10/18/21

I’m back home in Boston, working from my dining room table. My home office is buried with piles of suitcases and clothes. I had a serious amount of clothes accruing at my parent’s place in NJ, so I cleaned out most of it and brought it home. It felt in some ways that I had moved in there, and I want to try to feel more connected to my house. I still don’t feel connected to it somehow. I feel like a visitor who comes back for a few days here & there. It’s tough. Ted is trying to help me with that. I think when we hang our paintings on the walls that will help.

I saw every hour on the clock last night, partially because I was ruminating but more so it was because my “toddler” kitten, Louie, was snuggling with me. That part was so sweet, but there were times when he’d think I was his Mama, and he’d bury his claws into my skin like he’d do with a mama cat – except I’m a human with soft skin! The cats are a true sense of comfort, though.

Ted cooked me a beautiful dinner last night – steak on the grill with root veggies, and an amazing apple crisp with homemade whipped cream. I told him my mom would like the whipped cream, as she used to comment when we’d go out to eat on whether the whipped cream was “real” or “from a can.” Fortunately, I benefit from Ted’s cooking skills!

I saw the kids briefly this morning before school. They were so excited for their Hamilton Playbills and t-shirts. J changed his shirt before he ran off to the bus. I left them a bunch of goodies on their beds, including other fun shirts and comics from “Silent Bob and Jay’s Secret Stash” in Red Bank, which is Kevin Smith’s flagship store. It’s a fun place to wander.

The report from NJ this morning is that Mom is on a morphine routine now, and while it doesn’t stop her stomach episodes, it is helping her be more comfortable. It is quite agonizing to see her suffering. She is rarely lucid now, so our conversations with her have mostly ceased. I did get a chance to tell her I saw Hamilton. I asked her how she was feeling, and she said, “like complete shit.” That’s my mom for ya.

Ok, must get back to work.

10/15/21

It’s 10:15pm on Friday evening. I’m sitting on the couch at the foot of mom’s hospital bed. Tonight she requested morphine. She’s dealing with these painful heaving episodes so my hope is she gets some relief. Dad and I called the on-call nurse & she talked him through it.

My brother returns to NJ tomorrow so I’m heading out. I am going to NYC tomorrow for 24 hours, namely because the kids were exposed to someone at school with COVID so I’m giving them time to get test results. Never a dull. So, I knew I needed a break and thought I’d treat myself to a wander around the city. Dad and I split the cost of a ticket for me to see Hamilton, so I’ll be in row G at tomorrow’s matinee. Super excited!

It’s never easy to leave. I always wonder if it’ll be my goodbye with mom. This time, it very well may be.

It’s funny. Mom didn’t like Hamilton. She saw it when it first opened with Lin Manuel Miranda, before all the hype. I appreciate her candor about it as she wasn’t swayed by public opinion. She smiled today when I told her I was seeing it.

Ok, dad is back so more later.

Sleep

It’s 3:30 AM and I’m adding to my bundle on thredUP. using credit that I have on my account.

My eyes opened wide about an hour ago. Usually I wake up around 4 AM, so this was a change for me. My parent’s condo is still. Downstairs, Gertrude is likely watching TV while checking in on mom. Dad is probably like me, either tossing and turning, or staring at the ceiling. He asked me to get him some doodling books to potentially help with his insomnia. Normally, I will listen to a podcast, and fall back asleep. That didn’t work tonight.

Lately, I’ve been trying to make mom laugh. Yesterday, we received a box from hospice in the mail of chucks, wipes, hand sanitizer, gloves, and more. I made a big production of telling her she got a package – you know that feeling when you get a package in the mail. I tried to make the fact that these were “the best chucks,” according to the hospice nurse, seem like we had gotten the best package ever. I am pretty sure I even quoted Oprah’s famous line by saying, “you’ve got a depends, and you’ve got a depends!” It was good to see a smile on my mom‘s face for even a moment.

In the middle of all of this, I somehow booked 4 meetings next week for work. I am incredibly proud! I am heading home on Saturday morning. If things remain stable, I will hopefully be heading to a B’nei mitzvah on Friday before I return. Of course everything is tentative. I’m looking forward to seeing Ted, the kids, and the cats. Hey Ted, are you happy that I put the kids before the cats in that statement? We all know how much I love those cats! But seriously, I do miss the kids. J has been calling me in the evening and I enjoy our chats. He is a very special person – definitely has one of the biggest hearts I’ve ever seen, full of love and kindness.

Well, I should try to get some sleep. Thanks again for all the outreach. It really does mean a lot. We received some delicious food yesterday, and a care package. my dad will not go hungry! He is well taken care of by all of you, and I am incredibly grateful.

caring for a mom on hospice

The Hospice Chaplan Lisa just said to me as we sat on the couch and I cried, “Hospice is hard to understand if you’re not ‘in it.'”

My emotions don’t care if it is 1:15pm on a Wednesday, after a team meeting and during a training, and prior to a 2pm call with a colleague from another hospital. They are raw and appear when they feel like it.

“But I’m the rock, here, Lisa,” I told the Chaplan. “And I have clinical depression and anxiety. I do not have time to collapse or everything collapses around me.” I am desperately trying to set up my time back in MA so that I can get appropriate rest, but I have 2 cats and 2 kids who seek my attention. They aren’t thinking about my needs. I feel completely isolated and alone. And I know this is the trigger to my road to depression. I am desperately trying to block these triggers by finding additional therapy resources, providing a quiet place to sleep, an uninterrupted workplace, and a break from this hell I feel like I am living in. With all do respect to my mom’s friends and extended family, this is my mother I’m losing – my support person, the person who listens to me when I need advice or support, and I don’t have her to talk to anymore. So when people come to me with their sense of loss, it sometimes boggles my mind because what about my loss? These are the times I feel incredibly alone. This isn’t a judgement on anyone in particular or to dissuade others from verbalizing their personal sense of loss. This is just me feeling like I need to take a step back from my people pleasing mentality and remind myself that I don’t need to respond to all of the emails, texts, and calls right now. I can wait until I’m stable enough.

