RE: Every body / A very long note. RE: Vera and Barb caregiving-Ann Pooles

[Guest guest]

These past few days it has been very difficult for me to write a response

to some of the notes so I will do it all at once.

The older ones on this list know of Ralph's diagnosis of PD after heart

by pass, done in '93 and a year of guessing. Between the heart

surgery and the diagnosis of PD, Ralph stepped off the edge of the driveway

and broke his lower leg. That was a real shock to his system but

he continued doing his work at the office and going to the fishing hole.

(DX'd with SDS/MSA in '95)

He was having great difficulty seeing so there were prisms put in his

lens. He was diagnosed with degeneration in his eyes. Cannot remember the

exact name. He was in wrecks so many times he began to pay for the

damage on his own, to keep it off his record. He was an insurance agent

so had to be able to drive and keep his job. The final straw was when he

wrecked my new "96 mini van at Christmas time of "96. He had already replaced

the front wheel twice because he kept hitting the curbs. He

was driving in the gutters and scared me to death several times, as I feared

I would be wrapped around a telephone pole, or worse. He went the very

next day and turned in his license to drive and my challenges really began

as his driver.

Our daughter and I were taking him to the neurologist here in

Arlington and he had so many tests. Dr finally referred him

to Dr. Dewey at TSWMC, in Dallas. He was examined and the Muscular

Dystrophy picked up all the expense of testing and treatment. They referred

all of their treatment and recommendations for medication to Dr.

and our family physician. Somewhere along in there we had to change

insurance coverage and physicians but we could keep our neurologists.

The dates for all of these surgeries slip my mind but, during his treatments

he had a cataract removed. He retired and the real struggle began.

He too had great spikes in his bp. During one of the bad ones the central

artery in the back of his left retina was blocked by a clot.

I suppose we were fortunate that it was not a stroke but it was just as

bad, because it caused blindness in that eye. They tried the laser treatments

but they were so painful they stopped and made plans to remove the eye

before it shrank into the socket.

(Yes, he was on all of the usual medications and bp medication.

This day he was up in the 200's +)

That was not to be.

He had a very serious and painful episode one night and wound up getting

his gall bladder removed. Had to stay longer than usual because he

was hallucinating and surgeon refused to send him home unless we had home

care. (This seems to be typical of SDS/MSA Takes longer to get rid

of it) He stayed a week and the home health began. We qualified for

a while but when he was able to get out of the house he no longer qualified,

so we paid out of pocket, and the kids, and friends and care giver,

shared my load up until he had to enter the nursing home.

That decision was necessary because he received a PEG tube in March

of 'oo. It broke loose on April 8th and he was in the hospital again

with the stomach draining into the abdominal cavity. Peritonitis. Very

severe.( This may have been caused by the falling and tugging to get up,

no one really knows) In fact when they took him in for surgery the

surgeon told me it might not be repairable. He was full of waste and liquid

formula.

They brought him out to a very long and very painful "recovery". He

had a nasal feeding tube and no food by mouth ever again. They had

told me hesitatingly, they would not touch him again for six months. And

recommended extended term care. (I think they knew then that they would

not have that opportunity) At that time they would check to see if the

stomach had healed enough for another PEG. He left the hospital on

May 1st. And was admitted to a special care nursing home.

During his time in the hospital he was pulling his tube out just about

every other day. Sometimes twice a day. The doctors told me he may

not have realized what he was doing. It was just bothering him. In fact,

Ralph never fessed up to doing it himself. Tho he always felt if he could

get it out he could eat. But that was not possible, he would strangle.

Also hallucinations do strange things to the mind and body.

There was one very strange thing about all of his surgeries. He could

speak plainly and distinctly while under sedation and pain medication.

His speech therapist told me it was probably the medication. Because when

he was not on it he was speechless and like a rag doll. They could toss

him all over the bed and he never complained.

He sang along with the musical video tapes I set up for him in his room.

Of course, his singing in the choir meant he knew every word to all the

Gaither music.

He had a catheter but kept pulling it out too. Finally messed one up

so bad it got a kink in it and a specialist was called in. He had worked

with SDS/MSA patients so he explained to us just what was going on. The

want to was there but the control for emptying bladder was gone. That meant

if we brought him home the girls and I would have to learn how to straight

cath. We learned by watching but never had to do it because he was sent

to special care nursing home. When the straight cath was done he fought

them every time. He was urinating but only getting the over flow out..

He was a wild man while there. Tried every way possible to get out.

They finally had to put an alarm on his bed and on his chair. He was calling

the police to get him out. That meant no phone in the room but he would

go to the nurses desk and use theirs when they were not at the desk.

