Lessons Learned II

Lessons Learned II

My husband summed up his thoughts in the last Caregiver’s Diary on what he has learned about death and the dying over the last two years, as he lost his mother and father.  My father, Gordon, passed away on October 27, 2011, and has also been referred to in this Diary – the guy with the big white Cadillac, who never had to hang up his keys.   I agree with a lot of what my husband said, but my experiences with losing my father were somewhat different, and I have a few other thoughts to share:

Death Cannot Be Managed

My father was diagnosed with esophageal cancer in December, 2010.  He went through radiation, but never really got his strength back and died 11 months later. We met many lovely people during this period, the surgeon who put in Dad’s stent, his initial surgical oncologist (surgery was not an option) and his palliative care doctor, who ‘managed’ his case for the final months. She put him at ease, patted his hand, adjusted his pills, and reassured us about how his final days would go. There was a ‘system’ in place – so that when the inevitable final crisis hit, he would hopefully not go to an emergency ward, but alert some kind of palliative hotline. A nurse would arrive and administer to him from a kit full of drugs that would have been given to him in advance. My father was fuddled by this – as was I.  Were they planning to ‘put him down’ in his own apartment to the soothing strains of Enya?  We were too disturbed by this scenario to ask further questions, and had a coffee and donut instead.  

As it turned out, Dad got a nasty cold, which seriously dehydrated him. The cold was treated, but the dehydration was not.  It  was missed somehow by the palliative care doctor. Dad weakened and fell in his apartment, couldn’t get up, and had to call 911 himself - from the floor.   An ambulance arrived and carted him off to emergency  - the one thing the ‘system’ had been trying to avoid.  He died there two days later. 

So be wary of the ‘system’ – and take the word ‘manage’ with a grain of salt. It could go a million different ways at the end  - and usually does.

Never Leave A Sick Parent Alone In Emergency

You are their last best friend there – and like a comrade-in-arms, you must never desert them.  My Dad was brought in to a mad house, and my sister and I waited for hours until he could be treated. The doctor on call finally saw him at 3 am, stabilized him with fluid drips, and told us that a bed had been found for him in palliative care. We left at Dad’s own urging and returned the next morning to find that the bed had vanished, he was on a stretcher in the hallway, and he seemed visibly weaker. We stayed all day – spoke to the nurses, who assured us that he was stable, was being rehydrated, he had eaten his breakfast well, the palliative care doctor had been by and had actually signed discharge papers for him for the next morning.   Dad did eat his lunch with us, some of it, but seemed tired and napped mostly.  Again, we were assured that was the best thing for him.  So… we finally left that night to get a bit of sleep ourselves. Once home, I called the ward again, at 10 pm.  I was given every assurance in the world that he was stable and comfortable. 

The call came at midnight – he was in distress. A ‘catastrophic event’ had occurred.  They weren’t sure what it was, but he couldn’t breathe and was failing. Did we want heroic measures taken?  …No. We raced back to the hospital in pouring rain and were told by a phone call, as we entered the emergency ward, that he had passed away 10 minutes before.  The oncologist on call did not know my father and was truly horrible.  A compassionate male nurse pulled us aside and told us about the last moments of my father’s life – he was with him and said that Dad was full of peace. That nurse was one of those angels that I believe present themselves at such times.  He saved my sanity.

For the rest of my life I will regret leaving my father that night.  So don’t do it. Tag team with family, call in friends, anything.  Don’t leave your parent alone on a stretcher in a hallway.