This is the depression talking, and I’m trying to find the tools to help me. I asked to reschedule my afternoon meeting, and I will make it up later.

There is a vulnerability to writing this here on my blog. I know there are a lot of people reading this who may not understand or get personally offended by what I write. It’s not about you. It’s about me and my needs. It’s about my family’s needs. Here is a good overview of what hospice entails in case you’re not sure.

I am so grateful to friends and family who read this and support us in the ways we truly need support. There are a few exceptions, but for the most part, your outreach is truly special and we love it. Mom loves the flowers and plants she has received. We discuss each sender and their role in our lives. Dad and I have loved the delivery of sweets, especially those Nothing Bundt Cakes. Yesterday I went over there and bought us two more! And when we’re emotionally stable, we read all of the texts and emails to her. As long as you’re ok if we do it on our timeline, keep them coming and I’ll share when I can. If you need a response on your timeline, I would wait for a greenlight from me either here or on Facebook when we can handle these things emotionally. It’s the little things that help us out. My parent’s friends have been dropping off food to us several times a week. It’s incredibly helpful. Going to the supermarket has become increasingly more stressful for me because of crowds and lines. So, when Dad tells me he has salmon croquettes waiting for him, I am incredibly relieved because I know he’s set for the night. My friend “M” sent me a Dunks gift card. So amazing. “A” sent me a Door Dash gift card. We feasted on gourmet Chinese on that. It is so much easier for folks to just send to us what is in their heart than to ask me what we need. It’s hard for me to think about what we need. I drink a ton of coffee, eat a lot of salads and chocolate (nice balance, right?), and my dad will pretty much enjoy whatever food he doesn’t have to make himself!

And wouldn’t you know it? This post has calmed me down and helped me center myself. What do I need right now? Lunch and rest.

Strength &agony

I am 100% convinced that my mother is the strongest person I know. Last night, as I stood by her side, she was ill, no complaints, and then thanked me for assisting her. And now, as I sit by her side with my laptop (working), it’s happening again.

“It doesn’t seem right, does it, mom?” What a way to end your life. She deserves better. I’m in tears. And now, a few minutes later, she rests again with her eyes closed.

I am extremely grateful for remote work today. If I was office bound, I would likely be on a leave of absence from work, but since I can work from “anywhere” right now, I can do both. I don’t think I could ever go back to working full time in an office again, to be honest. I guess I should say I do not want to, but depending on the nature of how things go with my job, I might have to. Have you heard about the “Great Resignation?” I guess lots of people are leaving their jobs for something “better.” As a Gen Xer, we’re used to just dealing with the hand we’re dealt, but that doesn’t work for most anymore.

Back to mom. She just asked for some help. So, I will end this and be back again soon.

I’m on the train home. I am sitting in Penn Station in NYC while the train loads the next round of people. I am listening to the soundtrack of “Damn Yankees,” on my free trial of Apple Radio, and it makes me laugh that I still know all of the words. I was the stage manager for this musical back at Long Lake Camp, so I heard it sung a lot! I remember buying the tape when I came home from camp that summer, and listened to it over and over. It reminds me of the constant replaying of “In the Heights” in my car with the boys now. It’s amazing how even though we’re not blood related, we have many things in common.

It was so hard to leave this morning. I told mom that she did not need to wait for me to return to go. She looked at me with the saddest of eyes and said, “I’m learning its not my choice.” It’s unbelievably heartbreaking. I told my brother and dad that I feel guilty for leaving. My brother told me that he could see I was depleted and I need to recharge.

Ok, this will probably be my last post for a while.

Home sweet home

I just booked a train ticket home! Ken is here, and we all agreed I need a break. So I’ll work from the train tomorrow and Ted will pick me up from the train. I have my car in NJ and will leave it here. Train is so much easier. So excited to go home to see Ted, my cats, the kids, and my house!

10/3/21

It’s Sunday night around 7:30pm. I’m sitting with mom, listening to sleep, after a quick reminiscence of the Clift Collection in Manchester, VT. It was her favorite clothing shop. There was one in Wellesley, MA, where mom was planning to move, and she asked me if was still open. “No, I said, it closed.” We agreed it was a great shop.

We’re pursuing additional daytime care as she weakens. This weekend was especially tough. I slept for hours yesterday. I was so wiped out. I think we’re all deteriorating a bit over here. I miss Ted, the cats, the kids. But I’m where I need to be.

I feel like I’m a broken record. I have nothing else to write about, but this is life right now. I’m getting a glimpse into human nature – who rises & who disappoints – when you’re in crisis mode. But I know others have their own stuff to deal with, and I try to be gentle and nonjudgmental. I am grateful to the friends & family who have supported dad & I through this – dinners, cakes, cards, calls – many of you who read this, so I thank you. It is so important to focus on what fills you up rather than the small things that deplete you.

I went to the supermarket today and was carrying a huge package of incontinence stuff. I kept thinking about when I was a teenager and everything embarrassed me. I wouldn’t be seen walking into the movies with my family. I wouldn’t dare buy my own feminine protection with hiding it under piles of other items in the shopping cart. And here I am, buying a giant package of these glaringly obvious Poise pads. I did not give a crap what people thought. I’ve realized I’ve stopped caring what other people think, especially strangers.

