Confessions, Uncategorized

Promises To Keep – Confessions Of A Rotten Little Bastard, Part 25

I have not written in my blog for months. No recommendations of used book stores in New England, no stories about my kids, no out of print authors that I enjoy reading – and no posts about Mom’s journey with dementia.

Mom has been steadily losing more and more of her memories and cognitive process. She stopped answering the phone as she was receiving ‘robo-calls’ that were causing her a great deal of anxiety. She grew less and less able to actively and meaningfully participate in a conversation.

I would, for the first couple of years after she moved into assisted living, speak with her every day, or every day that I could reach her by phone. On days when she was down, or frustrated, or feeling as if there were few things to ‘go on for’, I could always get a laugh from her, always turn the conversation to something positive. She would tell me how much she looked forward to our calls after a while. It was one thing, one of the few things, I could do for her, my being in Boston, her being in Florida.

Mom and I talked many years ago now (and many times) about her ‘end of life’ wishes. She repeated her wishes to me many times, and sometimes asked me to state them to her to, I suppose, test my memory. It reached the point where I could recite them in the exact order that she did, as if it were a grocery list that never changed from week to week, or a never changing inventory in an emergency supply closet, all the ‘just in case’ things that you might never need but should keep handy – and I, ever since then, have been her ‘just in case’.

She had an attorney write a will, as well as a living will, to cross every T and dot every i in a legal sense. She also had them draft a power of attorney, and a medical proxy to grant me the ability to act on her behalf. She gave me copies of all these documents, backup copies, and then new copies (and backup copies) when she made a few revisions after my sister died, and as grandchildren came into her life over time. Despite those ‘revisions’ to the documents, however; the unwritten but oft-spoken wishes never changed for her. My memory of them never did either.

Thus far, every promise that I made her, save for one, has been possible to keep. I could not prevent her from going into assisted living. That isn’t technically what she asked of me, to ‘blockade’ her from it, but rather to provide care for her at home. I tried that, following her dementia diagnosis, by setting her up in an apartment 1 mile from me. It was a rough time for both of us (which you can read about in earlier ‘Confessions’ posts and which prompted me to start writing about the experience here), and eventually was not possible to continue either in my town or in my brother’s home in Florida. The need outweighed the capability. Fortunately, knowing that she was cared for round-the-clock, in a facility that she could have her own room in, and that I could go back to being her son rather than her caregiver; the relief outweighed the regret.

Mom’s ‘decline’ with the dementia has been gradual, but still relatively steady, unlike my Dad who had a ‘decline and plateau’ from the beginning to the end. He never lost the ability to carry on a conversation (thankfully for him as he loved to spin a tale of his boyhood days in Brownfield, Maine). He never forgot ‘how’ to eat, how to dress himself, how to bathe, nor who people were. Dad’s challenges with dementia were more in following through with a process from start to finish (like turning the oven on and then remembering to turn it off) and it was a bit ‘accelerated’ by the stroke he suffered several years before he did die. Dementia didn’t rob him of as much as it has robbed Mom.

Earlier this year Mom suffered a series of ‘seizure’ events related to an infection in her urinary tract. UTIs are not uncommon in the elderly. They present in different ways than they might in younger people, and are far more frequent to appear, but they are typically treatable with antibiotics when the symptoms present. Mom was hospitalized due to hers. She was eventually released to her assisted living, but a sharp decline had taken place, and it became necessary to address heightened needs and ‘minding’ that she would now need. The assisted living facility she lived in said that they could still meet those needs, but when Mom returned to her then ‘home’, on the first night of her return, she managed to get herself out of bed and fell – fracturing a vertebrae in her neck, and sending her right back to the hospital. My brother and I then looked into placing her in an alternate facility, following the necessary rehab period for the neck injury, that would provide her with more skilled long-term care.

‘Long’ term has turned out to be not very long at all. Mom has stopped eating, all but completely. The rehab facility that she has been staying at has stated that either she will have to have a feeding tube inserted; or we needed to look at hospice care for Mom. She won’t recover from this.

There are things we tell our children to placate them. We promise them that there are no monsters under their beds, that the tooth fairy only wants their teeth that fall out and won’t play with their toys. We tell them that we’ll always be there to pick them up when they fall, that eating your vegetables will make you big and strong, and that the fat guy in the red suit that leaves presents under a tree once a year can see every.single.thing they do.

