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.






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… 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.


What I Lost Last Week

“Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night. I miss you like hell.” ― Edna St. Vincent Millay

On Monday, May 25th, 2015 my father passed away. He was 83 years of age.

Each day since then has been filled with tears and filled with sorrow. Each day that passes I’m strong when I need to be, and then not when I don’t. Some days I get bogged down with a task at hand, and the grief I feel shifts around to somewhere other than the forefront of my mind. But when the task ends, or when I sit down to allow myself to rest for a moment, or when the house is quiet and I’m the only one still up, or I awake in the middle of the night it comes crashing back over me. Grief is cruel that way. Cruel and unfair. It strikes when you least expect it, and then lingers to taunt you.

I must speak of my father in the past tense now. I can drive past a certain assisted living home in Maine, but I no longer will stop there. It’s not where he sleeps, it’s where he slept. I can look for grape nut ice cream in a list of available flavors. It’s not what he likes, it’s what he liked. I can mimic his words and tell his oft repeated stories, even in his voice. It’s not what he says, it’s what he said.

So many words seem infinite in their potential and their capacity. We can like many things. We can know many things. We can love many people. So many words in our language seem to encompass moments and hours and weeks and years. Live is one of those words. We live by breathing and eating and loving and feeling. We live in the miles that we travel and the disappointments that we face and rise above. We live in the moments that we create with others and for ourselves. We live in the knowledge we acquire and our relationships with others and the legacies we leave behind. We live from the moment we draw first breath to the moment we expel our last.

The word die is different. It is a present tense word that the use of only encompasses a brief moment in the span of eternity. It is the moment when we cease to breathe…we cease to feel…and we cease to live. There is before, which we participate in and leave our mark for later if we are lucky. There is also after, which is not ours to own. That belongs to those we leave behind to mourn us and honor us and miss us and remember us. But in the word die there is only the briefest flicker of time in the space between before and after. Our eyes, once open, close, and then before is done, and after has filled its place without us even noticing the transition.

At my father’s funeral, I spoke of him and of our relationship, and how it suffered over the years. Fortunately it ended in healing and in forgiveness some ten years ago. I am grateful for those ten years, and yet feel cheated out of the other 36 I might have had with him. For a period of time lasting more than a decade I cut my father out of my life and robbed myself in the process. I won’t take full responsibility for that separation, as we both had a hand in it. But for my part in what brought about our silence with one another for all those years I am sorry. For what I lost in those years, time with my father, I am filled with regret and told him so before he passed away. For what I have now lost with his death, I know there is no apology for, and no forgiveness to seek, and no substitute for.

When my father died last week, I lost many things. I lost more than eighty years of wisdom and experience. I lost answers to questions I never thought to ask. I lost arms that would wrap around me no matter what was wrong or what I had done and comfort me. I lost stories of my grandparents and their parents before them that he hadn’t gotten around to telling me. I lost laughs that we hadn’t yet shared, as well as tears that we might have cried together, safe and comforted in the presence of one another. I lost the hours of anticipation I’d feel knowing I was driving up to Maine to see him. I lost someone who cared about me enough to listen to what my favorite cookie was and hand me a bag full of them, lifted from the coffers of his assisted living home, to send me home with them and carry me through until our next visit. I lost someone who would pick up trinkets and toys found around the facility and send them home for my boys to put a smile on their faces. I lost insight into a time before I lived that no history book will ever offer me. I lost stories of myself that come from a time before my memories began to imprint themselves on my own mind.

I lost a friend. I couldn’t always say that he was my friend. Thankfully that changed before it was too late.

People say grief has five stages to it. Denial, anger, bargaining, depression, and acceptance. I believe I’ve skipped over the first three stages in an end run for the final two. I cannot deny that my father is gone. I cannot be angry for I know he was prepared for his death and that he had reached a place in his life when he no longer wished to fight a losing battle. I cannot bargain for his continued existence because I’ve already lost him. That leaves me with two stages. I won’t call what I feel depression. Many times people feel as though they have nothing to live for when someone passes, or they begin to think about their own mortality so strongly that it becomes a kind of paralysis to them for continuing to live. I have to go on. I have kids, and family, and friends and experiences to make with all of them. I have many things to teach the boys, memories to not only pass on to them but to make with them as well.

