Talking About Dementia

How does one begin to discuss the complexity of life with dementia?

Let’s start by acknowledging the trauma involved.

The trauma of the diagnosis, the trauma of the multiple losses it engenders, the trauma of the fear surrounding the diagnosis, the trauma of the isolation so many coping with the disease find themselves in, the trauma of lost relationships, lives, shared memories, and futures, the trauma of the years-long nature of the disease, the trauma of lost opportunity, productivity, hopes, and dreams, and, of course, the trauma of the financial blows engendered by the disease.

And need it be said that all these losses and traumas apply to both caregiver and patient?

And then there is the trauma of putting a loved one into the care of a facility. By the time a caregiver reaches this step, assuming that they do, s/he is likely tapped out, burnt out, profoundly tired, overwhelmed, and simply beyond his or her capacity.

But, however much one longs for, and expects, respite in the aftermath of this step, what happens next is, in addition to respite, more adjustment, new losses, and new responsibilities.

A caregiver at this point becomes a widow or widower who is still married, in contract with an expensive facility but still holding final say in decisions of import, saddled with the challenges and frustrations and possible freedoms of being responsible for each and every facet of both home life and the institutional life of one’s loved one.

And very possibly experiencing, in addition to the grief, fatigue, and anger that plague a caregiver, guilt as well.

Dementia’s road is a long one. But, I think I can assert, for most it is not convoluted by twists and turns. The trajectory of most dementias appears to have been, as this point, well mapped and described. What we don’t seem to know nearly as much about is, no surprise, the whys and hows behind dementias, the causation behind dementias.

The three big emotions (described in earlier posts) in my now five year plus experience with my husband’s Alzheimer’s Disease–grief, fatigue, and anger–repeat and repeat for me, and I believe for most, throughout the disease’s long course.

What changes is the skill and facility with which one can predict, navigate, and ride the waves of these emotions.

The path to peace lies in acceptance of the reality of one’s own changed life, the life of one’s loved one and family, and, eventually, a return to self.

But acceptance and a return to self is a process, something not achieved quickly or readily, a development that arises within after serious, and often long in coming, internal change.

I use both external tools (walking, journaling, time spent with trusted others, support groups), and internal tools (my life-saving “six practices”, which I have posted on, therapy, and meditation).

I’ve made an informed choice to not utilize, for now, antidepressants or anti-anxiety medications (although I respect the choices that others have made to use them).

The gold lies, for me, in what I call my internal practices, and I have to work them daily or trouble brews for me.

Some friends and family “get it”, and seem to understand, either intuitively or through their own experiences, how they can support a caregiver. Others, too many, do not.

This is what you should do (as addressed in my previous post) if you want to support someone going through trauma:

–Inquire

–Listen

—Listen more

–Ask how you might help

–Show up

Remember that caregivers are both caring for someone who is struggling with profound loss and trauma, and are, themselves, struggling with profound loss and trauma.

We are tough, resilient, and always learning and adapting. But we are also tired, profoundly sad, and vulnerable.

–Do not presume to know (ask)

–Don’t instruct or advise (listen)

–Don’t suggest an activity or a book, even if well-intentioned. The person you are addressing might already be doing said activity, or not have the energy for it, or not have the energy to read, or might well be able to write the book him or herself, if time allowed!

–Finally, do not abandon or isolate the caregiver or the patient (just show up).

So much of the fear and confusion surrounding dementia could be, I believe, prevented if people took the time to actually see, hear, and talk with friends, neighbors, and family members with dementia and thus experience, see, and hear what dementia is all about!

***Shared in love, in the hope that this might make this long road just a bit easier for someone.***

How To Talk To People Who Are Struggling, Redux

I didn’t think I’d have to do this. We have to revisit how to talk and how not to talk to a person experiencing deep loss?

Again?

Apparently we do. This became painfully obvious recently.

But really, after all this time–coming up on five years–spent coping with the loss of my spouse to Alzheimer’s Disease, of caregiving, of coping and coping, and I am again blown away by the–how shall I say this?–lack of sensitivity on the part of too many others, people I thought were on my side, on my husband’s side, people I thought cared.

Deep breaths. It happens.

Let’s begin with three don’ts.

Do not abandon

At some time or another each of us will not rise to our own standards. We will let someone down. It happens. Correct your course; don’t keep repeating your silence. Just show up–when, where, and how you can–and apologize for your absence.

Call. Write. Email. Message. Send a card. Send an ecard. Send flowers or a plant or food, if you want. Visit. Inquire. Show interest. Ask how you might help.

