Confessions

Every Day A Little Death – Confessions Of A Rotten Little Bastard, Part 24

Every day a little death
In the parlor, in the bed,
In the curtains, in the silver,
In the buttons, in the bread.
Every day a little sting
In the heart and in the head,
Every move and every breath
(And you hardly feel a thing)
Brings a perfect little death.

I’m borrowing from the lyrics of one of the best Stephen Sondheim musicals, A Little Night Music. The subtext of the song is that the character who sings it believes that each day of her marriage some small part of her dies.

Dementia is, in a way, like that. Every day another moment, another day, another week, another month or year get lost to the person who suffers from that particular affliction. Names, locations, dates, times, routines, favorite foods, favorite articles of clothing, favorite holidays – none are immune. Mom frequently asks me where I live, how I ‘got’ my children, even how old I am. Quite a change from hearing so many times over the year how difficult it was to even get pregnant and how tough the pregnancy was and how she worried and worried daily after being told she’d either miscarry or I’d be born with some kind of physical or mental deformity. From that to ‘how old are you?’ What a change. What a sad, miserable change.

Mom and I still are (despite my lapse in blogging for nine months) talking nearly every day, save for when she’s not near her phone or the demands of parenting on my own now prevent me from calling her. I sometimes wonder to myself what part of her might be disappearing on those days, and had I been able to reach her, what might she have said, or revealed that now is likely forever lost….when will she say ‘Who’s this?’ instead of ‘Hi honey, how are you?’

I realize that one day, perhaps, one of those casualties may be knowing who I am. She still knows she knows me, and many days knows I’m her son. We talk about good days, bad days, and all the in-between. She still trusts me, and listens to me, and talks to me about whatever comes to mind.

Several times recently Mom has talked about her mother and father (who passed away in the 1960’s) and not always in the past tense. She has said that her mother and father were in the same facility she was in and the staff remembers her as a young girl visiting them there and that’s why they treat her so well. At other times she talks about wondering when she will be able to go visit them, and how she’ll get there without owning a car (a mixture of 50+ years ago and 2 years ago when she lost her driver’s license). She began to talk, just the other night, about planning a trip to see them and then stopped herself mid-sentence, pausing for a moment before she continued on to a heart-wrenching conclusion.

“Oh no, oh what am I saying? They’re dead. Mom and Dad are dead…like Joe, and Laska, and Logan (her siblings) – they’re all dead. All of them. Jesus, what the hell is wrong with me?”

I offered no answer. What am I to say to her in a moment such as that? In a moment when she has to confront the deaths of her parents and siblings all over again, feeling perhaps as if it has just happened? The news has just been delivered. The grief, be it, in reality 15, 20, 40 years old…washing down over her again, sudden and absolute, unexpected and relentless, without the buffer of years or even decades of processing it and coping with it and reconciling it to spare her even a fraction of the pain. Sometimes she cries. Sometimes I do too, but I don’t let on to her about it. It’s for her pain I’m crying. I never met her parents. I never ‘lost’ them because I never had them in the first place. She did. And she lost them. And she has to relive that over and over again now.

To me, that’s one of the cruelest aspects of dementia and Alzheimer’s disease….not only forgetting the things you like and the people you love… but having to mourn the people you’ve lost over and over and over again because you forget, either momentarily or for a long period of time that they’re gone.

Every day a little death…some days a big one.

Over and over and over again.

 

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Confessions

The Sun Behind The Clouds – Confessions Of A Rotten Little Bastard, part 23.

A few weeks ago I received a gift from Mom – she had a day of extreme clarity and knew that I am her son, not a former neighbor or just a friend or her nephew (nephew is the most common, or rather she refers to herself as Aunt Carrie). She knew I am her son that day. The ray of light that penetrated the fog inside her mind also shone upon me for a bit and warmed me, if only temporarily.

Five minutes after we hung up from our call, she called me back and spoke as if we hadn’t just hung up the phone with one another. It was such an odd thing to experience with her – like a temporary break in the clouds that reveals a patch of soft blue, briefly, without warning, breaking the spell you might have fallen under to believe that the sun had completely disappeared, and yet there it was, all along, just behind the clouds. You look at it, let it warm you for a few seconds, only to lose it again behind the clouds.

Nevertheless, the break in the clouds that day, for both of us, was a gift – no matter how short-lived.

Since that time she’s gone back to being ‘Aunt Carrie’ or just ‘Carrie’ or ‘Whoever the hell I am today’ on the phone and in her messages to me when she forgets that I’ve gone back to work recently and usually call her now in the evening rather than during the day. I can’t say that it surprises me, though, that she forgets this small detail when she’s forgotten so much else…things, places, and people…even the fact (most days) that I’m her son.