I think this stage is, for me, more aptly labeled sadness. Sad that I can’t listen to him telling me stories, no matter how many times he’d told them to me before. Sad that I can’t hug him anymore, or kiss him on the forehead when I’m leaving and feel him reach up and place his hand over my own that I lay on his shoulder. Sad that my boys won’t get to know him better, at least not directly, and will have to rely on my stories to teach them things about their grandfather. Sad that I have one less place to visit when I go to Maine. Sad that while I can still say ‘I love you, dad’, I can never again hear him reply, ‘I love you, too.’

I know that the stage after this is acceptance. I know that in time the hurt will change and the memories won’t bring so many tears, and I’ll be able to think about his passing and about going to his grave site without a feeling of panic sweeping over me. I’ll come across pictures of him and be able to look at them for more than a few seconds without feeling as though someone has knocked the wind out of me with repeated kicks to my stomach. I’ll take out the very few material things I have of his and hold them in my hand and imagine his hands upon them and perhaps feel that he’s really quite near, rather than feeling the incalculable void that seems before me now when I look at them. I’ll sift through memories of him and not feel like I just want to curl up in a ball and sob until I have no tears left. I know I’ll get there. It’s a journey I’ve taken many times before.

For now, I think I’ll just stick with sad for a while longer.


The Eternal Parent – Confessions Of A Rotten Little Bastard, Part 5

On Christmas day my boys made a confession to me – they didn’t want their grandmother (my mom) at the house when they opened their presents. They both have been growing frustrated with her for a variety of reasons.

-She doesn’t say ‘please’ when she tells them to do something
-She’s demanding of them
-She speaks to them sharply
-She tells them what to do

I listened to their list of the transgressions of Grammy….and then reached a compromise with them. I would bring Grammy to the house after they opened most of their gifts, but the ones from her to them she would be here to watch them open.  Truth be told I didn’t really imagine she’d remember what the gifts were per se, but would enjoy watching them open something. The compromise was agreed to by all, and the boys tore into their gifts with childlike enthusiasm.

Part of me knew this situation would arise between Mom and the boys. She has a very high anxiety level at all times. She doesn’t like having someone not do what she tells them to do, and goes from zero to anger in two seconds flat. She’s been like this my entire life, and I have seen evidence that it has gone on far longer than I’ve been around.

Mom has related stories to me about her own childhood and being ‘parentified’ to some degree by her own mother. She doesn’t refer to it with that terminology, but that is what was done from my perspective as merely an observer since both her parents passed away before I was born. This appears to have thrust her, early on, into a ‘caretaker’ role in life and she has never broken free of it. Everything and everyone became her responsibility to oversee and keep from harm and regulate and direct. I have had to have many, many conversations with her over time that while I appreciate her care and concern, I am a grown man, near middle-aged now, and will make my own decisions and run my own life. I realize that most of the time I’m simply filling the air with sound that will not penetrate for her, but I at least need to say it.

Now, it seems, she has moved on to the boys with her efforts.

I realize that much of this is ‘generational’. She was born in the era the Waltons was set in, The Great Depression, and the family construct that was depicted, three generations under one roof where the grandparents expressed their opinions on the actions and decisions of the grandchildren, was the norm. Even in my childhood, although I do not ever recall my grandparents raising their voices to me in discipline, it was just accepted.

Times have changed, though, and the boys don’t wish to be ‘parented’ by Grammy. It is lessening their enthusiasm about having her here all the time and having a more frequent relationship with her. They have begun to ‘complain’ about her coming to the house for dinner, or attending their activities, and it was ‘bad’ enough that it was time to intervene. I told the boys to allow me to speak with Grammy, and going forward if they were upset about something that she was doing, simply speak to me or my husband about it, and let us take care of it. They consented to this readily.

That was the easy part.

As I left Mom’s building with her buckled into the passenger seat, I let her know that we needed to talk about something very important and I needed her to just listen. I, very diplomatically, explained the concerns of the boys and added my own observations as well. She was reluctant to accept that she’d done anything ‘wrong’, as she typically is, and had an instant justification for her actions, as she typically does, and it then became time to interject a little ‘tough love’, as I’ve had to do more and more since Mom relocated. I gently told her that the risk she was running was damaging her relationship with the boys if it continued, and that if they continued to object to having her around more often it was going to make it more and more difficult to spend time together, because I don’t wish to ‘fight’ with the children constantly. There are enough struggles to parenting two heightened-needs children, and I have to pick my battles sometimes. She, of course, countered with an argument of how she was simply ‘trying to help them’ and that is when it became necessary to bring out the big gun.