Why do so many find this hard?

I believe it’s fear. Anything cognitive–mental illness, suicide, addiction, brain injury, stroke, dementia, etc.–still, today, has stigma attached to it. Why, I do not know; it’s not like these are contagious diseases!

All the major losses I’ve experienced in recent years–my brother’s suicide six years ago, my older brother’s recent death from Lewy Body Disease, and my husband’s slow dying from Alzheimers’ Disease–carry a stigma that other diseases do not. Which in turn makes the road one walks with them even harder, scarier, and more lonely.

Don’t participate in this. Just show up.

Do not assume that you know what another is experiencing

You do not.

Unless you are in the privileged position of being a very close confidant with the person suffering, you do not know.

Do not instruct. Do not tell them what to do, or when, or why. Do not pontificate, do not mansplain (do not womansplain!), do not condescend, do not attempt to educate, and do not inform them of the “true nature” of their situation.

Say what?

Can you imagine saying stuff like this to the spouse of someone dying from any other disease, say, cancer?

Why do we inflict these attitudes on people? Again, I believe that the answer lies in fear on the part of the speaker, and their desire, conscious or not, to shut down the suffering friend or relative, thereby easing their own fear that arises when they listen.

Is this is how we want to treat our friends and relatives who are suffering?

Not I. Don’t do this!

Do not dominate the conversation with someone who is suffering

Do not inquire, show interest, ask for information about either the caregiver, or the person with the diagnosis, and then tune them out. It’s remarkable how often this happens.

By interrupting. By interjecting digressions. By shifting the topic to yourself. By changing the topic to your experience with dementia–your parent, grandparent, aunt, what you’ve read on the subject, what you recently heard on radio or a podcast!

How does this help the person you are standing opposite, whose life has been shattered by a dementia diagnosis?

It doesn’t.

What this behavior does do, again, is shut down the person suffering, the person about whom you claim to care. It’s shifted them into not only the role of your listener, but, often, of showing empathy and concern for you.

This is not an experience limited to dementia, however, this might occur more often in the context of dementia. If you find yourself doing this, you might want to talk to someone about it as this behavior suggests that you need to be listened to yourself, and to work on processing your own grief.

So, then, what should we do when trying to show support for someone suffering?

Stay in touch

Even the littlest bit of contact helps. If you’ve let time lapse, apologize and jump back in when you can.

As mentioned, any and all contact is usually good. Don’t worry so much about offending; listen, take the other in, offer sympathy, and, if appropriate, offer help.

Just show up.

Listen

Listening is an art. It needs to be learned and practiced, like all arts. Listening requires something quite remarkable: it requires that we put aside, for a while, our own concerns, our egos, and our fears. Not deny them. Not forget them. Just set them off to the side, like an unwanted glass at a table, for a bit, while we attempt to enter into someone else’s world.

It’s remarkable how many of us struggle with this, and well into later life. Practice and it gets easier. Remind yourself that you will come back to all of your own concerns. But that, for now, you are listening to another.

And that doing so is a powerful gift that you are giving to another.

Refrain

On pain of certain death, excommunication, or ostracism, refrain from becoming instructive, judgmental, bossy, or critical of someone who is suffering.

This is not your role! Your role is that of supportive friend, relative, or neighbor. Not teacher. Not judge and jury.

Remember that you likely have not earned the right to act in this manner with this person. It might sound strange, but we have to earn the right to instruct another. And it doesn’t come cheap or easy!

Quiet down, listen, or as it’s said on social media, STFU

Giving comfort to someone in deep pain is a great deal like dancing. Or skipping rope together. Or belaying sheer rock face with a climbing partner. Or like merging onto a busy highway. Or like making love.

You have to learn how to coordinate time and need and movement. Yours, and that of the other. When to halt, when to move, how to move, how to listen. To yourself and to the other. How to quiet your own mind and needs so that you can hear the other.

This is not easy while our own ego screams for attention, time, the spotlight. But if we are going to be there for one another when illness, loss, and death comes calling–and it does, it will, for all of us–we need to learn how to quiet our own minds, and take in the energy of another.

It’s either this, or go it alone.

I know what my preference is.

Christmas, Without

December 18. Christmas, again.

Thanksgiving over, Hanukah too. The winter solstice just days away (thank heaven). Christmas Eve and Christmas Day a week away. Typically, so much joy and fun, despite the extra work!

This year, though, was different. This was the first year in decades that I celebrated the holidays without my husband.

