The Last 5 Days of End Stage Liver Disease Bleeding Out

Your experience will be different....this is ours.

Sunday...the last lucid moments with my sister.
Monday...she could no longer be left unattended
Tuesday...she didn't even know who she was
Wednesday..she could no longer get out of bed
Thursday...her transition

Her body continually moved about. I set my chair and footrest beside her bed Wed. night and stayed with her. I had to move her leg back onto the bed all night long.

5 am Thursday morning as I slept beside her, my daughter asleep in the other room. My sister woke me crying out "Help me Marla"....I tuned on the light and set her bed up...she began bleeding out through the mouth. I yelled for my daughter to help.

I was aware of the bleeding out process with liver disease and had given my daughter specific instructions. She was to put on gloves and bring warm water and wash clothes to me and get out of the room immediately.....then call the hospice nurse. SHE WAS NOT TO ENTER THE ROOM AFTER THAT.

Brenda sat quite in her blood covered yellow gown. I thought she was dead. I had already put on gloves as my daughter brought in the water. I saw she was still alive and calmly and tenderly began cleaning her. I cut her blood covered gown from her body and placed it in a trash bag...I cleaned the blackened blood from her face and body. She just sit there without movement..I don't even know if she knew what was happening.

As I was finishing cleaning her the nurse arrived....between the two of us we changed the blood soaked sheets from beneath my sister and put a hospital gown on her. Brenda was clean the bed was clean and it didn't get any better.

My daughter worried about me....insisted I remove my clothes and shower....I only did this to comfort her worries.

We had liquid morphine on hand....it had not been used until this day. The nurse looked at me and said it wasn't only for pain ... it was also for this. THIS.....THIS? What was THIS? Simply put it was the body fighting to live. Thrashing about unable to rest....the person I knew as my sister did not exist...only a body fighting to live.

The morphine began early this Thursday morning and within one hour the dose was already doubled...her body fighting to hang on. The human machine continuing to run despite it was broken.

For several hours she would say "Help me Marla hurry hurry". I'm haunted with these words of hers....I KNOW WHAT SHE MEANT. I will explain later.

Darrin arrived about 11am....He tenderly held her hand and it seemed she knew he was there. The hours passed as she thrashed and moaned...the morphine continued and we cried.

Then it happened.....we sat her up the two of us locked arm in arm around her as I held the bucket and she bled from the mouth.....we turned her to her side to insure no blood was choking her and she bled from the nose......she was dead before we turned her. I screamed for my daughter to call hospice...I continued to work on her to get all the blood out...Darrin stopped....he knew it was over....I couldn't....I could only cry..."Brenda no Brenda no....not this way" I then felt two gloved hands on my shoulders telling me it was over but I could not stop. I could only see my baby sister bleeding and concern that she was choking....my mind could not grasp the reality of her death.

The hospice nurse called for help.....then called some meds to calm me. Somehow, they got me out of the room...I don't remember....the next thing I can remember is sitting on my front porch as Darrin bleached my hands and arms trying to remove her blood.

Brenda had witnessed more than one person die of liver disease she asked me once...."When the time comes...start pushing the morphine...don't let it go on....I will already be dead." I know her mind was thinking about this as she cried out for me to hurry and help her.To be honest...I considered it more than once....in the end I COULD NOT DO IT.

Thinking about doing hospice? THINK LONG AND HARD.....will you do it? Will you be able to live with it if you do? Will you be able to live with it if you don't?

Within minutes the two hospice nurses had Brenda and her bed cleaned. They placed her favorite purple gown on her body.... fresh clean sheets, her hospice donated quilt..her hair brushed and head on a pillow.

Brenda was no longer in pain...ten years removed from her face...her youthful beauty had returned. Her body was at peace...her soul lingered in the room. We kept her with us for about four hours as everyone including her oldest son arrived to say goodbye.

The coroner, his helper, her eldest son, and my son....removed the hospice quilt, wrapped her in linens, placed her in a body bag and carried her from the bedroom to the gurney. I had to open the bag and kiss her goodbye one last time and so did her son.

The velvet red cover was placed over her and I held her leg as she was taken to the van. I touched her one last time and said goodbye. The doors shut and my baby sister was gone.

The process of losing her a reality, the process of living without her, uncertain.

Hospice Can You Do It?

As I said we decided on Hospice and I thought I was prepared. As time passed it got more difficult to care for Brenda. Several times Hospice offered a 5 day hospital respa for me. I refused.

To hospice a loved one takes devotion and commitment. There are agencies that can send paid employees in to help care for the ill.....but I wasn't going to have that. I couldn't imagine a stranger at her side.

If you are thinking of hospice PLEASE think about it. Do you have time? 24 hours 7 days a week time! Do you have family that can help? Will you be using paid employees to care for that person? Will they take as good of care as you or a family member would? Are you ready for someone to transition within the home and still live there?

I guarantee you...nothing and I mean nothing got done around the house. Dishes piled, the living room didn't get cleaned....nothing. It seemed I could only do a dish here or there...everything including my life was on hold.

Brenda's room was immaculate....her bedding her gowns her body .... everything about HER was taken care of properly. Outside of her room....became a mess.

I was doing this by myself. No help until the very end....My dil came in and stayed with me Monday and Tuesday...my daughter was here Wednesday and Darrin was here Thursday when she left.

I don't know what I would have done during that time. BE PREPARED....it will become more than ONE person can handle.