‘Mom, they are not your children. We will raise them as we see fit. Disciplining them is not your job.’

She stared out the window of the car, and thought this over for a moment. Lately, little by little, I’ve seen something new in Mom’s eyes. The same eyes I’ve looked into for 46 years and seen drive and determination and fierceness and resolve. It’s these things that have allowed her to ‘survive’ for so many years, raising three children without much help and then getting to retirement age and beyond and maintaining her own home until a month ago. I’ve seen something creeping in over the past month that was never really there before.


Mom nodded her head and said to me, ‘You’re right. They aren’t my children. I shouldn’t tell them what to do unless they are about to hurt themselves.’ (With this she’s right – I fully support if they are about to injure themselves and she says something to them.)

Having reached that place of ‘surrender’ – I ratcheted it back a few notches from tough love to just love.

‘Mom, you did your ‘parenting’ job with your own children….as difficult as it was at times. You put a roof over our heads, and clothes on our backs, and food in our stomachs. But just like it was time to retire from work, and now retire from driving, it’s also time to retire from parenting, at least as far as your grandchildren are concerned. Don’t try to be a parent to them. Don’t try to discipline them. Just love them, encourage them, and enjoy them. Don’t try to be their authority figure. Just be “Grammy” to them.’

She reached over and put her hand on mine and patted it a few times. I could tell she ‘heard’ it. I don’t expect miracles, whereas she has a lifetime of ‘care taking’ to break free of, and that’s no small endeavor for anyone. It’s easier to revert to old habits than it is to develop new ones. Time will help that.

I’ve also told her what I told the children – if they are doing something that bothers her, tell me, or my husband, and let us handle it. Let us decide what is acceptable behavior for them, and what is not. She agreed this was a better approach than further damaging her relationship with the boys.

I’ve come to realize that this change has not only affected her, it’s affected all of us in many ways. We all have new ‘jobs’ to learn in having Mom/Grammy live two miles away rather than two hours away. And Grammy has as much to learn as the rest of us about being just Grammy now to the boys, as well as how to live having retired from working, retired from driving, and retired from home ownership.

Hopefully the eternal parent in her can retire with grace and dignity as well.


The Five Stages Of Grief: Confessions Of A Rotten Little Bastard – Part 3

My mother has been going through the five stages of grieving with her move from a four bedroom house in Maine to a two bedroom apartment in my town.

Truth be told, she began those stages many months ago with stage one, denial, as she maintained that she was doing just fine remaining in the house I grew up in, despite the repeated phone calls to me about things that needed doing, needed fixing, needed managing and her ‘difficulty’ in finding people to do them. Mom’s not necessarily an easy person to ‘work’ for – she has very definite, very black and white ideas of how things should be done, how long they should take, and how much they should cost, and deviations from those ideas are not easily tolerated or accepted.  This has caused her to lose the people who plowed and mowed for her a few times, as her demands became more unreasonable to them and they eventually determined that what they were making for the jobs were not really worth the ‘cost’ to them.

Over the past several months, leading up to her move, I made several trips to Maine to assist Mom with medical appointments and evaluations, buying a new car (before we knew she’d be taking a mandatory driving test this fall), and general household duties.  My ‘once a month’ trips up became two, three, or more trips up, for either a day or a couple of days. This was one of the major prompts for her relocation, as it became increasingly difficult to devote the necessary time to the driving involved (anywhere from 4 – 5 hours round trip, plus whatever time was spent helping her).

Mom’s move has relieved her of numerous ‘anxieties’ she was facing regularly.  No longer does she fret about the weather and road conditions if she has an appointment to get to.  She can shop for a full week rather than a few days at a time whereas someone is there to bring all the bags in for her.  Not driving means not worrying about whether her driveway is too icy or too loaded with snow to get out of her garage. High winds don’t cause her stress about a tree branch coming through her roof for the third time. All of these concerns are no longer an issue for her.

