Hospice Continues

As I write this, it’s been over a week since we started Hope Hospice. He has a great Nurse, CNA & Social Worker. The CNA comes 3x’s a day. The Nurse every Friday and the Social Worker every other Friday.

Since Friday, 5/27/16, he hasn’t been eating a lot of food. He’s down to only a few bites here and there. Saturday seemed to be a turning point for that. I believe he has a UTI since he was screaming in pain during urination since Thursday evening. I got him some AZO at Walgreens for him and so far, it seems to be helping a bit.

He’s stopped having any BM’s since last week and he is in and out of lucidity. His urine output is about 800 ml daily now. He’s definitely drinking more than he’s out putting. I’ve read the data on End Stage Liver disease and it is not pretty. I hate seeing him in such pain.

He is sleeping more and more since the weekend and his dream state is very active. He’s continuing to see people and objects that are not there.

His Social Security has been approved; but at this point it is useless. He’ll be dead before the first payment is received, so he won’t even get a payment. It is a shame. They decided that his PTSD, which the VA didn’t help him with or even properly document, which has been giving him problems since 2012 was not problematic. They decided he didn’t become disabled until this past December 2015, even though he had two suicide attempts.

The first suicide attempt he was hospitalized at Bay Pines VA for a week. The second time, four months later, he went to the ICU at CCH and then Baker Acted at Bay Pines for a week. It’s been so hard for him. My heart is breaking over the way this man has been treated. He had a mental health doctor tell him he needed to “grow a pair” and “be a man”, degrading him further and sending him into an even deeper depression. His VA Social Worker didn’t work on anything meaningful or try to help him in any way and only saw him once a month.

This horrible treatment had him resistant to see them and made his mental health plummet. He then had a Primary Care doctor who I blame for his complete medical downfall. She was a bitch and had her own agenda. She was finally let go and by that time, it was too late.

I began just taking him to CCH ER for treatment since his doctors at the VA were useless and didn’t listen or make any referrals to other doctors. Or, when they did make referrals, they came two – three months’ after the referral was made.

Let me tell you about Veteran’s Choice. Veteran’s Choice is the new measure with which the VA allows vets to see outside providers when a vet can’t get into see a doctor more than 40 days out. Sounds great; however, when we requested this, it took over 4 months for approval. We should’ve just waited and saw the VA doctors. Either way, he’s now on his way to leaving this world.

Hospice isn’t easy. I’m working my butt off for him; but since I’m the first person to do so, it is a pleasure and honor. He’s getting weaker and weaker. He’s having a hard time staying steady with his hands. He can hardly hold a cup and has had a lot of near spills and spills, much to his frustration.

I pray for him every day and ask for God to be merciful. I don’t like watching him suffer. All I can say is I’m glad he is home and not hooked up to tubes and crap at the hospital. May God have mercy on his soul.


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.