We do these things, promise these things, to not cause them anxiety and fear unnecessarily – we also tell them, when they ask if we’re going to die someday after the passing of a loved one or friend, things like while everyone dies eventually, and none of us can tell exactly when, it won’t be for a long, long time. Sometimes we children ask them to promise us that and they say, ‘I promise.’ I’ve made a similar vow to my own kids in years past. I’ve perpetuated the Santa story until they reached a certain age. I concocted an anti-zombie spray (water in a hairdresser’s spray bottle) to provide an extra layer of protection for their bedroom in the areas they deemed most vulnerable. I made all those same promises that so many other parents do with their kids. Our kids need a lot from us – time, attention, love, support, caring, supervision, stability, etc., etc., etc.  We give it to them, because that’s what, ideally, we, as parents, sign up for when we accept the job.

Sometimes our parents have to ask us for things in return. Sometimes they have to plan ahead and ask their child or their children to make certain guarantees to them ‘just in case’ they, for whatever reason, don’t have the ability to make all their own decisions.

‘Promise me something, Brad – and this is very important to me, so please, please, please promise me this. I hate to ask this of you, but I don’t know that I’ll always be able to speak for myself, and I need someone to count on who I know will do what I ask and what I want, no matter how it makes them feel. I don’t want to burden you with this, but I have to have someone. Brad; I don’t ever want to be kept alive artificially. I don’t want to be laying there in a bed, all but dead, no good to anybody, and having some machine take care of me. I don’t want people to come looking at me, hoping I’ll wake up, sitting there sad and devastated. Don’t do that to me, I couldn’t stand it. Don’t let me live like that, just to keep me around. I don’t like to say these things, especially to my child. But don’t do that to me, please. Let me go if things are that bad, and there’s no hope for me. Let me go. Promise me that, honey, please? Please do that for me.’

I know in my heart, Mom, that you would refuse a feeding tube. I know that you would consider that being kept alive artificially. I know that you’re still there inside, deep inside the fog that has grabbed you and won’t let go, and are telling me, by not eating any longer, that you are choosing your time to go, and it’s now. But you can’t verbalize that. You need a voice, you asked me to be that voice – to say, ‘No, no feeding tube – I agree to hospice.’ for you, because you won’t get any better now.  I have to say that for you. I have to say it because you can’t, no matter if I feel ready to have both my parents gone before I hit fifty years of age. Before my kids grow up and you get to see the men they will become. Before I ever get to beat you at a game of Scrabble. We tied…once…the last time we ever played. That’ll have to do. I have to make it do. I have to accept it, all of it, no matter how it feels.

I have to, because I made a promise to you, and it’s a promise I have to keep.






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.



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?”


“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.”


“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).


“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.




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.






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.








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.





Unsolicited Advice – Confessions Of A Rotten Little Bastard, Part 11

My brother and I started noticing ‘changes’ in our mother several years ago. Back then they were more subtle…repeating parts of conversations, having to think about names of people she didn’t encounter regularly, and other small ‘gaps’ in her cognitive process.

Mom is a very stubborn person – or as she puts it ‘independent’. She speaks of this trait as something she has had to be over time, raising three children without much help….but we all have been adults now for a long, long time. It goes deeper than that with her, which is something I’ve come to understand to a greater degree the older I get and the better acquainted with myself I become.

In the past nine months I have had much more direct insight into and involvement with my mother’s care, as has my brother for the past few months while she’s been staying with him in Florida – a trip that was initially supposed to be one month but has been extended now to just under three and with no real ‘end date’ in sight.

During this time, as it’s become necessary to ‘take over’ many portions of mom’s day to day care I’ve learned a great deal. I hope that my own experiences, if I pass on some unsolicited advice, will assist others in their own similar efforts with aging parents, and perhaps give some aging parents a little insight as to what those who try to assist you will face.

So, for what it’s worth, here’s a few tips I’d like to pass along. I am certainly no expert on any of this, and in the past nine months have made several mis-steps along the way. But I hope my experience helps others.

1. Power Of Attorney – this is a very, very valuable thing to have for those trying to assist aging parents. But don’t assume it’s the end all and be all of necessary documentation in and of itself. Even if you have power of attorney, have it notarized. Some transactions, irrespective of the P.O.A. are not completely ‘valid’ unless notarized. I recently sold my mother’s house in Maine, and found that even with power of attorney, because it was not notarized, the deed had to be signed and witnessed and notarized by my mother for my P.O.A. to be valid to sign the rest of the documents for the sale.

