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Archive for the ‘illness’ Category

As I was on my daily constitutional today (amidst polar winds and swirling snow), I passed a lengthy line of men outside the new artisanal chocolate shop in my neighbourhood. As I moved onto the street to maintain physical distance between the shoppers and myself, I found myself thinking about all the mothers who will face Mother’s Day during this extraordinary pandemic, COVID-19.

I thought about mothers of children with disabilities who are without the essential service of the personal support workers who come to their home every day to help care for their children. I thought about homeless and under-housed women who are struggling to stay healthy and warm without the comforts of a home and family. I thought about the mothers and grandmothers who will spend Mother’s Day alone, unable to enjoy the physical delights of hugs and kisses even if they’re lucky enough to live in the same city or town. I thought of the essential health care workers – physicians, nurses, personal support workers and others – who will spend Mother’s Day on the front-lines of the battle against COVID-19 – separated from their families and risking their lives to save others. I thought of the mothers and grandmothers in long-term care facilities, who are unable to see or touch or talk with their daughters and sons and grandchildren.

For those women in long-term care facilities, their lives on this Mothers’ Day are particularly precarious. The pandemic has revealed the appalling conditions in long-term care homes across this country, where COVID-19 has killed so many elderly, vulnerable people. Reports of people dying alone, gasping for breath, calling out for help, are unbearably devastating, as families wait outside, hoping for news, for a glimpse of their loved ones at the window. These women are our mothers and grandmothers. Despite our best intentions, they may well be us in the not so distant future, no matter how well we have planned.

The plight of these women and men in long-time care reveals the tremendous lack of regard our society holds for the elderly. It is the result of decades of neglect, under-funding, and greed in a society that values expediency and money above human lives.

It is my hope on this Mother’s Day that we will wake up to the tragedy that is happening to our elders in long term care. I hope it will remind people of the invaluable work that is performed by personal support workers every single day. Perhaps it will force our governments to ensure that these workers receive a living wage commensurate with the essential human service that they perform. And I hope it will remind us all of the tremendous toll COVID-19 is taking on the most vulnerable people in our society.

This Mother’s Day I will remember my mother who died nearly 14 years ago, who was fortunate to be cared for in the final years of her life by personal support workers in a small facility where she was seen as a whole person in spite of the ravages of a brain aneurysm. I will think of how fortunate I am to see my daughter and grandchildren at a distance of 6 feet and my younger daughter and her 14 month old daughter via the wonders of technology.

And though it seems insignificant in the face of this pandemic, I will send donations to the services that support mothers so that they too can survive these challenging times.

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When I started my post earlier today, I thought I was going to write about why I had to cut my Provincetown writing trip short. But as often happens when I sit down to write, the words take me somewhere else.

Two and a half weeks ago, I packed up four file boxes of writing, a bin full of writing tools (pads, pens, extra computer, many books, printer cartridges, label maker – of course!) and headed off to Provincetown for my annual writing retreat. I’d booked four weeks this year – two of them in residence at the Fine Arts Work Center where I took my first writing class in 2001 and two of them at the Cape Codder Guest House where I have taken refuge every year since then. I was excited as I drove the 10 hours to my destination (in two days) and thrilled as I set up my computer on the desk in studio 4.

Unfortunately, by the first evening, I had a sort throat. By the second, I was blowing my nose non-stop, and by the third I was in bed, trying to find my voice again, and cursing the germ that had settled into my lungs. Grandchildren germs, I thought, remembering the coughs my daughter and her children were sharing freely before I left Ottawa.

I didn’t curse for long, however. Instead (perhaps miraculously) I found myself contemplating what opportunities being sick was offering to me. No, I didn’t think it was meant to be that I should get sick. But yes, I did find myself thinking, as I often do when I get sick, about the fragility of health, and life itself. As I lay in bed in this foreign land, I found myself appreciating the Canadian health care where I could visit a doctor without ever seeing a bill. (I’m always a little scared when I get sick in the US as I do NOT want to have to visit a US medical facility!) I appreciated my family (even as I wished I were closer to them at that moment), the many drug store items I had brought with me so that I didn’t have to spend precious American dollars, and the super duper soft Kleenex I splurged on, to soothe my weary nose.

