Missing Dad

In spring of 2015. I left Spokane WA to move closer to my (Felicia)-Mom and Dad in Centralia WA. My main reason was inspired from conversations I read online about adult children adding an ill parent to their household, or making accommodations in an extended care facility. It got me thinking, Mom and Dad are in great health, and these are years I want to spend with them. I don’t want to wait until they are in bad heath and scramble to make a place for them, I wanted to build memories.

The move was fortuitous. Only a year after my move, in October 2016, Mom was diagnosed with aggressive brain cancer. I cherish the time I’d had with her, and was glad to be close by to act as her hospice care in her final month—yes month, she died less than a month after her diagnosis. I was also able to take care of dad as he adjusted to a life without his partner of 30 years.

In the 20 months since Mom passed, Dad and I did a Dad-Daughter trip to Arizona, and spend hours together watching tv programs, taking drives, running errands, puttering around the yard (on some beautiful sunny days, puttering required a beer and a folding chair). I helped do all the little tasks Mom did: pretty much anything on the computer, reconciling credit cards/bank statements, and helping him navigate technology (e.g. a new cell phone, or hooking up electronics). Life was good, and I enjoyed relearning my dad’s irreverent sense of humor, battling wits with terrible pun exchanges, and quiet evenings when we reminisced about Mom.

On December 20, 2017 dad was rear-ended at a stop light. He stopped, the car behind him didn’t. Dad now experienced an area of pain between his shoulder-blades that was so debilitating he could no longer enjoy his daily walks, golfing, or vigorous ballroom dancing (he went for the social aspects, but was limited in his dancing and needed frequent breaks while the pain subsided). He found simple household tasks would trigger the pain—similar to an intense spasm—and he required more help around the house for laundry, dishes, cleaning, etc. He even hired a yard service as he couldn’t use his lawn mower.

After six months of doctor appointments, x-rays, physical therapy, massage, acupuncture, more physical therapy, a different acupuncturist and masseuse, Dad’s primary physician determined dad may just have to resign himself to a life of pain. We decided to get a second opinion—obviously something was wrong. We found a neurosurgeon who recommended a contrast MRI and a CT myelopathy (sp?). Lo, and behold, dad finally had a diagnosis: traumatic arachnoid cyst under the spinal cord at T6-T7.

Surgery, a laminectomy, was scheduled for July 17, 2017 in Olympia. We were excited to finally see a light at the end of the tunnel—little did we realize, the light was an incoming train. Post-surgically, it was discovered Dad had a damaged heart and required immediate surgery—another one. The decision was made to transfer him to Seattle to a hospital better equipped for the bypass required.

On the night of July 17, 2017, Dad was transferred by ambulance with an arterial catheter still in place and a balloon pump in his groin. This meant he was immobilized, on his back, unable to leave his bed until the heart surgery was performed on July 20^th. Apparently two arteries were severely damaged and the heart scarred. The doctor says Dad must have had a heart attack at one point, even though he’s never had heart issues such as chest pain or shortness of breath. A stent was still needed in the other artery, but doctors wanted to let him gain a little strength before the procedure—another catheter.

The next days were a whirlwind of activity, not to mention interesting drug-induced delusions, ranging from “the tall man changing water canisters on the ceiling,” to smoke in his room that caused him difficulty breathing (the reality is he now had water in his lungs). We got through this, but Dad remained in bed until his stents were inserted on July 24^th—the day before his 82^nd birthday.

It was a cause for celebration when dad was helped from the bed to a chair, but this also emphasized how weak he’d gotten from being on his back. He found he couldn’t sit on the edge of his bed without assistance, as he kept listing to the side. The PT people got him moving around with a walker and a belt, so they could catch him as he wobbled, but it was clear he had a way to go before he could be independent. It was due to his weakness and the fact Dad lived alone, we decided to transfer him from the hospital to a rehab facility so he could gain back muscle tone and get 24/7 care. His balance improved over the next couple days at the hospital, and his pain decreased to manageable levels. The insulin shots and finger-pricks to test glucose levels, were an annoyance, and dad was looking forward to eating real meals and discontinuing the tests—his fingertips were covered in pin-holes and blood-blisters.

We found a local rehab facility, within a mile of Dad’s home, and were excited to get him on the road to recovery. He was released with instructions: No bending, no twisting, and no lifting more than ten pounds. Dad was transferred by Cab-u-lance (yeah, that’s really a thing), for a grueling 4-hour trip through I-5 traffic—all the while sitting upright in a wheelchair. Dad was tired when he arrived, and fell asleep almost immediately after he was placed in bed.