Some days I would love to have someone show up at my door and tell me they were going to take three to five of my largest concerns in life away for me and I would no longer have to worry about them.  I’d go for even one on a regular basis.  I don’t have that luxury.

The other day, when the reality set in that she will no longer be a licensed driver and that there is an interested party to buy her months-old car, Mom hit another stage of grief: Anger.  Mom is convinced that the DMV in Maine relieved her of her license ‘illegally’ and without just cause whereas she’s been a safe driver for over fifty years with no incidents at all on her record. She either cannot or will not accept that not knowing the rules of the road and not recognizing the meaning of common road signs has made her an unsafe driver, and she places blame solely upon the shoulders of the DMV.  She now refers to that state agency with a few colorful expletives attached, and blames them entirely for their ‘stupid pieces of paper’ and ‘regulations’. I listen, and sometimes calmly try to explain that unfortunately the regulations are there for everyone’s safety, including hers, but ‘anger’ is a powerful filter that is difficult to penetrate. Therefore, I mostly listen, at least for right now.

She also touched upon stage 3 recently, ‘bargaining’, when she inquired if she’d be able to get a license in Massachusetts irrespective of what Maine has said. I informed her that the states are usually rather diligent about their sharing of information, so she’d likely face a denial if she applied for a license in Massachusetts, and be faced with another exam at the very minimum.   This realization brought her back to stage 3 again, anger.

All of this, in conjuncture with the prospect of her home of 48 years being sold in the coming months, and with the physical limitations she is experiencing in greater amount these days, is contributing to stage four: Depression.  Day upon day now, when I spend time with her, she laments everything she’s ‘lost’ as she puts it, without taking the time to ponder how much she’s gained – less anxiety, less stress, less ‘obligation….more time with her grandchildren, more time with her son, a ready-made driver and personal shopper (me), someone to cook for her (me), someone to try to put her on a better, more nutritious diet (me), someone to clean for her (me), someone to track her medical appointments (me)…..I’ve become her executive assistant, chauffeur, private nurse, nutritionist, and butler as well as her son (that isn’t a complaint).

The final stage of grieving, acceptance, is going to be very difficult for Mom to come by.  She’s got 83 years of ‘fighting’ under her belt….doing whatever she had to to survive on her own….taking care of herself….and it will take a veritable ‘act of God’ to get her to relinquish that…or ever become comfortable with it.  I don’t wish to ‘short-change’ her in terms of abilities and intellect, but knowing her the way I do, I anticipate that ‘acceptance’ will be a stage she might not ever reach. Acquiescence is perhaps the most I can hope for.

There is a glimmer of ‘hope’ for something positive for her.  She’s met a couple of nice ladies at the local Senior Center who she’s at least interested enough in to talk to.  We attended their ‘Holiday Sing-Along’ last week, and as I’d hoped it prompted people to come over and say hello after I got up and sang a couple of traditional holiday tunes, and one of the ladies even gave Mom her phone number. It’s not huge, but it’s a start.  I’ve hinted to Mom that perhaps she should use the phone number to call and inquire when this woman might next be having lunch at the center, and make plans to be there on that day as well, either with my assistance, or the center’s transportation program.  She said it was a ‘good thought’ and she’d ‘consider it’…..but it’s really not ‘in her nature’ to mingle with new people and make new friends.  She’s a tough nut to crack, my mother.  Very determined, and very stubborn.

At times I think she fails to realize that in many ways, I’m just as determined and stubborn as she is…if not more….and I’ve got all sorts of creative tricks up my sleeve to get her to mingle…and make new friends….no matter how doggedly she tries to thwart my efforts.

The five stages of grief are not easy to get through. Neither are the changes that Mom is experiencing. I get it, I empathize with it, and I am doing everything in my power to help her through it. She feels that she’s lost everything…that she has reached the end of her life.

I have a different take on it, which I’ve shared with her. This isn’t the ‘end’ of her life….it’s simply a new chapter…a new beginning…a reinvention. All stories come to a conclusion, but that doesn’t mean there aren’t new ones to tell. It’s not uncommon and completely understandable to mourn the loss of a life she crafted for herself for 48 years in her home in Maine.  It’s okay to go through the five stages of grief to realize that portion of her life, that story, has come to an end. And then, when the last lines of that story are read, and absorbed, and reflected upon, it’s time to start a new one.