I thought about how little I really needed – a salad from the health food store within easy walking distance, some chicken from Farland, my favourite lunch and provisions store. The lack of sun (and abundance of rain) made it that much easier to lie in bed and read or watch Netflix – and if I ran out of reading material, Provincetown’s fabulous library was just up the street.

For the most part I wasn’t able to write (hence the lack of blog posts for the past while), except for some scribbled pages at Harbor Lounge, three small blocks from my studio, with a fabulous view of the bay and the wharf (and wonderful cocktails and wine -the sign says it all – no food, just booze!)

By the end of the first weekend, I was feeling pretty proud of myself for being able to manage on my own. That’s when I noticed that I was scratching my head far more than usual – in fact, I was crazy itchy. The explanation arrived on Monday morning, when my daughter told me her children had lice. A quick try to the Shop and Stop (as I call it) for a comb and conditioner and I soon discovered that I too had lice. Not a million, but really, isn’t one more than enough.

I have to admit I was ready to throw in the towel at that point. Coughing, blowing my nose, achy, and now, LICE. My intrepid partner soon tracked down a lice lady on Cape Cod and urged me to give her a call. Feeling somewhat ashamed (who feels good about having lice?) I called the expert known as The Picky One. She sounded lovely – very matter of fact but kind – and we arranged for her to come to my studio the following day at noon.

To say I enjoyed our time together would be pushing it. She was, after all, picking nits off of my head. But we talked about aging parents and caregiving, and the challenges of dealing with children and parents at the same time. I told her about my book. She told me about how her father’s death had changed her. Before she left, she bought a copy of my book, and the next day, wrote to tell me she was crying by page 6 – while offering reassurances about my itchy head.

Many many loads of laundry and trips to the somewhat grungy laundromat later, I was ready to pack it in. I itched, I was still coughing and blowing my nose, and I still felt pretty miserable. My partner flew down to “rescue” me, we spent a beautiful sunny day in Provincetown, and then headed back home. As I packed up all the things I hadn’t used, file boxes unopened, art bag untouched, books unread, I admit to feeling regret that my retreat had not been as I had hoped.

But my time in Provincetown provided me with some important reminders – about taking care of myself, about letting go of expectations, about being with whatever happens. It reminded me of how much I like my life with its fixed points: hospice, volunteering with kindergarten children, playing the ukulele, spending time with my family and friends, walking by the river, singing in my choir. And I’m happy to be home again.

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As anyone who knows me (and that includes readers of this blog, of course), I am not a person who believes that everything happens for a reason. Whether it’s a death, the loss of a close friend, a job, or a house, the onset of a serious illness – the list is long for the events for which some people are determined to find a “silver lining.” When my mother suffered a massive brain aneurysm, when my sister was diagnosed with terminal cancer, and on many other occasions in my life, well intentioned friends and acquaintances would attempt to console me with the thought that even these devastating events happened for a reason.

Most of the time I’ve managed to control myself enough not to lash out (or worse) at these people. Instead, I point out that terrible things rarely if ever happen for a reason. Rather, what matters is what we make of the situation – how we come to terms with it, how we respond, how we make meaning in our lives. Readers here will know that the experience of my sister’s death transformed me in ways I am still coming to understand. My ability to be with suffering and death, my passion for hospice palliative care, my commitment to helping others deal with illness and dying, all stem from caring for Carol when she was dying. So too do my meditation practice, my writing and speaking about caregiving, and my heightened intuitive sense of the suffering of others.

Carol’s death didn’t create these things, of course – nor are they the “reason” she died. But they are part of the meaning I found in the aftermath of losing her.

On July 4th, it will be the 20th anniversary of my sister’s death. I’m not sure yet how I will honour her  (though I do know I have a hospice shift that day, which seems like a fitting way to celebrate her!) No doubt, I’ll write something, as I have so often in the past 20 years. And I’ll remember, with enormous gratitude, all the things my big sister taught me in our 47 years together.