Get Past Your Own Fear Of Your Parents’ Death

Losing my father was the greatest fear of my life. And when he was diagnosed with cancer, that fear went off the dial.  It prevented me from fully using the time we had left to really say everything we wanted. I am not talking about forcing Dad into touchy-feely conversations for my benefit. I am talking about taking any opening he might offer, and responding honestly in the moment. Until the last week of his life, we never even said the ‘death’ word. I think he could sense that it would unhinge me and was holding back to protect my feelings. But as he fought off his last cold, we sat together and he suddenly said, “I think I’m dying, and I want you to know that I feel absolutely serene about this.”  Big silence. “Are you okay with that?”  I remember that I wanted to burst into tears, run away to Paris, maybe, but this was important.  I told him that I wanted what was best for him, and that I believed in my heart there was a natural order to things.  It was a strangled response, but Dad was a scientist and liked the ‘natural order’ thing.  He seemed relieved. From that point on, we seemed to talk more easily and in his last few days, he told me stories about him, and my late Mom, about all sorts of family secrets and scandals. I couldn’t ask the questions fast enough and he laughed and cried and mused and remembered, and we had a really great time together. My fear of losing him had finally given way to my enjoyment of his company for whatever time we had left.  

It’s A Huge Loss

For most of us, losing your final parent is a profound loss. You are an orphan. Don’t underestimate how hard it will hit you. You will want to call them, email them, run to them when life defeats you. And they will be gone.  And if you are childless, like I am, the feeling is even more curious. There is nothing to pull you forward into the future, and nothing grounding you any longer in the past. This feeling persists, so it’s important to reach out, cultivate friends, community, form new ‘family’ – anything that will start connecting you again to other human beings. I lost my bearings for over a year after Dad died and I’m just starting to get them back.

My parents and parents-in-law were part of the war generation, who are passing quickly. They have left me with a legacy of fortitude, self-reliance, and common sense. Their values were hard work, fiscal restraint, patience, kindness and accountability. They were far from perfect, but they were glamorous, and knew how to have fun. They danced, drank, smoked cigarettes, had fabulous music and made me laugh.

It was a privilege to have known them. 

Lessons Learned

Lessons Learned

I have been chronicling the deaths of my mother, my father-in-law and my father for the last 2 years. I have learned some things about death during that time, and it’s appropriate that I share them here.

Dying Is Hard Work

It takes effort to die. Getting up in the morning is hard, dressing and washing is hard, eating is hard. Grinding through the pain, the depression and the discomfort requires a strength of character I believe most people don’t discover they have until they start dying. The effort required will almost always lead to frustration and anger. The secret is not to personalize this anger. It’s directed at the disease or infirmity, not the caregiver.

Doctors Know Nothing About Dying

For the most part, GPs and specialists know very little about the mechanics of dying, and their innate need to fix things often gets in the way of dying well or comfortably. Doctors in med school spend very little time on end-of-life or palliative care. Their instinct is to fix, to cure, to dose, to intervene. There are doctors trained as specialists in palliative care, and they are rare and precious as rubies.

My mother’s long-time GP mixed up her anti-nausea medication so that it actually made her sicker when she ate. She wouldn’t prescribe significant pain relief, and she wouldn’t come clean with my mother on her life expectancy. Once we hooked into the local palliative care network, though, everything changed. Her new doctor was intimate with death, a friend of the dying, and supremely knowledgeable.

When it came time for morphine, the palliative care doctor didn’t dispense capsules on a daily basis. She gave mother a big bottle of liquid morphine, carefully told her it tasted pleasant and that the whole bottle would kill her painlessly if she didn’t take care. She left it at that. Delicate, and yet definitive.

The Dying Need Their Dignity

Dying is the ultimate loss of control, so control over lesser things becomes critically important to the dying. My mother was adamant no one was going to see her on her death bed except the doctors whose business it was to be there. In fact, she forbade visits from her children after the cancer she died from started to affect her looks. My father and Kathie Rose the caretaker were the only ones she saw in her last months.

Even as he approached death, ravaged by cancer that wouldn’t allow him to eat, my father-in-law found driving his big new Cadillac an important release, taking his elderly friends for doctors’ appointments and shopping.

My father, in his last days, resisted being moved to a higher level of care in his retirement home, despite the fact it was needed, because they kept the “droolers” and the “zombies” on that floor, and he had all his marbles and didn’t belong with them. Also, he would be reduced from his 3 room suite to a single bedroom and, despite the fact he never used the space in his suite except the bedroom, this was seen as a demotion.