Anyhow, those are tonight’s thoughts. I need to get myself back to the ocean this week. That’s my goal.

10/1/21

New fiscal year. 100 donor meetings to go.

I cancelled my trip home. Our home health aide informed my dad that we’ll need to do more now to support mom, so I will remain in NJ to help. It’s the right thing to do.

I wake up tired. Not sure if it from the stress or sleep apnea. Either way, by the time 6pm rolls around, after juggling a full work day and life here, I’m wiped out. I am trying to figure out how to balance work and home life right now, and it’s so tough. I don’t have a ton of vacation time left (about 2 weeks), and we only get 3 days for bereavement, which doesn’t really help much with Shivas. Can you believe this is what I’m worrying about right now? It feels silly but I like my job and I take it seriously. Fortunately I have an excellent manager who gets it.

I went out yesterday and purchased a GIANT pack of k-cups, so I’m literally living off caffeine these days. I told my therapist I worry about my addictive personality, as I’ve been open on here about my past eating issues, but I feel like if I talk openly about it, perhaps that will help me deal. I’m more concerned about after my mom passes away, as now, I can still pop into the guest room and see her eyes widen. She says, “Hey, baby” in her soft voice, and then we can get into a brief dialogue. Soon, that will cease. Yesterday, I asked her what I should visualize if I am missing her after she is gone. She told me to think about all of the trips we took together – London, Rome, St. Thomas, Bermuda, etc. We talked about the visits to Broadway to see Rent, Anything Goes, They’re Playing Our Song. She said, “Just remember that I had the most fulfilling life and I wouldn’t change a thing.” #noregrets

More later.

9/30/21 – Can you feel the love?

The first thing I think of when I see the date above is “end of fiscal year.” Ugh.

But, I also think that it would be about a week and a handful of days before my wedding, which was scheduled for 10/10/21. Yes, I am already married, but this would have been our big celebration. Instead, I’m still cancelling appointments as they pop up on my calendar – nails, dress fitting, cake tasting.

How does it make me feel? I don’t feel much about it, honestly, as I am just making them tasks I need to do. If I think about it too deeply, it makes me sad. But I know we don’t need a big party to celebrate the love Ted and I possess for each other. I see it every day, when he texts me as soon as he gets to work, when he calls me right at 5pm when his workday ends, and the zooms we squeeze in when we’re apart. I feel it when he assures me I am doing the right thing by being in NJ to spend my mom’s last days by her side. As I help her move from one side to the other in her hospital bed, I can still feel the love.

And, then around 5:30pm, the photos of Louie (aka Boo Boo) and Nermal (aka Nerms) start coming into my phone. The cats wait at the screen door for Ted to come home, as they are hungry, lonely, whatever cats feel. I feel the love as I laugh at the texts about Louie falling off the new kitchen stool while sound asleep. And we mutually love Nermal, despite her desperate growls at Louie.

You have to look for the positives in life when going through something like this. It’s surreal and humbling to watch the strongest women you know deteriorate. I feel torn as I want her to live forever, but I also know her quality of life is diminished. She wants to be remembered as the strong, fierce Helaine. We have awards all over the place here from her volunteer work – the highest level awards from American Cancer Society, Hadassah, you name it. If she was involved, she gave it 150% and got recognized for it.

My dad commented to me that he never really understood the impact that she had made on the world. He keeps telling me that I am “my mother’s daughter” and then some. He said he listens to my conversations on the phone for work, and he is impressed. I am usually on the phone with a Harvard-educated physician so to have him compliment me is quite lovely. I take so much pride in the work that I do. And now, I am fundraising for a big Boston-based hospital so I know the money goes to a very important cause. It wasn’t that I didn’t enjoy raising money for the arts or Shakespeare – that is critically important too – but in the middle of a pandemic, it feels good to be doing something related to healthcare. Speaking of, must get back to work!

9/29/21

Very long day. Started working before 9am and wrapped up with a 7:30pm meeting with a physician who lives in Palo Alto, CA. In between, I ran to the Dollar Tree to get gift bags as mom has asked me to pass along her treasures & collectibles to her dear friends who have been so good to us.

It’s fun to partner with her on what to give them. I told her that she’s still telling me what to do, even while bed bound. I told her I shared with my friend I had dinner with last night that she’ll be “telling me what to do from the grave.” Without missing a beat, mom replied, “probably.” She’s still making me smile.

Dad and I chit chatted after my evening meeting. I told him that I was nauseous for half of my trip home because I saw it backwards on the Amtrak train. He responded with a story from Vietnam where he was on a giant cargo plane riding backwards, and a large marine was throwing up. I told him, “way to one up me dad with your navy stories.” At least we can find the humor amongst the sadness.

I’m heading home on Friday after work, and returning Wednesday, assuming things remain “stable” although I can see mom is getting weaker now. She’s reminiscing and told me she sang to my brother on the phone today. So sweet.

That’s all for today.

Happy birthday, mom!

I returned to New Jersey last night via Amtrak. I left my car at the train station so the trip was very smooth, and I didn’t have to deal with the traffic in NJ or Boston.

Today is mom’s 79th birthday – she was born September 27, 1942. She is part of the “Before Boomer” group, which makes me laugh because it sounds like a title that the boomers may have created (no offense to the Boomers reading this). She was born in the middle of WWII, which is so surreal to me, as it was such a tumultuous time. Then again, look at us now! We’re in the middle of a pandemic. We’re a divided country in so many ways – political parties, vaccinated or not vaccinated, etc. Will she leave this world in the middle of chaos as well?

