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Daddy’s End of Life

As I posted previously my father died on March 5, 2011. He was 82 years old and he passed exactly six months before his 83rd birthday.

This is the story of his death.

On a Wednesday in late February my father alarmed the staff at Manassas Adult Daycare (run by the Manassas Baptist Church) when he suddenly appeared non-responsive to their questions. He was rushed to the ER but presented responsive by the time the doctors saw him. They considered releasing him but opted for the conservative approach of admitting him for testing. Inside I was secretly relieved- a hospital admission would lead to a direct transfer to a nursing home upon discharge for rehab and then Daddy could get the professional caregiving support he needed.

Each day at home had been getting progressively more difficult. Dad complained more, demanded more and slipped in health a little more as we moved through winter. I was wounded so many times by his careless and biting remarks. He had one behavior that particularly frustrated me- he’d call me to come urgently to his room and when I got there he’d say he just wanted to see if I was listening or he’d say he forgot or he’d deny he called me. He did this often and if I stop whatever i was doing and run in each time he demanded he’d try to get up and end up falling and hitting his head on the wall, the bed, or the floor. I felt trapped and helpless and now with the hospital admission I’d be free. But as I started to think about the realities of a nursing home and the likelihood that he would be cared for physically but unloved- at least not loved to the same capacity that a child loves her father-I felt tremendously guilty. I wrestled with wondering if I was committing a grave sin to let him be shifted off to a nursing home before it was absolutely a necessity. Would he become depressed, feel unloved and shrivel up in spirit?

I sat with Dad as they admitted him as an inpatient and once he was settled in a hospital room I kissed him goodbye and told him how much I loved him and that I’d see him the next day. I also told him I was sorry I could not take better care of him. His response: I love you too. You’re doing the best you can, that’s all anyone can ask for.  This was our last conversation; his last conversation with anyone.

A few  nights just a day or two before this night he had called me into his room and directly challenged me to just spend time with him so I brought my laptop in and sat with him and worked while he slept or we’d both listen to the tv and talk a bit. One deep regret that I have now is that I didn’t pay more attention to how lonely he must have been. I was too busy being frustrated, feeling overwhelmed or defensive over his cruel verbal outbursts. I should have sat down with him for hours several evenings a week instead of leaving him alone in his room to listen to tv or sleep while Jon and I carried on with our lives in the rest of the house. Did I make him feel unloved and unwanted? I never stopped to consider the possibility at the time. I could have been a better daughter. I could have cherished every moment with him instead of viewing them as burdens. It was just so hard to actively love someone so repeatedly hurtful to me. Other guilt I carry: maybe if I’d been more invested in his health from an earlier point (prior to 2008 when I moved him here to the area care for him better) I could have staved off all or some of his medical problems. Did he really have Parkinson’s or was it just a side effect from years of statin drugs to treat cholesterol? Was there anything his doctors were missing that someone who loved him and could advocate for him might have been able to see? All my hurt and anger with him seems so unnecessary here in the abstract when he’s dead and I’m missing him. But I know that in the moment it was raw and churning and I just couldn’t get past all the little ways he found to hurt me. I *think* I’m a good person and that maybe this guilt is a side effect- I feel guilty for not being as unconditionally loving to someone, even when they are hurting and don’t “deserve” it. God unconditionally loves me; I should be able to put myself aside and unconditionally love others and comfort them. To be fair to me, I did give a lot in the face of his abuse but I still wish I’d given more of myself. Maybe I could have kept him from dying through sheer will of love alone. I don’t know.

The morning after his admission, a doctor from the hospital called me to advise Daddy had fallen unconscious early in the morning due to low blood pressure. They were trying to discover why. They thought it might be because I’d taken him off his irregular heartbeat meds (more guilt! His regular doctor had him on some many meds, some that conflicted with each other and many with terrible side effects. Sometimes over the years doctors would put him on a med for something intending it to be temporary and then he’d switch doctors and the new doctor would never bother to take him off of the med or re-evaluate whether he really needed it. I decided if we were going to rule out drug side effects and interactions as the cause of his swallowing problems of late that I needed to take him off everything but the known safe essentials like his aspirin regimen and blood pressure meds- and he had no documented history of irregular heartbeat. When his heartbeat was “made” regular again with irregular heartbeat drugs but his pressure still didn’t come up they realized his non-sinus rhythm was actually a side effect of something else and not the cause of his problems. (A little bit of guilt relief for me there.) They ran bloodwork and discovered he had a severe UTI that had migrated to his blood.  More guilt: maybe it was something in the way we toileted him.They assured me UTIs are very common in the elderly regardless of toileting habits (my guilt eased slightly). The doctor said he must have been in excruciating pain. And more guilt: why why why hadn’t I thought to ask him if he was in pain while peeing?

They didn’t expect him to live through the night. A priest was called in to do last rites and I fell apart completely. Everything was crazy! How could this be happening?! Daddy always said he was going to live to 120! I called mom (still in the nursing home recovering) and told her. She in turn fell apart. Friends came to support us at the hospital.

