Please forgive me. This is, largely, a re-post from five years ago, in the group writing category “heroes.” I’ve changed it a bit. But the sentiment’s the same:
A few weeks ago, when I signed up for this post, I’d never heard of Sally Magnusson.
“Oh, you know,” my sister said. “She’s Magnus’s daughter.”
Strange as it may seem, like most Brits of my generation and older, I do know.
Magnus Magnusson was a stalwart of BBC documentaries and quiz shows for decades (the host of Mastermind), an award-winning journalist, and a tireless translator of hundreds of years worth of Norse sagas and literature from his native Iceland. He died in 2007, the same year as my own Dad.
What I didn’t know was that he was married to another well-known journalist, Mamie Baird, and that Magnus and Mamie themselves had a brood of brilliantly creative and smart children.
Of which, Sally is one.
“What’s she done?” I asked my sister.
“She’s written a book,” my sister said. “About her mother’s dementia. I went to a book signing for it the other day.”
“Oh.” I said.
* * * *
My mother died on September 9, 2014, eleven days before my 60th birthday. She lived, for the last few years of her life, in an extraordinary nursing home in Worcester, in the UK. She was 86. She had lived a life that many would envy–(if you leave out the part about sleeping in the reinforced concrete bunker under the living room floor, and listening to the bombs raining down on nearby Birmingham during World War II)–life and travel in Colonial West Africa; a busy social life, sometimes including visits from, and to, members of the Royal Family and government officials of all sorts, races, religions and tribes; a stint in Boston, where Dad worked for Henry Kissinger at Harvard; fifteen years in a Pittsburgh suburb, where her children grew and flourished, and her husband garnered a PhD and enjoyed a successful teaching career; and a pleasant retirement with most of her family (I stayed in the US), in 1978, back to the home that she and Dad had held on to all this time, in the Worcestershire countryside.
Except that, for the last couple of decades of her life, she appeared to resent everything about it. And except for the fact that, for the last few years of her life, she couldn’t remember any of it.
Unlike me, my sister isn’t a voracious reader, so when she mentions a book favorably I consider it a recommendation, and I try to find it and read it as soon as I can.
So, I downloaded Sally Magnusson’s book, Where Memories Go: Why Dementia Changes Everything,to my Kindle, and I read it in not quite one sitting, but almost.
It’s a love story of a husband and wife. Of a mother and daughter. Of siblings. Of a family. For better or worse. To the bitter, (or, perhaps, not-so-bitter), end.
I don’t think I’d agree with Sally Magnusson much on politics or world view. It’s a mystery to me how someone so obviously bright and rational, while telling a story about the indomitability of the human spirit, the power of love to transform one’s perceptions of awful circumstances, and the importance of strong family bonds in dealing with, working through, and eventually overcoming tragedy, can advocate for more government intervention as the immediate solution to improve the situation for people like her mother.
But although this book is often reviewed as ‘a sweeping manifesto for social change,’ it’s really the very personal story of a daughter’s journey, through science, through emotion, and through her mother’s life, to understand her mother’s illness, and to find her mother’s spirit in the parts of her that are left at what Tolkien calls “the end of the world.” It’s heart-wrenching. It’s informative. And it’s scary. Because, as I read it, I had the eerie feeling that the spirit of Sally Magnusson must, somehow, have been lurking on the steps at Westwood during some of my family’s most difficult times. That she had seen it all, and understood it all.
At this passage:
I picked up the book to read myself one idle afternoon. A slip of folded paper fell out, and my throat caught again at the sight of it. You had captured again, in the same untidy capitals [the letters you were now most comfortable forming] , a . . . piece from your speech making days:
“LADLES AND JELLYSPOONS. NAILS AND SCREWNAILS. I STAND UPON THIS SPEECH TO MAKE A PLATFORM. I’M HERE TONIGHT BECAUSE I CAN’T BE HERE TOMORROW NIGHT . . “
You may have insisted that nothing was wrong, but here again was the evidence that you were hanging on for dear life, scrabbling for memory before it went.
I cried. Suddenly, it was 2009, and after three years of Herculean struggle with both her, and the ‘authorities,’ my mother was in a nursing home, and I was in my childhood home, faced with what looked like the latest episode of “Hoarders: Droitwich Edition” reality-TV, trying to work out how to clean up the mess (hint: dumpsters (skips). Many, many dumpsters.)
And I found myself going painstakingly through the hundreds of garbage bags (to see if Mum had pinned her wedding ring, or other valuables onto something she’d later stuffed into a black plastic bag). Through the soiled sheets that she didn’t know what to do with, so she threw them into a bag and got another pair, until the sheets ran out, or until she couldn’t remember there were supposed to be sheets. Through the family photographs she’d thrown out, obviously because she didn’t know who any of these strangers were. Through the hundreds of boxes of tea, and dozens of cans of fly spray, because she didn’t remember that she’d bought enough already. Through the cartons of trash, some of them revolting, some of them amusing, some of them just plain mystifying. Through my mother’s life.