Being called in the middle of the night was getting to be a habit for

me. But it was never easy. He begged me to bring him home. But there was

no way I could give him the care he needed. He was continuing to pull his

feeding tube out or else he was going over the foot of the bed beyond the

bars and falling to the floor still connected to the feeding apparatus.

How he managed to avoid getting broken bones I do not know.

Had to move him out of there when the therapists decided he was not

going to make progress in recovering. So off we went to another nursing

home. They soon learned they could not contend with the feeding tube removals.

I was meeting Ralph and the ambulance at the hospital ER on average of

three times a week. Sometimes two days in a row. Many long nights, because

I had to check him in and then follow the ambulance back to the nursing

home to see that he was okay.

Had to move him again to a place that could replace the tube.

But he continued to give them a hard time. He would disconnect it and get

out of bed on his good days. He was on continuous feeding because

he could not take anything by mouth.

He would wheel down to the lunch room and get sugar or a doughnut. They

caught him before damage was done. But I found dozens of packets of sugar

in his dresser drawer.

For a man who could not see, hear, speak plainly, nor walk alone he

gave everyone a merry chase.

Each time he was in hospital he had pneumonia which always set him back

a pace.

He was determined to come home and many times I left with both of us

in tears. There was just no other way.

Bill, if you are reading this, you know and remember the hours you and

I spent talking on IM trying to figure out the next move. I could not have

done without your encouragement and laugh times. Remember when we

tried to figure out the best way to unplug the commode? No easy way that

I found in all the tests I made. (Finally had to call my plumber

brother in law.)

The late night gabs when we were both so weary we were nuts?

Thanks old friend. I hope I was as useful to you in your time of need.

We do get wrapped up in our own sorrows at times and forget others are

hurting too.

The day before Ralph left, he was tooling all over the nursing home

in his wheel chair but fell that night when they were putting him to bed.

They called me the morning of July 27, 2000 and told me he was ill and

they were checking him for pneumonia, but not to worry, they would call.

I went out that afternoon, and they had been trying to reach me at home,

as I was on the road. The nurse met me in the hall, he was gone, just five

minutes before I got to his room. They were all around his bed trying to

figure out what had happened. He just slipped away as they cared for him.

I promised them there would be an autopsy so we would all know.

I had an earlier conversation with our family physician, in June.

He told me the sds/msa would not take his life. It would be a slow shutting

down of the systems and he would go via heart attack or pneumonia.

Autopsy showed terminal pneumonia, hypotensive heart disease, and sds/msa.

All of those things I felt were true, but I had to know.

It was a long hard battle for at least ten years but he fought like

a tiger to get things done when he could. He too would get angry with me

and tell me things that were not true. He saw little people in his room,

at times he never recognized me and spoke to me about me. That is what

hurt the most. Along with the anger. I reprimanded, as the counselor recommended

and some times just left the room. When I returned he had forgotten the

anger and wondered why I had left. Of course I was still mad and hurt.

But it goes away. You cannot keep all of the hurt, it will eat your heart

out.

But he never failed to tell me he loved me and I to him. He left love

notes on his dry marker board . That is the way he communicated with every

one. I also had notes over his bed for the nurses to know how to care for

him. We had fifty one years together, plus dating time.

About the family support some of you do not have. They are cheating

themselves because when it comes time to say good bye, it is too late to

apologize. I could not have managed without the family support, the

neighborhood support, his business associates and the church family. And

all of the friends on this list.

When we began this journey we were honest with everyone. They knew as

much as we did. The kids went with me to all appointments with doctors

and nurses and lawyers. There were no secrets. The little grand children

were aware of everything and they prayed with him that he would go to Heaven

before he got too bad to enjoy his time here.

They were sad to tell him good bye but they are glad I had explained

it all to them. They were more able to accept the changes that came and

to laugh with him when he was feeling good. They were good about visiting

the nursing home and pushing him all over the place when he felt like getting

up. They had seen the changes over the years and had helped here at the

house when he was at home. In fact, Cody, who is now eight, fed him through

the PEG tube at times.

This is a long epistle. I hope it has not bored you to tears. But I

can safely say, it is, and was a long hard trip but Ralph came out the

winner. He beat the odds and lived a good life. When it could have been

worse, the Lord took him home when He was ready. Now he is well forever.

I did not realize I was so tired until after wards. I slept when ever

I sat down. But that is better than dozing at the red lights when I was

going somewhere before that. When I picked the kids up at school I went

early so I could nap before they got into the car.

