You may have noticed that I didn’t post in my series last week. Truth is, I needed a break from the angsty. While I feel that this series is important to write, and that I have come to a point in my life that it is necessary to purge certain things, all this exposure of my tender bits is difficult for an introvert like myself.
In the last instalment, I wrote about some of my encounters with death I had during the sixteen years in which I sorted my depressive condition.
I love my dad and that’s in the present tense because even though he’s gone in the physical sense, he’s still here with me every day.
In order to tell the tale of his last two years of life, I have to give it context and that begins with his birth.
Dad was the youngest of three brothers and in those days, they lived out at long lake. Doctors still made house calls for deliveries and that day he was running late. The woman attending my grandmother, I’m not sure whether she was an actual midwife, or just a family friend, but she told my grandmother to keep the baby in until the doctor got there.
In the story I was told, she said, “cross your legs.”
When the doctor eventually arrived and my father was delivered, he had a brain bleed (subdural haematoma) and almost died right there. He was given a poor prognosis, but he survived.
Dad was subsequently diagnosed with epilepsy as a child and was on medication from a very young age.
When I was very young, I was his darling. We’d watch wrestling on the weekends and he’d let me wrestle him on the couch. Good times 🙂
Then, he fell off the car-port roof, and was hospitalized for a while as a result.
In the years that I was catching all the typical childhood diseases: chicken pox, measles, and mumps (that was terrible, I had them one side at a time so it lasted twice as long as normal 😦 ), by dad was hospitalized for various other reasons.
He had his gall bladder removed. He developed a hiatus hernia, which was initially mistaken for a heart attack. He had surgery for that too. A haematoma developed after that surgery as well.
At home, he’d return from work absolutely exhausted, collapse into his recliner, and fall asleep before dinner was even ready. After dinner and the evening news, he rarely stayed up late, or fell asleep in the recliner again.
When I hit puberty, things changed again. I don’t think Dad really knew how to relate to me after that. His sarcasm became biting, not only with me, but also with my friends.
By then, the malignant hyperthermia had been detected in my family and he had to get tested for that.
Only a few years afterward, Dad suffered his breakdown and was hospitalized for three months as a result.
The spectre of mental illness
For a while, Dad was doing well. He was getting regular talk therapy and attending a support group. He started walking everywhere: down to the corner to pick up groceries, out to his get-togethers with the support group (they had coffee klatches outside group). It seemed, for all intents and purposes, that he was improving.
Then the therapist he was seeing indicated that their sessions would be coming to an end. Dad should look at trying to get his life back on track, maybe going back to work.
There was a problem with that though. His employer had disbanded his work unit and there was not job in Sudbury for him anymore. He couldn’t imagine trying to start over and I’m sure he had anxiety attacks just thinking about it.
Plus, he’d successfully gotten on a disability pension and was, I think, comfortable not working.
Soon, he stopped attending the support group and he stopped walking. He gained weight and developed sleep apnea. He also got prostate cancer and though a combination of hormone therapy and radiation put the cancer into remission, Dad suffered the usual after-effects of prostate issues.
His behaviour became more erratic as he went through his manic and depressive phases. When he was manic, he’d spend like crazy, buying things from the Shopping Channel and Readers’ Digest. He’d enter every charity lottery he could and spent hundreds on provincial lotteries.
Toward the end of one of his manic cycles, he’d always get struck with buyers’ remorse and his guilt took an odd turn. He’d start to accuse my mom of trying to leave him, or of hooking up with one of his friends.
When he was depressed, he slept much of the time and tried to undo his financial miscarriages until the next manic phase hit.
My mom was taking care of him as much as she was taking care of my grandfather. And she was still working. I worried about her.
Even after my grandfather passed away, Mom didn’t seem to get much time back for herself. Dad demanded (without really understanding that he did it) every bit of her spare time. Mom started to go out with friends more as a respite from his illnesses.
