Re: to Jerrie and concerning feeding tube and pnuemonia

February 25, 2002

Hi, my name is Annette and I try not to comment on too much discussed

here because I'm not an expert in any aspect but I am lovegiver for

my

husband and we have experienced MSA for about eight years. I

realize that every case is different but I did want you both to

realize that there are options.....and yes everyone must make their

own choices when faced with difficulty swallowing. was in the

hospital with infection in bladder, blood and pnuemonia four years

ago and we were told that he might not live. They assumed he had

aspiration pnumonia and we were told that without a feeding tube he

would probably be back in a couple of months. decided against

the feeding tube even though I cried and begged (and threatened

somewhat) but that's never got me anywhere in 37 years of

marriage He couldn't talk and remains that way so really couldn't

explain his reasons for the choice but we all know that his mind is

excellent and he has the right to make his own decisions. Soooo I've

worked with that decision and done the best we can. The doctors were

wrong.....he has not had pnumonia since. We had a swallowing test

about 6 months after he got out of the hospital and was told that he

was aspirating with every swallow and every consistency....but I

don't believe it was a good test at all....our family doctor said

that it had to be done correctly and with a speech therapist present

and I don't believe that was the case......anyway the results we were

told was that there was NOTHING WE COULD DO ABOUT POSITIONING OR

THICKENING and that it was just a matter of time until his lungs

filled up with liquids and death would result.....that was over three

years ago and none of that seems to be the case. Now, I need to

explain that every time that I read Bill telling about how much

improvement that he saw with his wife and how her " quality of life "

was better, I was jealous, angry with my husband and felt sorry for

myself!......I know it's not nice to say but :Charlotte is gone and

is still with me.....so feeding tube is not a guarantee. I had

a talk with my Lord and told Him " all my troubles " ....I confessed my

helplessness and said that I would put what I could in 's

mouth the best I could and I would trust him to get it to the right

place! I disregarded everything that SEEMED LOGICAL and just tried

different things and observed what worked and what didn't.-

We found a cup that with just the right size whole and at just the

right angle he can drink almost any liquid without choking..although

juices are better with a smaller hole then ensure, which is thicker.

I also recognized that he swallows better in bed (with the head

slightly raised) then in his chair, even though, I think the angle is

about the same. .....Here is the place I need to explain that 's

head is bent forward and to the side. I had a speech therapist come

to see if there was anything else that I could do that I was not

doing and when I demonstrated what we were doing.....how I held the

cup, counted to 10 seconds and then took away etc and that we had

best results in bed etc.....she said that I should be teaching and

not her, that she actually learned some things from me. One of our

sons observed that sometimes when he didn't swallow and we had taken

the cup away, that when we wiped or blotted his lips that it

stimulated a swallow.

Now without going into everything that we do now, (by the way, he is

able to also eat some soft pudding, yogurt, and pureed foods at times)

let me explain that

it's extremely difficult to work so hard to get liquids and nutrition

in and that

we have to be extremely cautious about dehydration (we've had to have

IV's a couple of times) but not for over a year now since I've

learned a few more " tricks " . really doesn't choke as such. We

were told that he no longer has a choke reflex but he will " gag "

occasionally, I have a suction machine if needed but seldom use it.

Cold liquids seem to be the only thing that causes any problems in

that area.

I'm also aware that things could and might change and perhaps become

impossible; but I just had a " talk " with to

understand why he has made this choice so that perhaps we can share

with others. First of all, it is not because he wants

to die any earlier...it is because he thinks it is more " natural " to

be fed this way, less humiliating and he feels that he still has some

control in life....(after all he does still have to swallow)and he

also said that he made the choice because he had confidence that I

(we) would find a way to solve this problem as we had others. We have

faced a lot of challenges with this illness and each day is

completely new. We both have always realized that there are

consequences to every decision. We both now have peace about this

one and pray the same for everyone that must make the choice of a

feeding tube or not. God Bless you all.... ager@y..., T7311478@a...

wrote:

> hi my mom was just admitted to the hospital late last night for

dehydration

> and not being able to swallow any food or medication she also

blacked out we

> have to decide on a feeding tube in her stomach or not? what are

your

> thoughts on this? she has msa melissa

February 26, 2002

Hi Annette: Thanks for your reply - " the other side of the coin " . You

are lucky your decision was the right one because we don't know the

answers in advance. As for Bob, right now, he is deciding whether or not

he wants the feeding tube. At this point,he cannot even get crushed meds

down in thickened liquid. The swallowing mechanism is gone, therefore he

hasn't eaten in about 5 days. Today should be " decision " day. Continued

good luck! Regards, jerrie

February 26, 2002

Hi Annette: Thanks for your reply - " the other side of the coin " . You

are lucky your decision was the right one because we don't know the

answers in advance. As for Bob, right now, he is deciding whether or not

he wants the feeding tube. At this point,he cannot even get crushed meds

down in thickened liquid. The swallowing mechanism is gone, therefore he

hasn't eaten in about 5 days. Today should be " decision " day. Continued

good luck! Regards, jerrie

February 26, 2002

Jerrie, Just wanted to add one other comment that I forgot at

midnight ......I told that now that I understand his reasons for

not getting the feeding tube, I feel the same way but with one

difference,... I would try the feeding tube just to make sure of

what difference it might make because the doctor told us that it's

not permanent and can be taken out if one changes their mind.... So

why not try is my philosophy ......but as I keep saying " we are not

all alike and must respect others decisions. I will be praying for

you both today as you cross this particular bridge on our common

Journey. PS. we get what little meds takes down by crushing

and disolving in liquids or requesting the liquid forms...and we have

had IV antibiotics AT HOME. The last time we recognized a uti before

the swallowing got so bad and we were able to take liquid antibiotic

by mouth. Things change constantly and never know what tomorrow will

bring or what our response will be but we always know in who's hands

we are and that He will never leave us.

> Hi Annette: Thanks for your reply - " the other side of the coin " .

You

> are lucky your decision was the right one because we don't know the

> answers in advance. As for Bob, right now, he is deciding whether

or not

> he wants the feeding tube. At this point,he cannot even get crushed

meds

> down in thickened liquid. The swallowing mechanism is gone,

therefore he

> hasn't eaten in about 5 days. Today should be " decision " day.

Continued

> good luck! Regards, jerrie

February 26, 2002