MenGetPregnantToo

Postpartum Depression: Early Symptoms and Preventive Measures

Few life experiences introduce feelings of euphoria and despair more quickly, consecutively and frequently than becoming a first-time parent. The elation of holding your first child can be as acute as the melancholy of postpartum depression.
But what if the latter were not only more manageable, but also foreseeable?

Dawn Kingston, a registered nurse, and PhD is Canada’s only endowed research chair in perinatal mental health. Before specializing in the causes and prevention of postpartum depression, she was a neonatal nurse focused on preventing preterm birth. Her research led her to examine the effects of stress on premature births, and low birth weights. The data began to lead her to the cause-and-effect relationship between a mother’s perinatal anxiety and depression, and the development of more acute conditions post-delivery. In other words, as with maternal instinct after birth, women often feel something is wrong before they even become pregnant. This can then manifest itself into postpartum depression.

   “One of the biggest predictors of whether women get postpartum depression and anxiety is if they had something not only during pregnancy, but before pregnancy as well. For women who struggle with prenatal depression and anxiety, as many as fifty to eighty percent continue to have symptoms postpartum. So we’re used to thinking of postpartum depression as this globular thing that happens after women have a baby, but (if you have) those symptoms prenatally, those symptoms very often continue, which is another reason to make sure you get help in pregnancy.” Dr. Kingston said, when we spoke recently.

By radarxlove

As is so often the case when attempting to overcome mental health issues, stigma is the tallest hurdle. Women who are, or who are attempting to become pregnant, will pay closer attention to their work schedules, their diet, and their exercise routine - generally with the blessing of their partner, family and friends. But expressing concern about stress or worry is still discouraged or dismissed. I asked Dr. Kingston why women were reluctant to broach the subject.

   “I think part of it is the media propelling the myth that the only mental health issue in the perinatal period is postpartum depression - I think that’s a big part of it. I think that the other part of this is that women who are pregnant are stigmatized and silent. Without even understanding there is even such a thing as prenatal anxiety and depression, women are afraid to ask their physicians about it. It’s interesting, when we’ve interviewed women, and asked what are their barriers to raising a conversation about mental health and pregnancy, some of them have given answers like, 'We want to be a good patient. We don’t want to talk about things that might not be an issue during our seven-minute prenatal visit.'”

Like many of us, they don’t want to seem a bother to their physician.

Upon hearing that a mother is anxious or worried about her pregnancy, it is natural for a friend’s or partner’s calming instinct to take over. After all, parenting is a tremendous responsibility that a mother and father are committed to for a lifetime. “Don’t worry, it’ll be fine,” seems a responsible form of encouragement. Unfortunately, this sort of support can be one of the biggest barriers to a mother-to-be who is considering mental health treatment, or who feels despair.

   “Three-quarters of women told us, ‘If my partner, or my mother, or my sister normalized or told me I was okay, I would likely not have raised it with my doctor.’ So it becomes a barrier. I tell women, trust your gut. At this stage in our healthcare system you must raise it with your doctor. They are not going to ask, so you’ve got to trust your gut that something is wrong. What is wrong with asking? There is no cost to asking the question whether this is normal or not.”

Barefoot and Pregnant - Ryan

A woman’s personal support system may not even be the biggest obstacle. Dr. Kingston explained that, shockingly, the Canadian Medical Association guidelines don’t support depression screening in primary care. Why? There is a fear that the screening itself will make the condition worse. There is a sense that talking about depression will be a catalyst to triggering the condition. However, Dr. Kingston says, the exact opposite is true,

“There’s no evidence. And we found in our work that women actually feel validated. You want women to be able to say, ‘That’s me; that’s exactly me.’ Then the next step is, where so we go from here?”

This triggers mental illnesses most nebulous questions, “What is normal?” and, “When is it time to ask for help?”