The Dying Drink Too

My mother was drinking wine as long as she was drinking anything. My father hosted a big dinner party with all his children the night he died, and he enjoyed a couple of glasses of wine with dinner. My father-in-law, although he almost quit his scotch habit after his diagnosis, still treasured a wee dram on special occasions. “Nuff said.

The Dying Really Don’t Have Time For You

The survivors think it’s all about them. How sad they are, how much they’ll miss the dying, how important it is to say that special thing, make that final contact and correct a lifetime of misunderstandings. Oddly enough, the dying don’t care much about that. They have a hard job to do, and it takes up all their time. A palliative care nurse once listed the top five final regrets she had heard from the dying, and the most common was “I wish I hadn’t spent so much time on my children and spent a little more time on me”.

This is what happens at the end. Fear and pain are constant companions, uncertainty and regret the norm. There is little time to worry about the spectators. The best and most helpful thing caregivers can do at the end is manage pain, comfort without judgment and listen. Mostly listen.

Another Aftermath

Another Aftermath

Stories and memories of my widowed 89 year old father started pouring in by e-mail and phone the day after he died, prompted by a posting on Facebook of a lovely picture of him in his last weeks, still smiling and still hale.

Many of the messages had the same theme: dad was gregarious, welcoming, always up for a drink or a talk or a loud meal, always reaching out to people and overseeing his argumentative brood. Friends from 50 years ago, with whose children we had played wrote” Our first day in Connecticut from England, and we saw your dad striding up the drive, bottle of wine in hand, asking us to dinner”.

This was typical behaviour. Once, at Christmas in Montreal, we encountered a bunch of hippies (that’s how long ago it was) in a school bus on Mount Royal. Dad asked them all for dinner, and then called mum to tell her. I have a photograph of every chair around our big kitchen table filled, strange young happy men and women, us kids, and dad with a big jug of wine at his feet.

For that was where dad exists in everybody’s memory who knew him. Sitting at the head of a kitchen table, big jug of wine at his feet, presiding over a noisy table full of children, guests, old friends, hangers-on and dogs.

His other natural element was at the wheel. He always commuted long distances, and he always had interesting cars to do it in Two Citroens, a Simca, a used Mercedes, a procession of Volvos, several Peugeots. The one thing they all had to have was a sunroof, because he loved the sun on his face while he drove, even in winter. His forehead was always tanned mahogany.

He thought nothing of driving from Connecticut to Ontario in a day, with a car full of five kids, some dogs and mum, and towing a trailer, usually full of contraband for the cottage. He had a way of leveling his gaze at the customs officer, deepening his voice and saying “nothing to declare. We’re Canadians returning for the summer”. Meanwhile, packed in the boat on the trailer were tools, stoves, fridges, supplies, booze, everything needed to outfit our new cottage.

The cottage was on a tiny island in a famous lake in Ontario’s cottage country. Dad’s idea of a vacation was to lie flat on his back all day long, get up for dinner, then lie flat on his back again. He did this for two weeks every year, and I have a pencil sketch by my younger sister to prove it.

As it turns out, my father left a more substantial estate than any of us thought. He, who had never owned a house until his forties, who had worked three and four jobs at a time to raise five children, had actually left his children a legacy.

Now it remains to see if the surviving children can rise to the challenge of dividing dad’s estate without rancour. This is often a sad after-chapter to many well-lived lives, and for the sake of our family bond, I hope we can do the process justice.

A Golden Exit

A Golden Exit

“Happy New Year! You made it to 2013”. Donald Corbett, my widowed 89 year old father said “I wish I hadn’t”. “Don’t worry, I’m sure you won’t see 2014”. “Oh God, I hope not” Dad said.

There had been a swift change on the care front. We had convened a family conference before Christmas, prompted by another fall. We had told Dad it was time to move to a room on the second floor of Serenity Towers, where he could get more care. The second floor is where they keep the incompetent and incontinent. Dad calls them the droolers and zombies.

Nevertheless, there is round-the-clock nursing and attention on the second floor, and a small dining room right there, Residents can also take their meals in their rooms if they like. There is staff to help dress and wash those who can’t do it for themselves, and Dad has been having trouble lately. He’s almost stopped bathing, and dressing takes him hours. He would have help for all of that on the second floor.

