RE: Difficult Question

[Guest guest]

Hi Kim. First of all let me say that I am so sorry for all you are going

through right now. I understand your pain and confusion. It is such a

difficult road when we love someone and we watch them slipping away from us

bit by bit daily.

To answer your question, no this is not the time you sit by and watch him

wither up and die. It is the time you pool your resources and reach out

for help so you can help him cross over with dignity and pain free and as

comfortable as is humanly possible. Hospice is an excellent choice for

someone in your shoes. I don't say that flippantly or with little regard.

I have walked your path to some degree. My husband of over 33 years went

home on Jan. 26, 2009. He had NASH cirrhosis.

As for signs the end is near, it's a difficult thing to put your finger

on. You spoke of him asking for pain meds, which was highly out of

character for him. The same happened with my husband. He never wanted

anything for pain until the last 2 weeks of his life. He went in for a

paracentesis and asked the doctor for something for pain. He was

prescribed Fentenyl transdermal patches. He had roundly refused anything

whatsoever for pain up until that point.

The needle stick for his paracentesis never stopped leaking. I had to

change the bandage on it several times daily right up until his last

breath. He became more and more confused, slept almost 24/7, could no

longer eat or even sip water. He could not take his meds because he could

not swallow them. His balance was really bad and he could barely stand up

from his chair without assistance. He had no bowel or bladder control but

that became a sort of non-issue because both his bowel and bladder just

stopped working.

At the hospital for the paracentesis, I asked for the Hospice

consultation. He was admitted to Hospice before we left the hospital. Two

days after, the Hospice people came to our house and talked to me about

what to expect. They tried to talk to my husband but he slept so much, he

couldn't form a sentence. They explained to me that he was reacting in a

very normal way for what he was going through.

The next day I received what they called a 'comfort kit' from FedEx. It

contained meds that might become necessary in order to keep him comfortable

until his crossing was complete. Everything was in either a dropper or a

suppository form. The fluid filled his abdominal cavity so quickly that he

began to balloon up within 24 hours. There was nothing else to be done for

him. He had no desire for a transplant and wanted to die quietly at home.

Once the 'comfort kit' is opened, it is typically only a few days, perhaps

even only a few hours, until the time comes for the final crossing. I

opened his after we had been home for about 9 days. I called his Hospice

nurse who came as soon as she could get there to help me understand

everything in the kit.

He had refused to have a hospital bed, but was now incapable of making his

own decisions so I had them order a hospital bed. It was delivered that

afternoon. EMS staff arrived very early the next morning and moved him

from his chair into the bed. The Hospice nursing assistant arrived soon

afterwards and spent most of that day with us. She bathed him and changed

his bed linens even though he had just gotten in bed. She wanted

everything to be fresh so he could be comfortable.

I had already started using the meds from his kit. He had morphine for

pain (if one is allergic to morphine, the doctor will order other pain

meds), haldol for restlessness, some sort of drops to dry up the secretions

in his mouth so he wouldn't choke on them and one other that I can not

remember at the moment.

When he was awake, however briefly, he still knew everyone who came to

visit up until Saturday morning. We had met when I was 15 and had dated

until I finished high school and got married that summer. He had always

signed anything he ever wrote to me " I love you, forever and

always.....Terry " .

On Saturday afternoon, he stopped calling my name and would just moan when

he needed me. I had moved the sofa into his room so I could be there with

him 24/7. He would call out " Di " when he wanted me at his bedside. He

kept trying to say something, but could not. Finally, he moaned very

deeply and I rushed to his bedside. I took his hand and he opened his

eyes. He had a tear rolling down his cheek. He looked into my eyes,

squeezed my hand and whispered 'forever and always'. I began to cry as I

leaned over him to kiss him and said " I know baby, you love me forever and

always and I love you too, forever and always. " He never made a sound or

opened his eyes after that.

He made his final crossing at 1:33 a.m. on Monday, Jan. 26, 2009. I and my

sisters were at his bedside and his Mom was asleep on the sofa. Forever

and always.........that's exactly where our love lives now, in eternity.

Ok, so signs to look for.......extreme fatigue, sleeping almost 24/7,

cannot swallow, no appetite or thirst, inability to walk without

assistance, loss of bowel and bladder control with soon coming shut down of

both, confusion that worsens with every hour and for my husband at least,

huge fluid retention with a leak that grew daily.

There are some things that happened with my husband after he crossed that

are hard to hear. However, if you would like to know about it, please

email me privately at diane.chandler.75@... . Many would most likely

not want to read about it on the board because it can be quite gruesome.

Please know my heart and my prayers are with you. Please reach out to

Hospice for help. You need it if you are to navigate this difficult time

with any hope of having peace afterwards. This is hard work, the kind that

will drain life from you and it does from him. I wish I had involved

Hospice much earlier and did so with my Daddy who crossed last September

and had been in Hospice for 10 months. He had C.O.P.D.

Email me if you would like to ask questions about the things I spoke of

earlier. Please take care of yourself. His journey is drawing to a close;

you still have many days, weeks, months, years to go in your own. You will

need your strength for the remainder of your own journey.

Many hugs...........

Diane C from TN