Dad miraculously pushed through the night but his blood pressure dropped to critical levels several times. They had to intubate him and put him on a ventilator to help him breathe in order to keep him alive. They also had to pump his body full of dangerous meds to raise his blood pressure that they warned could cause organ failure. By Friday night they had cultured and isolated the specific bacteria: E Coli. They began targeted antibiotic treatment for it. His organs had already begun to fail and it was still a very poor outlook. And then…and then…he pulled another miracle out of his hat and pulled through after a few days. My God, he surprised everyone and pulled through! This entire time he had been nonresponsive and unable to speak but now…BUT NOW he could squeeze my hand when I asked him to and his white blood cell count was back down to normal.

With the infection gone and his blood pressure stable the doctors began to look for the expected cognitive improvements in responsiveness. There were none. They removed the tube- he could breathe on his own now- but he could no longer swallow at all or speak at all or move much. He eventually stopped squeezing my hand also. My heart sank.

The doctors were stone faced when they said he would likely never recover his full brain functionality. Because he was not able to swallow and not a candidate for a permanent feeding tube (too much risk of death, infections, or other complications) he would eventually die from lack of nutrition if he did not begin to show cognitive improvements that would enable him to eat before the temporary feeding tube had to be removed (you can only keep temp tubes in for a short time before they cause major problems). What a terrible and slow way to die. I was devastated. We moved him into hospice at the doctors recommendation and waited. It was sickening. Doctors advised that his organ failure was increasing and he’d likely die from this long before he died from starvation.  His liver and kidneys were close to total failure. He stopped producing urine. His platlet count dropped and so he was also at risk for bleeding to death internally.

At home I researched EVERYTHING I could get my hands on to find a way to save him. Medical journals, countless articles on the internet, just everything. I worked tirelessly for almost two days straight. There had to be something the doctors missed; another miracle. I found nothing. I was furious- at God, at doctors (doctors are supposed to save people…this is the damn 21st century, doctors aren’t supposed to tell you there is nothing they can do).

It had now been a week since he’d gone into the hospital and they gave him less than two days to live. He pressed on in hospice. He pressed on. He pressed on. Three days later his organs were close to full recovery. The doctors said it was another unexpected turn of events but that I shouldn’t hold out hope for overall recovery of his person. What a rollercoaster! He squeezed my hand once again. He tried to speak! I just prayed he would continue to improve and regain his ability to swallow and maybe he’d prove everyone wrong and make it. I dared to hope in the face of the doctors skepticism. I DARED TO HOPE. I prayed God would save him.

Now that it was obvious he might not die quickly, or even that he might not die at all in the near future, the hospice and hospital began pressuring me to take him home since his medicare benefit had been used up and he no longer qualified for acute hospital care since he was medically stable and needed custodial care (think nursing home) and not urgent treatment. Every day in the hospital was costing the hospital money that they could not get reimbursed for from medicare. But Daddy had no money for a nursing home and his medicaid app was still in process so no nursing home would take him. And we certainly couldn’t care for him at home in his condition so I refused custody of him. It was round after round of implied threats from hospice that I HAD to take him home or else and it was a nightmare. I eventually got the media involved and some health care policy experts to advise me on what the hospice could and could not legally do with regard to releasing him to the curb.

The battle with the hospice became irrelevant by the next morning (Friday March 4th). His oxygen levels and blood pressure started dropping again. It wasn’t lack of nutrition (takes longer than 3 days of not eating)  and it wasn’t his organs.  The doctors called me near 6am and told me to get to the hospital quickly.  I took the day off from work and spent the entire day at his side. I thought I was ready on Friday to say goodbye. I felt so peaceful and the day was beautiful. I could feel the presence of God or angels with us. I was ready for the big dramatic cinematic moment when he would breathe his last breath. I watched the rising and falling of his chest and at times nodded off to sleep to its rhythm. I noticed that his exhalations became longer than his inhalations and he began to fidget restlessly (its called terminal agitation and happens for everyone near death). Although he rallied a few times that day he died early Saturday morning in his sleep.

When the hospital called me Saturday morning with the news I fell apart again. I was so angry with Dad. WHY did he die when I was away from him for the night when I tried so hard to be a good daughter and be there with him all day Friday so he didn’t have to go through it alone? Within an hour I was at the hospital staring at his corpse. Literary Elly May and her husband accompanied me as did Jonathan to face my first dead body (I am forever grateful.) It is so unnerving to see a body unanimated- no breathing- perfectly still. I kissed and hugged his lifeless body; his face already cold.

And we left. And I wept. And I ate. And I wept. And I slept. And I wept. And the whole next week was just a blur. It all seemed unreal; like a bad dream I constantly prayed I would awaken from.

And then there was the memorial service (I published my eulogy a few posts down) which went well overall except the part where one of my estranged sisters started yelling at me in the church lobby. We are a complicated family.

I am so blessed to have the circle of friends I do who have been there for Jon and I though it all. It’s been a long road.

Previously when persons have mentioned that someone had died I always said I was sorry. Now when someone makes such an announcement it has deep profound meaning and I ache for them because I understand what they feel. It’s a kind of wisdom I wish I’d been able to stay ignorant of forever.


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