He resisted us mightily, accusing youngest sister Rachel, his primary caregiver, of conspiring to get his prime suite, and get his money (he doesn’t have any, really. He insists he didn’t fall and can take care of himself. We left it unresolved.

A week later, after the new year, Rachel tells us he reluctantly agreed to move to the second floor. Two days later he said he was looking forward to it. Yesterday he said he couldn’t wait. I guess his frailty has caught up with him and he realizes how much help he needs. It helped that Rachel left him alone for a few days after he first refused our entreaties to move. Tough love worked.

Out of the blue, younger sister Harriet e-mailed to say she was flying in from the west, she had gotten a cheap ticket on points. She hadn’t seen dad in two years, since the memorial for my mother in the fall of 2010. At that gathering, dad was using a cane, but he was loud and bossy and overbearing as usual. I’m not sure Harriet was ready for the reed-thin, papery old scrap dad had become.

Dad decided we would mark the visit (four of his five children) with a “Last Supper” (his words) at Serenity Towers. We gathered at Rachel’s house and went over to Serenity Towers together. Rachel and her partner had moved his furniture in that afternoon, and he was seeing his new room for the first time.

It was one room, with a bed in the corner, but quite large, with room enough for his desk and computer (which he never uses anymore) and a table and several comfortable chairs. It was a much more sensible arrangement than his three room suite, most of which he never used.

We had a glass of wine (the ban on alcohol on the second floor was only for the droolers. Those with all their marbles, like Dad, could keep a fridge of booze). In addition to three squares a day (which he is encouraged to eat), he gets three snacks delivered to his room during the day. Also, the staff will encourage him to drink fluids and stay hydrated, with which he has a problem, like many of the very old.

We went down to the lovely dining room (dad being pushed backward seated on his walker) and had a big table set for the whole family (minus oldest brother Hal, still out west). A group photo was taken and immediately put on Facebook, where it immediately drew a number of comments about how good it was seeing Dad with his family.

The food, as I have mentioned before, was excellent, real home cooking, just not enough of it. Dad had a half portion, which he didn’t finish, but he was doing what he liked best in the whole world, sitting at the head of a table full of his noisy squabbling children. He slowly ate, and beamed at all of us.

We toddled back up to his new suite for a drink after dinner. He gave away a few things to his kids and then said “I’m not a believer, but what I want to know is what happens when you die? Is it just the end? All black? Has anyone ever come back to tell?”. This was a new direction for dad, never the most philosophical man. I wanted to say “you meet all those who’ve died before you. They’re waiting for you in the light, and mum will be there too”, but instead, I said “That’s a funny thing to be worrying about. You’re not going anywhere yet”.

I got a call in the early morning the day after the Last Supper. Dad had died during the night, peacefully. He had waited to host his children for dinner, had the time of his life, then slipped off quietly without waking. This is the golden end we all desire, the one that was denied my mother. I only hope I’m as lucky as dad when my time comes.

A Very Difficult Conversation

A Very Difficult Conversation

An e-mail from youngest sister late at night to youngest brother and me. Our 89 year old widowed father had fallen again; presented himself to the night nurse covered in blood, then denied it had happened the next day. Could we do a conference call in half an hour? Things needed deciding.

Serenity Towers had called youngest sister in. After last night’s incident, they were very worried about his safety. When youngest sister confronted him with the fact he’d fallen again, he said he hadn’t. She asked where he’d gotten the bandage, and he said he’d had it for days, but youngest sister, who had seen him the day before, told him that wasn’t true.

He’s been falling for years. He drinks, he gets up at night to pee, he falls, bleeds, and goes back to bed. Before she died, my mother was always washing blood out of his towels, pajamas and sheets. He’s never broken anything, even recently, in his extremely fragile and enfeebled state. We think he’s too feather light to do much damage on the way down.

Anyway, as younger sister has said in her e-mail, it’s probably time for the second floor, where they keep the incompetent and the incontinent. He can get round-the-clock care and watching there, there’s a nurse always on duty, and he takes all three meals right on the floor. He’ll have to downsize from his three-room suite to a single room and bathroom, but all he does is sleep anyway nowadays.

