Re: What if we do nothing?

[Guest guest]

Carol,

There is no such thing as doing nothing! The MD gave my Mom a choice when some

help I hired to stay with her part time, took her to the emergency room. He

said she could either go into the nh or live with me. She opted to live with

me.

There wasn't any living alone as she had almost blown herself up with the gas

stove, we think! That came after she had refused to live with me one month

earlier.

And Hospice has nothing to do with it. They don't come until eating,talking,

walking is a problem and that took Mom 3 (or more) years after she came to live

with me.

While they are driving around town because they just has to run to the store for

something, or when they are at the neighbors or calling the police because of

the neighbors bad habit of driving into their own drive way, but they believe it

is their driveway, or when they are found 3 states away because they got lost,

and you don't know how they got that far. Or when they are lost and out in the

cold and it is getting to be 24 hours, you will do something. There is no " do

nothing. " Someone will do something. Social Services will come in and put them

in a nh. Or the police will bring them to you dead or alive. You will " do

something. "

This isn't a scientific reason. This is what will happen. Someone will do

something. It just may not have gotten bad enough yet. Mom was 12 hours away

and she refused to work with me. Friends called and said I had to " do

something. " I didn't know what they meant. I had been talking to her on a

daily basis on the phone. I had her visiting for months at a time until she

insisted she was going home. And she stopped eating or leaving her bed until I

agreed to take her home.

And she was still ok enough that I didn't understand how bad it was. While with

me and I as doing all the work, she was pretty fine. But she couldn't live

alone.

I wish I had a better answer. I am the only living child left, so it was up to

me no matter what I did.

It was 4 years later before Hospice got involved. It is more like having a

small child tell you they are going on a long trip on the bus, if you like it or

not. You just can't let them do it. This is just harder to recognize they

can't think very well.

Hope this offers some insight.

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: What if we do nothing?

I am not sleeping and am very aggravated at my husband and his brothers for not

reading and researching like I have. I am the one who cleaned out Amazon and

Lewy Body Journal for info, and continue to, learn and read all that I can about

same.

Meanwhile, they are all enjoying normal lives, sleeping well, and stressing

not over all that is to come.

I cant even find the hours to finish The 36 Hour Day, and they are happy as

clams to know as little as they can. All they know is what I have left in the

bathroom, or shoved in their empty hands. I dont get it.

So, lets play devils advocate. What is the difference in the quality of life

for the patient if there is no medical intervention for the dementia?

I see people who cant get a diagnosis, doctors who dont know squat about Lewy

Body, nursing home employees that look at me like I am the one with dementia

when I mention Lewy Body, and family with butts in the air and heads in the

sand.

If Martha Washington, or Lincoln had had LBD, how were their final days

different from our modern LBD patients with lets say the best doctors and best

meds and care?

I can see much of what we are doing helps the caregivers quality of life, but

at what point is Hospice the right choice with all efforts toward anything but

comfort being the objective?

For the family that has no access to all that we have, that has to face this

all with no medical intervention, what are they most missing?

If I were sleeping right now, I know that I wouldnt be asking, but I guess I

need to know the other side of the coin. If I die caregiving, will they see I

gained anything for the LO?

I seem to be the only one losing any sleep, and the one that can probably

least afford to be sleep deprived as I spend the most time with the patient.

If there are those out there that are at the mercy of an uninformed nursing

facility, what are they not getting in the final analysis?

I am not trying to minimize what we are all doing, but I need a rebuttal, if

one of them says, nobody asked you to get so involved!

My whole personality roars caregiver, and I might be way over the top, but

tell me again that we are providing the best options for our LO, even if she is

my M-I-L!

When do I wave the white flag and scream, Hospice!

I guess I would like to have a scientific answer here, as I know I cant and

wont let down on my M-I-L. I just want to know at the end of the line, M-I-L

was not prolonged for my benefit as the caregiver.

She has a living will. If everyone else goes minimalist all of the sudden, I

will not have a voice or a choice. Can I live with that, and what is it I will

have to live with?

[Guest guest]

Carol,

Donna is exactly on point. The doctors don't really have a choice. The State /

Public Health would eat them alive.

When my mom's 2nd bad fall resulted in a hip replacement, the doctor (s) pushed

heavily for the NH, and certainly wouldn't release her if we had not been able

to provide in-home 24 /7 care. We had been having the in-home health aides

and the county nurse visit our home once weekly prior to that hip replacement.

The in-home visits got upped to 2 + visits per week by both the aide and the

county nurse following mom's return home.