I had a beautiful weekend back home in Braintree with Ted and the kids. We accomplished a lot! We had date night at our local place, had Dim Sum with the kids, got our new couch and kitchen island delivered & installed, and we cleaned. I also got my home office set up so when I return, it’s ready for me. Such a relief. The kids built a big Lego set that my parents sent to them so that kept them occupied.

The kids were very upset that I was leaving again. I can understand their frustrations. I tried to explain to them why I need to be in NJ and that no matter where I am, they are always in my heart. R said, “No, I’m not!” He has a hard time expressing his feelings without bursting into tears or getting very angry. We’re working on that.

More later.

all roads lead to home

I bought a train ticket to go home tomorrow for a few days. Mom seems to be stable – very weak – but stable, so I feel comfortable going home for a few days. Her birthday is Monday, so I’ll return Sunday night. It is likely the last birthday we’ll spend together so I want to be here for it. While I’m gone, my brother will hold down the fort with my dad. I told myself that should anything happen while I’m gone, I should not have regrets. But it’s hard.

My therapist reinforced that I must recharge this weekend. I am a bit concerned that the kids will attempt to absorb my last bit of strength so I will need to have a chat with them about it. I think the thing that put me over the edge about going home was the photo I received from Ted last night of our dining room table split in half! Yes, the table we’ve been using for pretty much all meals, my work until I get my office set up, you name it – broke in half! Fortunately, we have his old table in the basement so that’ll serve as a temporary placeholder until we order a new one.

I compared my life balance to a pendulum. When I came to NJ, it swung towards caring for my parents. Now, it is swinging more the other way and I must tend to those needs so it somehow lands in the center….somehow….yet will it ever be centered? Again, think Sandwich Generation!

Again, thank goodness for remote work. While on the train tomorrow, I will have 3 meetings. In fact. one was just moved to it will be taking place while I am on the platform waiting for the train. Should prove interesting!

While I’m home, I will be very focused on self care and being with my family so I will zip in and out without much fanfare. And then late Sunday night, I’ll return to NJ. Honestly, the texts, phone calls, messages, etc have subsided, and that has really been helpful to me. Lots of beautiful emails and videos came in, and I was asked to share with mom. And I did, but reading them and what not was taking its toll on me. I had to go through the emotions with her every time. So, it’ll be good to have a break from that.

We got a beautiful letter from the Executive VP of American Cancer Society. It made me so proud. It spoke of all of her accomplishments and achievements over the past 40 years as a volunteer leader with them. We know we have so much more work to be done with cancer treatment and research, as she’s lying there fighting off ovarian cancer. But I remember a time where she was working on helping eliminate the sale of cigarettes to underage smokers at places like CVS and Walgreens. Now you can’t even buy them in CVS so I truly believe she has helped make a difference.

I was up this morning to give a presentation at 7:30am! So now I’m pooped. Ciao for now.

9/17/21 7pm

I’m not sure I’ll be writing much for a bit, as we’ll have the rest of our family here and I want to focus my energies there. When my writing stops supporting me, I take a break.

I just checked in on mom and she was slightly snoring, so that meant she’s sleeping deeply (I think?) so I was happy about that. My brother is back on this side of the world, and will catch up necessary rest, and drive here tomorrow with my sister-in-law. Ted and Louie are on route. I heard my poor sweet Boo Boo (my term of endearment for Louie) crying in the car, so I’m eager to get him here, running around, again like the kitten he is. I’m sure it is stressful for Ted. I told him to sing to him like I do when Nermal is in the car with me. As I type this, I can picture the kids rolling their eyes!

I’m going to work on my MBA essay tonight and get it done. It’s the last piece of the application. I know it’s crazy but I fear this is my chance to get it done without distractions. I’ve formulated what I plan to write, and reviewed it with my mom – she asked – so I think I know what I’ll write.

We had our Chinese food tonight – so good – and our dear friend brought us more chocolates (thank you, the milk chocolates are heavenly), and another friend is bringing us fresh fish he just caught. I will not go hungry! We share it all with our dear Gertrude, who arrives each evening at 8pm and helps us with mom. She has such a nurturing personality so she’s a welcome comfort to us all. Mom refused her friends today who dropped off the food. She said she didn’t want them to see her as she is. One of these friends has known her for 50+ years. She was very understanding. It’s hard, I have no doubt, for the recipients who want to see her, but are declined, it is hard. But this is mom’s choice.

More later.

9/17/21 Morning

Mom looks much weaker this morning. Her body is clearly shutting down. It’s so sad to watch. I’m trying to be strong for her. Been getting lots of emails, texts, FB messages. Some are more helpful than others. Responding to them is getting harder, as I’m still balancing my work as well, so just know I appreciate the sentiments. Thank you to the folks who are dropping off food. It’s hard to engage everyone so I’m just asking for stuff to be left on the bench next to the door. Saving what little energy I have for my folks.

Ted arrives tonight. I am literally counting down the hours until he arrives. I can hug him and cry all that I need in the privacy of our room. And Louie! That little nugget will give me such joy. Been emailing with my boss and told her that it feels good to be working in healthcare right now – that I feel like I’m making a difference – so it feels good to get in a few hours of work each day. Ok, more than a few hours, but you know what I mean.

Last night, I prepared my mom’s jewelry for her review. She asked me to bring it to her so she can point out “the good stuff.” That is SO Helaine. I like doing it because she tells me stories about the pieces – “you dad got me that for our anniversary” or “Larry and Irene made that one for me. It’s a Tiffany knockoff.” The stories are fun to hear.