Dad is deathly afraid of the second floor. That’s where they keep the “droolers” he says, the “zombies”. This is not going to be easy. Youngest sister suggests a family intervention at lunch on the weekend. Youngest brother says, “no, tomorrow, let’s get this over with”. Youngest sister says “I’ll tell him we’re coming for an early Christmas lunch”. I say “No, tell him it’s a family conference. Scare him a little”

It scared him. He saw all three of us waiting for him at lunch at Serenity Towers the next day and said, nervously “Youngest sister brought three of you, am I going to have to pay for all of you?”

Youngest sister, over dessert, said “Dad, we’re not just here to have lunch with you. We’re here to talk about your options” Dad belligerently said “My options are staying in my apartment. You’re just trying to tell my memory’s no good, why should I listen to you?”

This wasn’t going well. Youngest sister had said we had to offer him choices, not box him in. His choices were to move to the second floor, to engage a full-time care assistant to stay with him 24 hours, or he could go to a local full-care nursing home (which would surely kill him). Serenity Towers would do everything in their power to allow a resident to stay, but they would insist they leave if they became belligerent and uncooperative.

I broke in. “Dad, we’re very worried about your safety, and so is Serenity Towers. They’ve asked us to tell you if you want to stay here, you’re going to have to move to the second floor”. His face crumpled a little.

“They have insurance liabilities, Dad. They can’t allow you to stay in your apartment if they can’t care for you. They could get sued”. He said weakly “I’m OK in my apartment”. I said “Dad, you fell the other night and showed up at the nurses station covered in blood. They notice things like that”. He said weakly “I did not. There’s nothing wrong with my memory, I have no recall of that”.

“Besides, what would I do with my stuff? I can’t live in one little room”. I thought - Bingo! - that was the close. Now we talk about everything else but the decision. Youngest sister leapt in with “Oh that’s easy, I can get the kids to do it in a couple of hours, You go down for lunch and come back to your new room”.

He made one last stab “Well, I’m not going to take it from you. I’ll wait until the staff tells me”. Apparently, when I had left the table for a moment, he had lit into youngest sister, accusing her of meddling and plotting with the staff against him. Youngest sister puts up with this, but it’s not easy, I can tell.

He shuffled off up to his room on his new walker to get his corns seen to. Youngest sister cornered the Manager and explained our conversation. Connie said she would back us up to the limit, and tell him it was their decision at Serenity Towers. She said many residents don’t have family to help them make this decision, and the staff have to inform them, which is much harder for everyone. Serenity Towers was fully on our side.

On the way out, we stopped in for a look at the second floor. Nicely decorated, a reception desk, a small dining room. We asked the staff member in the kitchen about residents and alcohol. She said they hold occasional happy hours, for those who are competent to take part. They have one old lady whose booze they keep locked at the front desk, and if she complains enough, they’ll give her a shot.

This won’t do. Dad has been a drinker all his life, and while it’s slowly killing him (when he’s 119, maybe), it’s also keeping him alive by giving him something to look forward to every day. One room, no one to talk to and no booze? No, we’ll never get dad to agree to that.

In many families, the most difficult conversation is getting a parent to give up their car keys. Fortunately dad got too feeble to get into his car before he got too feeble to drive it, and he gladly gave it away. No, in our family, the most difficult conversation is about dad giving up his three rooms and his fridge of booze. He’ll get used to the company on the second floor, he doesn’t socialize much, and he’ll get used to his single room, h only really sleeps and reads the paper now. But if he has to ask for a drink, there’ll be hell to pay.

Patience

Patience

I’m not my 89 year old widowed father’s caregiver, I’m just an occasional visitor, and a voice at the end of the phone. Youngest sister is his caregiver, and she sees him frequently and, until recently, took him out for lunch. What she has in abundance is patience, and it’s something I don’t have a lot of.