 

 

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It’s 2017, so they tell me, though I have been laid up in bed since late December with a nasty virus, and have trouble remembering which day of the week it is.

In a few days it will be 20 years since my sister Carol was diagnosed with the virulent cancer that would take her life 6 months later, on July 4, 1997. I had just begun a well deserved and much needed sabbatical and was busy making plans for a research trip when my sister called to say that the cancer was back.

“Fuck, Fuck, FUCK,” I said, when she told me.

“Don’t say that,” she said.

“But it’s just not fair! You’ve done so well! Fuck, fuck, fuck,” I said again, the only words that seemed to capture the extent of my anger and grief and shock.

“Don’t say that,” she said. “It just makes it harder for me.”

“OK,” I agreed. “I’ll be on the first train tomorrow to see you.”

And so it began. The 6 month “journey” in cancerland – through endless visits to doctors and hospitals, CT scans and MRIs, biopsies, and surgery. Vomiting and K-basins. Fear. And always pain. And finally death.

So many of the details of those six months are still vivid in my mind and my heart. The endless waiting for results, the parade of PSWs and “sitters.” Dozens upon dozens of phone calls on pay phones, in the days long before cell phones. And countless conversations with Carol about what she wanted and needed. I would have done anything I could have for her. And in the end it was never enough.

Shortly after she died, I began to tell people that I had been transformed by Carol’s death. I didn’t really know what it meant, but I knew it was true. I was no longer running away from death. Four years later, I would begin what became my 15 year journey as a hospice volunteer. “My sister works through me,” I would tell friends when I first began my volunteer work with dying people and their families. Sometimes I could almost hear her telling me, “Slow down. There’s nothing you have to do. Just listen to their stories.” And I did.

And I still do, all these 20 years later. I also write and talk and speak at conferences and churches and meeting halls. I look for opportunities to share my book about caring for my sister and my elderly parents, in hopes that I can help others who are facing this challenging time in their lives.

When I first began volunteering at hospice, friends would look at me strangely as I would wax eloquent about my volunteering. Some thought it morbid, others that I was courting depression in being with dying people week after week. Few would believe me when I told them my time at hospice was the most hopeful part of my week.

More often now, people ask me what I do at hospice – what it’s like giving care to dying people, and talking with their families. More and more, of course, friends and strangers alike have experienced the death of someone they love. Or they are watching their aging parents coming to terms with their loss of independence and failing health. Perhaps they have received a difficult diagnosis themselves. Now they too want to talk about death and dying.

And so I will continue to write, here and elsewhere, about life and death. I’ll read the latest books on the subject from the library, and watch movies about “d and d.” I’ll continue to give talks wherever I can,  and I’ll look forward to hearing other people’s stories.

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Somehow the month of April seems to be have raced by. For me, it was filled with speaking engagements (Colonel By Residence in Ottawa; Hot Talks on Health in Toronto) and planning for upcoming talks at the Good Companions Centre this week and in Lindsay and Fenelon Falls next week. It’s been exciting and energizing and a little exhausting (I am an introvert, after all!) and I’ve missing having the time and space to write and blog since my return from Virginia. I’ve made some great connections and met some amazing caregivers and volunteers and heard about the wonderful work being done by Carers UK. And now, here it is, May 2nd, and the start of Hospice Palliative Care week.

Yesterday was the Annual Hike for Hospice – I’ve attended all but one since I started volunteering at hospice in 2001. It’s always a great time to meet fellow volunteers, family members we’ve helped at hospice, and supporters of hospice palliative care. Hopefully – despite the dark skies and rain – we were able to raise much needed funds to continue our work at Hospice Care Ottawa.

I love talking about the work we do at the hospice (can you tell?) and I seem to find a way to insert hospice care into every talk I give, even if it’s not explicitly about hospice care! In these days when so much media attention is focused on physician assisted dying, I feel it’s vitally important to dispel some of the myths about palliative care and to tell people what hospice palliative care is all about.