That said, I am fortunate that no matter who she thinks I am, she trusts me still.

A week ago she called me in a panic – telling me “the people who work here won’t let me out so I can go to work, they’ve got me locked up and I can’t get out, you’ve got to come help me get out of here so I can go to work!” There was fear and anxiety and desperation in her voice. She’s grown convinced that she leaves her ‘apartment’ (as she refers to her room) and ‘goes upstairs to work’ in a different part of the building (it’s a one-story structure), and for some reason the people there were refusing to let her go out the door to go upstairs.

“Please – PLEASE come here and help me!” she begged into the phone, and I could hear that she’d begun to cry.

I asked her if anyone was in the room with her, and she said that yes, there was. I asked to speak with them, and she handed them the phone. I talked, briefly, with the caregiver there who explained that Mom was having a VERY rough day and was refusing to stop trying to go out the door which of course they couldn’t let her. I thanked her and told her I’d do what I could to calm Mom down.

At first I tried distraction – asking her what she’d had for lunch, what the weather was like, if she was reading anything good lately – but she knew what I was up to. Sometimes it works, sometimes it doesn’t, depending upon how fixated she is on whatever is bothering her at the moment. This was sizable. She wasn’t about to be deterred. The staff at the assisted living had tried to distract her by telling her that the ‘meeting’ she had was cancelled, she told them they were full of shit (per her words), etc. I could tell that for me to try to use that approach, placating and going along with it, was going to be a huge failure for me as well.

And so I changed gears, to my ‘rainy day’ tactic, which I try to use sparingly because it can certainly backfire in a hurry. I told her the truth.

“Mom, I have to tell you something, and I need you to listen carefully, and this is one of those times that we’ve discussed that no matter how far-fetched it seems, no matter how you might believe otherwise, I am telling you the truth – is that something you feel you can do right now?”

“Yes.”

“Okay.” (deep breath for me) “Mom, where you are right now is not a place of employment – it’s where you live. There is no second floor, but you do go to other areas of the building now and again. You are very helpful to others who are less physically able to help themselves at meals, but it’s not a job for you – you live there. The people who do work there are concerned that you will wander out the door and down the street and get hurt because you don’t know the area. That’s why they won’t let you go outside by yourself. They are, whether it seems like it or not, trying to take care of you.”

“Well, why the hell would they worry about that?”

“Because, Mom – your memory is failing. It would be very easy for you to get lost around there and not know your way back.”

Silence.

“Mom – I know you don’t like to hear about that, about your memory, but I need you to trust that I would not let anything bad happen to you, and I believe that the people there are trying to take care of you – can you trust me about that and not continue trying to leave?”

She began to cry again then, as did I (the silent type of crying I sometimes do so that she’s not aware of it on the other end of the phone).

“Mom?”

“Okay.” she said softly. “I don’t really understand what you mean by I don’t work here, but okay. If you tell me this is where I live, not work, and that I could get hurt if I try to leave on my own, I’ll believe you – I do trust you.”

“Thank you. I wish I could be there right now to give you a hug.”

“I wish you could, too.”

“Just know that I don’t want you to get hurt, ever, and I’ll do everything I can to prevent that – even if it doesn’t make sense to you sometimes, I hope you know I am doing it for your well-being, not to harm you.”

I suspect this was the first of what will likely become increasingly difficult to diffuse scenarios. I hope that she continues to trust me, trust the sound of my voice, no matter who she thinks I am, or who she is to me.

I remember hearing Mom say (to others) in my youth, on days when we might have gone to a nearby strip of beach along a river or somewhere else out of doors and the clouds had come in and overtaken the sun that the ‘sun had disappeared’. I used to believe, in my youth, that this was true. That the presence of the clouds meant that the sun, whereas I could no longer see it, had, indeed, disappeared.

I know better now. I know that the clouds are just a cover. A wispy, gauzy veneer that often obscures the bright blazing ball of gas beyond them. But the sun doesn’t just disappear –  not really – it’s still there behind the clouds, waiting for a fracture to appear so it can shine through once again.

It’s like Mom’s recognition of who I am, in ways. No matter who she thinks I am or who she is to me, she still trusts me. She still listens and accepts what I’m telling her, no matter how contradictory and far-fetched it may seem to her. It may not be this way for whatever time she has left, but for now, I’ll take it – for now I’ll enjoy and appreciate the fact that just my words and my voice can calm her down and redirect her and help her out of the dementia haze that she’s in. No matter how thick and impenetrable the haze may seem to her, there’s still something behind it trying to fight its way through to her.