Patience is essential in dealing with Dad. He takes his time changing sweaters before he goes out, and sometimes decides he doesn’t want to go at all. It’s an incredibly fraught operation shuffling him down the hallway to the parking lot, and getting him into a compact car (he’s 6 feet 4 inches tall, or was) is almost impossible.

Once at the restaurant, it’s almost impossible to extricate him from the car again, and then there’s the long slow shuffle inside. Back in the day, Dad used to like chaffing with waitresses; he spent a lot of time on the road, and they were his company. Signs of the old sparkle still show, but he can’t banter anymore, just smile winningly. The waitresses at the lunch joints around Serenity Towers all know him now, and they’re quite patient too. I guess life is slower in Niagara than here in Toronto.

Youngest sister has given up ordering Dad anything for lunch, because he just doesn’t eat. He’ll steal a roll for later, and maybe take one bite from a grilled cheese sandwich, but he’s not there to eat. I’ve noticed that he will polish off a dessert, so I urge him to order dessert first when we go out. Youngest sister says she will now no longer take him out for lunch.

Youngest brother has had some free time lately, and he’s been down to Niagara a lot. He says dealing with Dad one-on-one is particularly difficult; he has nothing to say, and he can’t really say it anyway. He sits there smiling dimly as though memories had taken the place of reality. It’s really much better to see him with someone else, so you have someone to talk to. Dad likes just watching and listening now.

Youngest brother describes a recent exchange:

Dad “So, do you have a girlfriend?

“Dad, you’ve met her several times”

Dad “What’s her name?”

“You know her name, it’s Michele”

Dad “Millie?”

“No, Michele. Millie was your dog”

Dad “Millie has a dog?”

“No, Millie was your dog, you put her down”

Dad “You put your girlfriend down?”

I guess these last years will get crazier and crazier. Dad is feeble, but in basic good health. He could hang on for 3 or 4 years into his 90s, becoming ever and ever more decrepit. He has a mortal fear of the Second Floor at Serenity Towers, the floor where the incontinent and incapable are kept, but he’s on his way there. Unfortunately, I think his body will outlast his wits, and for a splendidly educated man like Dad, that’s sad.

Dad's War

Dad’s War

My 89 year old widowed father was studying organ at the Royal Conservatory in Toronto when the war broke out. He enlisted as soon as he could. He was 6 feet 4 inches tall and weighed 130 pounds, scarcely the stuff of either bomber crew or front line infantry. Nonetheless, all were welcome, and off he went.

The train trip to the Prairies to train, and Halifax to board the transport overseas were the first times he had seen Canada. He wrote long eloquent letters home to his mother describing the people and scenery. He spent a year recently transcribing and printing those letters and I have a bound copy.

In England, he was seconded to the Army Bureau of Current Affairs (ABCA), as the assistant to their Canadian liaison, Capt. Bob MacKenzie. In this role, he lectured servicemen nd war brides on current affairs, life in Canada and the progress of the war. He organized and led meetings of Colonels and Majors on communications and publications. And he did all this as a staff sergeant.

He worked hard to avoid being promoted. He was well-educated, eloquent and clearly not Other Ranks material, but smart officers got sent to the front and died, and he was enjoying his war.

The Archbishop of Canterbury was a friend. He played the organ at Westminster Abbey. He hung out with artists, musicians and reporters. He sampled the bohemian underground of wartime London. He went to country houses for weekend house parties. He got gastritis in Ireland on furlough from eating too many fresh eggs, which were strictly rationed in England. This was his only wartime injury.

Not that the work he was doing at ABCA wasn’t important. Winston Churchill hated the group, though it was a nest of communists and a waste of money. Bob MacKenzie was a staunch socialist, as were all the instructors. They taught impressionable young servicemen about collectives, and nationalization, and owning the means of production. Political scientists agree ABCA was instrumental in defeating Churchill and electing Labour’s Clement Atlee in the election immediately after the war.

I recently asked my dad if would talk to a rapporteur for The Memory Project, a group that is recording the memories of WWII veterans. “Oh, hell, no. I don’t want to talk about it. I had a cushy war”.

I’m glad he wasn’t promoted to Lieutenant and killed at Ortona. Enough were.