Most people have never stepped inside a hospice. No doubt they have many fears and misconceptions about hospice care.

Some people think that hospice care hastens death.In fact, hospice care enables people to live their final days or weeks without pain (in most cases) and with dignity. Research suggests that hospice care can enable people to live longer once their pain and symptoms are successfully managed.

Many imagine that a hospice is a dreary place devoid of laughter or celebration. I can’t tell you how many times people have asked the question: “Don’t you find it depressing volunteering in hospice?” I tell them that yes, there is sadness at the end of life, but there is also joy and celebration. I have seen high school graduations, wedding and birthday and anniversary celebrations – even a visit from a brand new great grandchild – in my years at hospice.

Hospice palliative care enables people to live fully until the end of their lives. For those of us who are privileged to work in hospice care, we find inspiration and meaning and a reminder of the things that really matter in life – human connection, love, caring, dignity.

I am honoured to be a hospice volunteer. I know that many readers of this blog share that honour with me. Let’s take this week to tell others about the gifts of hospice care. Share this blog with them. Share your story with them. Encourage them to get involved, whether it’s helping to raise money, or volunteering as a driver for day hospice, or telling their elected officials of the need to provide sustainable funding for end of live care.

Let’s spread the word about hospice palliative care – this week – and throughout the year!

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A piece I wrote about my sister Carol was excerpted in The Caregiver’s Voice today.
Here’s the link:
http://thecaregiversvoice.com/avadian-musings/we-will-remember-you/

I’ve written lots of blog posts in the past few days – alas, all in my head, as I’ve been caring for my sweet little grandson who is under the weather (with a fever! in this heat!)

More to come soon….
Katherine

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I wanted to share a link to a Hospice and Nursing Home blog I follow. In this blog, she shares a short video of Ira Byock, one of America’s most highly respected palliative care physicians and commentators. It’s very relevant to our current public discussions about end of life care.

http://hospiceandnursinghomes.blogspot.ca/2014/11/ethics-of-dying-video-218.html

I’d love to hear what you think!

 

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My family has been sharing a nasty flu bug for the past month of so. I have to admit that I was the first – but I like to think that I didn’t pass it on to my partner, who got sick a full week after me! Regardless of its origin, it’s now spread to my son-in-law, daughter, and grandchildren. Good times! And it’s not even time to get my flu shot yet!

I have to say that working in hospice has taught me a lot about patience in the face of the relatively minor illnesses we’ve had. Being with people whose illnesses are terminal certainly put things in perspective, even if it doesn’t stop me from whining occasionally!

I still vividly remember an experience I had at hospice a couple of years ago. I was helping a staff member to reposition a patient who had suffered from a neuro-muscular disease for several years and now was dying of cancer. I noted that the staff member seemed to have a bad cold and offered my commiseration. She replied, “I know, and I really don’t have time to be sick!”

After we had finished and the staff member had left the room, the resident said to me, with a strong note of anger in her voice, “Do you think I have time for this? I have no time.”

Her comment has stayed with me – in fact, it’s one of the things that led me to entitle my new book “I don’t  have time for this! A compassionate guide to caring for our parents and ourselves.

And I’ve thought about her, and all the people I’ve met, whose time has gone, in so many cases, far too soon.

 

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Finding the joy

I’ve been finishing up the third draft of my manuscript – and finally sent it off to my editor. Hooray!

One of the last pieces I added was about remembering to find the joy in tiny precious moments.

It is so easy to be overwhelmed by sadness, anticipation, details and mountains of paper, even as we are in the midst of a serious illness or impending death. I wanted to post a couple of pieces I wrote about my Dad – and our special, funny, and poignant times together.

Finding the Joy

Bette Davis first popularized the observation that “getting old is not for sissies.” I would add that caring for your elderly parents is not for sissies either.

It is painful to watch our parents’ health and independence diminish with each new day. It is a struggle to maintain a calm, patient outlook when our lives feel overburdened and crazy.

