Category: caregiver

Types of grief

It seems that a lot of content I write here starts its life on one of facebook’s widow(er) groups anymore. Today, there was a question regarding whether, having been Kim’s caregiver, that the time of grieving after she passed is reduced since we knew for so long what was coming. My answer is “No; not really.”

Though we who were also caregivers knew our spouse was going to die, our spouse was still with us. There was grief at the knowledge of her imminent death, but it is not the same grief as induced by the finality of the actual loss. While Kim was still with me, I could talk to her, care for her, hold her hand. There was an air of sadness about the whole affair; however, there was also hope. While she was still alive, she could have had months remaining; she could have had years – the endpoint wasn’t defined. And: where there is life, there is hope. We constantly hoped and prayed for a miraculous cure for her, even up to her last breath. When she had passed, that hope for a miraculous cure passed with her (though, yes: God is capable of anything). There was a permanence about the loss that did not come with the foreknowledge while she was still alive.

In short, I believe that you really cannot prepare for the sort of grieving that comes from losing your life’s partner. No amount of forewarning prepares you for the experience of literally having half your heart and soul torn away from you. The grief experienced by one who was a caregiver is really no different than that of one who was not. Even the shock of the actual loss I experienced sounds a lot like that of those who lost their spouse quickly or, even, suddenly. I guess if anything, those whose spouse’s passing is expected get a little extra dose of grief through the forwarning.

Constancy and devotion

Yesterday, I was reminded of something my sister said to me – actually, a combination of things two of my sisters said – when Kim passed: “You stood like a loving sentinel over Kim, standing at her side with constancy and devotion. No woman could ask for more than that.”

It’s high praise, and I hope that it felt that way to Kim. It certainly didn’t feel that way to me at the time.

The term “constancy” also relates back to several other posts in which I’ve discussed our relationship. We each stood by the other through various trials with constancy. Though we had our doubts regarding the soundness of doing so at times, we never wavered from our commitment to each other; we stood by each other, sometimes angry, sometimes hurt, but always in and with love.

I related in the past how the social worker assigned to work with Kim and me through her hospice told me of families that sequestered their dying relative, removing them from the centrality of their family. This is inconceivable to me. Kim was hospiced in the front room of our hour – the living room. This offered some challenges to the management of our home; however, it allowed us, as a family, to be with her constantly, and it allowed her to be with us. She wasn’t behind a closed bedroom door; she was right in the middle of things. No-one could come or go without seeing her, and she loved it. We were able to sit with her and watch her favorite movies with her. We could involve her in everything, even when she could no longer walk around the house with us. To me, it just felt like the right thing to do, and my role felt like my duty to her.

The house, even to this day, has not “recovered” from the living room being converted into Kim’s room. The furniture that was discarded in order to make room for her bed has not been replaced. Eventually, it will be remade; remodeled – but today, it still serves as one of many witnesses that Kim was here. A reminder of all that went before, and how, at least in this life, it ended.

And so it begins…

The date is 18 April 2020. Kim isn’t feeling right, and hadn’t been for at least a month. But COVID. She didn’t want to bother her doctor with what she thought was an ulcer. 18 April 2020. Kim is just so uncomfortable. She finally calls our family doctor and explains her symptoms. Suspecting a bowel blockage, he advises her to go to the hospital to get checked out. But COVID.

My daughter being a critical care nurse already dealing with COVID patients, we figured she’d have the best chance of being allowed to accompany Kim to the emergency room, so she took Kim instead of me. No dice, though – she isn’t allowed to accompany her into the hospital. Kim is admitted, all kinds of tests, a CAT scan… A text hits my phone from Kim: they think it’s cancer.

18 April 2020. When she is admitted and is brought to her room, she calls me. “I have cancer,” her voice came across the ether with a pleading note. I’m dumbstruck. “They think it’s pancreatic.” I’m devastated. My beautiful wife – my life partner – has just received what amounts to a death sentence, and I’m 30 miles away. Because of COVID.

18 April 2020. I pray – I beg God – that it is not pancreatic cancer. I can see her test results through the patient portal. A tumor marker – Antigen 19-9 – is over two hundred times higher than what is considered high baseline. It is definitely cancer, and, because 19-9 is its harbinger, it’s pancreatic.