Surrender – Confessions Of A Rotten Little Bastard, Part 2

Thirty years ago my mother took me to the Department Of Motor Vehicles in Maine to get my driver’s license. I was sixteen at the time.  I’d had my learner’s permit for a few months, waiting for my examination date. I was nervous, whereas both my older siblings had failed their exam a couple of times each before getting their license, and this was my first try.  Fortunately I did pass, and became a licensed driver in the fall of 1984. I also had my first accident that fall, as my inexperience on slick roads led me to crash headlong into a telephone pole, sliding on wet leaves and black ice. The perils of driving in Maine post-Labor Day.

Three decades (and a few more accidents, though not my fault) later, I returned to the DMV yesterday for a license exam, though this one was not for me. It was for my 83 year old mother, who was required to take a test as a result of her geriatric evaluation in October. I drove us to Maine yesterday, picked up her car from her former home in Gorham, and she drove to the exam location in Scarborough, whereas it’s been nearly two weeks since she was behind the wheel, ever since her relocation to Massachusetts.

I offered what encouragement I could to her, albeit ‘disingenuous’ in a way. I’ve been in a car with her a few times recently. I’ve had to remind her of the speed limit many times, whereas she was traveling more than 10 miles per hour over the posted speed without noticing it. I’ve watched her cross the center line to avoid imaginary obstacles in the road (her stated reason for the movement of the car) ahead of her.  Yesterday she nearly took out two mailboxes as she struggled with her seatbelt, choosing to fasten it while moving rather than while stationary. I’ve seen her frustration and anxiety when her usual route to a location is either unavailable, or I choose a more direct route to drive in, whereas Mom tends to go well out of her way to avoid traffic lights and a glut of vehicles.

Truth be told….I didn’t want her to pass the test. I do not feel she is safe behind the wheel any longer. I haven’t felt that way of late, and have tried to talk to her about it, but no amount of discussion would convince her to retire from driving.  A month and a half ago she was told she had to take this test, or simply surrender her license. She chose the test, and I can’t say I blame her. It gave her a fighting chance to prove that she could still navigate the highways and byways safely, after more than 50 years of driving. She’s historically been a very cautious and safe driver. She has never (in her reporting) had as much as a speeding ticket.  She’s been a very conscientious traveller on the roads. In her mind, there was no reason to think she shouldn’t continue.

The pre-road evaluation testing (before she was to drive) involved reading and identifying road signs and a 13 question written test.  I won’t share all the results, and just leave it at the driving portion didn’t occur. The examiner who tested her called me in after 40 minutes to discuss the results, and then offered Mom a re-test (Maine will offer up to three tries and then you must appeal if they still cannot/will not pass you) in two weeks, which we signed up for. We left the DMV with her feeling defeated and somewhat humiliated.

That’s the part I feel very badly for, for her sake. I want her safe. I don’t want her filled with sorrow.

Reaching a stage of life where she’s losing everything she’s familiar with, everything she’s worked for and struggled to maintain…her independence, her home, her ‘identity’ (through memory loss), is all very difficult for her. She still fights it daily, and I see the disappointment written on her face when the results are not what she might have hoped for. She’s at a place where it’s becoming increasingly necessary to rely on others. I know my mother very well. I am her, to a large degree. I know that the struggle is not to ‘find’ someone to rely upon, it’s the act of giving control of yourself and your life to someone else. It’s the need to ‘surrender’, rather than continue to struggle, day in and day out, no matter who is waiting to catch you and keep you standing upright.

This week my Christmas tree went up. I am a tried and true Virgo when it comes to Christmas decorating – everything on the tree has a purpose and a place, and there must be symmetry to it all, or it flies in the face of my nature, and will drive me to distraction to look at it. I’m not at an OCD level about it, I just thrive on order (and yet I’m a parent, go figure) and logic. I have been the tree decorator for more than 30 years. When I approached my teens, Mom was weary of the entire Christmas process, and had no like left for it at all, let alone love. Her children were beyond the ‘believing in Santa’ phase – no grandchildren had yet appeared – and her feelings of inadequacy in providing for her children were overwhelming to her. Christmas seemed like nothing more than a huge reminder of that to her. I took over decorating the living room, with the ill-conceived belief that if I just did a good enough job, if it all looked extra sparkly and bright; if every ornament and light were in just the right place….she’d be able to enjoy it, and might even love Christmas again.

