I want to start out by saying that I could argue either way—when it comes to this very sensitive issue—which is the not-so-small matter of whether or not it’s right to have a relationship with another person while you are married to someone who is no longer “available,” (for lack of a better word).
Now that can mean a lot of different things; so let’s understand emotional availability, verbal availability and physical availability don’t necessarily indicate sexual availability. I’m referring to marriages ands other long-term relationships where mutual respect and concern are keystones, and a deep abiding love persists.
Just as much as one might need friends and family around to support her or himself while caregiving, there might be a need for companions—totally outside the circle of friends known to you and your spouse/significant other as a couple. This kind of relationship helps many remember who and what they are outside caregiving.
In reality, as a couple, illness will prevent you from being as available to your friends than you had been. That’s certainly easy enough to grasp.
I know that before my husband and I began down the nasty road of cancer treatments (which is sort of like the chutes and ladders game) we talked about what we’d want the other to do “in case” the other were “unavailable” (to which we added or our personal stipulations). In our case, we were speaking of sexual availability. There was never a question that we would be there for each other in any respect we could.
It was clear that neither Steve nor myself wanted to keep the other from having a full and fulfilling life if one or the other of us should die. Steve stipulated three man-friends he told me were off limits. “Anybody but Jay” he’d say, knowing I’d poo-poo him or let him know I knew the three people he didn’t ever want me to date were the three likeliest suspects to be knocking on my door. I wouldn’t have been interested anyway.
For my part, no such stipulations were made. My friends were either happily married or not his type. This of course didn’t mean that should my friend’s spouse suddenly pass, that he wouldn’t have been free to date her.
I hope all of this makes sense to you because it’s important stuff.
So now we’ll take it a step further. As Steve became more and more ill, our conversations got deeper and deeper and sometimes overly complicated with caveats. He was now the partner who was ill. The one who was dying. The one whose future we couldn’t predict at all. We, as a couple, were not in denial. There was no timeline. No exact prognosis. No indication at all about how our lives would look in a few months or a few years. How would we deal with that reality down the line?
Well, down the line never came. Steve remained emotionally, verbally and sexually available throughout his illness. His doctors marveled at this—at least the sexual part. All of that made constantly caring for him easier. He never felt emasculated. He was still an active partner in our marriage. But if he hadn’t been, I feel that I would have needed someone in my life—not necessarily a lover—who was emotionally available, at the very least. Caregiving took so much out of me that I required positive input to keep going. I was fortunate to have had my husband give me what I needed. I was lucky. When Steve died, our marriage was as strong as it had ever been and I could go on with positive memories of love and mutual respect.
But Steve always knew who I was. He never lost mental clarity. When I was with him, he was with me. We still shared the same bed. His body had not been ravaged by his illness. We were lucky.
Had the roles been reversed, I knew Steve would have hired someone to care for me, though he would have always been present. He wasn’t the caregiving type. Deep concern, yes, but hands-on, no. But I always felt secure and knew he would have seen to it that I got the best care. That’s who he was and I never held it against him. At least he was aware of it.
When the doctors told me that his cancer had gone to his brain, I began to worry. Everything had been manageable up to this point. Now I had to question, would he continue to know me? Would he become violent? How would his behavior change? Would he be a danger to himself? Well, he became totally obsessive. He checked, double checked and triple checked his medication charts. He imagined intruders from Vietnam walking around the house with cats. He saw a spacecraft outside our bedroom window and needed to get out of the house—we were in danger.
He died three weeks into this dementia. Our conversations about what would happen “if” were no longer relevant, except I knew he wanted me to have a life after he was gone.
I had always saved my close friends to be my “normal” when Steve was ill. We would talk about everything except Steve. It never got to the point where I needed to find companionship outside my friends and family.
My gut feeling, though (and I can only speak for myself) is, had it ever reached the point where it was months turning into years of a Steve who’d become unavailable in every way, it would not have been out of the question for me to seek companionship. I know I would have continued to care for him as I had, but I would have needed some normalcy in my life. That kind of normalcy would have to have come from someone outside the situation.
When I went on JDate.com and Match.com and OurTime.com, there were many (and I do mean many) men who were very upfront about what they were looking for. Their wives were still alive but totally unavailable to them. They were seeking companionship. Some were open about the fact that they sought sexual partners who had no qualms about this kind of infidelity. Some were looking for women to accompany them to theatre, dinner or an occasional movie. There were no promises about what the future might hold, but they were looking to have a relationship with someone. They wanted to connect. If it became sexual down the line, that was not what they were looking for to start off, necessarily.
No one in my immediate family has ever had Alzheimer’s or dementia. No one ever needed to be placed in an assisted living or long-term care facility. I was a long-distance caregiver to my parents who were smart enough and had the foresight to purchase long- term care insurance, so when my father died my mother was able to remain at home with a professional caregiver for three years. So I have been fortunate to never have experienced someone close to me not knowing who I was, or being difficult all the time, or having to do everything for them.
I have a dear friend who was a trophy wife. When her husband passed away at 98, she was eighty—granted, no spring chicken, but her spirit is very youthful and she is a very social creature. She’d cared for him for many, many years and she and we had discussed the topic of extramarital relationships on several occasions. Maintaining a normal lifestyle for herself and her husband was her main concern and she ultimately decided that she didn’t care to change her situation as long as she was able to attend the opera, go to theatre and lunch with friends. She is financially secure and was able to afford respite care when she wanted to get out.
For my friend, that was enough. She still practiced extreme self-care and could live with whatever amount of freedom she bargained for. At 98, her husband was still sharp as a tack and was emotionally and cognitively available.
I have another friend, a man, married to a woman who is 17 years his senior. He recently had to put her in a residence because she is suffering from severe dementia, to the point being physically violent. He visits her daily. He loves her dearly. But he’s finally coming to terms that he’s living alone and wants a life outside his marriage. He’s testing the waters, so I can’t go into how it’s working for him, but he cared for his wife for years before he could no longer do it and is experiencing no guilt in looking for love elsewhere.