And, does my mom have purses or what? Now I know where I get my love of all things leather and Coach. She has shelves upon shelves of gorgeous bags. I told her I packaged a few for myself, and I had some ideas of what to do with the rest. She liked the ideas. Mom has always encouraged me to go “shopping in her closet.” I know a few friends of hers recently came over and took many items to either wear or sell. It makes me happy to see that happening.

Ken and Marina arrive tomorrow after flying home from their trip to France. I’m so glad they did the trip. But, just as much, I’m glad they’ll be here to say their goodbyes. Last night Dad and I briefly acknowledged our time together will shift now as our group of loved ones will grow. It was good to have the time with him. He said, “We get along pretty well, don’t we?” We do. It’s nice to really enjoy the company of your parent.

More later.

9/16/21 eve

Sitting here eating my favorite treat, chocolate chip cookie dough Yasso. There’s something so good about the sweetness of the cookie dough mix with the tartness of the yogurt.

Ask, and you shall receive. our fridge and freezer is fully stocked. This family will not go hungry. We managed to have mom take one of her anti-nausea pills, and that gave her a little more of an appetite. Don’t get too excited, we’re talking three bites of soup instead of two. She really is been enjoying her peach Snapple and tomato bisque soup. Dad went out tonight to friends to break the fast for Yom Kippur.

When he goes out, I stay back with mom. Tonight, I gave her a mini manicure upon her request. She keeps asking to go through her jewelry with me, so I prepared it to review with her tomorrow. She’s been giving me her jewelry repeatedly over the last 3 1/2 years, and I’ve enjoyed wearing it very much. Whatever she needs.

I have a long meeting in the morning, so I plan to take the afternoon, unless work gets busy. I took a break today to get some things for my dad when my phone rang. It was somebody calling to make a donation. You bet I pulled over and had a lengthy conversation this with this wonderful physician. It feels good to be working during this time because it gives me normalcy. I like my job and find a rewarding. The physician that I spoke with today is a leading neurologist who specializes in epilepsy. Very important work. I feel like my job is a blessing right now as I am raising money for the hospital that does incredibly important work.

Well, I took my sleeping pill, so I’m going close my eyes and get some rest. as always, please accept my gratitude for all that is being done for us.

9/16/21 midday

It’s Yom Kippur, and in Judaism, today our fate is sealed for another year. Spent my morning and early afternoon balancing work, caring for my folks, and doing a Target run for more pjs. No clue where mine are at home. Not unpacked yet (we just moved). Got a shirt to wear under a blazer since I’m giving a presentation next week to one of the surgical teams next week. Ted will bring my blazer.

Mom is about the same, resting. When the visiting nurse was here, she confirmed we’re doing all we can.

We have Chinese food coming tomorrow, and two more friends sent me virtual gifts – M sent Dunks (coffee!!!) and A sent door dash, will come in handy. I’m digging into the food that we got yesterday. I stopped fasting years ago. Dad is headed to friends to break the fast; I’ll stay behind. Our aide Gertrude – Such a dear soul – arrives at 8pm.

All for now.

9/15/21 PM

It’s nearly 10pm. This has been the hardest day for me. I don’t want to get into the details, but it was a tough day.

I’ve been reading my blog posts to mom. She always says I’m a great writer. It’s just the easiest way I can express my thoughts. I’ve been also criticized for over sharing here and to that, I say “please, then kindly stop reading” as this is my blog & I can say whatever I want.

As Ted would say, I’m piss & vinegar tonight. I’m a relatively calm person who doesn’t anger easily but today, I’m angry and frustrated at the world. I’m angry that I was not driving fast enough for that a-hole who sped around me while getting on the GSP. I’m angry at the salesperson who picked his nose – both nostrils – and then wanted to ring up my purchase. I’m angry that I didn’t have a clean pj shirt tonight so I’m wearing a work shirt to sleep. But most of all, I’m angry I have to say goodbye.

Some family has questioned if we’ve done enough. I can’t predict the future. I am just a human stumbling through life like the rest of us. I’d like to think we did all we can. Did we? 🤷🏻‍♀️

I zoomed with my family tonight and R yelled at me to come home again and stormed off. I told him I love him and he’s in my heart, and he said, “no I’m not.” I hate to think of him suffering, but he has his mom & dad there to support him.

I’m counting down until Ted & Louie arrive. Ted and I did a virtual tour of our house for dad, and then we picked out things for him to bring me here. New clothes! Fresh pjs!

We had a visit tonight from my very close family friend whose mom died of Ovarian a few years back – she was mom’s closest friend & like a second mom. He brought over tons of food from Delicious Orchards and chocolates from his mom’s favorite candy shop. So lovely. It was so good to see him. And his wife will be bringing lox & bagels tomorrow to Break the Fast (even if I’m not fasting). Thank you dear friends.

And my kind coworker sent me Venmo for a “treat” so I told her I’ll use it at Carvel. Or, maybe I’ll put it towards dinner with Ted.

Ok. Time to turn off the brain & get some sleep. Until tomorrow.

PS woah, 500+ views since yesterday. Hello world.

9/15/21

Dad is reading to mom while I’m working in the dining room. We had a very deep discussion last night about the “afterlife” and we concluded we both want to be greeted by our loved ones no longer with us. So, I’d like to think she’ll be greeted by her parents and brother when she passes.