They keep Kim over the weekend to get her electrolytes back in order. We have several Facetime visits – it’s the best we could do because COVID mandates disallow any visitors. Since I know the Ring doorbell buzzes her phone every time someone moves on the porch, the kids and I take a second at the door to tell her we love her before continuing in or out – just in case she peeks in on the app.

And then, on Tuesday, the consult – via Facetime – with the hospital oncologist. It’s definitely pancreatic, and it has spread to her liver. As is typical with that ugly disease, it has metastisized before presenting any symptoms. The doctor describes the standard of care, which is predominantly chemotherapy to extend life. Life expectancy was cited as 3-6 months without treatment; 11 months with.

We got about seven and a half.

They discharged Kim on Wednesday. I picked her up, and we drove home. Oddly, I cannot remember anything from that trip besides her being brought to the car in a wheelchair, and everyone wearing masks.

We consult with two other oncologists – one suggested by our doctor, and one treating a friend’s aunt for pancreatic cancer over the past seven years. Both say pretty much the same thing the hospital oncologist did. There were also no first-line trials active and open at the time. We decided to stay with the oncology department of the hospital who initially saw Kim.

Due to COVID, there was a long delay in getting a port and starting chemotherapy, too. After what seemed an eternity, they finally put the port in 8 May, and she had her first chemotherapy session at the hospital – their local cancer clinic was closed (you guessed it!) due to COVID – on the 11th. She had opted to pursue the more aggressive therapy for pancreatic cancer – Folfirinox. Chemo every other week.

Kim actually did very well on this regimen. She was a bit wiped out on day 3, after the take-home pump was removed, but only got physically sick from it after her first treatment – this likely having more to do with the half hour drive, as she was always prone to carsickness.

God didn’t forsake us, either. Despite not granting me the miracle I constantly prayed for with “Garden of Gethsemane” fervor, he did arrange things to make this ordeal easier on us than it could have been.

I had spent the majority of our 30 years together on the road for my employer, Ford Motor Company, launching vehicle body production systems in far flung plants. Even when I lucked into an assignment at one of our local plants, it still meant 12-14 hour days pretty much seven days a week – I had just finished one of those in January when my employer decided it was high time I “flew a desk” and headed up a section of engineers in the home office.

Then, due to COVID, my work had been moved from the office 20 miles away to a workstation in my family room. I was home 100% of the time, and able to give Kim whatever care she required. Many meetings were held using my iPhone and my Surface behind the wheel of my pickup truck as I sat parked at the hospital where I had just dropped Kim for an appointment, a procedure, a test…

It sounds funny, but, in this regard, the COVID hysteria was a godsend. My management also gave me a lot of latitude with my assignments and deliverables which helped a lot with caring for Kim.

And, until mid-October, Kim was fairly strong and ambulatory. We took at least daily walks through the neighborhood, picking up gum tree seed pods and pinecones for her next craft project – pinecone wreaths for the girls! We also went through the local park with her iPhone on a selfie stick so that she could have some recent pictures with us together (and our youngest daughter). We would sit on the couch together evenings, holding hands and watching the 1960s series “Dark Shadows”, laughing at its campiness, but still fascinated enough with it to watch episode after episode. We unfortunately didn’t get the opportunity to finished watching the series.

Kim said we grew closer to each other during this period than we had been during our entire marriage, and, frankly, I have to agree.

And then came the next scan – the one we just knew would be full of good news! Not so: it showed that the growths in the liver had stopped, but those in the pancreas continued to grow. It was decided after a brief respite that they would switch to the less aggressive, but equal standard of care: Gemcitabine and Abraxane. Kim tolerated this chemo pretty well, too, but the neuropathy was hell for her – instead of the intensity of cold sensation that came with the Folfirinox, this one was taking feeling away from her.

Then the day came that Kim did not have enough feeling in her fingers to work on the quilt she was making for the car to use for winter chemo trips…

Her 12 October chemo was declined due to her blood numbers being too low. At her next palliative care appointment (one in which I got the building wrong, and made her very late), the doctor stated that it appeared the second course was destroying her liver. She suggested that Kim consider hospice, and then asked what I thought. And I simply broke down. It was 15 October.