To all of you care givers and patients, and the ones left behind,

sure it is a bum rap. But it can be done. Every day is a blessing, good

or bad. You can do it. I discovered, the Lord renews the strength for each

day. Even when you think you are at the end of your rope, He is there and

will pull the rope up to His loving arms. Just give it a tug and He will

do the lifting. Don't try to cheat and shinny up, you will fall back.

May the Lord bless you and keep you. Two years ago I was where you are

now, taking care of my loved one as best I knew how and this group was

with me every day of the journey. Now I have other things to do and being

able to share with you, and maybe give some help, makes it all better.

Much love to all.

Barb in Arlington.

--

"Love is a fruit in season at all times." Mother

[Guest guest]

!DOCTYPE HTML PUBLIC "-//W3C//DTD HTML 4.0 Transitional//EN">

Barb,=20

Thank you for that wonderful note. I can really feel your deep love for =

Ralph,=20

and his for you. You were lucky to have each other for so long.=20

No one=20

deserves to have this disease in their lives, and it adds a dimension to =

life=20

that no one should know. I am sure everyone on this list remembers the =

day when=20

the terrible diagnosis polluted their lives--how life as you knew it was =

over.=20

For those of us who have lost our loved ones and for those who are still =

lucky=20

enough to be caring for them, and most of all, for those who are =

enduring this=20

insidious disease, we are all deeply moved by this ugly black fog that =

steers us=20

in the wrong direction but never keeps us there forever. I love the way =

everyone=20

on this list has entered this awful place and found love and =

understanding.=20

Debbie

[Guest guest]

Barb,

Yes, I remember the late night chats ) I remember one with Pam and

Anne too, where we all got goofy. I'm glad I was able to help you and

remember you were helping me at the same time. You newbies have to find

people on the list you like writing to, and help each other the same

way, just keep communicating (P.S. Barb and I fight over politics, but

we talked each other out of the blues many times.)

Take care and have a hug back, Bill How is the tribe of

Sellecks?

=========================================================

Barb wrote:

> These past few days it has been very difficult for me to write a

> response to some of the notes so I will do it all at once.

>

> The older ones on this list know of Ralph's diagnosis of PD after

> heart by pass, done in '93 and a year of guessing. Between the heart

> surgery and the diagnosis of PD, Ralph stepped off the edge of the

> driveway and broke his lower leg. That was a real shock to his system

> but he continued doing his work at the office and going to the fishing

> hole. (DX'd with SDS/MSA in '95)

[Guest guest]

Barb,

I have heard Ralph's story many times before, and I

remember " talking " with you some nights via IM when I was in

Nantucket and you were so worried about Ralph. (I also remember the

story about him tooling down the hall in the nursing home stark

naked!)

Your's is a story full of all the love, anger, frustration and fear

and little triumphs that are part of this illness. Thank you for

sharing them with us again, and for reminding us that in the end it's

all about loving the person who is ill.

My New Year's wish for all of us is that we find strength and wisdom,

even in the face of adversity.

Carol & Rob

> These past few days it has been very difficult for me to write a

> response to some of the notes so I will do it all at once.

>

> The older ones on this list know of Ralph's diagnosis of PD after

heart

> by pass, done in '93 and a year of guessing. Between the heart

surgery

> and the diagnosis of PD, Ralph stepped off the edge of the driveway

and

> broke his lower leg. That was a real shock to his system but he

> continued doing his work at the office and going to the fishing

hole.

> (DX'd with SDS/MSA in '95)

>

> He was having great difficulty seeing so there were prisms put in

his

> lens. He was diagnosed with degeneration in his eyes. Cannot

remember

> the exact name. He was in wrecks so many times he began to pay for

the

> damage on his own, to keep it off his record. He was an insurance

agent

> so had to be able to drive and keep his job. The final straw was

when he

> wrecked my new " 96 mini van at Christmas time of " 96. He had already

> replaced the front wheel twice because he kept hitting the curbs.

He

> was driving in the gutters and scared me to death several times, as

I

> feared I would be wrapped around a telephone pole, or worse. He

went the

> very next day and turned in his license to drive and my challenges

> really began as his driver.

>

> Our daughter and I were taking him to the neurologist here

in

> Arlington and he had so many tests. Dr finally referred him

to

> Dr. Dewey at TSWMC, in Dallas. He was examined and the

Muscular

> Dystrophy picked up all the expense of testing and treatment. They

> referred all of their treatment and recommendations for medication

to

> Dr. and our family physician. Somewhere along in there we

had to

> change insurance coverage and physicians but we could keep our

> neurologists.