I’m in a relationship myself now, and my boyfriend and I have discussed what we would do “if” one of us no longer recognized the other. We’re not married, nor likely to be, but I’ve made it clear that I wouldn’t expect him to be celibate if I became one of those people fading in and out of who they are and who they remember. He says now, he’s in it for the long haul. That’s now. We’re both healthy and vital. We share a lot of interests. There are many things we do together. I believe he’ll be there if I need him, but I know neither of us are fortune tellers and can’t say what the future might really hold.
Obviously, I can only speak for myself. I would love to hear from anyone who cares to address this issue and how they’re dealing with it or with whatever questions or reservations they might have. In the end, I appreciate the fact that this is a very personal issue and the decision—one that can only be made by the caregiver.
The saga began Wednesday morning in March 9. Hours of screaming. Calling for the ambulance. Emergency room admission. Morphine drip for the pain. CT scan. Calls to calm his hysterical mother. Five-hour surgery I’d been told would just be a couple of hours. Surgical ICU for a week. Steve was put in an induced coma so all of his strength would go to healing. I sat in the alcove in his room and watched him for days; swaddled in white linen with tubes coming in and out of every part of him.
On Friday afternoon, our gastro doctor told me to go home and get some rest. His exact words were “Steve is circling the drain.” What? “He’s gonna have to fight to pull through the weekend. If he does, we’re in the clear. And you’re going to need your strength.” I couldn’t breathe. It was like I was punched in the gut. All the air was knocked out of me. I must have gone straight into a state of denial because “I knew” that Steve would pull through. I wouldn’t have it any other way. I’d spend my days sitting beside him as long as needed to secure his complete recovery.
When he was rushed to the hospital, the doctors thought it was acute appendicitis. I told them he’d been self-medicating for diverticulitis for a week and the surgeon discovered it was peritonitis from his CT scan.
I’d sit and knit in his room from 10:00 a.m. until I left about twelve hours later. The nurses loved me. We’d bonded and I was a great help to them. Steve’s bed was right in front of the nurse’s station and the room had a little alcove I could hide in after visiting hours were over. No one ever kicked me out.
On Friday morning when our internist was doing his rounds, I was already at the hospital. He needed to speak with me. The CT scan the surgeon had taken on Wednesday was shot a little high and shown cancer in the middle lobe of his right lung. After I caught my breath I conveniently “forgot” this until Steve had recovered from his surgery, was home healing and we began making visits to all of his physicians.
First the surgeon—Steve had done beautifully and was given a clean bill of health. Then his gastroenterologist—clean bill of health with instructions to change his diet and begin exercising. Finally, we went to our internist who also gave Steve a clean bill of health and told Steve to get dressed and meet him in his office—which was par for the course.
But this time, he told us that a cancerous growth had been found on the middle lobe of his right lung and that he needed to find a surgeon and oncologist as soon as possible. Now that the wounds were healing from his surgery, it was time to address the cancer.
A big part of caregiving for me was having the ability to go with whatever was thrown at me. The 12 Step program’s Serenity Prayer—“God grant me the serenity to accept the things I cannot change, courage to change the things I can and the wisdom to know the difference,” saw me through. It was that simple; that cut and dried. With whatever “Higher Power” I believed in, the prayer made perfect sense. It made it possible for me to go with the flow. To do all I could do to affect change acknowledging there were some things beyond my control.
That was the key. I didn’t relinquish control, I just needed to recognize when things were beyond me. All I could do was my best and then let go.
The word “cancer” rang out as a “death sentence, “ but I went to work finding the best oncologists and surgeons I could. We spent about two weeks interviewing leaders in the field in New York City and made our choice. We learned that if the middle lobe of his right lung was removed that Steve would be fine—for a while—but that this cancer would return and ultimately kill him. We heard that from eight different specialists.
Going through surgery for peritonitis and waiting for that to heal to be able to go through surgery to reverse the temporary colostomy he had needed to be able to wait for the reversal to heal to be able to have the middle lobe of his left lung removed took six months. After that, we’d be able to have peace of mind for a while.
Being told you’re going to die from cancer—eventually—doesn’t mean you just sit back and wait for it to take you. First there were scans every three months, then every six months and once we’d gone a year and a half cancer free, we got a little cocky. I was still doing research on new protocols, but with every visit to the oncologist we’d be told why “That’s not an option for Steve.” That didn’t stop me from looking for the best care available. After Steve’s second six-month scan, the cancer was back.
This, of course, did not make us happy, but we kept on plugging doing all we could to extend Steve’s life. Surgery in Boston (where his original surgeon had relocated), chemo and radiation in New York. It was his life but I was the one who was going to be left. From the time of diagnosis I knew that this day would come and other days like it, when we’d be told this or that protocol wasn’t working any more and the cancer was spreading.
In September of 2010 he started pinpoint radiation therapy. The cancer had spread to his spine. After this, there was a new chemo regimen. The one major blessing in all of this is Steve never looked sick. He never lost too much weight. He never lost his hair. His complexion was always ruddy so he never looked pale or sickly. For all the world, he looked like a healthy man and was treated as such.
Steve did a weekly TV call-in show for 35 years and he had many regular callers. Because he looked so well, not one of them knew he was ill. For one hour every week, he could feel free of the disease. He could be “the old Steve.” He did his show until two weeks before he died. It was his best therapy.
Waiting for chemo sometimes took hours. We’d have to go through the motions and have Steve’s vitals taken and then sit until someone could see us. When his doctor saw him, Steve asked “How long do I have?” and when the doctor told him “Maybe three months” I didn’t believe him. I lived with this man. I knew whatever was going on, Steve had weeks left to live, at best. While he took his treatment, I slipped away and found a P.A. who knew me. I confronted her. “Tell me the truth. I don’t think he has months to live. I’m his wife. I’m the one who will be left. How can I prepare for what I know is coming if I don’t know the truth? I need to know. I won’t tell him.” She turned to me and said “No more than a month. Maybe less.” At last. The truth, though ugly and sad, was something to hold on to.