I had a good session with my therapist today, and we agreed I need access to my cats, who serve as my emotional support animals, so I’ve asked Ted to bring Louie with him. Mom was less than thrilled, but Dad and I convinced her she won’t interact with him. We’ll close her bedroom door, and keep him downstairs. I hope he behaves – he’s a bit of a little rascal! If it doesn’t work, Ted’ll take him home. I hope it works. We all agree Nermal should NOT come here! She’s a very temperamental cat and would not be happy in any way, shape, or form being cooped up anywhere. She rules any roost she resides in, and in this house, mom rules. Ted and I think Nermal is going to be thrilled to have her run of our house!

My therapist also asked me what I need in terms of support. In all honesty watching my mom at the end of her life sucks. I’m so incredibly drained. I don’t sleep through the night, and then I have to get back to work in the AM, while balancing everything here. It’s a tough time in my life. I’m still very sad about cancelling our wedding. Someone said to me, “Well, you’re already married, so this was just the celebration anyhow,” and of course, I wanted to pounce. Way to be insensitive. How dare I want to celebrate getting married? As a result, my interest in interacting with people right now is minimal other than what I have to do (namely work). Fortunately, my colleagues are terrific and supportive. One of them even offered to drive here from MA and support me. She’s such a gem. That’s a good friend! Just the offer was enough. Another friend was ready to send me Venmo to get a meal for us. I told her no, but just that offer was so kind.

We had a delicious dinner last night, sponsored by a friend, so that was enjoyed by Dad and me. Tonight is Erev Yom Kippur, so Dad plans to socialize with his friends. I’m not up to it, so I’ll stay home with mom until our wonderful caregiver, Gertrude, arrives for her night shift. She is truly a blessing to us. My dad expressed his concern that mom hasn’t been interested in welcoming her dear friends to visit. My hunch is that as a caregiver, she can’t provide the counsel or care she likes to give, so she spending her time with her family and reminiscing in her mind.

This morning, she told me about how my brother took ownership of caring for me as soon as I was born. He is still taking care of me 46 years later! My brother and sister-in-law are on a well-needed vacation in France, checking in multiple times a day, and riding bikes for upwards of 20 miles a day. They were in Paris previously, and will be home over the weekend. Their plan is to head to NJ shortly thereafter. We all agreed that there was no need for them to return early. “No regrets” – we’ve all agreed. I’m glad they are enjoying the French countryside and it has inspired me to begin planning our honeymoon with Ted. No surprise, but Italy is in our future!

Dad and I are discussing plans for when mom passes. He is concerned about showing his grief. I told him that the only thing that people will say is that he is human. I have no idea if I can keep it together. I was thinking of writing a eulogy now and reading to my mom for her input. She’s totally the type of person who would be ok with it. It’s like someone writing their own obit in a way. She’s been reading the obits her whole adult life – one of those people – so no doubt she has thought about her own.

Clearly lots of thoughts swirling around in my head. Many more but I have a meeting now so I must go. More later!

Sandwiches

I’m a fan. In fact, I had a delicious grilled cheese on thick fresh bread with boars head cheddar for lunch. Yum, with a Coke Zero on the side. Delish.

However, I am not a fan of being part of the Sandwich Generation. You know what that is – middled aged adults caring for kids & parents concurrently. Now that I’m a stepmom, I have a 2 kids counting on me. Granted, I’m not their biological parent, but trust me, I’m a parent. While the kids were walking home today from school, they called me. J told me about his day while R shouted in the background, “When are you coming home?”

And whimpered. It broke my heart. I told him that my parents needed me right now but I’d be home soon.

“When?” He asked.

“I don’t know yet, buddy. Why don’t we FaceTime tomorrow & you can show me how much Louie has grown?”

“Just come home.”

I texted Ted and asked him to check in on R. Tonight us “back to school night” so he (and the kids) would also see the kids’ mom, who is their other calming force.

I think I’ve described myself as feeling like that Stretch Armstrong toy from the 1970s where you could pull his arms, legs, and torso in all directions. Pretty sure my brother had one. Anyhow, you know what I mean.

I planned to take 1/2 day today from work, but somehow, at 4pm, I was still sitting in front of my laptop. I’m preparing for a big presentation next week (at 7:30am – yikes!) and planning my goals for FY22. I looked into PFMLA and sadly, I can’t afford to cut my pay that much. It’s not easy.

Did I mention I was also sick last night? 3.5 years ago I had gastric sleeve & on occasion, I still have side effects from it. No doubt the stress exacerbated it. I went to grab my Ativan today at CVS & the staff there bit my head off because I had come before I was notified it was ready. I had requested the refill yesterday. So, I left without it, afraid to return there. I asked my dad to pick it up for me. Way to go, CVS! Side note: never got any notification whether it’s ready or not. 🤷🏻‍♀️. Clearly I need it! 🥰

Anyhoooo. Time for some “The Other Two” on HBO max. Who else watches this brilliant show?

9/14/21 Update

Wow, thank you for all of the responses to yesterday’s post. I guess this is the best platform to get out the word to family & friends, so alas, here I am again. Let’s just say this family won’t go hungry as mom and dad’s friends are providing dinner for us the rest of the week – thank you! And a few people have texted about what they can do, send, etc. I talked about it with my folks and we agreed upon:

  1. Soups – namely for mom, but dad and I’ll probably eat them too! Mom likes tomato bisque, squash/pumpkin, easy to swallow.
  2. Snack foods – for dad, me, and our caregivers
  3. fruits/veggies – always welcome for dad, me, and our caregivers
  4. Food we can eat for dinner – again, for the caregivers and us

Again, please do not feel like you have to send us anything. This is only for those of you who want to. If you don’t, it’s totally ok!