Just like the sun – or rather, the Son, behind the clouds.

 

 

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Confessions

It’s A Quiet Thing – Confessions Of A Rotten Little Bastard, Part 22

Mom’s journey with dementia, at least from the point of factual diagnosis and not just a suspicion on my part, has been ongoing for two years now. It was August of 2014 when I accompanied her to an appointment with her primary care physician, mentioned that she’d had a prior ‘cognitive’ exam and perhaps an updated one was a good idea as there were some ‘gaps’ cropping up. Two years since she was referred to the geriatric medicine center of Maine Medical Center and diagnosed with dementia. Two years since her life as she had known it for so many years began to unravel before her eyes.

Her carefully built wall of defenses was crumbling. The explanations and assurances she had given for so long for repetitious conversations and grasping for names and details more and more were no long holding up to mask what was really going on with her. Her memory was disappearing. Her ability to figure out a process or to pull a word from her 80+ years of building vocabulary were becoming more and more compromised.

I can’t pinpoint an actual date or month or even a seasons when this began. I can say it was within the past ten years….more than five, less than twelve, but there’s not one single occurrence or ‘slip’ or concern that arose and gave me pause and led me to think ‘maybe things aren’t quite 100% with her’ for the very first time. It was lots of little things that in and of themselves were able to be justified or overlooked without much distress and anxiety – but when strung together they became a procession of clues that Mom’s cognitive ability was on the decline. It came without fanfare, without signal, without omen or caveat, and without mercy – much like Christmas in Whoville, ‘it came without ribbons, it came without tags, it came without packages, boxes or bags.’ There was no overcast sky or bone-chilling wind; no cautionary background music or telling sound effect, no blaring horn or raid siren going off.

None of this preceded dementia.

It just ‘came’.

It’s a quiet thing.

Ever since Mom’s journey started, the decline has been, to me, relatively rapid. For several months she still maintained an apartment, yet all the while I was noticing greater chasms in the years and details she was losing. I noticed her growing more frail. I noticed her getting more and more anxious having new routines introduced into her life. New doctors, new medications, new diet, new home…..all these things, every one of them necessary to her overall well-being and safety, brought upon her like shouting back at the dementia raising my staff and shouting ‘GO BACK TO THE SHADOW – YOU SHALL NOT PASS!’ like the grey wizard Gandalf to the Balrog on the bridge of Khazad-dûm.

And yet over time she still lost names, and places, and dates, and other details – little by little, one by one. The names of her parents, the circumstances of their deaths – even the fact of their deaths as she asked me recently if she’d told me what her mother said to her on Mom’s 80th birthday. Mom’s mother passed away when Mom was in her early 30’s…a full 50 years ago now.

I’ve been doing all I can to ease her through this process. Acting as if all the repeated conversations are being heard for the first time – all the answers I give her for the repeated questions are being given for the first time. When she brings up the anxieties that seem to plague her either daily, weekly, or on a six week loop (lately that has grown for many things), we talk, calmly, and I do all that I can to explain things to her in a way that will mollify her.  In a way that will smooth the rough spots out and de-escalate her worries somewhat. It’s not any kind of special trickery or shrewdness. It’s a calm voice. A reassuring tone. Talking to her in a way that is respecting that she’s an adult, not a child; not telling her what to do, but rather rationalize with her what is in her best interests and what she knows she should do for herself.

In my mind, it’s also the decades of talking to her and listening to her about her thoughts, her family, her life, her fears and building a trust between us that I would take care of her no matter what. It’s the 47 years of her being my mother and my being her son that she is still able to process that if I tell her she’s safe – she accepts it. If I tell her that although she is remembering something differently than I am, what I am telling her is the truth. In my mind it’s been all a combination of these things.

In the past few weeks Mom has called me and left me a few messages in between our daily calls (she often forgets we’ve spoken already or that I’ve told her I’ll call in the evening the next day, which is fine, understandable) and on my voice mail she’s said hello and then said, “this is….” and then paused for a moment before she identified herself as ‘Aunt Carrie’, rather than as ‘Mom’. She leaves me a message, I call her back, I don’t correct her on the ‘Aunt’ thing. She’s talking to a machine, not me, she slips, it happens. She knows who I am when we actually speak, calls me by name, calls me honey when we’re talking, same as always. Sure, she doesn’t remember where I live or what my age is (it goes back and forth, some days she does, some days she doesn’t) but the basics are still there, I’ve told myself for weeks now.