About a week later, the oncologist told us “The cancer has gone to your spine. There is nothing more we can do for you except make sure you’re not in pain.” I’d heard those words before right before my father died. “We’ll make sure he’s comfortable” was another familiar comment. We left the doctor’s office, went home and cried together. We’d both done all we could and both given it our all. The fact that we had gotten to a place in our relationship where there was no blame being assigned, much appreciation and open expressions of love. I was going to have to live with the remnants of terminal cancer, but I could live with myself.
All my work and efforts on his behalf had just been part of the natural order. Steve let me know how much more capable I was than he had ever realized. He let me know that the thing he felt worst about was leaving me alone. There was so much left to be shared. He was about to turn seventy. About to begin to take it easy and travel to all the places we’d dreamed about.
Of course the idea of what my new life would be like had crossed my mind. I felt no guilt thinking about the future without him. After all I’d done everything within my power to keep him alive and we both accepted there would be life for me after Steve. But I was grateful; grateful that he’d never really looked ill; grateful he’d had it easy compared to some other cancer patients we knew; grateful he wasn’t in pain. But when the dementia took hold, I knew it was a matter of weeks or even days. I hated the thought of living like this for too long.
My Steve only made brief appearances now and then. From midnight ‘til dawn I lived with a paranoid maniac. He slept during the day—pain meds exhausted him, as had his episodes of dementia the night before. Of course he didn’t know what was going on, which made it all the more painful for me. This brilliant man was seeing spacecraft outside out bedroom window; or Vietnamese women with cats padding about the front of our apartment, stealing things. Days later he was hospitalized and ten days after that he died.
I’d learned to “play it as it lays.” It was the only way for me to cope. I’d done my very, very best and had zero regrets. Steve’d given me permission to live a good life after he passed. He’d told me who I couldn’t date. He’d told me to ask for help when I needed it. If he couldn’t be there, he wanted me to feel taken care of nevertheless. I’ve followed his instructions. I have a life. I try to give back. I have a mission. I have wonderful memories; but I have a future too. Steve wouldn’t have wanted me to waste it.
Since we posted the video last week asking you to call your government representatives, many of you wanted to know how to contact them and what to say. We can give you the how and just an outline of what, but the message must be from your heart about what you really need. We don’t want to put words in your mouths.
The easiest thing is to call their offices directly, but if you have no idea how to go about that, dial 202-224-3121, which will direct you to the Capitol switchboard. When you call, ask to be connected to your senator or representative. That part is easy enough.
When you call, ask for a Legislative Assistant or LA, who are the people responsible for supplying senators with information on issues and briefing them before upcoming votes. Each LA covers a subset of issues (e.g. health care, veterans’ affairs, education, etc.).
If you call repeatedly and keep asking for the LA (and get their name from the front office), let them know you are a constituent. Leave your name and address—then they know you’re serious. They should eventually talk to you—persistence is rewarded—but expect to have to call multiple times.
If you can’t get to an LA or congressional aide, leave a message with the receptionist regarding what prompted your call. Again, leave your name and address. Call again.
Know your facts.
Things to remember when calling your representative
- Be sure you have basic information about what prompted your call in front of you, being as specific as possible about your topic.
- State your opinion on what your legislator should do, if you know how you want him/her to vote.
- Mention your experience on the issue you’re calling about. It will help establish your credibility and may prompt the aide to ask more questions for guidance.
- Be brief. Especially right now, aides receive a large number of calls every day. Be respectful of their time.
- Be timely when you call. If the vote on your issue is imminent, they’re more likely to pay attention to what you have to say.
Hello. My name is______________ and I’m one of your constituents. I am calling to advise (Senator_______ or Representative_________) that family caregivers in this country are in crisis . With the ACA bill coming up for a vote, I feel my senator/representative needs to be aware that there are an estimated 65.7 million American adult family caregivers who are not receiving any assistance under the present healthcare system and feel this issue needs immediate attention so it can be included in the bill. The estimated value of family care on an annual basis to the government is $450 billion. We can’t afford to be neglected any longer. Thank you.
Of course you can add your personal circumstances, but be as brief as possible. If you feel the need to provide more information than a brief call allows, you can always write a letter. There are guides on how to do this effectively online.
Hope this brief guide helps. Make your voice heard!
Featured image: WASHINGTON DC – FEBRUARY 3, 2015: Senator and Presidential candidate Ted Cruz speaks to constituents at a meeting at the United States Capitol. Editorial credit: stock_photo_world / Shutterstock.com
OMG! Another year has gone by which, in retrospect, feels like it occurred in the blink of an eye, and what’s done is done. The coming year holds many mysteries, trepidations, adventures, changes and losses, but many opportunities as well. So, I’m suggesting that we dispense with resolutions and just focus on living in the here and now; living in the moment. Let’s all just BE.
Instead of the promissory list that leads to disappointments and recrimination over what we’ve failed to do, let’s concentrate on WHO we want to BE and WHAT we want to BE rather than what changes we want to make.
There’s a certain amount of satisfaction in writing a list, and I’m not encouraging you to not to do so. I am encouraging you, however, to consider how you look at life. You should know “you are enough;” that doesn’t mean you can’t BE more.
So for the month of January, I’m going to consider how I want to “be” in my life. I may want to be loved, but “Be Loving” would have to come first. I want to “Be Fearless” but since I don’t want to be careless or reckless I also want to “Be Sensible.” One does not preclude the other. We may or may not have some of the same items on our lists, but maybe your sense of daring is not the same as mine. It is, however, no less authentic.
There is one item everyone I’d like to see on everyone’s list—BE Yourself. It is, after all, what you can be best at.
We want to share your story!