   “A normal life anxiety or a bit of worry over the baby, or the baby’s health, or (the baby) not eating the right thing...are not going to be long-lasting in general. You won’t have those for weeks on end; maybe minutes, maybe hours, but certainly not much beyond that. The diagnostic marker is always two weeks or more; for anxiety it’s more. I think, in general, it’s the longer you have something the more you should be concerned that it’s something above normal.”

Dr. Kingston goes on to describes acute situations,

“You’re worrying about things you might not have worried about before, and your worry is relentless; you wake up with it in the morning and you go to bed with it. There is this uncontrollable, agitating, restless worry where you just can’t stop it. Your mind is spinning. All the things that you do to control your normal anxiety and worry don’t work anymore. So it becomes this relentless kind of gut-wrenching tension, irritability, (a) sense of not having control.”

Trust in your instincts is invaluable. Raise your hand, step forward, ask questions. There is never shame in self-care. Approximately 9 months after conception, a parent becomes a psychologist, a relationship and grief counselor, a teacher and a doctor to their child for the rest of their lives. Time put aside for yourself becomes inversely proportional with your dedication to your child. Talking about your anxious feelings, and your worry about becoming a mother, is more easily said than done. But going into pregnancy with joy and confidence can lead to two lifetimes of benefit. It will allow you better manage the occasional despair of parenting, also to revel in its frequent euphoria.

By Adam Hilliker

 

Parents Should Claim Their Baggage

    “You have to stop looking at everything through the lens of your childhood.” 

    Shit.

    Therapy.

    Kenny Bodanis, oversize baggage is now being offloaded on carousel 7. Please report to the loading/unloading area and claim your slough. Then sift through it, and avoid bringing it home.

    I’ll soon be 47-years-old. I know have many good years ahead, although I doubt there will be many formative ones. I am fully formed. Any course corrections may not be impossible, but the rudder has rust, and the tanker has fewer kilometres ahead than it used to before reaching its final, fateful destination. And, of course, there is no backing her up.

    We are all the result of our genetics and our upbringing. Nature and nurture. The percentages of the recipe may be debatable, but the cake’s out of the oven: we are our parents’ products, for better and for worse.

Happy Mothers Day by Thomas Hawk

    
    We openly cite our childhoods as examples of wishes and fears for our children:

    “I don’t want my children to grow up with the same…”

    “I only hope my kids can experience what I…”

    “When I was young I was left to my own devices and I turned out...”

    “As a kid, no one took any interest in my passions; I don’t want that for…”

    Environments change drastically over a generation. Most parents are blessed with wanting what’s best for their child, and cursed with believing they know exactly how to make that happen.
We are also in the unique (and often overwhelming) position of being the sole authority, expert, and origin of our young children’s experiences and truths - as our parents were with us.

            The parenting tools we use to tweak our kids were accumulated in a box over decades. They are what worked for our parents, but they may not be ideal for our children.
Coming of age in a household fraught with strife and dissent may result in a parent with an exaggerated aversion to conflict.
An opulent and insulated childhood may produce a parent who crumbles at adversity and is incapable of self-reliance.
Patterns of abuse can be repeated from one generation to the next, as a child learns that physical confrontation is the sole solution for dispute.

    So much sifting, and straining, and skimming. Our childhood experiences are like trees overhanging a pool in the fall, it’s nearly impossible for everything to always be clear. Some leaves are so deep, they just have to be left as part of the basin. The pressure of retrieving them is too uncomfortable to be worthwhile.

Mother by Thomas Hawk

    
    As for the rest, often the work is difficult, but worthwhile.
Unlocking the oversized trunk and sorting its contents is daunting:

    Don’t need that; I held onto that?!

    That’s been there the whole time?!   

    Oh, that’s why this is so heavy.

    I’m learning the trunk is huge, but it’s never too late. That carousel keep turning, offering me my baggage with each pass; a Lazy Susan of my youth.
One item at a time. One today, two tomorrow, another next Tuesday. Eventually, I hope to have only the essentials - a little psychological gym bag.