Amazing what we can convince ourselves of when we want to. Just over a year ago she told me she promised she’d never, ever forget who I was. I told her that even if I wasn’t in her head, I knew I’d always be in her heart, and let her off the hook from the promise immediately. I knew she couldn’t keep it – through no fault of her own. She knew it too, I know. I think she was trying to convince me more than herself at the time.

Four nights ago we were talking and she thanked me, again, for making the time to call her every day.  The conversation was a bit different than usual – just a slight modification in the way she carried herself on the call – something in her tone that was not the norm for her. Something less ‘familiar’ and a bit more ‘impersonal’ about how she spoke.

Something that, knowing her the way I do, as well as I do – I knew immediately what it was.

I replied, again, that calling her every day is my pleasure, that I enjoy talking with her and look forward to it each day.

“Yeah,’ she said, ‘but you do it every day – you call and talk to me and make me feel special every day…and who am I to deserve that? Who am I?”

“You tell me, who are you?” I asked.

“I’m Carrie.” She said.

“Right, but who are you to me?” I asked.

Perhaps she didn’t hear my voice crack slightly, but I noticed it, as I went toe to toe with my own denial ready to face the consequences, ‘ready’ being a relative term – full of caveats and cautions and forewarning.

“Well – we were neighbors for a long time, and we’ve always been good friends.” she replied.

Dementia creeps up on a person without  warning. It submits no proposal and awaits no committee approval. It arrives on our doorstep and invades our home without auspice or invitation. It just appears one day and stays there until it carries first the mind and then the body away.

It’s stealthy and voiceless; predatory and reticent. It skulks around for a while before it takes a person forcefully yet silently.

It’s like the tears that roll down your cheeks as you sit in a chair in a room in your house that you sit in every day while you talk to someone that you talk to every day. It’s those tears that you cry, without wailing and sobbing, just a stream of tears coming out of your eyes and you feel them there, making their way down your face wet and bothersome, while you sit in your chair stoically and compose yourself so that you don’t betray the anguish going on inside of you, anguish you convinced yourself you were prepared for just because you knew it was coming, and yet now you find yourself realizing how naive a thought that was, because right now, in this moment you have no idea how to process the realization that this woman who you speak with every day, who bore you and raised you and taught you many, many things and was a constant in your life for forty-seven years and yet suddenly you know, just by a slight variation in the timbre of her voice, no longer knows she’s your mother.

Dementia is like that as it pillages a life and a mind. It’s just like that – feline and bucolic just like those tears that you cry and keep yourself from sniffling or letting your voice break as you say goodnight and give the assurance that you’ll call again tomorrow, as usual. Just like the moments after you hang up and you realize that your life is forever altered now and there’s nothing at all you can do to change it so why scream and wail and carry on at all in the face of incapacitation? That’s what dementia is like when it trespasses into our lives and takes and takes and takes from us. It’s just like that.

It’s a quiet thing.

 

 

 

 

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Confessions

The Sun In Flight – Confessions Of A Rotten Little Bastard, Part 21

There is a Dylan Thomas poem that I first heard of in, of all places, a Rodney Dangerfield film called Back To School in which he accompanies his son to college and enrolls as a student himself.

The poem is called ‘Do Not Go Gentle Into That Good Night‘. It reads as follows:

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

Thomas’s poem is about living boldly, living fully, even as we age and reach the conclusion of our journey – to continue to burn with life.

I think Dylan Thomas was unfamiliar with Dementia and Alzheimer’s Disease.

On my daily call with Mom yesterday she mentioned that she’d been out earlier, gone to her brother Logan’s, and picked up a book. She noted this happily, as if it had lent an unexpected happiness to her day. She truly believed that’s what she’d done. Had it been ‘real’ I would have been happy for her.

Her brother Logan passed away more than a decade ago.

This morning she called me (before I could get to calling her) and asked me what time I would be over. In my typical fashion (calm, as if there’s nothing out of the ordinary and as if this is the first time I’m hearing whatever she’s saying), I replied, “Well, I’m at home in Massachusetts, so it won’t be today.” Mom carried on as if nothing were amiss about our exchange thus far and informed me that she was heading out shortly to ‘work’ in case I tried to call her. I said, “Okay, thanks, I would have wondered where you were.”

The decline in her cognitive abilities is more rapid these days it seems. She has begun asking me, nearly each day, who she was married to, who are the children that live with me, etc. She sometimes hesitates before speaking my name, or responds to me initially as if she’s suspicious that I’m a telemarketer or a bill collector. She asks me where I’m living now, and how old I am. Each question she asks she has known, in the past, the answer to without having to ask. Lately she’s needed more and more prompting.