By then, he’s also developed an arrhythmia that required the insertion of a pace-maker and was in the early stages of Congestive Heart Failure (CHF). He started to fall and though his knees required replacement surgery, he was too overweight and his doctor wouldn’t authorize the surgery.
The beginning of the end
On March 4, 2010, I was part of the training team at work and away training. I got a call to my hotel room late at night. Phil had had to take my dad to the hospital. Nothing life threatening. I was coming home in another day, in any case, and so it wasn’t a situation where I would have to come home, but he just wanted to let me know what was happening.
When I got home, Dad was already out of the hospital. He was agitated and focused on financial matters. He’d taken to bed instead of doing his taxes and Mom was worried.
Things got stranger from there and on March 18, 2010, we had to call the ambulance to come get him because he refused to leave bed and refused to eat or take his medications. Earlier in the week, he had once again been obsessed with their financial situation. He kept telling Mom that he’d bankrupted them, and while she assured him that was not the case, he kept insisting that she had no idea what he’d done.
At first, Dad was in what was referred to as “ground psych” at the soon to be closed St. Joseph site of the Sudbury Regional Hospital. Due to his intransigence, he was catheterized, put on IV, and fed food and medications by syringe. He had to wear diapers as well, because he wouldn’t get out of bed, even to go to the bathroom.
Mom and I visited daily and tried to get him to eat. What made my heart hurt the most was how he screwed up his face like a little child and clamped his lips shut, turning his head away from the spoon. This was definitely not my dad.
He continued to say crazy things, that the police were coming to get him; that they were going to have a news conference and put him up as an example of government fraud. At the same time, he insisted that he didn’t need to be in the hospital. He was still convinced that he’d bankrupted himself and Mom (not possible as Mom had separated her finances years before because of his manic spending). He kept asking if we were living on the streets yet, had the bank not foreclosed on the house?
He thought his “fraud” so widespread that it even affected Phil and me, though we were both working full time by this time and doing well by all accounts. I even told him that we had enough to support Mom, if she needed it, but it made no difference to Dad.
From ground psych, Dad was transferred to the Laurentian site of the hospital on their psychiatric floor. It was determined that he had suffered a psychotic break, and though not violent, was living in delusion.
We still visited him daily and though still stubbornly clinging to his delusions, Dad eventually started to eat, got off the IV, and through our insistence started the process of getting the catheter removed and out of his diapers.
The psychiatrists on the floor could get nothing out of Dad after a while. He decided that he’d just not talk about his delusions anymore if they got everyone into such a fluster. They transferred him out to the medical floor as they could do nothing more for him, and he didn’t appear to be a danger to anyone.
On the medical floor, Dad succumbed to C-Difficile not once, but twice. He was very inconsistent with his toileting, and remained in diapers. He was so weak that he couldn’t get out of bed unassisted anymore.
At that point, we were in the position of having to get Dad into a nursing home. The hospital couldn’t continue to care for him as a patient. He’d already been there for five months. Mom couldn’t care for him at home, as the hospital initially suggested. There were stairs, and she couldn’t lift Dad on her own. Home care could be inconsistent, and would only cover so many hours in a day. What would happen at night should he fall or something else take place?
So, we had a family conference with the attending physician, the social worker, Mom, Phil, and me. Dad seemed to understand what was going on and didn’t object to it. Mom would have to do some financial manoeuvring to make the arrangement work.
You see, as soon as Dad was in the queue for a nursing home, he was considered an “alternate level of care” patient. Even while he was in the hospital, he’d be charged the ACL rate, which was about what a nursing home would have cost.
Mom had to file papers for “involuntary separation” so that she and Dad could file their taxes completely separately, for the first time since they were married.
In ensuing weeks, the social worker guided us through the process of selecting a nursing home, and every time my mom signed a form, we were careful to ask, what does this mean?
