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

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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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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Confessions

Acquiescence – Confessions Of A Rotten Little Bastard, Part 8

My mother is in Florida visiting with my brother. She’s been there for three weeks. I have to admit that the ‘breather’ has been nice to have, but in trying to get her house ready for sale and for other reasons it’s not necessarily a complete ‘vacation’.

All my prior ‘Confessions’ have been about Mom, and about transitioning her to a new home near me due to her increasing physical challenges and encroaching dementia related issues. I don’t seek sympathy in writing about it, I seek release. Writing does that for me. However, right at the moment I’m not having day-to-day interaction with Mom while she’s away.

This ‘Confession’ relates to my Dad.

Last night my dad had his second cardiac episode in under a month. It wasn’t ‘significant’ enough to hospitalize him overnight, but the fact that it has now happened twice in recent weeks is troubling.

I spoke with Dad last night as he was refusing to go to the hospital and get checked out and treated. The assisted living facility he resides at contacted me and I asked to speak with him directly. He told me he wasn’t doing well, and I’d better get up to see him because he probably wouldn’t last the night. I said, ‘Dad you need to go to the hospital and get this checked out’. He told me, in no uncertain terms, that he wasn’t going to do it.

At first I felt myself wanting to yell. The fear of losing him was instantly in control of my mind and almost of my tongue. I told him again that I really wanted him to go to the hospital and get treated, and although I did my best to maintain control, I know some of my fear and frustration was evident in my tone of voice. He said no, that he wasn’t going to do it no matter what I said to him, and to not get ‘huffy’ with him. I took a deep breath and changed gears. I asked him, when I was not easily able to cajole him into going for treatment, what he thought would happen if it were a serious condition and he did not take care of himself. His response was, ‘Well, that’ll be it then….I’ll be gone.’

It was very matter of fact in the way he said it, and not at all unlike him to say it in this way.

Dad was born in 1931, during the Great Depression. He married at age 20, divorced at age 47, and married again. He and his second wife were then together until her death in 2005. Dad grew up in Brownfield, Maine. His parents were never even remotely ‘comfortable’ financially, but he hasn’t ever, to my knowledge, looked upon his upbringing as one of poverty and misery. When my parents split up he moved into what was his mother’s and step-father’s ‘camp’ in Windham, Maine and he lived there, first alone and then with his second wife. The camp was essentially two rooms, one open living space that was kitchen, living room, and bedroom and then another room that was used as a ‘bathroom’ and for wood storage to feed the monstrous cast iron stove in the kitchen. He lived there until he retired in his late fifties.

Dad was not in a financially sound place for retirement, but he scraped by and managed, just as he had for as long as my memory stretches. He made minor improvements and upgrades to the ‘camp’ when he could, and never seemed to be disappointed that the house wasn’t larger and more elegant. He had an old television set (no cable t.v.), a vintage washing machine (the old barrel type with the roller bars to wring out your clothing) and other equally vintage appliances, though they were scarce in number. After retiring Dad moved two hours north of Windham and put a used trailer on an inexpensive piece of land and resided there until his stroke in 2006. He never had a ‘new’ vehicle, but they were sound ones due to his being a mechanic. He dressed modestly, mostly in blue Dickies work clothes with the occasional flannel shirt or sweatshirt thrown in for good measure. He never seemed concerned with appearances, which in my eyes made him fortunate in never having to live up to anyone’s image of what he should be. He lived simply then, as he always had.

The way he lived was always a stark contrast to my mother’s wants and fears about having ‘nothing’. One of her siblings once remarked that she was not just reluctant to spend money…she was fearful of it. Over the years I’ve come to see that as being a very astute observation. Mom has said that she saw Dad’s ‘contentment’ with whatever he had as a weakness. I used to believe that as well. In the intervening years I’ve come to see it as an attribute in him. He isn’t educated. He isn’t refined. He is, and has lived as, just exactly who he is.