>

> The dates for all of these surgeries slip my mind but, during his

> treatments he had a cataract removed. He retired and the real

struggle

> began. He too had great spikes in his bp. During one of the bad

ones the

> central artery in the back of his left retina was blocked by a

clot. I

> suppose we were fortunate that it was not a stroke but it was just

as

> bad, because it caused blindness in that eye. They tried the laser

> treatments but they were so painful they stopped and made plans to

> remove the eye before it shrank into the socket.

>

> (Yes, he was on all of the usual medications and bp medication.

This

> day he was up in the 200's +)

>

> That was not to be.

>

> He had a very serious and painful episode one night and wound up

getting

> his gall bladder removed. Had to stay longer than usual because he

was

> hallucinating and surgeon refused to send him home unless we had

home

> care. (This seems to be typical of SDS/MSA Takes longer to get rid

of

> it) He stayed a week and the home health began. We qualified for a

> while but when he was able to get out of the house he no longer

> qualified, so we paid out of pocket, and the kids, and friends and

care

> giver, shared my load up until he had to enter the nursing home.

>

> That decision was necessary because he received a PEG tube in March

of

> 'oo. It broke loose on April 8th and he was in the hospital again

with

> the stomach draining into the abdominal cavity. Peritonitis. Very

> severe.( This may have been caused by the falling and tugging to

get up,

> no one really knows) In fact when they took him in for surgery the

> surgeon told me it might not be repairable. He was full of waste and

> liquid formula.

>

> They brought him out to a very long and very painful " recovery " . He

had

> a nasal feeding tube and no food by mouth ever again. They had

told me

> hesitatingly, they would not touch him again for six months. And

> recommended extended term care. (I think they knew then that they

would

> not have that opportunity) At that time they would check to see if

the

> stomach had healed enough for another PEG. He left the hospital on

May

> 1st. And was admitted to a special care nursing home.

>

> During his time in the hospital he was pulling his tube out just

about

> every other day. Sometimes twice a day. The doctors told me he may

not

> have realized what he was doing. It was just bothering him. In fact,

> Ralph never fessed up to doing it himself. Tho he always felt if he

> could get it out he could eat. But that was not possible, he would

> strangle. Also hallucinations do strange things to the mind and

body.

>

> There was one very strange thing about all of his surgeries. He

could

> speak plainly and distinctly while under sedation and pain

medication.

> His speech therapist told me it was probably the medication. Because

> when he was not on it he was speechless and like a rag doll. They

could

> toss him all over the bed and he never complained.

>

> He sang along with the musical video tapes I set up for him in his

room.

> Of course, his singing in the choir meant he knew every word to all

the

> Gaither music.

>

> He had a catheter but kept pulling it out too. Finally messed one

up so

> bad it got a kink in it and a specialist was called in. He had

worked

> with SDS/MSA patients so he explained to us just what was going on.

The

> want to was there but the control for emptying bladder was gone.

That

> meant if we brought him home the girls and I would have to learn

how to

> straight cath. We learned by watching but never had to do it

because he

> was sent to special care nursing home. When the straight cath was

done

> he fought them every time. He was urinating but only getting the

over

> flow out..

>

> He was a wild man while there. Tried every way possible to get out.

They

> finally had to put an alarm on his bed and on his chair. He was

calling

> the police to get him out. That meant no phone in the room but he

would

> go to the nurses desk and use theirs when they were not at the desk.

>

> Being called in the middle of the night was getting to be a habit

for

> me. But it was never easy. He begged me to bring him home. But

there was

> no way I could give him the care he needed. He was continuing to

pull

> his feeding tube out or else he was going over the foot of the bed

> beyond the bars and falling to the floor still connected to the

feeding

> apparatus. How he managed to avoid getting broken bones I do not

know.

>

> Had to move him out of there when the therapists decided he was not

> going to make progress in recovering. So off we went to another

nursing

> home. They soon learned they could not contend with the feeding tube

> removals. I was meeting Ralph and the ambulance at the hospital ER

on

> average of three times a week. Sometimes two days in a row. Many

long

> nights, because I had to check him in and then follow the ambulance

back

> to the nursing home to see that he was okay.

>

> Had to move him again to a place that could replace the tube. But

he

> continued to give them a hard time. He would disconnect it and get

out

> of bed on his good days. He was on continuous feeding because he

could

> not take anything by mouth.

>

> He would wheel down to the lunch room and get sugar or a doughnut.

They

> caught him before damage was done. But I found dozens of packets of

> sugar in his dresser drawer.

>

> For a man who could not see, hear, speak plainly, nor walk alone he

gave

> everyone a merry chase.