It feels totally weird to tell people what to do for us. But I figured I might as well be honest and take some of the meal prep burden off of us. The other thing I’ll mention is that it’s hard on me when people say, “Let me know what I can do.” It puts the ownership on me to come up with something. As I always say, “Just do.” I’m sure whatever you choose to do will be appreciated. And again, it’s ok if you don’t “do.” Everyone has a lot going on right now with Covid, return to school, Jewish holidays, etc so it’s ok not to “do.” You can send a plant, flowers, a card, a singing telegram. We don’t have any preference. We do enjoy chocolate too. Just saying 😛

Dad is reading your cards and emails to mom. I’m sharing regards that you pass along. Again, mom is requesting very adamantly that we have no visitors and she’s not up for phone calls. This is her choice, and we respect it. I am not making an decisions for her. I ask her what she wants, and she tells me firmly, and I follow what she wants.

People often refer to me as “the rock.” It’s a blessing and a curse, because I’m a very sensitive and emotional being. So I asked Ted to come here this weekend so I have my “rock.” I imagine I’ll be here in NJ for a while.

I’m working 1/2 days this week, which helps, and I’m listening to classical music while lighting nice smelling candles, so that’s how I’m taking care of myself.

This has been a surreal 3.5 years. It really has.

9/13/21 Update

I feel like I’m juggling an unlimited set of balls in the air right now. I’m in New Jersey, helping care for my mom and support my dad, while working remotely during the end of our fiscal year (for fundraisers of nonprofits, you get me here), and missing my husband, kids, and cats. Oh, and I did I mention that when the home health aide supervisor came over to bring us the paperwork, she had Covid but didn’t know it yet. Luckily she had on a mask and we’re vaxxed, but we had to get tested and wait for our results so we couldn’t leave the house. At 6am, this morning I received two emails that both read “negative” and I leaped out of bed to tell my dad the good news.

How do you factor in self care when caring for others? Thank goodness, I am good at knowing what I need to keep myself strong when others depend on me. I googled to see where the closest paint your own pottery place is here. There is one in my parent’s town so I may do that for a break one day. And I don’t have my beading with me – another de-stressor – so I will probably run over to JoAnns to get some crafty thing to do while I’m here. Maybe I’ll try Crochet? It’s hard because I am always looking for left-handed tutorials.

Mom has declined visitors and phone calls right now. Many people have been pushing to speak with her, but she keeps telling me no. As someone who never lets on that she’s in pain, I think she’s in pain and she’s very uncomfortable. Her insides are all twisted, and she has declined most food and drink. She’s “snapped out of it” before but I don’t know if that will happen this time. Everyone keeps asking me for reassurance so I have been not talking on the phone to anyone either because I just can’t be the optimist they want me to be. I can’t stand seeing her suffer like this. I’m turning off comments because this post is a place for me to express myself.

I was just talking to a member of the clergy who is a spiritual advisor for my mom (and me). She told me I’m so incredibly strong and I’m there for everyone. I told her I wish I could be doing more for my job right now – she said, “What, are you doing the work of 7 people now instead of 10?” I guess I’m not used to doing the work of one person. I’m used to being overworked and under appreciated. Here, in this job, I have one job and feel appreciated enough.

I’m grateful that Ted is holding down the fort back home. We have the kids this week, so he’s doing the dad thing and also taking care of our cats – Nermal and our newest addition, Louie! Plus there’s the whole new house, unpacking thing.

Oh, and I did I mention we had to cancel our wedding #2? There was one email that came to us that had some reference to the invited guest being disappointed because she had “so been looking forward to it” and for some reason, I felt so much anger towards this women I don’t even know. Gee, I’m sorry I ruined your plans. I’m sure she meant absolutely no harm but one’s anger comes out in mysterious ways. She doesn’t subscribe to this blog so don’t worry – it’s not you!

As a people pleaser, I’m used to trying to make everyone happy. Now, I’m focused on my folks, and with all do respect to the world at large, I can’t make everyone happy, so now I focus on my folks and leave it at that. Mom doesn’t want to talk to anyone and I need to respect that. I am sure there are people on the receiving end who are upset or pissed or wonder why they aren’t the exception. I even had to turn down my cousin and his daughter for a call because she said, “no.” So please don’t take it personally – it isn’t personal – it’s just her choice and I have to respect her wishes. My dad is very run down and its taking its toll on him too.

What help could we use?

  1. Understand if we don’t respond to calls or texts right away. It’s hard. Plus I’m working so I am trying to juggle caring for them and working. It is not personal.
  2. We’re happy to accept food but not visitors (covid). Making meals is a nuisance as I am not a fan of cooking and dad is tired. But do not feel you need to do this.
  3. Dad is slowly making phone calls so if you leave a message, he will get back to you.
  4. We are listening to the experts – the surgeons, oncologists, nurses, and other doctors – so while we appreciate your ideas, please understand that one person ultimately makes the decisions about her body – that is mom – and I’m not going to push her to do anything.

It’s so wonderful to know how loved my mom is. I am so grateful that at the end of her life, she is surrounded by so many wonderful people who love her so much. She is in ok spirits and told me she has no regrets, and has had a great life. She is so comforted by the fact that I’m married to such a wonderful man, that we have a new (very old) house, and two rambunctious ‘tweens that we adore. And Ken has a solid marriage and life with Masha, all good. We have plans for my dad, and he will be well taken care of in life.

So at this point my greatest wish is for mom to be comfortable. I’ll deal with my thoughts on Ovarian Cancer at a later date but let me tell you – fundraising for a hospital is more important to me than ever. Thanks for reading and for your prayers.