For most of my life, I would have said that my mother would have ‘raged against the dying of the light’. That’s not to say that she travelled extensively or participated in numerous social functions and clubs and read classic literature and developed an appreciation for opera – she did none of those things. Mom’s favorite author (to this day) is Danielle Steele. She only ever left the country to cross the border into Canada, and the first time she attempted such a feat she (and her companions) chickened out as they feared they wouldn’t be let back into the U.S. upon return for some unknown reason. Mom wasn’t one to socialize readily (much preferring a one-on-on lunch or someone popping in to see her now and then), and most likely the closest she ever came to opera appreciation was watching ‘What’s Opera Doc’ with me on Looney Toons with Bugs Bunny in drag sitting atop a near morbidly obese cartoon horse and Elmer Fudd wailing about how lovely his Brunhilda was.

Mom lived in her own home, in retrospect, longer than she should have. The early warning signs of Dementia were there, certainly, but not significant enough to convince her to do anything about it any earlier than she did (or, more to the point, to accept what had to happen any earlier than it had to happen in which she realized, at some level, she had no other choice). She gave up cooking (saying her back bothered her too much to stand that long) and existed on store-bought quiche and cooked chicken breast. She drove anywhere she needed to go, even transporting others occasionally, until her license was taken from her when she could no longer identify road signs and their meaning. She stayed to the tried and true route to get anywhere rather than ever seek out a shortcut, becoming annoyed with me when I drove her somewhere and took another way that I knew was faster. When yard work and snow shoveling became too much for her, she hired out, constantly annoyed at the cost associated with that, but conceding that she could no longer do it herself (having fallen at the end of the driveway into the ditch that ran along the front edge of the property). She kept a calendar, a large one, handy to her favored living room recliner and made notes on it as to her day-to-day activities (such as ‘August 5 – saw Tammy, had lunch, great time, warm day’) which I realized had become her talking points in conversations with me (I found the calendar when cleaning out her house and imagine now that she would, as we talked on the phone, consult this calendar and improvise and embellish with just enough flourish to her tale to pass as her own unaided recollection of events).

For some time, she managed to not go gentle into that good night. Now, the darkness is overtaking her. I hear people describe Dementia as many things – a ‘fog’, a ‘memory thief’, a ‘slow disappearance of the mind’, etc.; many ways to say the same thing, as if your mind, your identity, your whole life is collapsing in on itself. The thoughts and remembrances you cling to of lost loved-ones and comforting conversations and passed on wisdom disintegrate until there’s not a trace left of them. Mom fought it off for a long time with her notes, her carefully worded explanations, and her assertion that she was ‘doing just fine’ no matter what new ailment or obstacle had befallen her.

Now, she can no longer mask the encroaching darkness that continues to invade her mind. She can’t find the words to describe a situation or an act. She speaks of deceased relatives as if they are still amongst the living. She scrambles for names of people she’s known her entire life, and she repeats herself ad infinitum (to which I learned to adapt months ago). She tries to still convince me that all is well and not to worry about her, to which I simply say, “I don’t mind worrying about you; you did that for me for so many years, let me return the favor.”

The child becomes the parent, and the parent becomes the child.

For all the imploring of Dylan Thomas – Mom cannot help but go gentle into that good night. She has not the presence of mind any longer to ‘rage’ against the dying of the light – to continue to burn with life as the candle shrivels and the flame flickers to an ebbing before it is finally extinguished. The ‘close of day’ finds her looking at the shadows on the walls and, as she has told me, realizing that she doesn’t know for sure if anyone is out there, outside her room, in case anything happens to her for what seems like hours (though it could be just half an hour) until someone pokes their head in and checks on her.

As Mom’s mind fades more and more, I find myself holding onto a belief that with the passing of her good memories, equal in number are the bad ones that disappear as well. That a life of regrets, which she conveyed to me over time, becomes more of simply a ‘life lived’, and the regrets are no longer ruminated upon, no longer a weight upon her, no longer an ever-present part of her day.

Wild men who caught and sang the sun in flight – and learn, too late, they grieved it on its way

Mom was never a ‘wild’ person – like myself she was cautious and heedful of unexpected consequences, although often to her (self-admitted) discredit; whereas she has expressed to me (several years ago now) a wish that she’d not been so ‘afraid’ of life at times that it prevented her from living it more fully. What she truly meant by that, those things she allowed her fear to obstruct her from doing more of, taking more risks and allowing happy accidents to more fully illustrate her experiences in life – is now lost somewhere in the same vapor that once was her ‘raging’ against the dying of the light – her passion and determination to keep her precious independence, taking whatever steps necessary to fortify it against the thief of awareness that, more and more, was pillaging that very independence from her.