I failed in my endeavors, year after year…and yet each year I tried again, and again, to reignite the fire for her. It never came back. The only thing that really came of it was I became plagued with a desire to create the ‘perfect’ Christmas tree, with whatever meager means I had, each year. Every December I choose two colors or some sort of ‘theme’ for the tree (rainbow flag lights, red and gold ornaments, all red lights and ornaments, and this year pink lights and silver ornaments) and spend hours aligning everything ‘properly’. No matter who I have lived with, or has lived with me, I’ve been the tree decorator, and I’ve done it solo, by choice.

This year, the boys wanted to help decorate our family Christmas tree. This year….I surrendered.

The result of my acquiescence is a tree with ornaments placed with no rhyme or reason all over the place – nothing is symmetrical…nothing makes sense…nothing is spaced out or planned….it’s not decorated in a dogged or fixated manner. It’s decorated as a child would decorate it…as two children did, with all the youthful eagerness and impetuosity that Christmas still holds for them, as I hope it always does.

It’s truly the most beautiful tree I’ve ever seen. Not because it’s ‘even’ or ‘proportional’ – but because it’s really a family effort this year….a family tree that we all had a hand in producing.

Mom has two weeks until her re-test. I’ve advised her that I will support whatever decision she makes about it. If she wishes to try again, I will make sure she gets there and has that opportunity. I will ‘study’ for the test with her. I’ve also advised her that of late she has mentioned that she feels like she’s losing control over everything, and to make a decision to retire from driving is a way for her, if you really think about it, to take control, rather than leaving the results to chance and having the DMV tell her what to do. If she goes that route, I’ll support that 100% as well. I’ve left the choice up to her.

I recognize how hard this is for her…all this transition, all this change, all this ‘loss’ (as she sees it). I am doing everything in my power to be compassionate and considerate and understanding, while still prompting for the changes that need to be made, and easing her into them. I hope that over time she learns to take comfort in spending more time with her son and her grandchildren, rather than lament what she left two hours north. I hope that over time she recognizes the ‘greater good’ that this is for, rather than sink into despair over not being able to do it all for herself any longer, and needing to rely on others…to rely on me…to take care of her. I hope that not having a lawn to have mowed and a driveway to have plowed and four bedrooms to have cleaned along with a kitchen, living room, bathroom, dining room, etc. seems like a weight lifted from her shoulders. I hope that she comes to realize that she’s earned the right to ‘relax’ a lot more than she’s allowed herself to do in the 83 years she’s lived thus far, and enjoy that relaxation for whatever years remain for her.

Most of all, I hope she learns to surrender….and to be at peace with it.


A Letter To My Older Self

Many times I have heard people ask someone the question ‘If you could write a letter to your younger self, what would you say?’ Even my therapist has asked me this question.  My letter would be simple:

Enjoy your life as much as you can, you only have one.

Choose wisely and truly who you love, and don’t leave heartache along the way to finding that.

I’ve even seen this posted on Facebook, challenging people to write or say something to their younger selves.

I try to not live in a world of regrets, wishing I could go back in time and change anything. I try to live in the present, conscious and aware of the past, and preparing for the future.  I realize that to go back in time and ‘fix’ anything, unless you are Sherman and Mr. Peabody, or H.G. Wells, is not a possibility.

I cannot, therefore, really place much stock in what I would say to my younger self.  That person is someone that I no longer am.  That person made choices and mistakes. He tried to learn from them, and to not repeat them, but could not repair them once they had been made. It’s all part of growing and living.  That person is someone I cannot change, and wouldn’t try. That person made me who I am today.

I can, however, say a lot to my ‘older self’, and still see it come to fruition.  I can set it aside and read it 30, 35, 40 years from now and follow my own advice. That person may need some guidance at the time through tough situations and to be able to recall lessons he learned in life that he may have forgotten along the way. That person is someone I am yet to become.