    Gotta get started, though. My children are products of their parents, for better and for worse.

Alive Magazine - Falling Into a New Routine

May latest article from Alive Magazine talks about using September - the notorious back-to-school month - as the real springboard from which to launch changes and/or improvements to your own routine. New Year's resolutions are fine, but motivating yourself to make positive changes is challenging enough without kickstarting them during the dark, cold winter months.

 

Falling Into a New Routine

From Alive Magazine - Is Improvisation a Cornerstone for Dealing with Dementia?

From the July edition of Alive Magazine, this article -  entitled "As You Go Along" - asks : When you are a parent of a child, and also a child of a parent afflicted with dementia, how do you plan for what’s coming? And then asserts that sometimes, you just don't.

I'd like to thank two people who were not only instrumental in contributing to this article, but also as much in guiding me through a challenging year: Sabrina Dion and Caroline Meynard. These two women, thankfully, have as much experience with dementia as they do patience.

 Thank you for reading:

As You Go Along

 

Caring for Caregivers - Expert Advice on Coping with Dementia

Throughout the various stages of parenthood, people have always referred to “the woods.” As infants, once our children slept through the night we were (supposedly) “out of the woods.” However, the forest was far more expansive than those early parenting metaphors suggested. Toilet training? Woods. Feeding themselves? Woods. Walking? Woods.Tropical, temperate, boreal. Woods, woods, woods.

Recently, when my eldest child turned 13 years-old, I benefited from the wisdom of friends whose sons and daughters have passed through the fires of adolescence. I realized I was not out of any woods. I am now, rather, strolling the pastures between them. Drivers licenses and drinking ages were crouched like bandits in the forest beyond the next bluff.

But, as with many of my sandwich generation peers, the next thicket bloomed even sooner than predicted; my mother was diagnosed with Alzheimer’s disease and Lewy Body dementia. I have reflected on the trials, fears, and compromises necessary to see to it that she is being well cared for, as well as to accept what I cannot change. Through that article, and conversations since, I realized what a comfort it was for me to talk with not only other children of parents afflicted with dementia willing to share their struggle, but also to have access to the reassurance and expertise of those who support and treat victims of cognitive illnesses.

Though these diseases can manifest themselves through myriads of different symptoms, the caregivers’ challenges (and stresses, and fears) are remarkably similar. While families are often thrown into a state of panic by the realization of what steps must be taken to protect their parent, medical staff who specialize in caring for patients and their families rarely encounter a scenario they are not familiar with.

Sabrina Dion is a registered nurse at a private residence which specializes in caring for men and women at various stages of loss of autonomy.

She sympathises with those living with the emotional weight of moving a parent into a home for the first time. While altruism is an able motivator, the burden can detract from - and begin to deteriorate - the caregiver’s relationship with their spouse, their children, and their career. Dion says this can have devastating emotional costs:

Families are very upset, families feel a lot of guilt, families are going through a crisis.
Parents are no longer in their home, their safety’s at risk. So it’s a rush to get them into a safe environment.
It’s a struggle between, “How I am going to handle my home life?” and, “How am I going to make sure my mom or my dad, or either, or both is ok?”
And then I remind them, “What you’re doing is looking out for your mother’s or father’s best interests. You know they’re in an unsafe environment, and you know you can give them a better quality of life given you can’t change the outcome of dementia or Alzheimer’s.” 
This is where it becomes a mish-mash, this is where it becomes really challenging. You have to have a career, you have to get to work, you have to take care of your children. The you have to make sure that your parents - if they’re compromised with the loss of autonomy or of cognitive deficits - are taken care of as well. It’s a lot. Caregiver burnout, that’s the big thing that I look for...that’s my red flag.
Because you taking mom or dad to your home, and not being able to be there and not being able to understand, and burning out, is not going to help them in the long run.

