Tag Archives: dementia caregiving

The long goodbye

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It has been a week.

My senses are out of kilter as to time and place. I will think it is Tuesday when it is Monday. Saturday when it is Friday and vice-versus.

The house feels larger even with Izzi staying here. We rattle around. Marveling at how tall the ceilings seem. At how many people were able to fit comfortably in the living room when we sat Shiva on the Monday and Tuesday after Jed’s death.

With Jed at home, the rooms had always seemed balanced. His large frame occupying the space. Balancing out the height and width and breadth even in his last weeks lying in his hospital bed. His presence still filling the rooms with echos of his insouciant smiles or his coquettish turns in one or another doorway.

Jed standing tall was a marvel. His posture perfect but tinged with a languidness that harkened back to the Wyoming roots of his General father. And yet Jed was a true Easterner. Intelligent and smart and fast thinking from all his years spent in New York City. At home, on a sailboat or a kayak, climbing a mountain or walking the G-trails of Europe, or sitting at Puffy’s Bar, or writing one article or another for the New York Times, or sharing a pint of ice cream with Izzi. Talking politics or mycology or the origins of fire as the basis for the industrial revolution.

Frontotemporal Dementia robbed him of so much of that. Slowly. Insidiously. Painfully. As a horrible march down the rottenest of fetid paths lined with the scary monsters of childhood nightmares. Still, there were things he could hold onto. His three quick kisses to the air when one or another of us came into view.

The whispered, “I love you.”

The moment of sudden lucidity in his last week when he looked at Izzi and said, “I’ll be there.” For Izzi. For the milestones and triumphs in Izzi’s life to come. His fatherhood still there at the last.

The sway of his body as music played.

Jed still in there a little. Struggling to breathe. To live and release enough to pass on.

 

 

Of beginnings and endings and beginnings again

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Jed, Izzi, and Sugar Ray, May 16, 2025

One of the privileges of life is to be there at the beginning and the end.

The miracle of my own pregnancy, delivery, and birth aside, my first experience of new life, was the birth of my dear friend Mara’s son Gabriel. He was born in the birthing center at what was then Roosevelt Hospital on the Upper West Side of Manhattan. She’d been in labor for quite some time, when all of a sudden, imminent birth came upon us. In the ensuing haste, I became her stirrup, bolstering my body against her bent leg as she pushed. I had never felt such power or connectedness to the cycle of life, and still count it among the most extraordinary experiences of my life.

Standing watch for death is no less miraculous. One feels through the touch of the skin and the cast of the eye how the body begins to let go. Shutting itself down into a dream like state of near relaxation.

Sitting with Jed as he begins to transition is no less extraordinary even as I feel the pain of watching my partner in life transcend our plain of existence. I find the rapidity of change to be the most difficult to contend with–an infusion of painful awareness that shoots through my psyche like a bullet train until I am able to normalize again; experiencing the all to human need to construct reality around the unfathomable.

Izzi and I spent today hanging out with Jed. We watched Soprano’s episodes, played Bette Lavette albums, chatted away. Sat on our computers. Wandered in and out of his room. Fed him bits of pureed food and sips of water from a spoon.

We told stories.

Talked about the future and the trip we want to take together.

Expressed our love.

The two hour interval

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Jed with his dog, May 6, 2025

Anyone who has every cared for a bed bound person is familiar with the necessity to reposition their loved one every two hours. This is to avoid and/or is part of the treatment for bed sores.

Yesterday I used one such two hour interval for a manicure and pedicure. The self-care felt evident, but more so the chance to drift as a very kind young woman from Southern China, carefully washed my feet, scrubbed my heals, massaged my legs, and applied nail polish before repeating a similar process on my hands.  I appreciated how she used a portable fan on my feet as she applied polish to my fingers–and used a portable fan for each hand in between her ministrations.

Meanwhile, it’s four weeks since hospice care began and I’m in a same-o, same-o frame of mind.

Up by 7:30 AM no matter what time I fell asleep the “night” before, to allow the home health aide “clock” in from my cell phone.

Gloves on and the work to give him a wash, change his shirt and his diaper, change the “chucks” – the absorbent disposable mats under his body – and every few days, the positioning pad and fabric mat. It usually takes about an hour. And then breakfast, pureed yogurt and fruit with a little nutritional yeast thrown in, or oatmeal and apple with a bit of smashed up walnuts and a couple of spoonfuls of maple syrup ’cause why not.