I have aging parents. They are both 82 years old.  Their bodies are failing them more and more over time.  My dad had a stroke in 2006, following the loss of his second wife a year before, and has resided in an assisted living facility in the dementia unit ever since. He can manage some of his self-care, but cannot live alone any longer, and some of his needs are more than his two sons can take care of for him. He has gone through bouts of depression and aggression over time when he is refusing to take his medication, and lashes out at the staff and other residents, physically and verbally.  He doesn’t get out much, was never much of a checkers person, doesn’t read as a hobby, and has very little to enjoy at this stage of life.  He goes through phases of hating where he is and simply accepting where he is.  He never once has progressed to liking where he is.

My mother lives on her own still in the house I grew up in.  She has seen her five siblings pass on before her as well as her parents.  Many of her long-time friends have also passed away.  She has wanted to live independently still, yet she cannot stand long enough to make a meal for herself (she buys pre-cooked and microwavable foods), she cannot kneel down to wash a floor, she has trouble with stairs, cannot shovel snow, etc., etc., etc.  So she is independent with a lot of assistance. My brother and I say ‘It takes a village to keep her independent’, and it’s true.   She needs a lot of assistance to stay ‘independent.’

I saw my grandparents age and pass, and have seen my own parents age to the point of frailty and struggle.  I know it’s not going to get better for them before they also pass…it will likely get even worse….perhaps far worse.  My dad will likely not know me at the end, and perhaps my mother will get there too.  There is time to get to know their young grandchildren, but they most likely won’t be here for or simply not be able to participate in their teen accomplishments and young adult lives.

I will one day be there myself.  With luck, another 35 – 40 years or more will pass for me before I pass on.

I have the ability to influence the rest of those years, and to influence the stage I will get to eventually to a very large degree.  At that time, I hope to look back on what I witnessed with my grandparents and my parents, and remember what it was like for me to see it.

If I were to write a letter to my older self, to be reviewed years from now, here is what I would want my older self to know:

Don’t regret the things you can no longer do.  Life is full of possibilities, no matter what age you are.  So often in our younger days we wish we had time to do this or that, and now you do have the time.  Try something new every day. Learn a song in Italian and sing it even if there’s no one listening.  Eat a food you never imagined you would. Watch a documentary to learn about something you never knew before.  Read a book you never thought you’d get through.  Talk to a complete stranger.  Smile 100 times in one day.  Always look for things you can do, rather than dwell upon the things you can’t do now.  If you do, life will always be a series of possibilities rather than a set of failures.

Your children never outgrow their need for you, it simply becomes a different kind of need. They may not need you as a parent; to tell them how to tie their shoes and clean their wounds and wipe their tears away and give them advice. But it’s just as important and valuable to be someone they can count on to love them unconditionally throughout their entire lives.  They will always be your child, no matter how old they grow….but they become adults eventually.  One day you have to stop ‘parenting’ them, but you never have to stop loving them.

Help is so hard to ask for, because you feel it makes you vulnerable, and you’ve never been comfortable with that.  Everyone needs help now and again.  It doesn’t make you weak.  Knowing your limitations and doing something to overcome them, even with the assistance of another, is a strength in and of itself. 

Just as it’s hard to age, it’s hard to watch your parents age.  Your children do not wish to see you suffering or going without.  Be honest with them and with yourself about your needs.  When you simply try to convince them you don’t need help, you are not sparing them anything……you are only making it more difficult for them in watching you struggle.

Don’t dwell upon the things you feel you did ‘wrong’ in life.  No matter how hard you fell, no matter how badly you think you failed… made it through…and rose above it. Be proud of yourself. Be grateful that you had the courage and the strength always to get through it all, no matter how difficult it was. You didn’t fail…you stumbled, and you picked yourself up and kept going.  

Tell your children everything you wish them to know, no matter how hard it is to say, while you still can.  One day they won’t have you to talk to, whereas your mind may not be as sharp as it once was, and they will be left wondering about a great many things in life.  

Love yourself. Until your very last breath you are a teacher, a role model and an example for your children, no matter how old they get, and for others.

These are the things I hope to remind myself of when I am older. I can always add to the list as I live my life.  Unlike the notion of going back to my youth and trying to fix the mistakes I made along the way, which is not possible, I can try to avoid making certain mistakes in the future.

I cannot say that I will be able to follow all the above advice to myself when I’m at the age to need it.

I do hope that I will try.