Dominic Smith - Elder and Rehabilitation Care

Caroline Ménard is a psychologist, and coordinator of the Behavioural and Psychological Symptoms of Dementia team at the University of Montreal Geriatric Institute. She says it is often easiest to think of this time as a time to mourn^*:

It is no longer the mother or the person you knew. It is like mourning for the person you used to know; mourning for them before their passing. It is mourning for what was their daily life, which has now become the loss of a driver’s license or the person leaving their apartment. There is also the loss of the person they used to be; they may have been very reserved and now they act out. Those changes can be very, very emotionally difficult.

 Once the elderly parent is removed from the dangers of autonomy, the child and lifelong friends of the patient become spectators of the slow, long-term ravages of cognitive decline. The patient’s personality changes, their physical abilities diminish, and their memory becomes confused and diffused. Dion spoke to me about those feelings of helplessness:

You can visit your parent, and the parent doesn’t recognize you. That’s a really difficult one for children to deal with. That’s when a lot of the children come to my office and it’s like, “Wow, I can’t believe that just happened, that person is my mother.”
So it’s to remind them that if they call you your brother or your husband or tell you, “I know you but I don’t know your name,” just keep going with the conversation. Because there is no point in trying to pull things out of a person. It will get them frustrated, it will get them upset, it will get you upset.

Ménard points out that while specific memories may no longer be viable, emotional memories may last until the very end, and should not be ignored:

The person may not recognize a person as being their son or daughter, but they will still feel happiness when they see that person because of the history they shared.
I have seen people nearly unresponsive in their beds, but upon hearing their spouse’s voice, their eyes open and they smile. That is their affective memory.

Photo: Mariano Cuajao

Victims of Alzheimer’s may also become physically abusive to those they formerly cared for. This impulsive behaviour is the disease, not its host. It is an uncontrollable impulsive reaction. Although it may seem a very personal, hurtful act, the recipient must remind themselves they have done nothing wrong. They are caring for someone losing their filter.

Ménard iterates that each person digests the realities of Alzheimer’s in their own way. Some may react with urgency, while other need time, and distance. Reactions of families and friends can be as varied as the effects of the disease itself:

For some children, accepting what’s coming creates too much anxiety, it’s too difficult. Sometimes it’s better to just deal with this moment. But, eventually, you have to express your emotions. Support groups can be extremely helpful navigating a person through the changes which lie ahead.

She also stresses the importance of asking for help before burnout takes a physical and emotional toll:

There are many more resources than there used to be. There’s the Alzheimer's Society of Canada, for instance. It is important for the child to understand the illness. Since you yourself are a child, and you may also have young children in your life, you have to be able to express what you’re living through, and the emotions which are being triggered; that can be very helpful. You have to ask for help.

Guilt. That emotion that often forbids one from finding their way out of the woods. It is all-powerful, and ironically had its profile created throughout our upbringing with our parents. And no one can trigger a more pointed guilt reflex in a child than their mother or father. There is often so much unresolved, so much unspoken. And, now, as a result of cognitive decline, that relationship may be beyond redemption.

Dion reassures families that that time has passed, and children can feel pride in refocusing their energies:

I think a good reminder and takeaway is for children who have parents who have Alzheimer's or any type of vascular dementia or Lewy Body, is to remember that, whatever choice you’re making, if it’s for your parent’s best interests, it’s always the right decision. And you have to understand that you have permission to live your life and raise your own children. It’s the natural cycle of life.

Being lost in the woods is also part of life's natural cycle. With dementia, that journey can take years to complete. Perhaps the challenge is not seeking a path out of the forest, but to try to find the right tools for long-term survival, as well as company for the journey ahead.

Wayne S. Grazio - Lost (in one's thoughts)

* Interview with Caroline Ménard conducted in French. I provided the English translation.