2. Medical Proxy – Again, a very useful document. However, should you reach a stage where your parent/loved one cannot make sound medical decisions for themselves, or should you need to have access to a full medical history to properly care for them and understand the foundation of certain challenges they may face, the medical proxy does not guarantee you will have it. Have your loved one sign a medical release with their primary care physician. This is not something you can retroactively have them sign if you have reached a stage where they cannot make sound decisions for themselves any longer whereas it could be challenged that they did not make a sound decision in signing it. As the world becomes more and more litigious in nature, and malpractice suits are filed at the drop of a hat, doctors are, understandably, exercising more and more caution in their efforts.

3. Utilities, insurance policies, and other accounts – It seems one of the easiest decisions to make to say to an aging parent or loved one ‘Let me take that over and handle it’ when you see your loved one, more and more, struggling to make sense of insurance coverages, utility bills, and the like. Don’t assume your power of attorney will grant you access to all the closed doors placed in front of you. Make a list of all the coverages your parent/loved one has, as well as all the utilities they have, and contact each and every one of them and have your parent/loved one authorize you to speak/act on their behalf. You will save yourself a lot of time and frustration this way instead of hearing repeatedly that they cannot assist you whereas you are not an authorized party on the account, and your power of attorney does not grant you this access.

4. Guardianship – One of the toughest decisions for a person to make is to appoint someone to act in their best interests if they are unable to do so themselves. It involves a level of trust with and knowledge of someone that can take a very long time to build. If you, like my mother, reach a stage/condition in life where you do not recognize the progression of dementia, alzheimer disease, or similar debilitating conditions and diseases, you also likely will not recognize the need for someone to step in on your behalf and provide for your well-being and your safety if you are not 100% able to do so for yourself. This can either be a relatively ‘routine’ process, or it can be a very long, difficult road to travel. My brother had guardianship of our father. He/we had to go to court to obtain it following Dad’s stroke and, in essence, prove him unable to care for himself any longer. We both knew it was necessary – Dad did not feel the same. Independence is one of the final remaining things that aging parents feel they still have when they find more and more being taken away from them and they will hold on to it as tightly as they can for as long as they can. Certain wording in a medical proxy or advanced healthcare directive can eliminate the need for a court hearing to determine fitness (unless a parent/loved one challenges it strongly enough), whereas a person’s primary care physician can make the determination that a person is unable to care for themselves and make sound decisions and a guardianship can be enacted upon that determination. It’s not a simple ‘sign and done’ deal, because a physician, if they have any integrity, will cautiously approach this decision with an informed view of a person’s overall condition – but in comparison with the idea of taking your parent to court and what that can feel like or what conflicts can arise from it – it’s the lesser of two evils. Certainly a guardianship can be challenged even if granted this way, but it also can take the ‘personalization’ out of it between a caregiver/loved one if it’s a doctor’s determination that it is necessary.

5. Support – I cannot express how valuable certain friends have become to me in the past several months. They are there with advice, understanding, compassion, or just ears to bend when I’ve needed them to be. I am beyond grateful to have this support in my life. I am not a person to reach out for help easily – I take on a lot, and then try to handle the ramifications of it all myself as well. BIG mistake….at least for me. While the day to day challenges of trying to assist an aging parent/loved one can be daunting enough, at any level of caregiving from occasional help to full-on 24 hour care, don’t forget that this is also your parent (in many cases) and thoughts and feelings and ‘old wounds’ can open up at any moment and come crashing in on you. Set your resources up before you need them. Make it so you don’t have to think about who to call and where to go for support. And to go a step further – if you know someone helping an aging parent/loved one – and they are anything like me (introvert, guarded, doesn’t reach out easily) – rather than ask them if they are okay and accept the answer of ‘yes I’m fine’…..or ask them ‘is there anything I can do’ and accept the answer of ‘nope, nothing I can think of’ – listen to what they are telling you are the biggest challenges they are facing with the caregiving, and suggest taking something off their plate now and again if you are able. Ask them more direct questions than ‘how are you’ – they might open up a bit more when prompted. I am a firm believer in taking responsibility for yourself and speaking your needs, but when it feels like the weight of the world is on your shoulders, even the most ‘responsible’ people can forget how to for a while.

6. Be Kind To Yourself – Remind yourself you are doing the best you can. Remind yourself of this often. Every day.  And try to remember that you are not a machine, and sometimes, no matter how good your intentions are, you are going to make choices you will later wish you’d made differently. It happens…to everyone.