Yet it is essential that we not let their situation overwhelm us. Though there will be times when we feel like we can’t go on, there are also moments of pure joy and delight, moments of tremendous meaning and poignancy that remind us why we are doing all this in the first place.

As I was writing about my father as he was dying, I was surprised by how many such moments existed. As I slowed down to his pace, as I opened myself up to what was actually happening, I was able to let go of my frustration and just be with him. (Hint: I often kept a pad of paper and pen on the couch beside me when I visited my father. The first page contained my to-do list. But I would often flip to the following page, and scribble down phrases and words and stories that my father would say. Since he spoke very slowly – all his life but even more so when he was in his nineties – I could actually record many conversations almost verbatim. In other instances, I would take my journal with me to the mall, and over a frozen raspberry twister at Jack Astor’s, I would write the story of my latest adventure with my Dad.

On the days when I rushed to my father’s apartment, dreading his “I thought you had decided not to come” greeting, I might miss the humor implicit in his instructing me where to find the money for my trip to the mall. Or the irony in his instructions regarding our choice of take-out meals. Or the combination of pathos and love in our efforts to pay his bills together.

These are the moments that become the memories which sustain us through the grieving process after our parents are gone. These memories will survive far longer than the sting of a sharp word. But we can only see them if we are in the present, not fretting about or dwelling on the past, or obsessing on the imagined future.

Sometimes these moments happen when we least expect them.

Each time I visited my father, we began the same way.
“Is there anything you need me to do, Dad?” I would ask. Usually my help involved a shopping trip to the mall. On this particular day, the request was very different.
“I don’t think so,” he said. And then, a long minute later: “I do have a request of you that I’ve been too embarrassed to make.”
“Oh,” I said, a little taken aback. “What is it?”
“I would like you to cut my toe nails. I can’t bend over to reach them anymore, and they’re getting uncomfortably long.”
“Where do you want me to do that?” I asked, trying to hide my unease.
“In the bathroom,” he said. “In the middle of the night, when I wasn’t sleeping, I amused myself with deciding that I would soak my feet while sitting on the bath seat.”
He preceded me to the bathroom to prepare himself. When he called my name, I joined him. I don’t think I had never been in the bathroom at the same time as my father.
When I walked in, he was sitting on the edge of the bathtub, his feet resting on a large brown towel. His grey cotton pant legs were rolled up above his knees to reveal dozens of purple and blue bruises on intensely veined thin white legs.
“Do you need anything else, Dad?”
“Bring me a bowl of water. You can use the dishpan under the sink. It’s not getting much use these days.”
I returned with the square brown plastic dish pan, which I proceeded to fill with warm soapy water. I set it down on the bathmat in front of him.
“Here you go, Dad,” I said. “Just like Madge.” The Palmolive woman from TV. “You’re soaking in it,” Madge would tell the customers in her upscale salon who always responded in horror to learn they were soaking their hands in dish detergent.
“How would you like me to do this, Dad?” I asked when he had finished soaking his feet.
“However you like,” he directed. “The nail clippers are there on the sink.”
I picked up the set of nail clippers and inspected his foot.
“Where do you want me to start, Dad?”
“Your choice.”
Some choice, I thought. The big toes were enormous and terrifying. The nails must have been an inch thick and hard and yellowed despite his efforts at soaking. I wondered how long it had been since he’d had his nails cut. I didn’t ask. I chose the baby toe. I began by facing him but soon discovered that the angle was too awkward. I moved my body between his legs, resting one arm on his leg. It felt strangely intimate. I proceeded, toe by toe, cutting and shaping, trying my best not to cut him. Left foot, then right. One toe at a time.
“Well, Dad,” I said, moving towards the door to inspect my handiwork. “I think we’re done. How do you like them?”
“Perfect,” he said. Then, not missing a beat, he added, “Do you paint toenails as well?”
[All these years later, I still smile as I remember my father’s wry humour, relieving any discomfort I might have felt. It was his own particular, understated humour that I miss and cherish all at once.]

And some stories are poignant – the fact of his impending death unspoken yet acknowledged.