 

 

Sgt. Pepper Puts a Spin on Connecting with Teen

We had a turntable in our basement, though I had no appreciation at the time of how inferior a machine it really was. It spun primarily Dr. Seuss's “Fox in Sox,” and its ‘B’ side, “Green Eggs and Ham.” Another favorite of mine was an LP of “Sneetches and Other Stories,” also by Seuss. The last track on the album - its “A Day In The Life” - told the story of Seuss's gender non-specific protagonist being stalked by a pair of pale green pants with nobody inside them.
In 1979, I was not yet 8-years-old; the thought of being pursued by abandoned trousers was darn spooky, thank you.
My records were decorated with chalk doodles and tattooed with permanent needle drags. But, who cared? The machine, and the stories it told, were timeless companions...until, that summer, I was introduced to what true magic could be conjured by a vinyl record.

My family’s semi-detached cottage was in semi-industrial suburb on the island of Montreal. Several times each year, the six of us would pack ourselves - and our patience - into a midsize sedan and drive five or six hours west to visit my first-cousins in Toronto. The three Ontario brothers were, on average, ten years older than I. So, not only was I careful to pack a healthy imagination for a long drive sandwiched between by siblings in the back seat, I was also smuggling a healthy portion of hero worship for the visit that awaited me.

As with most homes that are not your own, my perception of the house in the borough of East York was that it was filled with cool stuff. There was the secret kitchen drawer filled with Twizzlers and marshmallows. There was an upright piano guarding a basement room whose floor was coated with orange shag carpeting. As if waiting for a scene from Studio 54, the matting continued up the side of a bar, whose melamine counter was illuminated with red and green pot lights which resembled oven burners inverted into the ceiling.

Trippy. Even for an 8-year-old.

Each of my cousins’ bedrooms had as its centerpiece a high-end hi-fi system, with hearty speakers of dark wood and black mesh hiding behind them whatever magic made the music.

The stereo offered only two sources of entertainment: an AM/FM radio...and “phono,” which channeled the turntable.

While I sat cross-legged on his bedroom floor (my 1979 joints were more forgiving than they have been in the 21st century), my cousin selected an album from the horizontal stack in his closet and said, “You should listen to this.”

He handed me a pair of headphones which were so large that, once they were clamped over your ears, one could not help but compare oneself to Princess Leia, whose brunette Kaiser rolls had become legendary two years earlier.

The ‘phones were umbilically connected to the amplifier by the granddaddy of electrical cords - a black, coiled cable long enough to remain attached to your headphones and still offer a freedom of movement which would compete with the cordless technology a decade into the future (until it became a knotted mess as a result of too much pacing and multi-tasking).

The headphone jack sparked and hummed as I connected it to its female counterpart - as though whatever was bottled inside the machine sensed its imminent release.

Moments later, as the needle skated along the first inches of vinyl groove, I was introduced to “Sgt. Pepper’s Lonely Hearts Club Band.”

What a funny name, I thought.

Then, immersed in my first stereo recording experience, I was surrounded by an orchestra tuning up, followed by a rock band’s thirty-nine minute story which began “...20 Years Ago Today.”

Thirty-nine years later, my wife and I smuggled our thirteen-year-old son’s Christmas present out from the corner of our bedroom - an Audio-Technica turntable.

Everything old is new again.

In our basement, leaning up against books of decades ago by Ayn Rand and Stephen King (the former my wife’s, the latter mine), stood a dusty collection of mistreated vinyl: Faithful Seuss, Hitchcock stories, and Batman adventures. All of which were fettered with more scratches and speed-bump warps than any needle could handle.

The old gang was no match for a new phonograph.

This is why my son’s gift also included a certain album whose cover alone could captivate one for hours.

“Listen to this.”

Fate has its own sense of timing which often dabbles in the extremes of “perfect” and “horrible.” Ron Howard’s “Eight Days a Week,” was released in 2016. The following year, the world would celebrate the 50th anniversary of the Fab Four’s seminal album. As a companion to the musical landmark, PBS broadcasted “Sgt. Pepper’s Musical Revolution.”