Meds are next. The ones that help Jed stay calm and out of pain–a new wrinkle now that he is bed bound: neck pain, stiff joints, where a turn without supporting his head mean agonizing moments until we right it.

Jed sleeping on his side, May 15, 2025

Then sleep. A two-hour check. Turn or change then turn. Then two more hours, and change, lunch: smashed avocado and cottage cheese, or an egg salad, or left over pureed mashed potatoes with spinach. More meds, time upright to digest and then turn.

Plus two-hours, and again, till dinner, and more meds, and then the four-hour turns. at 10:00 PM and 2:00 AM. Those are the hardest. I am tired. And not sleeping enough. And sometimes doing the 2:00 AM on my own because the workers don’t work overnight. When they can help they do, but one worker in particular informed me last week that she can’t do it anymore.

The 2:00 AM on my own has its own rhythm. The repositioning is the hardest, but I am beginning to get it right. I find that bathing him in the half light has a kind of soothing appeal. I take my time. Careful to wash off every last bit of Desitin and biological matter that clings to him. Once I am done. I sit for a while. Watch him drift in sleep. His mouth open, as he draws breath. His body otherwise still resting on a mountain of pillows and flannel PJ bottoms that we stuff strategically to ease his comfort. 

Last week Izzi started to come to help. We bond even deeper as we minister to him. We fill his nights with our love. Lie in my bed afterward at 3:00 AM, unable to sleep, watching old Sopranos episodes. 

Is it really two weeks?

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Jed greeting the morning, April 30, 2025

I swore it was three weeks since I put my sweet man on hospice care.

Today, however, marks two actual weeks in spite of the tricks time is playing on my mind and heart. Two weeks, and he is sleeping more. Eating less. Drinking less. Weaker. And yesterday, despite everything we are doing, he was diagnosed with a grade 2 bed sore just below his coccyx.

Two nights before when we discovered it, and having taken a photograph forwarded it on to Jed’s hospice nurse, she wrote back quickly saying it was a bedsore. It was a horrifying moment. A crushing moment. A moment of recrimination deep into my soul: How did I not see it before? How can I cure it? Make it go away overnight with a huge schmear of Desitin?

The clinical classification of the wound during his nurse’s regular visit yesterday gave me the sense that Jed is truly on this journey. A moment to be etched onto my soul. Mostly sad. Resigned. And more sadness.

The realization that despite the best efforts of bathing and drying and keeping the skin lathered with this and that product, skin breaks down. That the body doesn’t heal as fast. That he is truly at the end of his life and no amount of wishing and hoping changes the course.

When I spent 10 days in a silent Buddhist mediation retreat years ago in Thailand, I was taught that all things have a beginning, a middle, and an end. The walking mediation practice seemed to exemplify that concept the best. One starts off walking with the goal of walking 30 paces or so before stopping, turning, and beginning again. I admit to anxiety and discomfort on my first forays. Would I be mindful enough to stop at my appointed place? Or, would my mind wander and thereby miss the ending, so entranced in the mind-movies we invent we lose track of ourselves in space and time?

After a while, I got it. I would walk, set myself some landmarks and starting out feel exhilarated. Towards the middle I could begin to feel that my goal was nearing, but that the place where I was had its own beauty, its own interest. At the end, I felt a sort of arrival. That my task was done and that I was ready to start it anew as I stopped, took in where I was, turned and set out again with a new vista and orientation towards the place at the edge of a field where I had chosen to walk.

Contemplating Jed’s journey, I feel the vistas for him. The morning light in his room as I open the curtains, and how it casts light at the edge of his bed. Our time of bathing and dressing him. Anointing him in creams to keep his skin protected from the this and that of the day. Preparing a pureed meal and then feeding it to him. Providing his meds crushed in applesauce or bananas and strawberries. Setting him in his bed. Turning him, and on throughout the day into evening. Watching him sleep. Whether it is me or Izzi or one of his lovely home health aides. Guarding him. As the journey of his life slows. Reconfigures towards what will be his inevitable turn…

 

The Boy From New York City

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At Puffy’s, Demember 1996

The night I met Jed at Puffy’s Bar on Hudson Street, in Tribeca, the song, The Boy From New York City by the Ad Libs was playing. I hadn’t heard it in longer than I could remember, but walking into a bar that had such a great dancing beat to it had set my mood for the night and when Susan Dumois, the bartender, stepped out from behind the bar and started to dance with me, I knew the night was special.