Every caregiver is unique — we want to show the world what caregiving means. Send us your favorite photo of yourself, a selfie, or a photo that shows what caregiving means to you and we’ll share it with the world.
See more of what we’re talking about on Instagram
There are two ways to do it:
If you’re on Instagram
- Post your photo and tag #facesofcare.
- We’ll re-gram it.
If you’re not on Instagram
- Email the photo to firstname.lastname@example.org with your message in the body of the email.
- We’ll post it to our Instagram account.
When I was on the island, I realized I had a lot of appointments Thursday when I really wanted to leave the day open for Cori. So, I rescheduled and juggled and we had preliminary discussions. More to come tomorrow.
Erika was in, she bathed Schatzie who couldn’t be cuter, and did some shopping for me. Since I’ll be in town this weekend, I’ll be able to do a lot of my own shopping.
Made a lot of calls. Got tickets to The Cherry Orchard (Diane Lane is in the Roundabout production) and The Front Page, with more great Broadway stars than I can name. I’ll be seeing The Color Purple next week and Irving Berlin’s Holiday Inn will be at Studio 54 and I’ll get to see it in a few weeks. Eddie doesn’t really care about musicals so I go to see those without him. Made dr.’s appointments, scan appointments, a mammogram appointment, and made some billing phone calls to clear up some paperwork.
It was really good to see Cori. She’s redone the whole site. Looks great. Of course I could pick at the type and tweak it but I don’t know what can be done in WordPress, I just know I have a type fetish!
Cori is going to get some help from Casey on the CSS aspect of the sight (like I really understand what CSS is), but one way or another, it had to get up. Google knows about the error messages that have been occurring and we could lose our very good standing. Cori won’t let that last.
More tomorrow. It’s late.
If I hadn’t checked the ferry schedule before I called for my car, I would feel really stupid. I have this app on my iPhone that put the ferry schedules at my fingertips. I got up at 7:00 and intended to catch an 11:30 ferry. So my car would be waiting for me at 12:15. Only…the online schedule was wrong and the ferry left at 10:40 and the next one at 1:30. I had to call Ram [my driver] to tell him I screwed up and I wouldn’t be there ‘til 2:15. Poor guy had to wait. But he had a nephew who lived nearby and spent some time with his nephew’s kids. Ram is a very nice man and I’m very fond of him. A truly good human being.The ferry ride over was invigorating.
Got back to the city around 3:40—Cori had arrived in NY around the same time. She won’t be here in the office until tomorrow. Lots to do together.
We have The First Annual Caregiver Conference to go to in Chicago, on December 3, organized by Denise Brown and others. I had hoped to be able to speak there, but I don’t seem to be in the in crowd as far as caregiving coaches (the people who organized the event) and I’m on an “After Caregiving” panel. Chris McLellan, The Bow Tie Guy, whose radio show on “I Heart Radio” is going to be on the panel and that makes me happy. Cori and I have to get to planning what we should print to hand out. I’m not taking a table for $600. I’ve got to pay for me to go, for Cori to go, for me to stay (and Eddie and I are extending our trip). Cori has friends to stay with and Erika says she’ll be happy to take care of Schatzie. I don’t know what I’d do without Erika.
The trip to Chicago is important. Forget the conference—OWN is there and Walgreen’s is headquartered there. I want to meet with them both re: money for The Caregiver Space. If Oprah liked the idea, we’d get everything I’ve always wanted including a television show for caregivers.
I’ve got to figure out with Cori what we need for a presentation to these guys. I think they’re two different presentations. Walgreen’s would be a great financial backer and they’d get tons of good press and we’d have an opportunity to reach lots more caregivers. Oprah would need program outlines. Do I need financials for all of this? That’s the part I hate, but we have to talk about it so I can get it done in two months.
Had sushi for dinner. Made me happy. Watched Hillary and The Great Pumpkin and am still reeling. Time to sleep.
Between the U.S. Open and election coverage on MSNBC, I have the TV on all the time for company. I can’t wait for Wednesday night’s coverage of a back to back “Commander-In-Chief” forum, with Matt Lauer moderating and questioning Hillary and The Great Pumpkin. There’ll also be servicemen and women asking questions. And on the Intrepid. This could be fun.
Today, did laundry and more laundry and organizing and writing and research and worked a little in the garden—today was actually the stormiest day yet here—it even rained a little. Checked the ferry schedule to know what time I’d need to be picked up on the other side of the bay and reserved my car.
I did Dave Nassaney’s radio show too. We Skyped it again. His guest was a woman who’s a grief recovery counselor—she got her training at the Grief Recovery Institute in California. Eddie turned me on to them. The show was really good. One of the very best we’ve done. Maybe the best, even. I want to keep in touch with her. Have all her info on my many lists.
I did a little packing up and storage arrangement. I’ve still got 2 more months to the season here, and I’m already getting ready to leave. Not really—I guess it’s just that I know summer’s over (officially here) and the weather will be changing. Time for me to put away the whites (yes mom, I won’t wear white after Labor Day) and get out the corduroys. Fall’s my favorite season, really. Perfect weather for my favorite clothes. Too superficial? I’m just happier in Fall and Spring.
It’s my last day here for a couple of weeks. I’m staying ‘til Wednesday so I don’t see any real reason to head back out Friday; and Eddie is coming in on the 18th at 1:00 a.m. (Saturday/Sunday). To come out here on Sunday and have to turn around and get back to town on Monday is ridiculous. Cori is just in town for a few days and I have to make the most of her time here. At least Eddie agreed.
It was an overcast, windy day and the ocean was roiling (I love that word), but it’s still not bad here really. Hermine is lasting a lot longer than expected. The island is quiet; ferries are running on schedule and I’m glad I decided to stay. In fact, I’m so glad that I think I’ll stay one more day.
