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Hope Hospice – Going home to die.

Alcohol and drug damage to the liver is a horrible way to die. I have brought my best friend home to die. He’s only 46. My world is shattered as I watch a once strong and fierce man lay helpless in bed, not even able to feed himself without making a mess. My heart is breaking.

This has been a long, hard year for him. Last March, he got a cold and it was the beginning of the end for him. He never got rid of the cold. The VA doctor, Astrid Clarke, treated him with distain and disrespect and never tried to help him.

Complaints of heart issues and stomach issues went untreated by her. She ignored desperate emails from me for help. Phone calls went unanswered. She finally was forced to resign in early December and Leif was able to get a new doctor two days before Christmas.

He had gone into the hospital the first week of December 2015 due to horrible pain and was given Tramadol to help. Dr. Clarke had been giving him large doses of ibuprofen. Taking this led him to having a stomach ulcer, which nearly killed him. He woke up in February vomiting massive amounts of blood and bloody stool. A trip to the ER, an endoscopy and medication helped; but the after two months, we are here, at end stage liver disease.

He’d been treated for an intestinal virus a week before the bleeding ulcer; but because an endoscopy was not performed, the perforations in his stomach were not detected.

On May 11th, he had fallen for the 6th time in 5 days and my son & I no longer had the strength to lift him. He’d been retaining water and the prescribed pills were not helping him at all. He has over 70 lbs of water weight since his March 2nd release with a stomach ulcer.

At the ER we learned that his liver was in trouble. It wasn’t until he was upstairs in ICU that the doctors were able to tell me the full extent of his health problems.

Leif is yellow. His eyes and skin glow with it, something the lights at home didn’t really show us. However, the harsh, bright, white lights of a hospital room pick up instantly. His urine, when he was able to go, was an orangey color, which I thought was blood. It was not. It is liver bile coming out the kidneys.

Day 2 in the hospital brought more results and his doctor at CCH turned to me and asked me bluntly if he had a DNR order. He also told me he was dying. I was in shock. As I stood by his bedside and watched him babble incoherently, silent tears streamed down my face.

The hospital social worker came by to speak with me about what I had just learned. During a moment when he was with us, he managed to tell both social workers who came to the room that he designated me as the person he wanted to make his medical decisions. He was also able to sign a DNR. He plainly stated that he did not wish to be kept alive on machines. Funny thing is, he also told us that he wasn’t going to die. He’s a fighter.

Day 3 in ICU was another day of incoherent babble and hand waving. He was in and out of awareness. Watching him like this was hard; but I spent my time there praying that God would be merciful. I spent time also putting his BP cup back on and trying to prevent him from removing his IV lines.

Day 4 was heart wrenching at best. I arrived to find him breathing so hard that I was told if it continued he would be dead by nightfall. They said they could intubate him; but he would never come off and it was against his DNR or they could try a BPAP on him. We went BPAP. By late evening, his breathing was regulated. He fought hard this day. He was in kidney, heart, lung, and liver failure. His heart was enlarged and pumping hard, it looked like the end of the line for him.

They put a tube up his nose to his stomach for medication and tied him down to the bed so he wouldn’t pull off his mask, tube and electrodes.

Day 5 seemed the same as 4; but by afternoon, he was coming around. What a blessing. He wasn’t done yet. He was mostly coherent and seemed to understand what was happening around him. Yeah for him and for us. Still not doing well; but not about to give up.

Day 6 I arrived at 7 am as usual and he was removing his tubing, BP cuff, trying to take out his IV’s and told me right off that he was going home. When I asked him by whose authority, he told me the doctor and nurse told him so. I knew he’d not yet seen the doctor so I spoke with the night nurse, Sue, who was getting ready to get off duty and the day nurse, Jen, who was coming on. After listening to them talk, it was suggested that I talk to his physician about Home Hospice care.

At around 10 am, his doctor stopped by and we discussed Hospice. By 11 am rounds, Home Hospice was our exit strategy and arrangement were being made. By 5 pm, Leif had signed the papers and would be leaving in the morning, or so we thought. He could barely wait to go home.

I left at 8 pm to go home and ready myself for the next day. Hospice was going to deliver equipment for him in the morning; but didn’t arrive until closer to noon. By the time it was all inside and set up, it was nearing 1 pm. I picked up my son and left him at the house. I then headed to the hospital where Leif was already discharged; but awaiting my arrival to go home.

With a lot of assistance, he was deposited into my car and we went to the house. And that’s when the trouble started. I pulled the car as close to the door as possible; but my son & I still could not get him into the house. He is just too heavy. Our neighbor suggested we call for lift assist at our local Fire/Rescue office. What a blessing they are. They came and 5 firefighters helped him into the house and into bed. Never was I so grateful for such assistance.

The Hospice Nurse & Social Worker came by and helped us to get settled as well as go over some of the rules and way of the program works. I am glad he’ll be comfortable here at home where I can care for him. I do not know what the future holds for him; but I do know that he is happy and that is what really matters.

At present, his urine looks like dark brewed coffee. He spends a lot of time asleep and is in and out of lucidity. I just pray that our Lord and Savior will be merciful to him.

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About irishgoddess1337

SAHM, Retired Marine, Christian who survived Domestic Violence, living with Lupus, Fibromyalgia, Migraine, TMJ, Trigeminal Neuralgia, Sleep Apnea and living my life for Jesus! My son is a Senior this year!! YIKES! I love music! My son plays drums in his High School Marching Band & Percussion group. We live with three fur babies -- Tippy the Corgi and Honi & Teddy the Poms. I scrapbook, stamp and make rag dolls for fun! I've recently started acrylic painting and making jewelry. Life is good!

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