The documentary dissected the LP: how it was recorded, why is was recorded, what techniques were used, and how innovated the band - and especially George Martin - had to be to glean the sound they wanted from 1967 technology.

Perfect. Fate provided my eldest with a Sgt. Pepper master class during the run-up to Christmas.

 

Turntable by David Lenker

 

While my son’s gift was uncovering the revolutionary magic of analog needles and grooves, my gift was reliving my adolescence through the hums of base notes and the vibrations of rock-band-meets-orchestra working its way through my bedroom floor.

In his room, just below mine and my wife’s, the record was spun over and over, with brief pauses only to rotate from side A and back again.

Nostalgia is a creeping companion. It appears to some as re-creations of memories, to others as the mechanical wonder of a needle racing round and round through a vinyl canal, digging from them the ghosts of an English quartet.
I think this is where the past is a wink ahead of the future.

The past was never instantaneous. Anticipation and patience were things to be celebrated: the moments during which the record spun, but the needle still searched for a composition’s first notes; the slow-motion retreat of a tone arm back to its seated position awaiting whatever jewel may be encrusted in the B side of a classic work.

Digital is instant. Digital is right now. To lag is to fail; to wait is to waste. There is no anticipation in buffering, only aggravation.

A vinyl record is, like a child, is something which must be cared for; something which takes time to play itself through; something to discover.
The only thing which gives more pleasure than marvelling in discovery is being awed by rediscovery.

I will never relive my first encounter with Green Eggs, or Hitchcock, or the Batman. But I can, thankfully, revel in my reintroduction to Lovely Rita (where would I be without her?). All thanks to a little help from a revolving platform, a curious teenager, and that infamous band leader, Sergeant Pepper.

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Alzheimer's and the Sandwich Generation

It was her makeup application that first made me think something was not right. Foundation that was a few millimeters short of her hairline, and a few more from her jaw.
Odd, I thought.
In hindsight, I recognize the irony—misapplied camouflage attempting to conceal a slow deterioration. A failed cover-up.
What gradually followed for my mother were lost words and mild disorientation.
Then, crisis.

As with addiction, when reaching out to someone with dementia one can only prod, and suggest, and hope. Often, however, there must be a bottoming out—a physical or psychological cellar, a darkness through which the ill cannot see without guidance and advocacy.
My mother fell into that cellar this past April.

The woman who had, after her own mother’s passing, assumed the role of family matriarch, was being crippled by the mysterious demons of dementia and delirium.
The transition was gradual: at first forgetfulness and disorientation, a solemn diagnosis of Alzheimer’s, and ultimately a terrifying psychosis triggered by the unforgiving combination of a urinary tract infection and slow cognitive decline.     

Two weeks earlier she was misplacing keys and struggling to comprehend Visa statements. Now, her apartment betrayed a scene of violence: a chair strewn in the hall, food and Corningware on the floor, and stories of strangers creeping up the back stairs where no stairs existed. To her uninitiated children, it was a psychological supernova; a terrifying introduction to the enigmatic and sometimes violent world of delirium.

Emergency Room, restraints, antibiotics, examinations, time.

Seven months later, the urgency is struggling to be replaced with acceptance, balanced with fatigue; the responsibility of a child towards their parent is wrestling with the responsibility of a father towards his children, and that of a grown adult granting himself the gift of self-care.

****

Jose Carlos - Alzheimer

ACCEPTING THE LOSS OF THE PERSON WHO WAS

In my experience, most adults have complicated histories with their parents, which inevitably colour any present day interactions. There are incidents which are both unforgiven and unforgotten. Our parents try to compensate for their own regrets by regularly offering course corrections on our own parenting voyage. Nearly every adult child / parent relationship is a full plate drizzled with appreciation and overbearance; with affection and exasperation.