In the blink of an eye, I sit in Jed’s room, Bach’s Suite No. 3 playing soothingly in the background as he sleeps, coughs, sleeps again.

We are at the end of his second week on Hospice.

I think I am located in it but perhaps not. I cry less. Feel less anxious, though if sleep is the measure, my anxiety comes through in the fitful hours of watching cat videos, and my new favorites the rescue beavers, Tulip, Stormy Rose, and the two tiny beaver kits, Blossom and Sprout.

I don’t write – except lists, and other easy stuff in my journal when I can take an hour to myself and sit somewhere.

Home hospice life with Jed, April 23, 2025

My sense of control comes from the stream of non-stop package deliveries of supplies for Jed. From the preparation of meals, adding Thickener, a product that literally thickens liquids to help a person with difficulty swallowing drink or eat their food. From shaving him with his electric razor careful to be gentle, and getting every hair I can find. From the notes I trade with his medical team.

What I have no control over is the relentless course of the disease. Of his sudden distress. Of his decline. Of his whispers. Of how my heart breaks from time to time.

I find the strength to face each day in the wee hours. And from dear, dear friends and family who send me their best wishes for which I will always be so, so very grateful.

A boxer’s truth

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Jed with daughter Izzi, March 23, 2025

My husband Jed and I met on a fateful night in December, 1996 at Puffy’s on Hudson Street in Tribeca, then sporting the best juke box in the City. We had one chance to meet and make something of it, and we took it. Fairly early on we discovered we shared a love of boxing. I had just taken a course at the local gym, and earlier had practiced on the heavy bag in the basement of my friend Eddie. Jed had just fought in his first “white collar” bout at Gleason’s Gym, and otherwise with his black belt firmly affixed, was teaching beginning karate at a Dojo in downtown Manhattan.

We’d watch Friday Night Fights on ESPN, regaling ourselves about Teddy Atlas’ commentary (who didn’t in those days). He was also my biggest booster when I trained at Gleason’s. And using his brilliant skills as a New York Times columnist and editor, went on to help me edit my first book, A History of Women’s Boxing.

Our affinity was the boxer’s heart we shared and our ability to push through our collective traumas to face our truths.

Jed’s always been there for me-through tough times, arguments big and small, differences and non-differences, and through the love that exudes through the pores of our being and into our shared joy, Izzi.

Jed, Brooklyn Heights, Fall 2021

Jed’s formal diagnosis with behavioral variant of Frontotemperal Dementia over seven years ago was a near on knockout blow-but Jed persevered as did I.

Round after terrible round of the disease we adjusted.

During the pandemic it became obvious the Jed was no longer able to be alone. I retired from working with the City to care for him and have continued ever since. In those days, he could still take a long walk or go to the store at the corner. And in my company, we’d retrace his former route through downtown Brooklyn: A walk up Cadman Plaza to Olde Fulton. Then a walk through Brooklyn Bridge Park before meandering our way home through the side streets of Brooklyn Heights.

Privit – Brooklyn Bridge Park, June 2021

Each June we’d walk through the rows of privit grasping it in our hands to keep the scent alive on our bodies.

We’d hold hands.

I’d give him some water – though he mostly refused.

He still walked a pace, but was beginning to slow by the Fall.

I started having companions for him in 2022. That allowed me a few hours of respite a couple of days a week and it was also still possible to run out in the morning to the supermarket because he still slept in. Our boxer’s heart keeping faith with one another-has he began to have medication to help with the symptoms and found it harder and harder to comprehend what was going on around him.

From then to now feels like a blur, but the now is a late round effort.

Jed and the care aides, April 13, 2025

This past Thursday was the last day that he walked-though he can still punch (and land some good shots that leave black and blue marks) when we turn him in his hospital bed in order to wash and clean him.

The Friday before that, he forgot how to swallow, but fought his was back to solid food.

Bed bound. Losing weight. Coughing. Endless sleeping.