The next morning, Saturday July 29^th, I arrived at 7:30am to find Dad sitting in a wheelchair sweating so badly his shirt was glued to his chest and his face and head were wet with perspiration. Dad was in pain, a result no doubt, of the long trip in a wheelchair the prior night. The hospital hadn’t released Dad with a pain-reliever prescription so all he could get from the rehab facility (30-min later) was Tylenol. I was assured the nurse would attempt to get authorization for a stronger pain medication. Twenty minutes later and still in a lot of distress, Dad wanted to transfer back to the bed, so I pressed the call button. An aide showed up roughly 15-20 min later and I told her I wanted help getting dad in bed and could we get an update on the prescription. By 9am, there was no nurse follow-up to either of my requests and Dad was to the point of dragging himself back onto the bed himself (remember the no bending, twisting rule?). I walked out to the nurse’s station and was told Dad’s doctor (his general practitioner) was on vacation and they were stull attempting to find a doctor to authorize the stronger medication. I told them I had his back surgeon’s personal cell number if that would help, but my immediate concern was getting Dad in bed, and I was disappointed that no one had come back to help when I requested of the aide. The nurse told me they’d get a doctor to approve medication, and if I wanted help with dad, I should press the call button…yep, the same one that took over a quarter hour to get a response to just an hour before. “Fine,” I said, “I’ll do it myself.” I was in the process of helping Dad into bed when help arrived—thankfully, I was worried I’d do more harm than good, but Dad wasn’t waiting any longer. Approval for Oxy cam at approximately 10am, and another half-hour later, he was finally given a dose.

Not the most auspicious introduction to the quality of care he would receive at the facility.

I went home while he slept to take care of my dog, and returned a few hours later to find him undergoing a mental evaluation. I’ll admit, I got a kick out of some of Dad’s responses, it was obvious Dad had no interest in the testing and found it a waste of time. Considering how much pain he’d been in earlier that morning, he did pretty well, but when you ask a man who’s spent 10 days flat on his back, in a semi-drug-induced stupor what day and date it is, you have to expect not knowing isn’t a result of losing his mind, so much as he hasn’t seen a calendar in two weeks. When the test was over and the examiner was telling Dad he’d be happy to come each day to help dad regain the ability to be on his own again—I had to step in. “Before you came in here, did you check to see what medications he’s on?” “Huh?” “You do realize he had OxyContin within the past 6 hours, right?” I have to wonder, are they seriously so clueless they don’t check records to see what medications a patient is on before they do a mental evaluation? Is it intentional? A way to show a low baseline and show great progress before the final exam score? I’ll take another opportunity to emphasize, Dad was there for medical rehabilitation—he’d had two surgeries and a stent procedure before transferring to rehab the night before.

I found over the next two days, call button response ranged from 5 to 20 minutes, and was never answered directly by a nurse (even though dad transferred as a medical patient, not an Alzheimer or dementia patient—so I found this disappointing, but I understand this is common). I found his call button clipped to his pillow (which doesn’t help, as he couldn’t twist to find it). I was also surprised there were no wall or door signage to distinguish my father as a medical patient, as opposed to a mental patient. One poor girl was growled at (by me) when she came to help me roll dad and she almost placed her hands over his heart surgery incision. Dad complained to me that aides who boosted him higher on the bed didn’t seem to know about the surgery to his back and often hurt him when they slid hands right over the scar and applied pressure. I remember showing up Sunday morning to find Dad in his wheelchair—the aide was preparing to wheel him off for a shower. “Are you planning to cover all his incisions with plastic or something? I’m pretty sure the hospital said the bandages had to stay dry for the next week or so. The aide dashed out of the room to check with someone (nurse?) and returned to say Dad would be getting a bed-bath instead. Again—why were decisions being made without regards to his medical condition and hospital release instructions?

People had a tendency to talk to me, ignoring dad, as if he couldn’t answer for himself. I worried constantly if he was being monitored properly as I’d never been present when (or if) his blood pressure was taken, or if his glucose was being monitored since he was taken off insulin. I also questioned the nurse because Dad was not considered a “Fall Risk.” I found this odd, as he could not walk unassisted, nor could he get into or out of bed by himself due to the “no bending, no twisting” rule. Dad was on a couple of blood thinners, also, so a fall had the potential to be life-threatening if he suffered a serious injury.

My story comes to an end on Monday, July 30^th when the rehab center called me at 6:30am to inform me Dad had fallen and was being taken to the Emergency room. I remember being so angry, positive he had been trying to get to the bathroom, and wondering if he was still on Oxy or if he’d tried to use the call button (assuming it wasn’t pinned to his pillow again). Last time I’d been in his room, his walker was across the room, so if he got out of bed himself, he had an unsteady couple of steps before he got to reach the walker. Dad died in the hospital less than an hour later.

He’d been doing so well and was in great spirits just the day before. Although the coroner didn’t feel the circumstances warranted additional investigation or an autopsy, I’ll always wonder if I could have done more, and been more aggressive in seeing to his care. So many unanswered questions, and I’ll always wonder if his death was negligence, or a tragic accident.