Dementia unplugs the pool of personal history. All that was is drained away, one day at a time, and is replaced by a new iteration of a being who is not quite whole.
Reconciling one’s self with that, means learning to find an escape route through which you can permit yourself to be free of that history. It becomes a frank exercise in acceptance and objectivity: those arguments unresolved, and those wounds unhealed, can no longer be allowed to demand your energy, or your time, or your impatience.
Your parent, in almost every definable fashion, has become your child.

It suddenly became necessary for me to re-centre my thought process. I found it often useful to imagine my mother a stranger. How would I care for the elderly mother of a close friend? Which version of myself would I want to present to a septuagenarian in crisis on a street corner?
Those answers were simple: patience, kindness, and advocacy.
A relationship with acceptance, and absolutely no sense of a shared history.

Those touchstones of my relationship with my mother forty-five years in the making—my parents’ divorce and its consequences; personalities in conflict; disapproval and debate–must be buried in a grave alongside what used to be the healthy psychological profile of my aging parent.

Alzheimer’s and dementia: the ultimate arbitrators of any relationship.

 

Susan Sermoneta - L9999251

DAD, WHAT’S HAPPENING TO BUBBY?

As a child, I have become responsible for my mother’s well-being. As a parent, I am constantly standing on a teeter totter’s fulcrum, trying to credit my children’s intelligence by keeping them informed, while balancing that against the preservation of their memory of their grandmother who used to be well enough to host them for sleepovers and lead them on subway trips to see the Nutcracker.

Protectionism was my first instinct: euphemize recent stories of screaming, physical restraints, and terrifying hallucinations by replacing them with, “Bubby’s okay, and she sends her love.”

Much of that language trots alongside the timeline of the disease. During the first weeks, diagnoses are uncertain, and prognoses are hopeful. Time, though, slowly absorbs equivocation. Now, in early December, it is likely my mother is as improved as she will be. Throughout these months of treatment, bevies of conversations with physicians, nurses, mental health professionals, with my sister, my wife, and my mother’s lifelong friends, have helped me become comfortable with my own understanding of this disease. The result is my being more able, and more comfortable, being truthful and straightforward with my children.

They are old enough to understand that if I am not bringing them to visit their bubby, it is probably best they are not exposed to what lies on the far side of that hospital door.
My answers to their questions have finally become frank. We speak of depression, and dementia, and Alzheimer’s. At a psychologist’s request, we send videos of the grandchildren. I explain to my children that bubby becomes agitated and sad, and seeing them, even though a tablet’s screen, brings her great comfort.
It is one of the cruelest dimensions of this type of psychological disintegration: there is just enough residual intelligence and understanding for my mother to recognize the grandchildren, and to ask after them, and to be comforted by their image. However, enough logic and dimension has been stripped away that every day brings with it bursts of fear and anger, and outbursts of tears and confusion.

“How is Bubby?”
She’s not well. She gets very sad. But she misses you. She loves hearing stories about you, and seeing pictures of you.
And she probably won’t get better.

 

Susan Sermoneta - L9999251

GUILT VS SELF-CARE

Summers, for me, are a period of lighter workloads and more flexible hours. If there was good fortune to be found in what was transpiring with my mother, it is that the crisis was born in late April.
This resulted in my sister (a school teacher with similar flexibility during the summer months) and I were in a temporal position of being able to become full-time advocates during an emergent situation.
Each of us was on-call either daily or every second day at the hospital, asking questions of the medical staff or being bedside attempting to digest a prognosis. We were able to be present during her UTI diagnosis and treatment, and then throughout the decision-making and healing process of a double craniotomy. We were there to provide recognition and comfort when she was moved for a short period into a residence, and then researched on her behalf and advocated for her readmittance to the hospital when her cognitive and behavioral condition became once again unstable.

Summer’s end brought with it the fall of our flexibility, and the onset of not only real life (school for my sister and my children, and my more demanding workload), but also with it the complicated logistics of my mother no longer being at a residence down the block from me, but rather in a hospital which would demand extra hours of weekly commuting were I to attempt to maintain my previous visitation schedule.