Dad was transferred again to the hospital’s ALC facility while he waited to be placed in a home. It was fall by then, and Dad caught C-Difficile at least twice more. Mom and I became very adept at gowning and gloving before we went in to visit him.
Nurses redoubled their efforts to get Dad out of his diapers and physiotherapists tried to get him up and out of bed. Sitting upright for a while was all he could manage. He never supported his own weight again.
Eventually, Mom received the news that Dad would have a bed at Falconbridge Extendacare. We went in for the intake meeting and left with a mass of reading material. The place seemed ideal, though.
If Dad could eventually get mobile, even in a wheelchair, there was a pub (the main floor dining room was taken over by a musical group for the evening and they’d be allowed a beer if they wished), an interdenominational faith service several times a week, and an activity room with everything from the internet to flower arranging courses, and they kept canaries and parakeets for the residents. There was a garden to putter around in outside if he wanted as well. If he wanted.
The move took place in December of 2010 and Mom and I were impressed with the care he received there. She still went out to visit him every day, but back in the summer, I’d cut back my own visits to 2 or 3 times per week. Because of my training obligations, there were some weeks in which I couldn’t visit at all.
Things again began to look good for my dad. The care was far more consistent at the nursing home, and they were fitting him for a wheelchair. Mom and I were trying to figure out what his plan would cover and how much extra she could afford to pay for one when Dad set his heart on having a motorised wheelchair.
On Monday, April 4, 2011, Dad was zooming around the halls on what was to become his loaner chair pending the fitting and financial approval for the one we would purchase. That night, Mom and I were called out to the nursing home. Sometime after he’d been put to bed, Dad’s CHF went into overdrive and tried to drown him.
He was labouring to breathe, in-and-out of consciousness, unable to speak. He’d shake and moan from time to time. The doctor and the minister both came out to talk to us.
Dad was a DNR, that is, no extraordinary measures were to be taken to preserve his life. He was declared palliative and all medication but those used to keep him “comfortable” were withdrawn. Mom and I set up a vigil with one of Mom’s friends.
We stayed with him throughout the week and many friends came to visit him. After the first couple of days, Dad didn’t regain consciousness. Though I brought books and my laptop to help pass the time, I often sat and just watched him breathe for stretches, held his hand, changed the cold cloths on his head and behind his neck, swabbed his mouth with a damp sponge.
On April 9th, Mom came to relieve me for the evening shift and I went home to bed. Just after 11, she called and told me to come back right away. Dad passed away before I got there.
I was still able to say goodbye, though. What was more important was that I had spent the time with him that week, bearing witness as he taught me what it was to die. Really, he was showing me all along, and I treasure every moment I spent with him, even the difficult ones.
This is what I characterize as my season of sorrow: from the beginning of March, when he started to show signs of his psychotic break, through March 14, his birthday, March 18, the day he was admitted to hospital, April 4, the day he took his turn for the worse, April 9, the anniversary of his death, and April 15, the anniversary of his funeral.
In a maudlin mood, I might extend that as far as Father’s Day, but a month and a half is enough time to dwell on death.
At his funeral, I read the following poem. Afterward, I created the picture and we had copies made for the family.
Dad had a nigh on miraculous ability to float. He could lie on his back in the water, put his hands behind his head, and just float, head, belly, and toes all poking above the surface. He was unsinkable. My cousin swears that he caught Dad sleeping that way. I like to think of my Dad floating away in the afterlife, still unsinkable.
I chose The Water is Wide by Connie Dover as a song for the funeral recessional as well. Though it’s more of a love song, the water theme prevailed. While Dad’s gone before her, I like to think that he’ll be back for Mom with the boat when the time comes.
Sadly, I couldn’t find a version of the song to share with you, but I encourage you to give it a listen. Connie Dover has one of the world’s most beautiful voices.
Next week, the final episode of a life sentence with mortal punctuation: Thoughts on Happiness. That’s where I’ll tell you a bit about what my experiences with death have taught me about living.
Have a great evening, everyone.