I still blame the meds.. that mom received during and immediately after the

hip replacement with a sharp loss of cognitive abilities. Mom went into the

ER hurting, but much sharper mentally than she came home. We figured if mom

spent the recommended month in the recovery / adaptive care / (NH like

division) of the hospital, that mom would have lost so much that we could

never get her home again.

Dann

Donna Mido wrote: Carol,

There is no such thing as doing nothing! The MD gave my Mom a choice when some

help I hired to stay with her part time, took her to the emergency room. He

said she could either go into the nh or live with me. She opted to live with

me.

There wasn't any living alone as she had almost blown herself up with the gas

stove, we think! That came after she had refused to live with me one month

earlier.

And Hospice has nothing to do with it. They don't come until eating,talking,

walking is a problem and that took Mom 3 (or more) years after she came to live

with me.

While they are driving around town because they just has to run to the store

for something, or when they are at the neighbors or calling the police because

of the neighbors bad habit of driving into their own drive way, but they believe

it is their driveway, or when they are found 3 states away because they got

lost, and you don't know how they got that far. Or when they are lost and out

in the cold and it is getting to be 24 hours, you will do something. There is

no " do nothing. " Someone will do something. Social Services will come in and

put them in a nh. Or the police will bring them to you dead or alive. You will

" do something. "

This isn't a scientific reason. This is what will happen. Someone will do

something. It just may not have gotten bad enough yet. Mom was 12 hours away

and she refused to work with me. Friends called and said I had to " do

something. " I didn't know what they meant. I had been talking to her on a

daily basis on the phone. I had her visiting for months at a time until she

insisted she was going home. And she stopped eating or leaving her bed until I

agreed to take her home.

And she was still ok enough that I didn't understand how bad it was. While

with me and I as doing all the work, she was pretty fine. But she couldn't live

alone.

I wish I had a better answer. I am the only living child left, so it was up to

me no matter what I did.

It was 4 years later before Hospice got involved. It is more like having a

small child tell you they are going on a long trip on the bus, if you like it or

not. You just can't let them do it. This is just harder to recognize they

can't think very well.

Hope this offers some insight.

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: What if we do nothing?

I am not sleeping and am very aggravated at my husband and his brothers for not

reading and researching like I have. I am the one who cleaned out Amazon and

Lewy Body Journal for info, and continue to, learn and read all that I can about

same.

Meanwhile, they are all enjoying normal lives, sleeping well, and stressing

not over all that is to come.

I cant even find the hours to finish The 36 Hour Day, and they are happy as

clams to know as little as they can. All they know is what I have left in the

bathroom, or shoved in their empty hands. I dont get it.

So, lets play devils advocate. What is the difference in the quality of life

for the patient if there is no medical intervention for the dementia?

I see people who cant get a diagnosis, doctors who dont know squat about Lewy

Body, nursing home employees that look at me like I am the one with dementia

when I mention Lewy Body, and family with butts in the air and heads in the

sand.

If Martha Washington, or Lincoln had had LBD, how were their final days

different from our modern LBD patients with lets say the best doctors and best

meds and care?

I can see much of what we are doing helps the caregivers quality of life, but

at what point is Hospice the right choice with all efforts toward anything but

comfort being the objective?

For the family that has no access to all that we have, that has to face this

all with no medical intervention, what are they most missing?

If I were sleeping right now, I know that I wouldnt be asking, but I guess I

need to know the other side of the coin. If I die caregiving, will they see I

gained anything for the LO?

I seem to be the only one losing any sleep, and the one that can probably

least afford to be sleep deprived as I spend the most time with the patient.

If there are those out there that are at the mercy of an uninformed nursing

facility, what are they not getting in the final analysis?

I am not trying to minimize what we are all doing, but I need a rebuttal, if

one of them says, nobody asked you to get so involved!

My whole personality roars caregiver, and I might be way over the top, but

tell me again that we are providing the best options for our LO, even if she is

my M-I-L!

When do I wave the white flag and scream, Hospice!

I guess I would like to have a scientific answer here, as I know I cant and

wont let down on my M-I-L. I just want to know at the end of the line, M-I-L

was not prolonged for my benefit as the caregiver.

She has a living will. If everyone else goes minimalist all of the sudden, I

will not have a voice or a choice. Can I live with that, and what is it I will

have to live with?

[Guest guest]

Hi Carol,

Take a deep breath and count to 10. I am in the same delima with medication

changes. What are we pumping into our loved ones? Is it really helping, or

making other things a problem. My mother is 85, incontinence is her nightmare

right now. It use to be the trembling in her hands. What is she wasn't on the

drugs with the incontinence side effects? Would her life be better? Would she

be more active, stengthening her bladder control? Who is to say what we are

doing is really the right thing. I have been wondering, but I have faith in a

higher power and that I will be told/shown what to do next.