As you might know, the last five years have been stunningly hard on me and my family. I lost my brilliant younger brother five years ago last spring to suicide. My husband developed Alzheimer’s Disease and is now so advanced in the disease that I can no longer care for him at home. He now lives in a memory care facility. My beloved older brother died last June with another dementia–Lewy Body. Meanwhile, I lost my dear mother in law, several close cousins, my beautiful and aged tabby cat died in my arms, and my fiction and poetry writing have been severely disrupted.

Ouch.

A number of practices have helped me not just survive this challenging time, but learn and grow within daily pain. I’ve written about some of them. They have been lifesavers.

Someone told me, upon hearing about what I call “my practices”, that I was becoming Buddhist. I don’t know about that, but they seem completely compatible with Buddhism.

No one advised me to develop these practices; they appeared within me in the midst of numbing pain and fear (fear that I would become incapacitated by pain if I didn’t find ways by which to tame it). They made perfect and immediate sense, were calming, freeing (and free), and always available. So I grabbed ahold of them, clung tight, and have used them for several years to help me keep my head above water.

These then are my top six (I have a few more) practices:

Be here now

One day at a time

Focus on what is working and present (not on what is missing or wrong)

Breathe

Self-Compassion

Detachment

None of this should sound new; these are ancient practices, tried and true ways of taming our panicky (or sad or angry or depressed) minds, and of fostering calm, love, and vitality.

They sound deceptively easy to do, close to touchy-feely, almost sophomoric. They are anything but.

Applying oneself to developing just one or two of them will keep you busy for months or, more likely, years.

Detachment, for example, is not so much a practice as the end point of a complex process. Whole books, articles, and essays have been written about each, and for countless generations. And in surprising and intriguing ways, focusing on anyone of them leads one to the others; they are encircling and entwined with one another.

What did this have to do with Christmas, this Christmas, the odd, sad, and nearly surreal imitation of what I, and my family, have done for years at holiday time?

In the days leading up to Christmas, I noticed that none of my six practices were working. Meaning that I had been feeling so blue, bereft, out of step and lost during the season that none were helping my energy. On the plus side, I hadn’t panicked. Having gone through five years and more of loss, I have become used to feeling disoriented, and have learned to relax in the face of it. It’s the “new normal” for me.

But on one particularly difficult night I went to bed concerned. About myself, for a change. When will this change? And how? Will this grief never end?

Part of the problem is that I am out of step with much of the rest of the world which, now, seems to me to be busier, louder, and more active than ever. And all I really want to do is sit and stare. At a fire, the lake, a tree, a bird. All I really want to do is rest and heal. This is not easy to do given that little if anything stops for grief. Especially for caregivers.

So I fell into an uneasy sleep, not sure when or how I would find my vitality again. I was able to remain asleep for seven to eight hours (itself a sorely needed change), and pushed myself to waken when my dreams became bothersome.

Then this appeared in my mind, without warning, as clear and arresting as fresh ice forming on the lake: focus on what is.

Even if not positive, ideal, or what I want, even if scary or painful, shift your focus to all that you are, to what is present, to what is, what you are surrounded by, enjoy, and benefit from.

And give thanks.

I did, and immediately felt surrounded, and supported, by so much. I felt a rise in my energy and a willingness to get up and about. Life suddenly seemed, while not free of pain or daunting challenges, rich and beautiful again.

My life beautiful? Rich?

That seemed a stretch. And yet it is. For then, at that moment and for much of that day, it was. I had found the lotus amid the mud. And was beginning to experience firsthand the absolute interdependence of the two.

And then–yes, there’s more–I felt the old and familiar, but not recently felt, push within to write. And I sat, keyboard beneath my hand, and composed this.

Hallelujah! What a precious gift!

Imagine

What might life be like if you allowed yourself to feel completely safe?

If you let yourself relax in the face of any challenge knowing that you, no matter how alone, overwhelmed, or scared, always have yourself–your energy, skills and insight, courage and strength, resourcefulness, and resilience–with you at all moments of night and day.

And, what might life be like if you stop believing the myth that the circumstances with which you struggle are “a phase” that someday, somehow, you will come out of and then return to your old self and former life?

How might life change if you allowed yourself to accept reality on its face? Could you find richness, wonder, and beauty within its pain and confusion?

Last, how might you feel if you gave up the notion that you are misunderstood, unseen, and unsupported?

And instead believed that you are understood, seen, and held?

I love these questions. The first two recently surfaced from within. I was blown away by them, scribbled them down, and have mulled them over for some days.

The third urging came to me from Enneagram materials. It’s a powerful exercise that I’ve toyed with for years, and am now taking more seriously.