Did a lot of work today for graphics that need to be done with the site. Glad Cori will be in this week so we can discuss, face to face, the nature of the work that has to be done. It should speed things up a little—I need to get clarity on it. I have my own ideas of what to do, but before I go charging ahead in an entirely wrong direction, I’ll continue to do image research and wait on final execution ‘til after we speak.
I fully intended to do work on my memories for my writing group this weekend, but just wasn’t motivated to dig deep.
Let’s just say my lists have lists. Prioritizing is the next step. Just got lots to do for the site, for the beach house, for the loft, for Eddie, for my own sanity—I need lists. Self-care takes a lot of time. Training. Making appointments with doctors, keeping those appointments and following their instructions all take time. And of course the older I get, the more self-care there needs to be. If I don’t take care of myself now, I’m afraid it’ll be too late. I may be repeating myself here, but I’ve got to remind myself.
What happened to the days when I’d be out the door at 8:00 a.m., take care of personal business, shop, cook, work at home into the wee small hours of the morning and do this night after night after night? I tell everyone else to be kind to themselves and I have to remember to follow my own advice.
At least with lists, I get to cross off what I’ve done and feel I’ve accomplished something. I need to pat myself on the back now and then. I know I get a lot more done than I give myself credit for, but I always want to do more.
That sounds like something me, as a caregiver, would say. I always wanted to do more. Did I do enough? Was I kind enough? Did I ask the right questions? Does Sylvia need fresh linens? Does Steve need me to go to the pharmacy? The list of to do’s were endless. It’s no wonder, after doing all I did fro 2005 until 2011 that I sort of feel like I’m stuck in one place not doing anything.
On that note…I’ll say goodnight.
Today was all about Hermine, and it was a beautiful day. The TV news scared people off the island and like rats deserting a sinking ship, the 7:30 a.m. ferry was full. I decided to stay and got all the candles and flashlights ready, just in case.
Schatzie and I walked down to the ocean and it was quite beautiful. A helicopter circled over the water for hours for someone who’d decided it was a good time to go swimming. Warning flags were up all over and though there were many surfers in wet suits going in to catch some of the waves, they went with buddies. But there was this one guy who went in and no one saw him come out. The Coast Guard was called and after a long search, the found the swimmer atop his boogie-board, a bit peeved that anyone had come looking for him. Go figure.
They’re forecasting heavy winds and pounding surf for the island and some people are cutting their long holiday weekend short. I can only say the day was lovely and though it may very well be the calm before the storm, my feeling is that everyone is over reacting.
I can, however, hear the ocean a full block and a half away.
All the news is about tracking Hermine. We were nervous about the cookout all day. It was overcast, but they didn’t forecast rain. This is the big fundraiser of the season and it’s been compromised by the weather.
I got to the bay beach at 4:00 and set up the tables and the raffle prizes. Then we just waited for people who had yet to buy tickets. Didn’t do too badly I think, but the attendance was definitely down from other years. All the work we did…makes me a little sad.
They are actually talking about a voluntary evacuation in the morning. They expect the shoreline to really take a beating. I’m staying put. Got a 10 a.m. meeting to count the money we collected.
Got an email from Cori with graphic requests—she’s working really hard on rebuilding the site. Too many things were wrong and Google is threatening to remove us from our prime search position because of error messages. Not good.
Matt and I battened down the hatches when I got home from the cookout. There are gale warnings and we have to secure everything on the deck and remove outdoor furniture. Still have to get ropes to tie some stuff down in the morning—if the hardware store has any left!
Was supposed to be picked up at 10 this morning, but I overslept. Between having to eat breakfast, having to take a breathing treatment and packing last minute things I need a couple of hours before I can leave. It was okay. I still got to the island for a beautiful day.
Hurricane Hermine is threatening. The reports are coming in and it may spoil the weekend. Our rain date for the cookout is Sunday—hope the rain holds up. The very idea of a storm is keeping people from buying tickets ahead of time.
Did a lot of CareCard prep this evening. Have to be at the table to sell tickets at 9:00 – time to sleep.
Yesterday was just your basic work day. Nothing worth reporting.
Today was my annual outing with Marjorie to the U.S. Open. We met at 10 at Penn Station knowing it would rain—however, this is the first year there is a retractable roof on center court as Arthur Ashe.
We made the usual rounds—first stop American Express to get our promotional earpieces with a radio that only broadcasts the tennis play by play. It’s great. Then we went to the Nike booth and got t-shirts. Then we went to the Tennis Association’s booth and got more t-shirts and baseball caps. Gotta get a cap every year. Got a white one with a big “16” over the brim—my birthday—it works.
Then, last but not least, we went to the Ralph Lauren Polo store and got still more t-shirts and a fabulous shopping bag that’s really a great duffel.
We were inside by 11:30 and got to see the very first day match played under the new roof. It wasn’t raining, yet. Went to lunch at our usual place, but the management had changed and so had the menu. Marjorie was still hungry and filled up with a hot dog. Then we got to see the Andy Murray match—can’t remember with who. But it finally rained. It rained so hard the place sounded like a giant rain stick. The sound of the rain on the roof coupled with the ambient noise of the crowd, the whoosh of the air vents and the cheers at the end of each point were deafening. After the match was over, Murray commented that the noise was so loud you couldn’t hear the ball being hit. Big handicap.
I had to be back in the city and at writing group by 7:00 and that wasn’t a problem. Much better than the last time. I’d managed to get my piece flowing—just need more. I’m writing memory flashes. Central Park Zoo feeding the seals when mom was pregnant with Wayne. Bob-Ed bungalows and learning to swim from my dad. Sitting on Grandma Greenwald’s stoop on Sundays in the Bronx. Going to TV shows with my mom. All of this in the early 1950’s, so there’s great color as far as fashion, entertainment and family go.
Long day. Time for bed.
Did Dave’s radio show on Skype. Blab [the streaming service he had been using] folded. Seems there are a lot of people scurrying to find a place to stream. The guest was Arlene Mickley—a veteran caregiver whose husband had a stroke and was in her charge for 14 years. She and Dave had met at a stroke support group and have kept in touch for years.