All the news that’s fit to blog.

It’s 8/24/21. Lots of life updates.

New Home:

We moved into our house a little over a week ago, and we’re settling in, very slowly. Our house is from 1870 so there isn’t a ton of storage space, so I’m frantically trying to find places for all of my shoes, bags, and clothes. I’ve already packed up a big bag to sell/donate but it barely made a dent! Ted is busy building furniture – desks for the kids and my home office, dressers, chairs, you name it. He purchased a lawn mower and power tools. It’s official – we’re a middle aged couple with a big old house.

Once we’re settled in, this will be a great house. It’s just overwhelming right now, but I am hopeful we’ll see a light at the end of the tunnel.

Interestingly, I went for a massage this morning, and I had to explain that all of the bruises on my body were from moving. The massage therapist said that it was good that I told her, or she would have had to have reported what she saw! I told her the culprit was two cats and many moving boxes!

Nermal and Louie:

We adopted a new kitten a few weeks before we moved, so we’re a household of 6 now. Nermal is as cranky as ever, and she puts up with Louie, though she’s pissed at the world, namely because she can’t go outside. She escaped for a few hours the day after we moved in, and eventually, we coaxed her out with the promise of treats and dinner. Louie is lively, loveable, and has very sharp claws, so I have scrapes and nicks all over my arms, legs, torso, face, you name it. But he is incredibly sweet and we’re happy to have him as part of our dysfunctional family.

Wedding:

We’re still having one in October so on top of everything else, we’re planning a wedding. Yep.

Mom & Dad are moving to MA:

My folks are working on packing and purging in prep for a move to an independent living facility in MA. It’s a lot on their plate but a relief for those of us who love and care for them. It will help out my dad, and we’ll move mom’s oncology care to the hospital where I work. It’s a Harvard teaching hospital so it’s full of very capable and highly intelligent physicians and colleagues (ahem…. 🙂 )

Stress:

Mine is pretty elevated these days (hence the massage). We took off last week to move and it was anything but relaxing. I admit I am desperate for a real vacation where I can sit and do nothing. But it’s not in the cards right now. So, I’m trying to plan some self care into my daily routine – massages, manicures, etc. If you have any ideas, let me know!

That’s all for now!

…With 2 Cats in the yard….

Our house is a very, very, very fine house
With two cats in the yard
Life used to be so hard
Now everything is easy ’cause of you

– Crosby, Stills, Nash, and Young

Ah, paints a lovely picture, doesn’t it?

Let me tell you something. It’s not that easy! I have one adult cat who hisses at our little kitten every time she sees him! I told my mom that I can understand what it’s like to have two children, and feel a bit stressed when the second one came along!

At the same time, I’m trying to navigate a very challenging job, acclimate to being a wife and stepmother, and close on a house. There is other news going on but it’s not mine to share so I’ll leave it for another blog post.

Our new kitten Louie is wonderfully active but I will tell you that there are a lot of scratches all over my body! When I bring him to the vet, will need to trim those nails so I don’t have to buy out the Neosporin at the local CVS.

This is not the picture I’ve been painting on Facebook, now is it? The truth is that I am exhausted. I am also trying to keep my plants alive… Did I mention that?

But in all seriousness, once we get over this hump, I’m going to be settling in with my wonderful husband, very sweet step kids, and adorable cats into an old house that’s situated on the lake. I really can’t complain about that. I am so incredibly grateful to have such a wonderful caring husband that I love with all of my heart.

Oh did I mention that I’m also planning the wedding with him? Good thing we have a wonderful organized event planner!

Meet Louie!

That which we call a rose by any other name would smell as sweet…

I changed my last name. I took my husband’s last name at the age of 46. Why? I joke because I want to be “Italian” since his last name is Italian…well, Sicilian if you want to be technical. But, it is one of those things that just felt like it mattered to me. We discussed it way before we got engaged, and I had time to think about it, and I realized I wanted to take his last name, and keep my maiden name as my middle name. So, I dropped the “Lee.”

It’s not easy to change your name, but it is even harder to change your middle name. Here in Massachusetts, I have to petition the court to change my middle name. It wasn’t THAT hard to change my last name – just a lot of paperwork and money exchanged – but to change my middle name, I have to ask the local court. And, the local court is still closed due to Covid, so I have to figure all this stuff out via the interwebs and google and sending smoke signals. It is not easy.

And, I had no idea I had to do this until I went to get my new driver’s license and the unfriendly, snarky woman at the counter told me I had to petition the court. Go figure. Combined with the women who greeted me, declaring, “I told my daughter to never change her name because of a man,” I tried really hard not to question my decision.

So, my new social security card has my new name on it. But, it isn’t recognized by the state I live in, so the country I live in allows me to embrace my new initials “JRB,” but to MA, I’m still just old “JLB.” My old name is a distant memory. But wait? My new license has my full new name. I’m so confused.

It is the whole concept of rules for rule’s sake. We want a tiny portion of control over your freedom.

Let’s probe deeper beyond this superficial stuff, though. Imagine changing your name at 46? It’s been my identity my whole life. And then it’s just different. It feels like a bit of betrayal to my folks. Hey, I’ve been your daughter by name my whole life, but now, I belong to someone else. It’s a bit archaic, right? But the good news is that I made this decision (along with Ted). I could have kept my last name as it was, and left it at that. But, I wanted the same last name as Ted. It was a choice – barbaric or not – it was my choice.

Anyhow, I’ll keep you posted on how that visit to court goes!