I was also beginning to understand the toll of caregivers’ fatigue. I was short-tempered with my family, not sleeping properly and was slinking back to fast food and potato chips as dopamine delivery systems while I was stuck in rush hour traffic. (It became a ritual that I meet my sister outside her house prior to hospital visits with a McFlurry for each of us. What she never knew is that, when I was alone, I upsized my small to a medium. Here lies the confession, sis.) 

Therapy helped. Although guilt is the world’s most sensitive hair-trigger. Every call from the hospital elicits a churning of regret. My ability to overcome and assuage my guilt is directly related to the nature of the conversation.

The calls I have learned to most easily recover from are those from the nursing staff informing me my mother has fallen, but is unharmed (a several times weekly occurrence), or the necessity of hiring someone to care for her toenails, or the connection or disconnection of the television.

Conversely, guilt perverts itself into shame and sorrow when my mother calls asking if I have any room in my house, even for just a day or so, so she can live with her family while she obtains a new credit card and shops for a condo. The pleas are tear-filled. I can hear my mother fighting to sound as rational as possible, as though she were aware that her psychological health was tenuous, and under constant evaluation.
(Even in relaying these details, my guilt coerces me into justifying that, during those same conversations, she will confide in me that there are men chasing her, that she had been out for a drive earlier that day, and that she has been caring for her cat. All this while not realizing she has not left the hospital for months.)

Many people who visit a counselor for their marriage or other relationships are told: you cannot love others unless you learn to love yourself.
That seemed to me the mantra of ethereal hipsterism until a few months ago.
Now, I accept it as a truism.

My mother is in a place where she is being cared for. We are fortunate that, despite the nurse’s salary she earned throughout her career, she was a careful and steadfast financial planner and we are thankfully able to provide companions for her.
I am learning to give myself permission to be my own first priority. Who do I want to be? How do I want to feel? What kind of energy do I want to reserve for my own family?
Finding the answers to these questions is far easier that implementing their solutions.
My mother’s friends and more distant relatives, who are satellites to her predicament, grasp for news and explanations and understanding. Helplessness can be excruciating. I have learned to answer only when it is convenient for me, and only truthfully. I have accepted that, if my mother’s condition has worsened, or improved, or stabilized, it is not because of what I have not done. It is because this is the nature of this disease.
No amount of my attention can scrape away plaques and tangles, or frighten away hallucinations, or defeat depression.
Her bedside will welcome me when I am available, and will wait silently during my absence. All the while, dementia will creep in through the cracks, whether I am posted guard or not.

****

The gifts of a long-term illness such as Alzheimer’s are as few as the memories the disease leaves in its wake. However, its lessons can be ironically abundant and fruitful. Discovering those lessons, and drawing meaning from them, is the slog.
I relentlessly try to remind myself that each day offers rewards in some form. A hug from my children, my wife’s humor showing up in a text, driving in the middle lane while absorbing an hour of my favourite podcast.
Forever in the shadow of those moments lurks the awareness of the life my mother is “living,” a grey room in a geriatric hospital. Sadness. Fear. Loneliness. Confusion. The cruelty of a disease which strips away not only mental souvenirs, but with them wedges of personality and understanding.
Since beginning to speak aloud (and write) of these circumstances, I have met many peers and friends who have been affected by dementia in those people dear to them. Many who suffer from Alzheimer’s are left docile and accepting, even from within their cognitive blindness. Others, like my mother, are treated more cruelly. The remaining aspects of their personality are darker embers, sediments not deglazed.
Why? What determines one’s experience with dementia? Genetics? Personality profiles? Environment?

The only certainty seems to be all the things which will forever be uncertain. And acceptance seems to be the only state which allows us, the satellites to the disease, to continue to function from a place of patience, and gratitude for ourselves and for our own families.
It is a mental exercise of daily personal challenge and learning. Should I ever become afflicted by Alzheimer’s intellectual invasion, I hope that—at the very least—I can remember a life lived without regret.

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