And here’s one more, a whisper of encouragement that arrived at dawn a few days ago.

Love is the answer to despair. There is no other way.

Upon hearing this unbidden gem sound within, my heart opened and I relaxed. Then I gave thanks, and fell back to sleep.

Grief, Fatigue, Anger

Grief, fatigue, and anger. A heavy trio of intense feeling. One with which I am now very familiar. But I wasn’t so much a while back.

A year ago a shift occurred in my understanding of these emotions, feelings that I kept rolling through in the face of Jim’s dementia. It was a quiet shift, unnoticed by others. But, to me, it was so large that I felt as if a weight had rolled off of me, softening my judgment of myself.

I was at the lakefront, walking in snow, in mid-afternoon. It was deeply cold but bright and sunny, the kind of day that pulls Midwesterners out of our homes in winter, into the outdoors. I was impressed with the beauty of the snow blowing over the sand, and the lovely swirling patterns etched into both by the wind.

Inside, I was miserable. I ached with fatigue, grief, and anger, and felt buffeted by wave after wave of these powerful emotions, as I had for a long time.

At this time, the early winter of 2022, I’d been coping with Jim’s cognitive losses for well over two years. I was not a newcomer to caregiving, or to Alzheimer’s Disease, or to the demands that dementia puts on patient, spouse, family, and friends.

My grief, fatigue, and anger were present, to one degree or another, everyday.

I was weary of my emotions and baffled by their intensity. Daily I struggled to cope with the loss of my husband–my best friend and partner–and our marriage, his growing needs for assistance and care, the loss of my writing, and my skyrocketing responsibility for every detail of our lives.

I know now that at that moment, at the lakefront, in cold wind and bright sun, I had met the first wall, for me, of this disease. I had had it, and I turned away from the lake and the wind toward the west where the weather was calmer, and sought inwardly for an answer.

I received one.

A voice within stated, you are experiencing great and multiple losses and thus grieving, adapting to new roles and demands nearly everyday and so exhausted, struggling to maintain your own work, your own life, in the midst of this, and angry that your needs, legitimate and meaningful, are not being met.

Grief, exhaustion, and anger.

How not?

At that moment, hearing this kind and matter of fact voice within describe my reactions to the changes taking place in my life calmed me.

Tremendously.

I remember thinking, what an amazing insight! Perhaps, perhaps not.

But for those of us in the thick of fighting any battle, in the trenches, especially if we are a person who has a long history of asking a lot out of herself and putting up with little in return, it can be hard to see the toll that a situation is taking on us.

When we can clearly see what we are up against, what we are fighting and struggling with, we have won half the battle: we can finally see things for what they are.

In hindsight, this might appear obvious, and we might even feel a bit foolish. Don’t indulge that voice; the smoke, noise, and strain of battle obfuscates all. Slow down, reflect, see.

And always, respect yourself and what you face. If you feel overwhelmed, it is nearly always for a good reason. We cannot begin to cope effectively with problems until we can step back, observe, and see them clearly.

Balance! Or, What Really Happened During The Pandemic

Last Sunday’s edition of The New York Times overflows with writing on the pandemic.

After all, we just passed the first year anniversary of lockdowns across the United States. Every reporter in the nation seems to be saying, let’s rehash--one more time–our reactions and responses, our experiences, the gains and the losses of this extraordinary year.

Well, why not? It has been a bizarre and life-altering year!

But while the Times of March 14 is packed with descriptions of experiences during the pandemic, I cannot find myself in it. My experiences. And the experiences of the many that I know personally, and of those that I do not know personally, but know of.

Now maybe I just didn’t look hard enough.

But if the past year is any indicator, there isn’t going to be much written about what I, and many others, have gone through. And that is the experiences of those of us who have gone to hell and back during the pandemic while we struggled to cope with, in addition to the challenges posed by pandemic, personal loss.

Not losses occasioned by the pandemic–which have been nightmarish enough for far too many. But the losses that would have happened to us, in all likelihood, pandemic or not. And which the pandemic, with its limits and restrictions, its fear and isolation, made more painful, more surreal, more difficult to bear.

Let me explain.

In March of 2020, my partner met again with a neurologist to discuss disturbing changes in his cognition. With memory, his ability to problem solve, with orientation and directional sense, and with balance. During this visit, the neurologist stated that, at that time, he did not see signs of dementia.

This was a change from our previous visit with this doctor, and was a great relief to hear!

Time passed.