As Dylan Thomas wrote; blind eyes could blaze like meteors and be gay. Sadly, life seemed to have another happenstance in mind for  Mom. The blaze continues to fade, the night to settle in more fixedly, more securely, holding her in its grasp as the blaze dims, the meteor paling as it continues its migration into the abyss that claims us all, eventually – the past.

I tried, for a long time, to rage for her. To try to stave off the dying of the light. But that time has been displaced. Dementia wins, and the fool that  I was to try to stand up to it and conquer it must capitulate. There’s only one more thing that I can do for Mom.

I can make going into that good night as gentle as possible.

 

 

 

 

 

 

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Confessions

What Happens To A Memory – Confessions Of A Rotten Little Bastard, Part 19

I spent an hour on the phone with my mother this morning talking about her visit with one of the boys who is in Florida to be part of a family wedding this coming weekend.

She related how much she enjoyed seeing him, how handsome he is, how loving and attentive he was, and how much she loves him.

She then told me that try as she might yesterday she just couldn’t recall any other times they’ve spent together. She knows they have spent time together (a great deal of it in the first few years of his life, before his mother died), but that she just can’t bring up any of the memories in her mind. She knows she loves him, but can’t remember doing anything important with him.

“What happens to a memory?” she asked. “How can something as important as that just disappear from your mind?”

Scientifically, there are explanations for what happens to our memories. Recent ones are stored in an area of the brain called the Hippocampus. How long they reside there is up for debate. But eventually the Hippocampus, after telling our brains how to recall that memory (the details of it that become embedded in our minds), the memory is then parceled out to the Cortex, where it lives on, although over time certain aspects of it can be revised or can even fade from our ability to recall it.

An alternative theory suggests that the Hippocampus stores ‘episodic’ memories, with layers of detail such as smell, taste, color, etc., while the cortex stores ‘semantic’ memories which are more steeped in factual knowledge than anything else. The Hippocampus might tell us that we lived in a brown, two story house in a row of houses with a rolling green field across the street where we spent many hours as a child running through the grass that rose up to our waists and chests and shoulders and beyond during the long summer months. We can still recall the sound of summer insects singing their songs and almost feel the warmth of the sunlight that streamed down from above and played with the tips of the grass shoots. Eventually this might be reported to another in much more general terms such as ‘There was a field across the street from my house. I used to play there.’ and little more.

Before the time when the written word became a more wide-spread form of recording and sharing events and history, people relied on the spoken word. Stories would spread from person to person, from village to village, passed down from generation to generation, so that the deeds and words of others would not wane with the passage of time. In this way, stories being passed to me by my parents, I know many things that otherwise I might not as they were never written down anywhere. I know things about myself from a time before I began to remember them and store them inside my own mind.

“I don’t remember my life before here, before coming here. I know I had a house, and I lived there for many years, but I can’t even recall what it looked like inside.” Mom said.

“Close your eyes, Mom, close your eyes and picture something in your mind and tell me what it is, with as much detail as you can.”

“I see a boy – he’s about five or six years old. He has dark hair. He’s sitting in a corner reading. There’s no one else in the room, but he’s just sitting there with a book.”

“That boy is me, Mom. You always said that when I first learned to read, anytime after that when you wondered where I was, you could always find me sitting in a corner, usually behind a chair, reading a book.”

“Yes – yes that’s right. I always loved that about you, that you loved to read as much as I loved to read – and still do. Do you?”

“Absolutely. I always have a book going.”

“Good. Then that’s something we’ll always share. Something we love about each other.”

“Then that’s your answer Mom.”

“My answer to what?”

“To what happens to a memory. Just like you said about your grandson being there and not remembering times you’ve spent with him, but you know you love him and enjoy being with him. Just like you pictured me just now reading in a corner and said it was always something you loved about me, my love of reading. That’s what happens to our memories. Even if we can’t recall them.”

“You think that’s it?”

“I don’t know for sure, but – perhaps we carry them in our heart as the love we feel for others, and that way they never really fade completely.”

“I hope you’re right, Son – but even if you aren’t, I think I like that, and I’m going to choose to believe it.”

Winnie The Pooh said, ‘If there ever comes a day when we can’t be together, keep me in your heart, I’ll stay there forever.’ Science might not know what happens to our memories exactly, but our hearts know what they know.