Dad seems to have always been content with whatever he had and wherever he was. Though he was likely not happy in his marriage to Mom for a long time before it ended, he did nothing himself to change it until she told him she wanted him to move out. He never tried to ‘move up’ at work, and as long as he brought home a paycheck, and he wasn’t starving, he was okay with it. He has had no ladder to climb, nor heights to aspire to. He’s a quiet man of quiet means. He always, in my lifetime, has been this way.

That said, and after my conversation with Dad last night about his reluctance to go to the hospital, I think my Dad is preparing to die. I think he’s reached a place in life where he realizes, despite his mild dementia, that it’s not going to get any ‘better’ really, or not significantly so, and so why try to prolong it? I think he has convinced himself that his ‘time’ is nearing, and decided to not fight it.

I can’t say that this puts me at ease really. It’s been difficult to watch my parents age and face the challenges, both physical and mental, that they are facing with their bodies aging and with dementia, but the thought of Dad being gone, is difficult for me. I feel like, due to all the years I bought into the one-sided concept of why the marriage of my parents failed and all the years of silence between Dad and me, I have only really had ten years of ‘Dad’, despite my being 46 years of age. We’ve had some wonderfully healing talks over time, and I’ve gotten to know him better than I ever imagined possible. Despite his seeming acquiescence about the stage of life he’s at, and the inevitability of his passing, I can’t say I’m at all ready for it.

I guess I’m selfish there. I don’t want to see him ‘suffering’ of course, but I also don’t want to lose him. Not yet.

I know that I cannot control any of this. I can’t force him to take care of himself…I can’t force him to want to live longer than he is prepared to live. I can’t influence his contentment with his lot in life, no matter what that is, because if I try to…I’m trying to change him to suit myself, and that’s not something I wish to do. I have to just prepare myself to handle whatever I have to handle. I have no other option. In the end the only one we have any control over is ourselves. I can beg and plead and cry and scream and reason and debate…none of it will make a difference…Dad will be Dad…and do what Dad wants to do. It took me 36 years to accept that about him and accept that that’s just who he is and how he lives and that he’s fine with it. Why would I try to change it now?

Thankfully Dad did, after we hung up, willingly go to the hospital and got checked out. They released him last night after determining that it was a cardiac event, but not at the moment life threatening.

As happy as I was to know that, the news from the hospital is not necessarily ‘great’ but not the worst case. Dad may need a procedure of some sort to treat whatever is going on with his heart presently. If it’s minor, he may agree to it. If not, I doubt he will get on board. That’s the reality of where he’s at presently. I can’t do anything about that.

There is, however, something I can do, for myself, and hopefully it will be of benefit to him as well. I already do this, out of habit, and will of course continue to practice it. When we finished speaking last night, and before he changed his mind and willingly went to the hospital, I made sure the last few words I said to him, in case anything serious happened, were the most important words to say.

I told him, ‘I love you.’

I believe that if these are the last words I ever speak to someone I care about, then no matter what, our journey is complete. There may be conversations we didn’t have, resolutions we never made, but when their time came, the last thing I said to them was that I loved them. It took me many years to say it to my Dad, and I think it took him just as long to say it back. It’s not that we didn’t feel it, it’s that we let our own baggage get in the way of saying it. Thankfully that is no longer the case.

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Miscellaneous

The Lion Of March

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My grandmother, Gertrude, passed away just two years ago, shortly before her 89th birthday. Today she would have been 91.

I’ve written about my other grandmother, my Nana, on a couple of separate occasions. Neither death was easy. Neither wound has healed. Neither death seems real, at least not yet. I don’t know that they ever will.

There’s an old saying that “March comes in like a lion”….Gram, born on March 14th, was ‘The Lion Of March’ to me. She was strong, feisty, independent….fiercely loyal…fiercely protective…and fiercely loving.  She was sheltering and nurturing and yet never smothering. She always, in my memory, encouraged me to simply be ‘me’. I shared secrets with her, things very few people know; and instead of shock, or disappointment, no matter what it was I revealed to her, I always saw something in her eyes that told me how much she loved me…I saw hurt…hurt that I was disappointed or upset…hurt that mirrored my own at times…hurt that I was relieved to share with someone that I knew loved me unconditionally.