Eddie had a shoot today in La Quinta, which is south of Palm Springs, for a promotional video for time-sharing condos on a PGA golf course. Long day for him. He drove down yesterday and won’t get home tonight ‘til after midnight.
Got back to town around 4:00 and had an hour long video waiting for me to assess a new methodology for treating Alzheimers and dementia patients. Dave Nassaney [The Caregiver’s Caregiver] was contacted by this Frenchman from Texas about promoting it. Dave wanted me to give him feedback on how to proceed.
I’ve given free advice way too often in my life to just tell this Frenchman how to best sell his service. I’m certainly not about to invest in it, which is what I think this was all about. Need to do a hell of a lot more research before I give any insights I might have to Dave.
Spent the rest of the day catching up with mail and writing for class.
Yesterday is a day I do not want to have to live the likes of again. Hard for me to believe that Matt [my landscaper/jack-of-all-trades] is such a drama queen. But he is. He just doesn’t see how he contributes to the whole deal.
I was up early to have breakfast before I went to sit at the market at 9:00. Schatzie is the best sales-dog. Everyone comes over to the table to pet her and while they’re there, we try to sell them tickets. Adorable bait.
At noon, we went home and something was clearly not right. The front gate was open and Matt was showing a beautiful little girl the fig trees. Who was she? I was polite and we walked to the back of the house where there was a strange woman standing watching her toddler son cavorting on the deck. Lo and behold, this woman was Matt’s latest love of his life. He basically wanted to know if they could stay with me for a while in the upstairs bedrooms.
Under no circumstances was I going to have a hard-to-handle toddler, an adolescent girl, a 26 year old woman and Matt living under my roof. How did they happen to be there? A week ago, Matt told me she was down in Florida and wanted to come up and leave her boyfriend who was beating her. So I’m put in a position where I have to say no to an abused woman. No…you can’t stay with me. She showed up in the Bronx on Wednesday, apparently—her aunt gave her the plane fare—and Matt swears up and down he didn’t know she was showing up on my doorstep on Saturday.
He was totally pissed off that I wouldn’t make room for them. This place is my refuge. The place I go to think and write and garden and find a different kind of peace than I have anywhere else. I have a generosity of spirit that often gets me in trouble and I was glad I stuck to my guns. By evening, Matt had found a room for them to rent for the weekend. During the week, he uses a room over the shed to take breaks, have lunch, use my wi-fi, whatever, and he assumed this woman, her kids and he could stay there if not IN the house. I wasn’t about to take the risk, with the kids and all.
So…Marjorie is watching all this go on before I got back. She’s doing her best to hold down the fort. Matt says just let them change for the beach and then shower afterwards. They’ll sleep elsewhere.
How does he do it? Every year another drama with women. I’m very patient and I listen ‘cause I’m his mentor/confidant/guru. I’m not patting myself on the back, I just know he doesn’t have anyone else like me in his life.
So Saturday night, we’re supposed to go to see the movie and Marjorie isn’t feeling up to it. I made an appearance at the bay beach and then came home. She told me then she was feeling fine—she just wanted to make sure someone was at the house making sure they didn’t come back and move in.
This morning I was back at the table in front of the market selling tickets. Thank heavens we’ve only got one more week of this. It’s feeling like a vocation already.
Matt came by without what he was already calling his “family” to pick up some food he’d gotten for the kids. Things weren’t adding up. How did this woman know where to go once she got to the island? Why was the TV left on a channel with cartoons? Why was there a single slice of pizza in a box in my kitchen? Did he know she was coming? Had she been there before I got there? Is that why he’d gotten me flowers? I hate having trust issues with people who are already beneficiaries of my trust.
He swears they weren’t here before Saturday morning and had answers for all my questions. But there was new drama about my not trusting him. It went on and on, all day long. He was staying with my realtor, who rents out rooms from time to time. She found him a place for his new family one town over. I could rest easy on that count. But it took a while for him to see that I had a point. I couldn’t have a toddler in a place that wasn’t child-proofed. Too many things could go wrong.
Marjorie and I are staying until tomorrow afternoon.
It’s still hard for me to believe Steve would have been 75 (yikes) today. Don’t know why this year I dreaded this day. Mitch [Steve’s brother] texted me pretty much at dawn to remind me—like I could really forget. Why does everyone in Steve’s family think they knew him better than I did. He spent more of his life with me than with anyone else. Does blood give them “right of ownership?”
Picked up the posters at Staples and spent the rest of the day catching up on a lot of work I hadn’t gotten done earlier this week. There’s never nothing to do. I also have to write for my writing class on Thursday. Last time we met, I was pretty disheartened. Orlagh and I got there early last time and when we “checked in” and told Kate [our coach] how we’d found writing this time around, I was so clear about the fact that things weren’t flowing and I was very frustrated with it all. When my turn came to read my work, Paul and Victor [the other members of the group] had arrived, and Paul made a comment about flow in his critique.
I wasn’t crazy about how his comment was handled. I agreed with him, clearly. Why did Kate make such a big deal about flow when I’d already said I’d had a problem with it? I didn’t say it, but I was pretty angry that my own comment was ignored. We don’t allow crosstalk in the group, so I wasn’t allowed to defend myself. Really not a great feeling.
So now I have to write for next Thursday and I plan on getting that done over the weekend. Gotta make it FLOW!
Marjorie and I caught the last ferry, as planned, and managed to avoid traffic—as planned. She’s pooped out already—she usually goes to bed at 8:00 and gets to the office at 6:00 a.m. at the latest. And…she goes to the gym before work on some days. She’s amazing. No shame in wanting to go to sleep. I’m gonna put my head down pretty soon. Just have to get my stuff together for the a.m. shift selling cookout tickets at the market.
Oh—when we got to the ferry, Matt picked us up and when we got to the house, he had gotten flowers for us and lit candles. He said “Girly stuff.” It was nice.