>

> Each time he was in hospital he had pneumonia which always set him

back

> a pace.

>

> He was determined to come home and many times I left with both of

us in

> tears. There was just no other way.

>

> Bill, if you are reading this, you know and remember the hours you

and I

> spent talking on IM trying to figure out the next move. I could not

have

> done without your encouragement and laugh times. Remember when we

tried

> to figure out the best way to unplug the commode? No easy way that I

> found in all the tests I made. (Finally had to call my plumber

brother

> in law.)

>

> The late night gabs when we were both so weary we were nuts?

>

> Thanks old friend. I hope I was as useful to you in your time of

need.

> We do get wrapped up in our own sorrows at times and forget others

are

> hurting too.

>

> The day before Ralph left, he was tooling all over the nursing home

in

> his wheel chair but fell that night when they were putting him to

bed.

>

> They called me the morning of July 27, 2000 and told me he was ill

and

> they were checking him for pneumonia, but not to worry, they would

call.

> I went out that afternoon, and they had been trying to reach me at

home,

> as I was on the road. The nurse met me in the hall, he was gone,

just

> five minutes before I got to his room. They were all around his bed

> trying to figure out what had happened. He just slipped away as they

> cared for him. I promised them there would be an autopsy so we

would all

> know.

>

> I had an earlier conversation with our family physician, in June.

He

> told me the sds/msa would not take his life. It would be a slow

shutting

> down of the systems and he would go via heart attack or pneumonia.

>

> Autopsy showed terminal pneumonia, hypotensive heart disease, and

> sds/msa. All of those things I felt were true, but I had to know.

>

> It was a long hard battle for at least ten years but he fought like

a

> tiger to get things done when he could. He too would get angry with

me

> and tell me things that were not true. He saw little people in his

room,

> at times he never recognized me and spoke to me about me. That is

what

> hurt the most. Along with the anger. I reprimanded, as the counselor

> recommended and some times just left the room. When I returned he

had

> forgotten the anger and wondered why I had left. Of course I was

still

> mad and hurt. But it goes away. You cannot keep all of the hurt, it

will

> eat your heart out.

>

> But he never failed to tell me he loved me and I to him. He left

love

> notes on his dry marker board . That is the way he communicated with

> every one. I also had notes over his bed for the nurses to know how

to

> care for him. We had fifty one years together, plus dating time.

>

> About the family support some of you do not have. They are cheating

> themselves because when it comes time to say good bye, it is too

late to

> apologize. I could not have managed without the family support, the

> neighborhood support, his business associates and the church

family. And

> all of the friends on this list.

>

> When we began this journey we were honest with everyone. They knew

as

> much as we did. The kids went with me to all appointments with

doctors

> and nurses and lawyers. There were no secrets. The little grand

children

> were aware of everything and they prayed with him that he would go

to

> Heaven before he got too bad to enjoy his time here.

>

> They were sad to tell him good bye but they are glad I had

explained it

> all to them. They were more able to accept the changes that came

and to

> laugh with him when he was feeling good. They were good about

visiting

> the nursing home and pushing him all over the place when he felt

like

> getting up. They had seen the changes over the years and had helped

here

> at the house when he was at home. In fact, Cody, who is now eight,

fed

> him through the PEG tube at times.

>

> This is a long epistle. I hope it has not bored you to tears. But I

can

> safely say, it is, and was a long hard trip but Ralph came out the

> winner. He beat the odds and lived a good life. When it could have

been

> worse, the Lord took him home when He was ready. Now he is well

forever.

>

> I did not realize I was so tired until after wards. I slept when

ever I

> sat down. But that is better than dozing at the red lights when I

was

> going somewhere before that. When I picked the kids up at school I

went

> early so I could nap before they got into the car.

>

> To all of you care givers and patients, and the ones left behind,

sure

> it is a bum rap. But it can be done. Every day is a blessing, good

or

> bad. You can do it. I discovered, the Lord renews the strength for

each

> day. Even when you think you are at the end of your rope, He is

there

> and will pull the rope up to His loving arms. Just give it a tug

and He

> will do the lifting. Don't try to cheat and shinny up, you will fall

> back.

>

> May the Lord bless you and keep you. Two years ago I was where you

are

> now, taking care of my loved one as best I knew how and this group

was

> with me every day of the journey. Now I have other things to do and

> being able to share with you, and maybe give some help, makes it all

> better.

>

>

> Much love to all.

>

> [image]

> Barb in Arlington.

>

>

>

>

> --

> " Love is a fruit in season at all times. " Mother