The last several months of Gram’s life the impenetrable fog of dementia settled into her mind and she no longer knew who I was. Nothing about me was familiar to her any longer. I was a stranger visiting her for the first time each time. I had seen this coming on. There were days when she thought I was her step-son (my dad) and her husband as well as her grandson. I suppose that’s just the familial traits and appearance I carry that reminded her of others in the same bloodline. I never corrected her when she thought I was someone else. I just enjoyed that no matter who she thought I was, she liked my company and trusted me to be with.

When she made the choice to stop eating and drinking and depart this life, I visited her in the nursing home and she lay there in a bed, in and out of awareness of where she was and why, and who all those surrounding her were. Her sons and her daughter were there, as well as grandchildren and even a great grandchild, all gathered there to spend the final moments of her life with her. I, living two hours away, was not able to stay more than a few days, and eventually had to leave to come home and await the terrible news that I knew was imminent.

Before she passed, I sat next to her and laid my head on her chest and told her how sorry I was she was hurting. I told her that I loved her. She awoke, and one of her arms started to move. She kept saying ‘ow…..ow…..and yet still worked to lift her arm from the bed. She managed to raise it enough to slip it over my shoulder and said, with great effort, the last words I ever heard from her.

‘It’s okay…I love you too’

Within a few days she was gone.

I try not to dwell too much on her not being here, as I suppose most of us are taught to do. We are told to remember the good times shared and the good things about the person who has left us. As difficult as that is to do when the grief is new and the pain is raw and you want so badly to stanch the emotional bloodletting that seems like it will never abate – in the long run it is the road to travel.

Fortunately I have many things I loved about my Gram to reflect upon, and we shared nothing but good times together for my entire adult life. When my grandfather passed, she leaned on me for emotional support and cried on my shoulder. When my relationship with my dad went south for many years, she supported and loved me. When my Nana died, despite this being Grampa’s first wife, the one who came before Gram and the mother of four of his seven children, she comforted me, putting aside any lingering feelings she herself had about Nana. When we took in my sister’s son as an infant, she encouraged and praised us for how well two men were equipped to care for an infant, and said we were more prepared and engaged in the process than many heterosexual parents she knew, despite any ‘misgivings’ she might have ever had about two men parenting a child.

This was the essence of her, in my memory, the essence of who Gram was. She cared, she loved, and she did so in a selfless way.  My feelings and my well-being were never secondary to her or her own feelings.

As I left her room at the nursing home the final day I saw her alive, I asked for some time alone with her which my uncles and aunt readily agreed to without question. I sat next to Gram, put my hand on hers, crying openly, and told her that if I ever hurt or disappointed her in my lifetime, I was truly sorry, and I never intentionally set out to harm her. I told her I hoped that she was even one fraction as proud of me as I had always been of her. I told her I loved her with all my heart.

And then I told her goodbye.

Today is a day I always remember her a little stronger, a little longer than any other day, although she’s never far from my mind. She was my friend as well as my grandmother, and I miss my friend so very much now that she’s no longer here for me to talk with. I miss her selfishly, as her time had come, and she’d been apart from Grampa for so long that it hardly seemed fair to ask her to stay any longer.

Happy Birthday Gram. When I allow myself to feel as well as think about you, I still cry. But as I said at your funeral, and still maintain, I believe that there is no shame in tears when we cry for someone we’ve loved and lost. Those tears are not a sign of weakness, they are the product of the strength of your love for the person who is no longer there. They are proof that you loved that person deeply, without limits, and that you are hurting that they are no longer there. I believe that no matter how strong you believe yourself to be, there are losses great enough and sorrows deep enough that they cannot stem the flow of tears forever, and eventually we must succumb.

I cried on the day that you died, and I cried on the day of your funeral. I cry now as I write this. And like all those days, and so many more that I’m sure will come, I am not, nor will I ever be, ashamed of the tears.

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