Not much to report. Eddie flew out late tonight for LA. He was running around all day and I spent much of the day on self-care with Cynthia. Marjorie can’t leave early tomorrow for the island so we’ll head out to catch the last ferry instead.
Featured image: Pozdeyev Vitaly / Shutterstock.com
A Task Rabbit temp every now and then hasn’t let me keep up with all the stuff collecting on my desk. It never goes away. No sooner have I taken care of the month’s bills than my mailbox is full of the next month’s bills. It’s unnerving. I need to make a point of staying on top of it.
Have to get three more color posters printed and put them in frames, which I also need to get, before I go out to the island. The Moonlight Movie is Saturday night, The Graduate, and the posters are for the people who donated money to sponsor the movie.
Marjorie is coming out with me Friday. Need to make plans with her.
Eddie is leaving tomorrow and he’s got to sort a bunch of stuff out at his apartment, so there’s not a hell of a lot of time for us to do much of anything this trip.
Oy! What a day. I know Eddie and I decided together to just spend the day vegging out on the island yesterday, but that made today insanely hectic.
There didn’t seem to be a reason to catch the very first ferry off the island at 7:30 since the errands we had to run couldn’t be started ‘til around 10.
We had a van and went to run the “heaviest” of the chores first. We needed 21 bags of Long Island gravel and 21 – 18” round poured concrete steppingstones from a resource we’d used once before. Weighed too much and took up too much room in the back of the van to shop for anything else, so we headed back to the freight house at the ferry dock. That was the first task.
Then it was off to Costco to buy food for the week and more. It shouldn’t be a total loss, I also bought more string lights for the back deck and Eddie couldn’t resist going back to Lowe’s to buy three Clematis flowering vine plants he’d seen on Sunday. The plants had to go to the freight house, so it was back to the ferry to drop them off. I had a radio show mid-afternoon and he had an audition at 5:30 pm, so we grabbed lunch and hightailed it back to town.
Got up early, took a treatment, had breakfast, made lunch to take with us and decided not to go off island after all. We figured we could do it all tomorrow. Just took the day off and caught our breath.
I thought Matt [landscaper] would be spending the day with us but he was nowhere to be found. At first I was upset, but it ended up being just me and Eddie having a nice quiet day together.
Long day! Now that I’m taking a treatment for my breathing before I eat breakfast and then have to eat breakfast before I leave the house, I had to get up really early in order to make the 10:00 a.m. ferry off the island. Made it.
Eddie arrived about twenty minutes after me and we headed straight to Home Depot. Got the eyelets we needed to finish up the wire trellis. Then onto Costco where Schatzie [my pup] is no longer allowed to ride in her little bag in the cart. She has to walk. Up and down every aisle. It’s exhausting. We always buy more than we need and I’ve learned to be more cautious—especially since this trip is a very short one for Eddie. I don’t need a fridge packed to the hilt with fruits and veggies. Everything in moderation!
Actually ate lunch out at a diner. Eating out with Eddie is an odd occurrence.
It’s still very hot here. Has been all week. Just stopped complaining about it.
Got to the house and Eddie immediately got to the business of inventorying the garden. Where are the toad lilies? Is this the amaryllis? Hey, look at the dahlias! I had to get to the business of finding room for all that we bought. Call it a conflict of interests. I wish he’d help me unpack when we arrive at the house. I’ve told him so a dozen times, at least, but he’s so obsessed with the garden, it’s impossible to tear him away.
We watched 5 hours of Ray Donovan. He needed to catch up. Of course we squeezed dinner in there somewhere (and my nightly treatment) and fell into bed exhausted. We’re going off island tomorrow to shop and bring things to the freight boat.
The Magic Show was a success! We actually sold about $1,900 in tickets. It wasn’t easy for Michael, the magician, since much of the audience was kids of 7-10, and there were toddlers running around on stage while he was doing his act. He dealt with it well. He had a great idea for next year. We can have a magic show just for the kids at their playground. He represents a bunch of other magicians who specialize in kid stuff. Could work out. He’s been great and more than just a little cooperative.
We’re already selling tickets for the Labor Day cookout. I feel like it’s become a full-time job. Up and at ‘em in front of the market by 9 a.m.
Eddie is coming in tomorrow morning at the crack of dawn. He’s going to take the shuttle from JFK to the subway to my place; get his friend Bill’s car keys out of the medicine chest, find out where Bill’s car is parked, pick it up and drive it out to the island. I’m going to take the ferry across at 10:00 (with the dog) and we’ll head out to Costco, Home Depot and Lowe’s. Lots of stuff to get for the house and we have no food to speak of right now. Will try and get to bed early.
Out on the island again. Had a conference call with Lisa Hirsch (My Mom, My Hero author) and we talked about the mother/daughter support group we’re planning on starting after Labor Day.
We also discussed other ways of extending the caregiver work we’re doing. She’s a great self-promoter and knows some well-connected people at Huffington Post as well as some TV contacts. Since I’m in the middle of putting together a promotions kit to give to people interested I’d like to sponsor us, I’ll keep Lisa’s goals in mind as well so we can piggyback.
Tomorrow is finally “magic time” here. The Magic Show we’ve been promoting on the island was called off because of the weather three weeks ago, and tomorrow the weather gods look like they’ll be favoring us.
Another ordinary workday. Have some artwork to do for island events. Can always find writing to do, but I’m feeling very out of sorts anticipating Steve’s birthday next week.
Some years it’s very easy, but for some reason, this year is rough. He would have been 75. This marks five birthdays since he died. Eddie [boyfriend] is coming in on Sunday a.m. and leaving Thursday night, so I’ll be alone on the 26th. It is, what it is.
The Dog Days of August are upon us. It’s blisteringly hot in New York and at the beach and not only is there no escape from the heat, but there’s nowhere to go where the 26th of August, my late husband’s birthday, isn’t looming large on the calendar.