Lockdowns in our Great Lakes area commenced, life changed for us as it did for all, spring passed into early summer, turmoil and demonstrations hit many streets and, to our pleasure and delight, our adult daughter moved back to our area, quarantined for several weeks, then moved in with us, staying for months until she moved out in early 2021 for a demanding job overseas.

Much happened during this time. On the political stage, and much at home, in our daughter’s life, in my work life, and between me and my partner. All the while, the pandemic swirled about us, informing every day with its challenges.

But the major event of this time, for us, was not the pandemic, nor our adult child’s professional achievement, nor the resilience we showed in the face of the pandemic. No, it was the blow inflicted by the signs of precipitous cognitive decline in my husband that began to show in the summer and fall of 2020.

Then, during our summer appointment with the neurologist my husband was told that he was showing signs of dementia. And, during our autumn appointment, a firm diagnosis of dementia was reached. Last, during our most recent appointment, a diagnosis of Alzheimer’s Disease was handed to us.

I had driven us to the appointment, as I’ve done all our driving for nearly a year, and I recall driving home in a light snowfall through a wooded area, an area that normally I would have enjoyed seeing in a dusting of snow. But I was sobbing so hard that I considered pulling over. I didn’t. I’ve discovered in the last several years that I can cry anywhere and still function, including crying in the car.

My husband did not cry. He sat silently in the passenger seat beside me with the pale and shaken look of someone who has just been informed of the death of a loved one. He looked more vulnerable at that moment than I recall ever seeing. And that frightened me more than any scenario of a grim future running through my head at the time. Or that his crying openly would have done.

So here I sit, now, cooly reciting a version of the timeline of my husband’s diagnosis and the events of our Covid year: in March of 2020, just days before lockdowns popped up over the country, we were told that my husband did not have dementia. Nearly twelve months later to the day, we were told that he has Alzheimer’s Disease.

This is no indictment of the field of neurology. I know, given my spouse’s background in treating the brain injured, that neurology is its infancy, and that our understanding of the mind, and its myriad afflictions, is rudimentary.

No, I appreciate the neurologist taking his time to reach this diagnosis, and his delivering it to us in a sensitive manner. I don’t appreciate the paucity of advancement in the field of cognitive decline given its prevalence, and the crushing toll that dementia takes on many. But that is another topic, for another time.

What I want to stress is that the events of the past several years (it was two years ago this spring that a trip revealed that my partner’s once excellent navigation skills had all but evaporated, and that we had before us, without doubt, a serious problem) have been anything but cool, and have been riddled with pain and loss, emotional highs and lows, grief, loss, and anger, and have been, at too many times, simply terrifying.

Covid-19? What is the threat of Covid-19 compared to what is actually playing out in our lives, daily?

And where are we, and the many that I know who are also coping with loss at this time, in the verbiage overflowing from all corners about “the pandemic” and how it has affected us?

I envision the pandemic as a veil, or a fog, that fell upon us, as we were in mid-March of 2020, that did not remove, or freeze, what was happening then. But rather fell over all, obscuring life below, but not halting it. Everything that was happening at the moment that the lockdowns began continued, in one form or another, for all of us. And lots of hard stuff developed for many during the pandemic.

In other words, life went on. For all of us.

Countless have fallen victim to disease, death, heart attack, stroke, cancer, illnesses of every kind, economic woes, job loss, bankruptcy, housing loss, marital disintegration, relationship loss, accident, crime, assault, and so on.

Yet when one reads about the pandemic–as if it is a train fast pulling out of the station and disappearing–there is this off putting silence, or refusal, to address the question of how have people, already hurting and in trouble, fared with this?

We know it’s killed over one-half million Americans. An astounding figure. We know it’s wreaked havoc in the workplace, on most wallets, in the school room.

But, how did the 94 year old living alone in the suburbs, unable to drive or walk on her own to a grocery, make it this far? How did that fledging business make out with the economic ups and downs? How does a postal carrier keep him or herself safe at this time? What happened to the graduating classes of 2020? How was that diagnosis of breast cancer handled? How many had strokes or heart attacks, but did not get to an ER?

What happened to those people?

What’s it been like to work out of a studio apartment in Manhattan, alone, day after day? What’s it like to be 70 years old, two hours from your adult child, in a small town in western Illinois?

What is it like to dissolve a marriage during the pandemic?

And, what’s it like to die during a pandemic, knowing that no service will be held in your memory? Is it reassuring to learn that you will be eulogized over Zoom?

And, finally, what’s it like to go from a diagnosis of ‘no dementia’ to a diagnosis of Alzheimer’s Disease during the first twelve months of a pandemic? How does one, ah, cope with that?

I can speak to that.

If anyone is interested.