went downhill, and another week's stay in an

acute care clinic caused a further decline because of

getting more meds. Then, the NH and its doctor are

determined that he has all the meds that are not good

for him and will not pay any attention to what I say.

I really wonder what would have happened if no meds

had ever been given. I don't think it could have been

much worse than it is now.

--- Dann wrote:

> Without looking things back up, I am guessing that

> it was 10 years ago, mom and I were at the death

> bed in the nursing home of my Great Aunt. Mom had

> lived with the Aunt through highschool, and had been

> close as a grandmother to me.

>

> It was undiagnosed, but my great Aunt had

> symptoms of LBD: Slow parkinson's gate, falls,

> halucinations, moderate dementia. She eventually

> lost use of her legs, and was had to live with

> those saturated adult diapers in the nursing home.

> There was no post mortem exam, but I would guess

> that she probably passed as a result of a series of

> urinary infections, kidney failure.

>

> Mom's health started failing only a couple years

> after the Aunt's passing.

>

> Mom had periods that weren't much fun. As the

> disease progressed she got the horrible weepies and

> cried... some times verbally, she cried over and

> over.. " I just wanted to die " . I did my best to

> work through her weepies and get her mind working

> on a different level. Sometimes it was setting a

> goal like " Suzy is coming to visit " We have to

> get ready. " Some of the worst periods were several

> years after the PD diagnosis, but before the Lewy

> diagnosis.

>

> However, with the diagnosis of LBD, we got some

> different medicine that helped. The aricept got her

> mind working better, in her words " my mind is

> clicking better today " . When we got her off the

> siniment, the halucinations were not that big of a

> problem.

>

> She had some very good months, and was able to get

> out and go some, and even enjoy shopping in the

> grocery store. During this last period, she

> attended plays and concerts for grandkids, and

> started enjoying some TV again.

>

> To say it mildly, every day with LBD wasn't roses,

> but mom passed at home, on her own terms. Mom had a

> tough, long night, but we made the morning. The

> county nurse was making her routine call about 9 AM

> that morning, and mom passed about an hour before

> the nurse's scheduled visit. I think her heart

> quit.

>

> In hindsite, I don't think that there was

> anything, that an emergency room could have done:

> especially in reference to mom's DNR. Regardless

> of the DNR, I still don't think of making a flying

> trip to the hospital would have made any difference.

>

>

> I didn't know that we had reached the last stages

> until about 15 minutes before she passed. None of us

> were ready to let her go, and hoped that we would

> have some more good days. When my time comes, if I

> can pass with as much dignity, that would be great.

>

> With my 20/20 hindsight, I am most angry about the

> PD meds that rather than help, may have accelerated

> mom's decline.

>

> Dann

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Dann,

I can really relate. Mom death was unexpected also. She had been having a few

more problems at the nh, but I was unprepared when we got a call from the nh

that Mom had a " spell " and maybe we should take her to the hospital. I didn't

know what a spell was, but even when I got to the hospital and started to chew

out the nurses and they kindly took me aside and said Mom was dying, it totally

took me by surprise. I thought we were in the hospice part of the hospital

because Mom was on hospice.

She died 7 days later and the MD couldn't figure out why she was lasting so

long. They expected it before then.

So I guess we are never " ready " with this disease.

Hugs,

Donna R

Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in

a nh.

She was almost 89 when she died in '02. No dx other than mine.

Re: DNR's/Dying in nursing homes/ don't read if not

ready.

Without looking things back up, I am guessing that it was 10 years ago, mom and

I were at the death bed in the nursing home of my Great Aunt. Mom had lived

with the Aunt through highschool, and had been close as a grandmother to me.

It was undiagnosed, but my great Aunt had symptoms of LBD: Slow parkinson's

gate, falls, halucinations, moderate dementia. She eventually lost use of her

legs, and was had to live with those saturated adult diapers in the nursing

home. There was no post mortem exam, but I would guess that she probably passed

as a result of a series of urinary infections, kidney failure.

Mom's health started failing only a couple years after the Aunt's passing.

Mom had periods that weren't much fun. As the disease progressed she got the

horrible weepies and cried... some times verbally, she cried over and over..

" I just wanted to die " . I did my best to work through her weepies and get her

mind working on a different level. Sometimes it was setting a goal like "

Suzy is coming to visit " We have to get ready. " Some of the worst periods

were several years after the PD diagnosis, but before the Lewy diagnosis.

However, with the diagnosis of LBD, we got some different medicine that

helped. The aricept got her mind working better, in her words " my mind is

clicking better today " . When we got her off the siniment, the halucinations

were not that big of a problem.

She had some very good months, and was able to get out and go some, and even

enjoy shopping in the grocery store. During this last period, she attended

plays and concerts for grandkids, and started enjoying some TV again.

To say it mildly, every day with LBD wasn't roses, but mom passed at home, on

her own terms. Mom had a tough, long night, but we made the morning. The

county nurse was making her routine call about 9 AM that morning, and mom

passed about an hour before the nurse's scheduled visit. I think her heart

quit.

In hindsite, I don't think that there was anything, that an emergency room

could have done: especially in reference to mom's DNR. Regardless of the

DNR, I still don't think of making a flying trip to the hospital would have

made any difference.

I didn't know that we had reached the last stages until about 15 minutes

before she passed. None of us were ready to let her go, and hoped that we would

have some more good days. When my time comes, if I can pass with as much

dignity, that would be great.

With my 20/20 hindsight, I am most angry about the PD meds that rather than

help, may have accelerated mom's decline.

Dann