And everywhere, falling out of everything, pieces of cardboard that she’d cut from cereal boxes, with her own shaky capitals imprinted on them, spelling out the day’s top news (with particular attention to the investigations into the death of Princess Diana), the daily weather report, and the local County Cricket Club scores. A few of them were even filled with family memories, like the one placed inside, and describing, a lovely little brass music box from the 1930s that had belonged to my grandmother:
Two Songs! Ah My Dearest Augustine. OR The More We Are Together. The Machine IS VERY OLD AND VERY FRAIL. TAKE GOOD CARE. PTO. MUCH LOVED.
She wrote it all down so that she would have something to talk about, and so that she could remember what to say. And so that we would remember when she was gone.
I won’t go into the detail of the multi-year struggle, borne mostly by my sister, to get the ‘authorities’ to recognize that my mother needed help. I’ll just say that if there is one area where Sally Magnusson and I would agree on social policy, it is probably that government functionaries, (in this case, those from the National Health Service) should not describe dementia as a ‘lifestyle choice,’ with the assumption that the affected person is in full control of her faculties, and that she might have wanted to live this way.
My mother would never have wanted to live this way.
When my mother was diagnosed with dementia (not Alzheimer’s, but a different kind), the first thing that ran through my head, and that of my brother and sister, I later found out, was “is it genetic? Are we doomed?”
We hope not. Dementia doesn’t seem to run in the family. Eccentricity, yes–like Great Uncle Harold who died of a hernia after attempting to lift his horse over a gate that the beast refused to jump. (My father used to say that Harold was the only one of his in-laws that he could actually have a sensible conversation with).
Of course, there’s always Aunty Betty, who was in a snit for years, because her boyfriend John, the King of China, hadn’t been to see her for an awfully long time. However, she envisioned this situation in her late 90s, and died at the age of 102, so I’m inclined to cut her some slack. May I have a boyfriend, even an imaginary one, when I’m 102.
No, what may have precipitated my mother’s dementia, the family thinks, and the doctors and carers who know her best are inclined to agree, was a bad fall from a kitchen stool that she had in 1982 or 1983. She fell from a height of about three-and-a-half feet, and struck her head very hard on the tile floor when she came down. Although she had some emergency medical treatment at the time, there wasn’t much follow-up, Mum, even then finding doctors and hospitals problematic to deal with.
It’s one of life’s little ironies, at least to me, that my mother might have suffered from dementia similar to that which afflicted Steelers great Mike Webster before his death, as all through her sojourn in the US, she was quite hostile to any sort of American sporting event. (“Who is Dock Ellis, and why is he always on the mound?” she would mutter plaintively to herself, every time she turned on KDKA Radio in the early 1970’s only to find that her favorite afternoon disc jockey had been pre-empted by yet another damn Pirates game).
When the doctor (finally) diagnosed my mother with dementia, in early 2009, he said that the deterioration of Mum’s brain had been going on for decades, something we’d been telling the ‘authorities’ for years. The signs were there, and they were clear to those who knew her best.
As part of her own journey, Sally Magnusson tracked down and spoke with recognized dementia experts both in the US and the UK. She recounts these interviews in her book, making sense of them for me. She writes of the damage that occurs to the brain’s neural pathways and the hiccups that this damage causes when memories are retrieved:
There is even a name for this–‘confabulation.’ When key memory functions are damaged, imagining a possible explanation for an unsettling experience is a perfectly understandable response.
My mother could, as the staff at the nursing home were wont to say, “confabulate for England.” It’s one of the things that fooled casual acquaintances, and observers of her condition for years. But over the years, her attempts to piece together memories from her experiences went more and more wrong.
I’d phone her up at the nursing home. The conversation usually went something like this:
“Where are you?” she’d inquire. “Pennsylvania,” I’d reply. “Is that in America?” she’d ask. “Yes,” I’d say. “Where’s America?” she’d ask.
“I’m at a lovely hotel,” she’d confide in me. “Everyone who works here is very kind. But you should see some of the other people who are staying here. Stark staring bonkers. I’m sure, if they ever had any marbles, they’ve lost them all by now.”
“I’m at the train station. It’s very busy. I’m not sure when the train is coming, but perhaps I’ll see you soon. Who are you, again? Are you my daughter?”
And, closer to the end,
“I wish I could think. I just can’t think!“
I never doubted that my mother knew she was failing. The irrationality, the anger and the occasional bouts of venomous hatred that erupted against others, were signs of frustration at herself, that she just couldn’t get it right anymore.
Sally Magnusson writes:
I used to think the one saving grace of dementia, as it progressed, might be that you would become less aware of what was happening to you. But you know. You certainly know. And the knowledge is hell.
And I believe she’s right.
So, Sally Magnusson, you’re one of my heroes:
- For creating and maintaining a family structure so strong that it survived dementia and even death
- For sharing your mother’s story in such an honest, endearing, straightforward, and human, way
- For speaking openly about this terrible illness, all the way to the end, so that others might know, if they don’t, and so that those that do know, understand that they are not alone
- For giving all our mothers a voice when they have lost their own
- For exposing the faults in the system and calling for change, and most importantly, today
- For reminding me, even this late in the game, that my poor, valiant, struggling, bewildered old Mum had a bit of the hero in herself.
Thanks, Mum. For better or for worse, I’d never have made it this far without you. These days, just like the sundial, “I count only the sunny hours.” May it ever be so.