Yet treated with kindness and love by wonderful women. That’s what I cling to as I take the decisions necessary to transition him to hospice care. Here at home. Among his books and enough camping gear to outfit a boy scout camp (a feature of FTD is obsessive spending!). Feeling the love of what home brings when Izzi sits besides him.

The journey of this illness is a terrible one. Yet the key has been keeping faith with our pas-de-deux. Our pact of love and faithfulness that saw us care so deeply for one another. To fight on the same team. Playing at doubles. Each of us having each other’s back. Literally.

Jed is 77. This all feels way, way, way too soon and yet he’s here. Still punching. Smiling between cursing us when he feels hurt by this or that turn. Still saying I love you and lighting up with the broadest of smiles when Izzi enters the room.

 

 

 

 

 

Time is a foreign country …

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Time is a foreign country.

At least I think it is.

Days meld. As does the precise time on the clock. From intense activity to drift, with Jed in a place outside of time, outside of locale, outside of the ordinary and the distinct.

In the journey that is my caregiving world, I work hard to lean in. To accept the tickles and jokes. The multitude of “I love yous'” that come my way across the day and the night. In between sleeping. And wondering who is in the house and where the bathroom is.

I feel for his dislocation, but he takes it in stride. Smiles. Says, “is anyone here?”

I say, “No.”

“You mean it’s just you and me?  Yay!”

My heart smiles and aches. Just us and not us.

We’ve been out a bit.

Mani, pedi, haircut and shave day. And a lovely walk. Pizza. The weather fine. Observing flowers. The new green of Spring leaves. The many, many babies out and about in their strollers.

This last his joy.

New life. Flowers. Babies. Toddlers. Children.

He lies down on what used to be Izzi’s bed as I work at my mother’s old sewing table on the other side of the room.

Jed and Sugar Ray.

Pals.

Sharing the space. The company. Being near. Our little family with Milo our other kitty off somewhere … and Izzi long since on her own … though one of us, always, on her visits home.

Doctor’s appointments, medical tests, companion caregivers come and go. Days blend some more as do the new normals. With me forgetting, two Fridays in a row that it was a companion afternoon. And, truth be told, my joy as I opened the door. Whew. A free few hours. Hours I worked on my book about women’s boxing before taking a lovely unfettered walk.

And now a Saturday. Jed full of the need to sleep. On his bed. In the room where I work. Padding in and out. Before he’ll organize his books and and clothing for the umpteenth time.

“It’s me again,” he says, standing at the doorway.

“Hi,” I say.

“Goodbye,” he says walking off to the living room.

Been a while …

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Budding tree, Cadman Plaza Park, Brooklyn, March 2, 2023

I’d say my vision has certainly been selective of late. Well actually that’s pretty charitable. I’ve been downright sad with a tinge of hopeless, which means the exterior world has a way of disappearing. Too difficult to negotiate with feelings that make it almost embarrassing to speak any sorts of truth. Even to those closest to me or to the folks I know who are caregivers and connect to those feelings more often than any will say.

Staying present is this issue for me.

If one is present in one’s emotion, that means leaning-in to sadness or anger or general grumpiness or happiness or joy … the full gamut. Being present in joy brings bits of euphoria, of seeing a full world of shimmering glory. Even the potholes of life. The bumps in the road. The little imperfections. All take on the caste of beauty. Of wholeness.

When in the ooky doldrums of a mental flu, not so much. And for me it’s the biggest trap. It’s when I go silent. When my world view shuts down. When the out there of day-to-day life separates itself from the interior floods of anguish or rage or any other state that isn’t perfected as a shimmering … yes joyful … reality.

And them I’m alone in it. Unnamed. Unknown. Emotions buried with little bits of leakage that come out disguised in a hail of intolerance. In why me-isms. In do-I-have-to-isms. When really I’m sad because my darling man just asked me if we were really married.

I had nodded my head. Started to tell the story.

He professed a lovely surprise that we’d been together for 26 years. That we’d married each other the first time on the top of a mountain in Jordan 25 years ago; had done it with a Rabbi and a New York City marriage license, a second time, 23 years ago at a decommissioned Synagogue on the Lower East Side.

How it had been the wedding of the decade with waiters so cute everyone fell in love with them.

How our friend Ray started out with Mozart and segued to Sentimental Journey as we walked down the aisle. How our recessional became a Conga line to a 1930s recording of a Cuban band.