Even though memories may fade, love never will.

 

 

 

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Miscellaneous

The Song Of The Open Road

In April of 2005 I  was in the midst of rehearsals for a production of La Cage Aux Folles and we were nearing opening night. I had one of the two male leads in the production. On a rare night off, considering how close we were to opening night, I received a call from my grandmother letting me know that my stepmother, Doris, had passed away. Doris had been diagnosed with cancer and had undergone treatment for it, but in the end it was not the cancer that took her.

My relationship with my dad was still a ‘tentative’ one. We’d gone for many years without speaking. I had only reconciled with him, and made my peace with Doris as well, the prior November. We’d spoken a few times, but hadn’t seen each other for many months as they lived more than three hours north of me.

Nevertheless I made plans to attend the funeral primarily to support my dad. I felt badly for Doris, of course, but I had a lot of years of bitterness toward her that were still percolating in my mind and that I had yet to reconcile. Our last real ‘conversation’ was to tell her that despite the turn our own interaction had taken many years before I recognized that she had made Dad very happy for more than twenty years, and for that I was grateful.

Doris was introduced to me (and my siblings) as Dad’s ‘housekeeper’. Dad and Mom had not finalized their divorce as yet (despite it having been more than three years since they’d separated) and Dad had done his best to provide meals and such for the three of us on visiting days which where Friday nights and Sundays. I ate a lot of deer meat back then as Dad excelled at cooking spare ribs, but didn’t have a huge repertoire of meals to prepare.

Then along came Doris. She was a few years older than Dad, and already had an existing connection to the family. Her former daughter in law was married to one of Dad’s brothers. Over time the ‘housekeeper’ and Dad were living together, both at his place and at her place until that was sold and they retained only one residence. Shortly after Mom and Dad’s divorce was final, after five years of delays and postponements, Dad called one afternoon to tell us that he and Doris had gotten married, quietly and without any pomp and circumstance about it, and more importantly (at least to me) without telling his children or inviting them to attend the wedding.

It took me a very long time to get beyond that – but eventually I did, and even spoke to my father about it, about the feelings I had experienced back then, before Dad passed away last year himself, ten years after his wife died.

The total years of Dad and Doris’s marriage (before her death) was a lesser amount of time than he and my mother were married, the five years of separation prior to their divorce notwithstanding. That said; I believe they had more happy years together than my parents did.

When Doris passed, Dad was left to his own devices. He found himself adrift with the day to day tasks of keeping a house and making meals and paying bills – all things that Doris had done for many years. He had friends in the area, certainly, but at the end of the day he was alone. I spent a weekend with him shortly after Doris passed, to try to break up the silence a bit, at least for a few days, and we talked at length about how he was faring on his own.

There was talk amongst family members and well-wishers that perhaps the hunting rifle that Dad kept in the house should be removed. There were concerns that Dad would not manage well without Doris, and might be tempted to speed up their ‘reunion’ (if you believe in such things) by means of that rifle.

In the end, Dad surprised us all with how well he did manage up until a stroke made it necessary to transition him into assisted living where he remained for the rest of his life.

I experienced a number of feelings when Doris passed. Empathy and compassion, some regret, and a great deal of concern (for my dad). Doris’s death marked the beginning of many changes for him. Yet while I find myself reflecting upon this, eleven years since Doris’s death and just about a month shy of the first anniversary of Dad’s passing – I have realized that her passing gave me, in watching how Dad navigated the days after her passing, despite the concerns of others, the opportunity to feel something toward my dad that I never had before in nearly 40 years.

I felt proud of him – proud of his strength and resilience. Proud of his courage to go on and not succumb to grief and sorrow and let it make him bitter and angry and wallow in that for the rest of his days. For the remainder of his life he missed Doris, certainly, but he still smiled, still laughed, and spoke of her fondly.

When Dad passed last year we had seen one another a couple of days before he died. We’d gone to Doris’s grave to put flowers down. After leaving the cemetery Dad and I stopped at a local ice cream stand and I bought him a dish of grape-nut ice cream, which was his favorite.

As we ate our ice cream, we sat and talked about his overall health and condition and his decision to not seek any further medical treatment for the series of heart attacks he’d had – knowing the likely outcome of that and if he was prepared for the end – which he told me he was ready for – ready to go.

He also told me that if he could have any wish it would be to be ‘out there driving truck again – just driving and driving – without any particular destination’. Those were some of the final words he spoke with me just two days before his passing – how his last wish after eighty three years of life would be to once again sing the song of the open road.

