For

[Guest guest]

Your " panic attack " is understandable. To discover that the person

you love more than anyone else has an illness that cannot be " cured "

except with a transplant is a moment when most of us who are

caregivers have just " lost it. "

But you know that you are not just the love of his life, but also

his primary support. That doesn't mean that you don't cry or get

angry (at everyone from him to you to his doctors to God), but it

does mean that you need to be there for him.

I lost my Kjersten to cirrhosis on June 3rd, 2005. We had both been

married before and, in many ways, were at a point in life (forties)

where we just didn't think that the big lightning strike that love

is would every really occur again. And then it did.

One of her doctors told us that " cirrhosis always means a lessening

of life expectancy. " But they cannot predict how much less. Some

people are able to live many years with the illness, even without a

transplant.

If I had one change to make during Kjersten's illness, I would have

been more assertive, more demanding early in her illness. She had

very good medical care at the end, but it was not as good early on.

To a degree, that was because both of us assumed that " doctor knows

best, " but that is not always true. This site, and the referrals to

other sites, will give you and enormous background in the illness.

I would suggest not only local specialists, but also university

hospitals, many of which can provide extraordinary care. Most of

all, never, ever give up.

While I know you focus at this point is to take care of , you

really have to take care of yourself...not just for you, but for

him. If you run yourself ragged, physically and emotionally, you

will not be of help to him when he needs you most.

Dorothy had some good suggestions about how to take care of

yourself. Sometimes, you can take care of both of you at the same

time. Kjersten and I loved movies and we would often cuddle

together on the sofa to watch films.

Other times, when she was asleep (she often napped during the day),

I would sit out back on the screen porch and watch our cats, listen

to the birds, read a book). I also went for walks...we live in a

somewhat rural area (the streets are unpaved, no sidewalks, sewers,

etc.) and it was helpful for me to walk and think and, sometimes,

talk out loud (without fear that anyone would hear me except God).

I will mention one thing that no one else seems to have discussed,

though I suspect many of us are actually doing it. Although you

might feel that you barely have time to do the things you " have to "

do, you might make time to keep a journal.

Both Kjersten and I kept journals for many years...actually, years

before we even met. They were outlets for hopes, dreams,

imopossible victories, terrible losses...and all the rest. I did

not know about Kjersten's journals until six months before her death

(a time when she seemed to be in good health, actually). Some were

in notebooks, others were in her computer. She made me promise that

I would " secure " her work...which I understood to make sure no one

else saw it.

I have read her work and often reviewed mine...and charged my oldest

son with the responsibility of taking charge of both journals. He,

as a writer and editor, is certainly up to the task.

But even if your journal...your writings...end up in the trash

basket, the truth is that the therapy is in the writing. I would

encourage you to take up your pen or to pull out your keyboard and

write what you feel. Even if no one else ever sees it, it will do

you a world of good to put your feelings into words.

My apologies for making this so very long...I am trying to touch so

many points of your letters...in so many ways, you are at day one of

a very long journey...and, although Kjersten is gone, I am still

have not finished the journey either.

Kjersten did not want me to tell anyone about her illness. In the

beginning, that was not so difficult. She was somewhat estranged

from her family...she was the " whoops " kid born of fifty-something

parents...her beautiful, nordic blonde, atistic sister died in a car

accident (her brother was driving) when Kjersten was seven. Her

brother graduated from college before Kjersten got to first grade.

Kjersten grew up as an only child of an enormously dysfunctional

family...to compete against her dead sister was imposssible (her

family still has Kathi's art prominently displayed) so she tucked

her light brown/dirty blonde hair up into her baseball cap and

competed against the boys. One of her favorite memories was waiting

for " all the boys " to come out of elementary school and then racing

them down the street. She beat them all...every time.

She couldn't beat cirrhosis...but she gave it a good run.

She was a graphic artist. I sold advertising and wrote copy...if

you will, I wrote the words and she wrote the music. For the last

year plus I have stuggled...but a very vital part of me is missing.

OK, enough about me. Just realize that your well-being is more

important than 's well-being but they are both intimately

related. If you're OK, he will be too.

Don't keep it a secret from everyone. But you don't need to share it

with everyone because they will often have inappropriate repsonses.

One of my favorite uncles wrote to me (via e-mail) a few days after

Kjerten's death. He had met her once and yet wrote, " Well, she must

have been a heavy drinker to die from cirroshis. "

The truth is that Kjersten gave the lie to the term " social

drinker. " She seldom drank, but, if you have liver problems,

seldom is far too often. Still, the awful truth is that she did not

know she had problems with her liver until it was far too late.

She did not want anyone to know how ill she was and I respected that

for quite some time. I do not know where or when the dividing line

is. She and I had a good friend in Iowa who knew from early on what

was happening and was very supportive. Her closest relative was her

brother (in Connecticut). She was adamant about not telling him

because, she felt, he would be judgemental. I called him several

times in the last four months of her life; let's just say that he

could not find time to make it to her funeral....

You will find, as push comes to shove, who your real friends are.

Kjersten and I did...and she took that information to the grave.

Dennis

dhtaylor4@...

Feel free to write me privately if you wish.