How the magic of the place gave our Rabbi visions of its glorious past, channeling its former Rabbis and Cantors as he intoned the beautiful words of our marriage ceremony.

All of that in a moment. One I feel now. Much removed. Three weeks later. Tears in my eyes, thinking about loss and gain. About the lovely smiles on my darling man’s face as I told him the story of who we were.

Caregiving for a dementia patient is a mixture of joy and cruelty.

My glorious man tells me he loves me all the time. Middle of the day, middle of the night, opening a bathroom door, as I am washing dishes.

What isn’t there is the connective tissue of our 26 years. The good of them. The rough patches. The sharing of life and one’s deepest thoughts and feelings.

That’s what I am mourning lately. What feels so hard and interrupts my day-to-day. The connections that bind. The reality of loss. And why, at times, I just don’t want to see.

Caregiving for a dementia patient is not for the faint of heart–but you are not alone. There are organizations that can provide a lifeline to caregivers from groups to engage with, to real help finding resources. Here are few to consider (click on the name to open a new tab).

Alzheimer’s Association

Family Caregiver Alliance – Frontotemporal Dementia Resources

In New York City – Caring Kind

 

 

 

 

You’re doing your best

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Vegan Creamed Chick Pea Vegetable Soup with roasted veggie garnish and chopped parsley

When in doubt, cook something.

That’s been my week.

Not writing. Barely researching. Angsting about everything and nothing.

And really. What does “you’re doing your best,” even mean?

This in an email note from a doctor as I reported out the latest of Jed’s symptoms. How he described himself as feeling “whoozy” again and needed to get back to bed. His heart rate hovering around 50 and even dipping a bit below. My doubts on full display, “showing my ass,” so to speak. How helpless I feel. Yes. He’s fine. Nothing we can do until the data from the Zio patch heart monitor he is wearing is accumulated and sent off next week.  Then we can tell whether he really does have issues with his sinus rhythm.

All of this as I baked Jed’s “no knead bread” recipe. Starting it the morning before. Measuring the three cups of flour, 1/4 teaspoon of yeast, 1-1/4 teaspoon of salt, and 1-1/2 cups of water to get it started. Mixing it first with a spoon, and then with my hands. Enfolding it, feeling it coalesce, become a coherent bonded whole threading through my fingers, before carefully placing it to rest in a large bowl coated in extra virgin Kalamata olive oil. I think, “only the best for my Jed.”

Tear up thinking about it.

How hard this is.

How with the dough in place and rising across the day into night, Jed, had woken up at around 1:00 AM, unsure of how to go to the bathroom. I had a moment of cognitive dissonance, and then rose up and showed him the way as lovingly as I could with out a hint of judgement or despair or anything really. Knowing how he was entrusting me just in asking the question. Not wanting to appear “bossy,” his favorite term for me of late. Only to get the engine started a bit. Like cranking up an old Model T Ford car. Once the motor’s on it’s good to go, just needing the bit of a start.

Greek Fassoulakia with potatoes and kalamata olives

Lunch that day had been Greek fassoulakia: Green beans, potatoes, and kalamata olives in a tomato sauce with onions, garlic, basil, lemon juice, and a touch of cinnamon.

Comfort food for me. Shades of my 18-year-old self practically inhaling it off the plate whenever Nick’s mother Kalliope made if for us on the island of Rhodes in 1972.

Something yummy for Jed, as I’d taken him to Rhodes a couple of times, once in 1998, and once with Izzi in 2000–and where she started walking at 10-1/2 months. Ordered the dish practically every time we had lunch at a Taverna. Would mash it up a bit for her as we watched her smiling in delight with tomato sauce dripping down her mouth.

Later in the day, Jed was more of himself: Playful, funny, unworried about not having a clue. Enjoying the fresh soup I’d made in the morning to go along with the bread. Me dissecting the spicing (too much of the cloves) — him feasting.

“Hmmm,” he says, “the best I ever ate.”

And so it goes.

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Bradycardia (low heart rate) can cause confusion, dizziness and other symptoms, which can otherwise be challenging for a caregiver to interpret. This was only picked up on an ER visit as an incidental finding–and we still do not know if it, in fact, is the cause of Jed’s added confusion in the morning.