March 19, 2016 marked five years since Steve died. He would have been 70 that summer; this year, it follows, he would have been celebrating his 75th birthday and I would have been busy planning a huge party. Alas, I am not.
Moving on with my life has been a “process.” I didn’t need grief counseling; my pre-grieving experience and sharing honest feelings with my husband, didn’t leave me with an “I’ll be lost without him” feeling. Instead, I learned NOT to say “NO” to anything and concentrated on staying open to possibilities as they presented themselves. The huge void the end of caregiving left in my life was filled building “The Caregiver Space,” which has kept me close to Steve’s memory but not stuck in the past. Visiting and revisiting the cancer diagnosis and how caring for a spouse you have been told will ultimately succumb to the disease, has proved far less painful, in retrospect, than expected. It hasn’t been at all painful keeping his memory alive. We had wonderful times. He’s always around—I still live in the loft we built and shared. The photos out on the shelves of vacations taken, fish caught and love shared remind me of Steve, his humor and his spirit—but the loft is a far cry from a shrine.
There are moments when his presence is palpable—I’ll hear a song or a see a movie on TV that was special to us and it feels like he touched me on the shoulder. This often happens at the times when “a sign” from him is most welcome. I sort of say (to myself), “Hi Steve! How’d you know?” Sometimes it feels like it was just yesterday that he passed. At other times I am amazed at how long it’s been and allow myself to feel a great sense of accomplishment.
I have moved on. I have a boyfriend; I have The Caregiver Space—both require me to be flexible and draw on my life skills. I don’t feel sorry for myself—few people have been lucky enough to have someone like Steve in their life. He was brilliant, funny, insightful, adorable and a royal pain in the butt. I wouldn’t have given that up for anything. We were joined at the hip and as the expression goes, “The presence of his absence is everywhere.” But after two-and-a-half years alone, I felt it was time to begin dating. Happily, the man I’m dating understands and respects the memory of my husband and has no problem with his remaining a big part of my life. We were, after all, together for almost thirty-two years. You don’t just wipe the slate clean—I don’t want to. I learned too much and loved too much to let it all go by the wayside.
But August 26th is still just around the corner. Ten days away, to be exact. I’ll be with my girlfriend Marjorie at the beach. My boyfriend is bi-coastal and will be returning to LA the day before. That feels right. Marjorie knew and loved Steve and is married to one of his very dearest friends. I’m not alone in feeling the loss. But I don’t dwell on it. I allow myself to feel whatever I want to feel whenever I want to feel it. I have my “go to” songs if I want to have a good cry—or my “go to” movies for that matter. I follow my heart, which has miraculously led me into a good relationship with a man of an appropriate age. He’s chasing his dream of being an actor, now that he’s retired, and I have The Caregiver Space. We’re both as vital as we’ve ever been doing things we love.
I’m thankful—every day—that Steve was in my life. I do whatever I can to honor him in what I’ve chosen to do. On what would have been his 75th birthday, the best way to celebrate him is to say “Steve…look what I’ve accomplished because of you. You’ve made it possible for me to help a lot of other people.” I think he’d be proud of and pleased with that.
Left the island noon-ish and made my way back to the city for an appointment with the dermatologist. I love my doctors. It was worth the work putting my group of physicians at the same hospital together. They all know each other and they all know my history with each of them. Now it’s all on computer though—so if Dr. W wants to see my history with Dr. M, he just has to sign in on the Mt. Sinai hospital database and he can see my entire life story. I’ve got a bunch of guys I trust.
Told Dave Nassaney earlier in the week that I couldn’t do his radio show today because of my appointment and as it turns out, Blab went out of business and he had to find another way to do the show at the last minute. He’s back to Skype for the time being, but I need to speak with Alex [Steve’s best friend] to see if there’s a way of us joining the GabNet family.
Alex has always been on the cutting edge and he now has created a 24-hour radio network. I want to know what he can do for us and/or Dave.
Today is a day of appreciation. I was fortunate enough to be able to take an extra day for myself, to write, to do some designing and to ride all through Seaview, up and down every street, putting up posters for the Labor Day Cookout and the Movie in the Moonlight which will be “The Graduate” on August 27.
The news today was that John McLaughlin passed away at midnight. He really was a pioneer in the world of news. The way he influenced the manner in which the news can be discussed led to CNN, MSNBC, Bloomberg TV, Bill Maher, John Stewart, Steven Colbert, etc. He was on my list of people most likely to die soon. He hadn’t been looking well this year. Hey, he was in his nineties and still doing his own weekly TV show. He’ll be missed. The tributes from news anchors and commentators just keep pouring in. I’m glad I grew to appreciate him while I still had many years to enjoy his program. Sunday morning news programs won’t be the same.
Ugh! Another scorching hot day. First thing I did was sit in front of the market selling tickets for the Labor Day Cookout for two hours. Then I walked into town to check out the crafts fair and I’ve got to say there was absolutely nothing that piqued my interest. Some of the vendors were packing up early because they weren’t doing enough business in the extreme heat to merit staying open.
Staying over until Tuesday a.m. Happy to have that luxury.
Got out to the island and it was too hot to go to the craft show in town. It’s one of my favorite events of the summer and I know for a fact that I wasn’t the only person who avoided being out in the sun. I feel so bad for the artists that have to be at their booths outside all day. Hope I can go tomorrow.
Tonight their was a block party for 3 blocks at the Katz’s on the back deck. Very comfortable, shaded area. I was alone—my escort is out on the opposite coast this week. Alas. Didn’t fare too badly though. I used to hate being the only person at an event solo, not drinking and not eating, but I’ve gotten over that. I just don’t particularly enjoy the company of a lot of the people at the party, so I stayed long enough not to be rude and I left.
Came home and watched a few episodes of “Peaky Blinders” on Netflix. There is so much quality programming being done for television now.
Hope to get to the crafts fair tomorrow.