Many hugs for all you do,

Deb

carol king wrote:

I am not sleeping and am very aggravated at my husband and his

brothers for not reading and researching like I have. I am the one who cleaned

out Amazon and Lewy Body Journal for info, and continue to, learn and read all

that I can about same.

Meanwhile, they are all enjoying normal lives, sleeping well, and stressing not

over all that is to come.

I can’t even find the hours to finish “The 36 Hour Day”, and they are happy as

clams to know as little as they can. All they know is what I have left in the

bathroom, or shoved in their empty hands. I don’t get it.

So, let’s play devil’s advocate. What is the difference in the quality of life

for the patient if there is no medical intervention for the dementia?

I see people who can’t get a diagnosis, doctors who don’t know squat about Lewy

Body, nursing home employees that look at me like I am the one with dementia

when I mention Lewy Body, and family with butts in the air and heads in the

sand.

If Martha Washington, or Lincoln had had LBD, how were their final days

different from our modern LBD patient’s with let’s say the best doctors and best

meds and care?

I can see much of what we are doing helps the caregiver’s quality of life, but

at what point is Hospice the right choice with all efforts toward anything but

comfort being the objective?

For the family that has no access to all that we have, that has to face this all

with no medical intervention, what are they most missing?

If I were sleeping right now, I know that I wouldn’t be asking, but I guess I

need to know the other side of the coin. If I die caregiving, will they see I

gained anything for the LO?

I seem to be the only one losing any sleep, and the one that can probably least

afford to be sleep deprived as I spend the most time with the patient.

If there are those out there that are at the mercy of an uninformed nursing

facility, what are they not getting in the final analysis?

I am not trying to minimize what we are all doing, but I need a rebuttal, if one

of them says, “nobody asked you to get so involved”!

My whole personality roars caregiver, and I might be way over the top, but tell

me again that we are providing the best options for our LO, even if she is my

M-I-L!

When do I wave the white flag and scream, “Hospice”!

I guess I would like to have a scientific answer here, as I know I can’t and

won’t let down on my M-I-L. I just want to know at the end of the line, M-I-L

was not prolonged for my benefit as the caregiver.

She has a living will. If everyone else goes minimalist all of the sudden, I

will not have a voice or a choice. Can I live with that, and what is it I will

have to live with?

---------------------------------

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[Guest guest]

You are right, of course, nothing is not an option. I do see some

fighting with husband's siblings about her care. They really don't

see why spending nights with her is any big deal, as long as I am the

one doing it.

It is what she does during the day that is the problem. Day care

would be great, but she can get so obstinate she would be impossible

to rally every morning so we could make it to work on time and in

some reasonable state of mental health.

I have offered my daughter-in-law what we would pay for a sitter if

she could come over the five hours each day we need covered. I would

just as soon pay her $20 an hour as to pay and agency that keeps

almost half for themselves.

We don't live in a neighborhood and therefore it is not likely she

would be a problem to neighbors, but neighbors aren't here to call us

either.

She still thinks she can do way more than she can, and that is what

would get us into trouble. If i could afford to take a year or two

off work, I would, but I also know I would turn to mush mentally.

Caring for my father for 5 weeks before he died caused major post-

traumatic stress syndrome for me. I couldn't remember one of my

dogs's names when i returned to my home, and I had no patience for

stupid adults at my school when I tried to go back to work. Within a

month I changed jobs and schools just to get back with 13 year olds,

whom you expect to act like children.

Millie's disease does hinder my job. I don't sleep well pondering

all the possibilites. Having to run home the minute the kids leave

school is not the way I like to do my job. Millie resents the

attention I give to my school stuff instead of to her in the evenings.

Millie would sleep all day if at home, and maybe that isn't so bad.

with her last violent episode, I also hesitate to ask my brand new

daughter-in-law to expose herself to this family craziness.

Depending where exactly the proteins seem to congregate, is how the

LO is effected. Although the mental capacity is so weak, as long as

Millie presents well walking and talking, we are forced to manage the

best we can.

It is what it is, and obviously we will fight the fight, without the

cooperation, or understanding of the men who are actually blood

relatives of the LO.

I keep reading the entries, and eventually, I am sure i will be some

support to others, right now, I am just working my way through the

weeds. I am guessing it seems to most like we really haven't even

gotten into the thick of the disease yet, but I am trying to do the

right things now in order to avoid some of the big problems some of

you are facing.

When school starts in four weeks, my merry-go-round will go warp

speed and i will have little time to contemplate this LBD dilemma.

Thanks for listening.

Carol