During my dad's illness I was in constant search of timelines and signs and symptoms and what to expects. I wanted to be prepared. I hope anyone searching personal blogs like I did will find this useful. And if I can tell a fellow caregiver one thing, it's don't be afraid of the end stage. Everyone's story is different. Prepare yourself as much as you can, and know your strength will rise to the surface exactly when it's needed.

June 16, 2012 - Daddy goes to the ER, emergency bowel obstruction surgery, diagnosis stage IV colon cancer with liver mets

June 25, 2012 - Daddy is released from the hospital, and moves into our home - his home.

July 3, 2012 - Port placed

July 26, 2012 - Chemo starts, every other week

September 22-29, 2012 - Daddy was doing great, Fred and I went to Seattle on vacation, we came home to him feeling every possible chemo side effect

October 6, 2012 - Fred and I took daddy to the ER, they did a CT and we were told in the ER it looked like the cancer was growing. He was admitted and it took them 9-days to get his hydration and potassium levels regulated. When we asked his doctor about the CT, he said it was the chemo causing inflammation and we started to breath a sigh of relief.

October 15, 2012 - Daddy released

October 18, 2012 - His doctor says the CT scan show the chemo isn't working, the cancer isn't growing but it's also not shrinking. He's looking into other drug options that may work better.

October 30, 2012 - Daddy complaining of chest pains, and I took him to the ER. Feeling a bit like a pro after the first terrifying visit. He was admitted and released the same day.

November 1, 2012 - His doctor tells us he had the best treatment, but it didn't work. The next chemo option isn't as strong and comes with nasty side effects, so it's time to decide if he wants to live on chemo or he wants to focus on quality of life.

November 15, 2012 - Daddy admitted himself into home Hospice. Mother takes Daddy to a funeral home where he begins to plan his funeral and picks out his urn. (He pronounces it Ur-en...makes me smile)

Nov/Dec/Jan Appointments - He's doing great. So great at the January appointment they run tests to get a look at his bilirubin levels to see how the liver is reacting.

February 21, 2013 - Check-up. Daddy appears more jaundice. Complaining of pain under his ribs and around his spleen. Over the next few weeks his stomach started looking more and more bloated.

February 27, 2013 - Hospice nurse made her weekly visit and told him his metabolism was slowing down - eat 5 small meals a day

March 7, 2013 - His social worker called to check on him, and he asked they send a nurse that day. No one came. I called around 8:00 PM and they send a nurse out. She told him he was just constipated and needed to eat more fiber and start taking laxatives. He kept comparing the feeling to the way he felt before his bowel obstruction surgery, but he wasn't in pain - just uncomfortable.

March 10, 2013 - Daddy seemed to be doing okay. I asked if he wanted a nurse to drop by, but he said he could wait until Monday. Then around 6:00 PM he asked me to call. This time he was diagnosed with liver ascites and no bowel sounds. I asked the nurse if this was our sign that his health was starting to decline. She said not necessarily. Something told me it was. Listen to your instincts. From here on out he gets more and more jaundice by the day.

They delivered all kinds of fun pain medication that night and started him on some medication to get his bowels moving. And then it became a game of find the right pain medication. He doesn't like being knocked out, and the ascites causes fatigue in general so he was pretty out of it.

March 18, 2013 - Hospice nurse gets him on pain medication that makes him feel less fatigued. I leave a message for his doctor asking about getting the fluid drained, and they work me in the next day.

March 19, 2013 - The shock on Daddy's face when he saw how much he weighed, 172lbs. He was 161lbs at his last check up, and he's been eating so little we know he has actually been loosing weight. They estimate he's carrying 16lbs of fluid. We make an appointment to get it drained.

March 21, 2013 - Fluid drained. The removed 5.6 liters of fluid.

March 23, 2013 - He's lost an incredible amount of weight since the ascites diagnosis. Hospice nurse that diagnosed the ascites pulled me aside and said he was declining rapidly. This is the one that told me the ascites wasn't a sign of decline. Even with the fluid drained he's not eating normally, I tell him he needs to try to gain some weight.

March 27, 2013 - Fluid starts to return. Stomach distended, but not at previous pain level. Feet were swelling again to the point he couldn't wear normal socks.

March 28-29, 2013 - Started him on 12-hour slow release morphine pills. Visiting with his sister and seems to have much more energy. Eating well. No napping. Looking back I know this was his rally, the last spurt of energy before the decline.

March 30 2013 - Zoning out. Eyes rolled back, lids half shut, mouth hanging open, tremors in his hands. Oxygen fell to 85% the night before. Monitoring more frequently. Had visitors and was still able to communicate.

March 31 2013 - Much more zoning out. Dropped his drink and spilled it on himself. He aware he's declining. Slight ability to communicate - still wanted to stand to give hugs goodbye. Started getting hiccups.

April 1, 2013 - Near constant state of zoning out. Constant hiccups some almost gasping like. Decided it was best to bring Daddy back early from his sister's house early. Urine output went from yellow-orange to yellow-brown. Ate breakfast, very minimal lunch, no dinner. Drinking very little water.

April 2-4, 2013 - We brought in a bedside commode. He stopped eating completely. Taking in very little water. A few sips of Ensure. Went from being able to suck from a straw to having to drip water into his mouth using straw.

I requested family members to start saying their goodbyes on the 2nd. Before the decline, he wanted a will and to add me as a life insurance beneficiary. John, mother, and I told him he didn't need to worry about those things that his wishes would be met. I wanted to be sure he had nothing left unfinished to help him make the transition into his next home.

By the 4th we were only wetting his mouth with a water swab. He still had the urge to go to the bathroom, but he wasn't taking in enough fluid to go and it was getting scary trying to get him out of bed. We made him start using the diaper. I was alway nervous about reaching this point, but you do what needs to be done and in the moment when you love someone in this way it's not a big deal.
April 5, 2013 - More coughing to clear his throat. Eventually loosing the ability to swallow. My mother and brother visited until 7 PM, and he began the transition into the death rattle very shortly after they left.

WARNING: This stage is a fight. I didn't know it would be such a fight. A lot of coughing because he was unable to clear his throat. His heart rate was up, and I felt like his anxiety was high but hospice didn't give me liquid Lorazopan (anxiety meds) so I started administering liquid morphine every 30 minutes.

Looking back I should not have used the pulseoxmeter at this point, since his finger tips were no longer a good read for his heart rate. It very well could have been me projecting my own anxiety during this stage. By midnight he wasn't moving and had fully transition into the death rattle.

April 6, 2013 - Daddy passed away at 1:05 PM

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