In researching the subject, I found a paper noting that bradycardia seems to have more frequency for frontotemporal dementia (FTD) patients with the behavioral variant, and thus something, FTD caregivers should be cognizant of.

For further information on bradycardia here are some resources (click on the item to open the link in a new tab):

Bradycardia in Frontomemporal Dementia

Strong evidence to links irregular heart rhythms to dementia

Bradycardia: Slow Heart Rate

 

 

Cat dancing through the week …

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Sugar Ray, the pugilist Georgia street kitty by the window on a Brooklyn morning

Some weeks I just feel so whipsawed.

Apropos of a lot it turns out! Elections, being less than on target writing my new book (yes, yes, I will make it up, but oy!), circumnavigating the rise in hate speech everywhere it seems, my daughter’s great week starting a new job, so yes, lots of joy for her, installing safety rails (bed worked, toilet, no), housekeeping (don’t ask, had Jed and his companion vacuum yesterday as a “therapy” exercise!), lots of healthcare discussions re: upcoming appointments for Jed (success and a big thank you to Lenox Hospital Cardiac Electrophysiology for their kindness and attention) … and then me.

Yes. It is okay to ask, “what about me”!

Starting with the inventory, ’cause hey, can’t take the project manager out of me:

  • A few months in with a therapist … check.
  • Boxing training … nope.
  • Self care … hmmm …. no where near enough.
  • Being centered in my emotions … no where near enough.
  • Time for myself … no where near enough.
  • Sleep … haphazard at best

In the tradition of the don’t mourn, organize school of action, the best way I have found to move forward is to put the mechanisms for self care success into place.

Yes, an inventory helps, but one needs to really ensure the full picture is captured along with some thoughts on how to mitigate those areas that are clearly putting one’s mental health and well being in jeopardy.

Sugar Ray sleeping, Brooklyn window

Starting with sleep and knowing I must practice what I preach: it’s all about routine and creating an environment of calm and serenity along with ensuring one is adequately hydrated and not logy from having had a huge meal right before bed. One should also put away the smart phone, iPad, or whatever other electronic devices are overstimulating the mind with crazy short bursts of sound and light. No, one does not need to check Twitter at one in the morning or watch crazy YouTube videos or TikTok. Just turn it off–and if one must engage with something, go old school and read a book until the eyes go all swimmy and one drifts into restful sleep.

Another big one is time for oneself–and not only time, but meaningful time. Laying sprawled on the couch mindlessly streaming baking shows for hours at a time is not the answer. I can surely attest that the practice is just as addicting and mind-numbing as any narcotic and other than a lousy alternative to sleep, it does nothing for one’s state of mind. I am a huge offender of this one–not only seemingly watching, but simultaneously playing ridiculous games on my smart phone. It is the opposite of mindfulness or appreciation for the little bits of time I can have to myself, and decidedly not restful, in fact, quite the opposite. And no, that doesn’t mean I can’t watch the next episode of Andor (or equivalent show) when it comes on, but it does mean I shouldn’t obsessively and mindlessly watch three more hours of nonsense I cannot recall because my mind escaped into a video induced haze. The solution I am striving for is to actually schedule the time on a calendar. From writing time to sleep routines and so on. Given that the stratagem has had splendid results during my work life, why not use it as a tool to better organize my life into spaces that can provide me with solace and meaning?

As for living in the moment while actually experiencing the accompanying emotions — that’s a huge one. If one lives an “awake” sort of life, it is much easier to find, touch and be in those experiences, but again, that means taking a turn at mindfulness in a way that can difficult to do if one has been out of touch for a while. I’ve graded myself a letter grade of C in that regard, but I’ll actually tweak it to a C+/B- given that I do hit the mark from time to time and can recognize when I’m letting myself off the hook. The emotions around Jed’s fall swirled for days before I really landed in them, but as I write this, I know that the work of being in the moment had been at play in the background.

Just doing this bit of writing, and trying to reach out to readers whose lives are circumscribed lets me know that I am on a more positive path. And for those caregivers among you, I can only say that mindfulness, even in tiny spurts, does bring a kind of solace and peace that allows the smiles to come back, both inside and out.

I can’t say when I’ll get work out with my beloved Lennox Blackmoore at Gleason’s Gym or feel that I’ve got the self-care fully in place, but I can say it is a work in progress. And as with most things in life, that’s a positive in the scheme of things.