In eulogizing my father, I spoke of his love for the back roads of Maine, and my wish that he was, in death, finally free to travel them once again.

More importantly, I hope that somewhere along the way Doris joined him for the ride.

 

 

 

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Confessions

Acting – Confessions Of A Rotten Little Bastard, Part 13

With everything I’ve seen and now know about my mother going through in the past six months, as her dementia has been worsening, some days I just want to pretend the word doesn’t exist.

While visiting my mother in Florida last month, to discuss assisted living with her together with my brother, I remarked to my brother that sometimes I think it might just be easier on Mom when she no longer remembers her life before the assisted living home…when that’s all she knows and all she remembers. Then the losses and the lack of independence and control might….*MIGHT* just be less frustrating for her because she won’t know anything else but that.

Mom has spent a couple of nights in the hospital following what appears to be another issue with her blood pressure or the regulation of it. I’ve long suspected internal bleeding is leading to what’s going on with the spikes and drops for her, but it is as yet an ‘undetermined’ thing. Hopefully testing will illuminate whatever the issue is. Hopefully she’ll have one less struggle to contend with and not have to be hospitalized over and over again.

Last night her physician agreed that a mild sedative might help her relax after a stressful realization that she was not being released yesterday. That was at six p.m. At ten-fifteen p.m. my brother received a call from mom saying they were insisting they were moving her to another room and she had refused and they told her it ‘didn’t matter’ that she was refusing, that it was ‘happening anyway’.

This escalated further and further to the point where when my brother arrived at the hospital at ten fifty-five, there were five nurses who had converged on Mom in her room and she was angry and lashing out at all of them. I’m not wishing to give nurses a bad name. I know plenty of them. They do a job that can be miserable to do…and my mother is certainly not the easiest patient in the world. So this does not pertain to all nurses…just the ones who were in Mom’s room last night….none of whom seemed to understand that Mom has dementia. None of whom could answer the simple question of ‘has she had a sedative yet’. None of whom seemed even remotely concerned with aggravating an elderly woman with repeated blood pressure issues instead of simply stepping back and letting her calm down and perhaps revisiting the move in the morning when she’s a bit more capable, cognitively, of understanding it and perhaps can have a discussion with my brother or even with me as to why it’s necessary, instead of having five persons who she doesn’t know and doesn’t trust shrouding her like a lynch mob. I have no medical training, but I really feel quite confident in my belief that that wasn’t good medicine.

I’m also more than a bit put out that it took five hours to administer a sedative to her. Mom is 84 years of age. No, she’s not the highest priority patient there…no she’s not the most congenial person there…yes there are circumstances that cause delays…but five hours? In that amount of time, I could have flown to Florida and given her the frigging injection myself.

This, the worsening of her dementia and the loss of independence and control over everything for her, is – based upon my mother’s personality and history, absolutely the worst possible way for her to end out her life.

I have seen, over time, many people posting on social media ‘Fucking Cancer – Cancer Sucks’…..and it does. So does dementia. Not only for those who have it…but for those of us who watch our loved ones go through it and know there’s just nothing we can do for them as we watch them continue to spiral down into a fog of uncertainty and fear. We stand by and watch someone who bases 99% of their identity on their strength and independence and everything they struggled with and overcame in life….and then along comes dementia and says ‘Guess what? I’ll have the last laugh…..I’ll work my dark magic on your mind, and no matter how strong and capable and independent you THINK you’ve been, you’ll wind up shaking in a corner because you won’t know who the fuck anyone or anything is…..you won’t even know where you are or how you got there…and when you try to figure that out, you’ll have forgotten exactly the steps you might take to HELP you figure that out, and there’s not a damned thing you nor anyone who cares about you can do about it…so take THAT, Ms. Independence….’

My mother has spent months in denial that she has dementia. At first that frustrated me because she was not treating herself for it and taking care of herself and it made trying to assist her all the more difficult because in her mind she didn’t need it…she was fine. I’m beginning to think she had something. I’m beginning to think I’d like to pretend it isn’t happening to her too. I just wish I could delude myself into believing it…even for a day….an hour…..a minute. Anything. I wish I could have that plausible deniability and behave as if none of this is happening to her, but I can’t because the worse it gets for her, the harder it gets to watch it, and it becomes near impossible to not think about it and worry about it and want to find someone to take it out on and to blame. To find anyone to scream at about it and make them feel even a fraction of the misery that she’s feeling. That I’m feeling for her. But I can’t. I can’t deny it. I can’t forget it. I can’t pretend it doesn’t exist and isn’t happening.

I guess I’m not that good an actor after all.

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