Kim and I talked on the way home, and she decided that she agreed. She had had enough of the chemotherapy and its side effects. We drove around a little while to look at the fall colors that were all around, but then Kim had to use the bathroom, so we wrapped up our color tour and went home.

We were trying to decide on what hospice to pursue – we wanted in-home; not institutional, and were really ill-prepared to make this sort of decision – plus the hospices were having apparent difficulty getting any information to us via the (good ol’, dependable…) US Postal Service, so it went a bit longer than the Oncology department expected, I guess – when Kim had a lymphedema episode that scared her. She called the oncology department only to be told that she was a hospice patient now – call them. I was furious, but we called Angela Hospice, and they had their triage team out the following day – about 11 days after she opted for hospice.

Kim declined pretty quickly after that. Within a a few days, she could no longer make it up the stairs, even with my assistance. A hospital bed was brought in and set up in the front room, and I stationed myself in the easy chair in that room. She could still get up with my assistance to use the restroom, eventually requiring a walker, and me to help her get up off the toilet… then, when that became too much, a bedside commode. Sometime during this, I developed some vestibular issue which affected my balance. I opted to “deal with it” rather than take a chance on being pulled away from caring for Kim.

Kim started what the Hospice nurse called a “terminal fever” on 16 November. Her breathing was horrible to listen to and sounded so croupy. Eventually she coughed up some nasty yellow phlegm that I was able to clear from her mouth, and she settled into normal sounding breathing and looked rather comfortable. About this time, she could not manage the bedside commode and was catheterized. The only words I heard from Kim in her near comatose state after this was that she had to pee. She tried to say other things on occasion, but no sound came and, when I’d move my ear to her mouth, she hadn’t the energy to repeat it. Isn’t it crazy that those are the most vivid of the words I remember from her? “I have to pee” in a panicked whisper…

Eventually, Kim could no longer take sips of water or swallow her pain pills. There were three: two were available as liquids; one was not. I became quite expert at measuring out the liquid medications, then dissolving the third in them, then taking them all up into a syringe to squirt into Kim’s mouth every eight hours. At first it was easy as Kim could close her mouth around the syringe and swallow, followed by a syringe with water flavored with Body Armor or apple juice. Eventually, though, she was no longer cognizant of this activity, and care had to be taken to ensure (a) she didn’t choke on the medication and (b) that it didn’t simply run out of the side of her mouth. I lived terrified that she was in pain, and that I couldn’t tell nor do anything to help her.

The choking breathing returned about two weeks later, on the 29th of November. Her nurse was due to come in on the 30th, but called to say that she had been treating a patient with COVID, and would need to change her clothing; and asked if it would it be OK to stop in on the next day. I told her it really didn’t appear to matter, that I didn’t expect Kim to be here much longer. And, at around 2:42 am the next morning, 1 December, Kim left. I had awakened to use the bathroom, or perhaps it was because I sensed something different, but when I woke up, she was no longer breathing. Her fingers were still warm, so she couldn’t have been gone long. And she was smiling. By God, she was smiling!

It’s odd what the mind does at times like these; what we do. I arranged a blanket to nestle her head. I said a rosary, the Divine Mercies, and the St. Michael Chaplet over her. I removed Kim’s Miraculous Medal medallion and hung it on the crucifix next to our bed. I removed all the equipment that did not belong to the hospice from the room. And then I called the hospice to let them know she had passed. The woman on the other end was the initial nurse assigned to Kim when she entered hospice (we’d had two since).

A fourth hospice nurse arrived shortly after my call, checked what needed to be checked, disposed of the Class 2 medications, contacted the medical examiner and funeral parlor; and then left. Sometime during all of that, I contacted the kids and let them know. Those who lived out of our home began showing up – I had told the funeral home to give us until about 9:00 am to ensure we all got an opportunity to say goodbye. They came promptly at 9:00 am, moved Kim to a stretcher, and she took her final trip away from home.