Paying Bills

And this is how we pay bills, my father and I. Upon his instructions, I bring the stack of unpaid bills, his cheque books, stamps, envelopes, address labels, and a calculator from his study. I place them all on the TV tray (a relic from my childhood) that sits between our chairs. I search discreetly in his garbage can for the bills he has mistakenly discarded in his initial sorting of the mail. He watches, pretending not to notice what I am doing. It is a game we play every time we pay the bills.
If he hasn’t had a chance to open the envelopes yet, he instructs me to fetch the letter opener from the desk. With a lifetime of experience under his belt, he is much more skilled at opening letters than I am. He opens an envelope marked Revenue Canada and pulls out an official looking letter. Intrigued, he lifts up his magnifying class from the tray, and shines his flashlight on the paper.
“What is it, Dad?” I ask, resisting the urge to grab it from his hands.
“It’s a tax refund,” he says. “In the amount five dollars and forty cents.” He continues, a note of irony in his voice. “It says, ‘for amounts less than $10, a credit is carried over to the following year. Should you choose to dispute this result, call this number.’ I will be found dead before I will call that number,” he concludes.
I do not remind him that he was very nearly found dead two weeks ago. I wish thoughts like that didn’t enter my mind but they do. I say nothing, just hand him the next bill.
I write the cheques, record the amounts, then point to the blank line on the bottom right hand corner of each cheque: “Here, Dad.” He signs his name, in a halting, almost indecipherable script.
In April, he could still write the address on the envelope himself, but he leaves that to me now. He leaves almost everything to me now.
When he gets to the cable television bill, he says, “On your calculator, multiply that amount by 12.” He points to a figure on the bill. “I pay by the year,” he explains.
I follow his instructions. “$6.87 times 12.That’s $82.44,” I say aloud. I wait.
“You think that’s unwise?” he asks.
I hesitate. “No, Dad. Optimistic.”
He waits.
“It’s totally up to you, Dad,” I say finally. “It really doesn’t matter,” knowing of course that nothing in this moment matters more than this decision.
“Make it out for $6.87,” he says.

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…and the living in easy; fish are jumpin’ and the cotton is high…

And I can’t believe it’s been over a month since I posted anything on this blog! I guess it really is summer time! You can pretty much tell it’s late July because already I hear people saying things like “how was your summer?” instead of “how IS your summer?” and lots of complaining about how it’s all gone by too fast.

After the dreadful winter most of us have had (never-ending, crazy cold and slippery) it certainly feels like we deserve a good long dose of summer. Our reward for suffering!

As I write about summer, I think about the people we serve in our hospices and the people in our own lives who may be ill or dying. Here the summer, its heat or lack thereof, its duration, its respite from winter, seems to have little relevance. Each Tuesday when I come in for my shift, three or four people have died. The families I met and talked with in the kitchen won’t be in the kitchen next week when I show up. They will be organizing a funeral or memorial service, tying up “loose ends,” attending to their grief, and trying to figure out what life looks like without the person they loved.

My sister died at the beginning of summer, many years ago. When she and I  talked about a memorial in the week before she died, she was convinced no one would come, given that most of her friends were teachers like herself, and left town for cottages and far-away places. I was able to convince her she was wrong, and together we planned a wonderful event – Carol’s party as she called it – in her honour.  And many people did show up, just as I had promised.

Perhaps because she died on July 4th, I feel a special affinity with people at hospice who are losing a loved one right now. Outside the hospice doors, people are making plans for the cottage, having picnics, riding their bikes, and running along the canal. People are drinking been in outside patios, celebrating at the football game at our new stadium in Ottawa, enjoying gelato with the kids. As well they should be – it’s summer!

My hospice work brings me so many things – a renewed faith in humanity, as I watch people rising to their best selves to care for loved ones; a sense of meaning and purpose to my time there; and lots of laughs, with family and staff, along the way.

These days it also reminds me of the fragility of life – things can and do often chance in an instant. And that in turn reminds me not to take this life for granted – including the wonderful days of summer.

 

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