11/29/21

Just laid on my bed, grabbed my phone, and instinctually went to call mom to discuss my day. So there’s that.

I’m debating now whether I want to do the MBA right now. I am on the fence since I have so much going on right now. At the same time, I know I’d enjoy it. I’m speaking with the program director tomorrow to discuss.

I had my performance review today. Pretty much keep doing what I’m doing. We’ve had to put a lot of my work on hold due to COVID and now staffing shortages = overworked medical teams = not a good time to ask them for money. So I’m focused on alumni engagement & I am set to close a $2 million gift this year from an alum so that’ll get me to my goal.

Dad came over for dinner yesterday & saw our “work in progress” aka house. He had vertigo and is clearly in mourning over losing mom, so there’s that. It’s tough no matter how you slice it. Our family has a mom-sized hole.

I got a new laptop so I was setting that up tonight. It’s perfect for what I need for school and non-work stuff (like YouTube!). I did my first Instagram live tonight after a hiatus & it was fun. It’s a good escape.

I’m trying to get my body back on track after basically neglecting it for months & eating crap, as I sit here eating a cookie. Been taking my vitamins so I’m hoping my iron & thiamin are normalizing again. I’m also going to see a gynecological oncologist from where I work so I can get some advice on preventative care. Good times. Three of my dear friends – plus my cousin & aunt – all had breast cancer so it’s no joke. Plus, mom was stage 4 ovarian when hers was discovered.

That’s about it. Ciao!

11/23/21

Well, the bereavement support group was a bust. It was too painful to hear other people’s stories and the facilitator wasn’t my cup of tea. So, I’ll stick with my individual therapy for now.

It’s been a really tough week with the kids. They don’t understand that my workday doesn’t end when they get home from school, and that I can’t provide them with attention at that time. I have had a tension headache for days and I’m literally going to burst. I have no where to go to be alone, and if I try, I get scolded by them for “avoiding them.” I’m suffering greatly and have no place to go & grieve. I’m not sure how long I can go through this. (Please, don’t text me or email with solutions. I’m not asking for them. This is simply my place to vent. I’m not soliciting advice right now.)

I miss my mom terribly. I can’t look at a photo of her without tears coming to my eyes. It’s too painful. She was the person I’d solicit advice from, so I’m trying to channel her voice as I navigate all of the changes in my life. Everyone keeps telling me not to avoid “feeling” but I have no place to privately “feel.” In the support group tonight I was encouraged to start telling people “no, I’m not available to support you now. I need to take care of myself.” It’s hard. Whenever I try to take care of myself, I’m criticized for “taking on too much.”

My solace right now are our the cats – Louie & Nermal. Louie is curled up next to my leg right now as I type. Nermal is probably pacing in our living room, looking for mice. They are my comfort & joy.

I was talking to our big boss today and he was asking me how I’m doing. I told him that even though we all go through this – losing a parent – it is a very lonely experience as we all mourn differently. I look at the world through a new lens now.

I reconnected with an old friend today, which was excellent. I am so grateful to know him & to reconnect after all of these years. So there’s today’s positive. Good night 🌙💤

11/22/21

It is so dark outside and it’s 5:05pm! I hate daylight savings. I think I wrote that the other day, and I’m sure I’ll say it again. It’s dark and dreary. I just want to curl up on the couch. Technically, it’s after 5 so I can but the kids are home. Speaking of, we’re surprising them with a trip to Orlando for Christmas (we’re going in Feb), so I’m busy working on that. So far we have the Universal stuff booked. Next I need to do Disney and flights. They are going to be so excited! I’m excited because I booked a suite that has a separate room for Ted and me. A little privacy will go along way with me! We’ll have a good time!

It’s Thanksgiving week so I’m excited that it is a short week. I took off Thursday and Friday; because I work at a hospital, we have to take off for all holidays in order for there to be equity amongst all staff. It’s my least favorite part of the job, but it’s not the end of the world. There are so many other benefits to my job, so I have to think of it holistically. I think I also mentioned previously that I applied for an MBA program through my job, and I was accepted. I just found out I have to take Calculus…which I took previously, so I am hoping I can place out of it, but….who knows? I will dread that class!

I’m also joining a Board in January where I’ve previously been an Advisory Board member. So that’ll take up a bunch of time, but I like keeping busy and keeping my brain active.

Not much else to say. I’m cooking dinner tonight, which is a novelty because Ted usually cooks. I’m making Nanny’s Chicken (for those of you who know it, I salute you). It’s an homage to Mom and Nanny, who are both now in my heart and memory.

Wishing you all a very happy Thanksgiving!

11/19/21

It’s 4:46pm and it’s so dark outside. By 6pm, it will feel like midnight and I’ll likely want to bundle up in layers and snuggle under my blankets. I guess there is no reason not to other than it’s our week with the kids so I may need to do some parenty things.

I don’t even know where to begin. I’m back home, back in my life, but my life has forever changed. There is a general malaise hanging over me, like I should be doing something else at all times, and I shouldn’t just be living my life again. One day mom was there and then she wasn’t. When I try to envision her being gone, the pain is too unbearable and I tear up. We were so consumed with “will she? won’t she?” today and now it is just “she’s gone.” It’s painful to look at her photos and I haven’t been able to go through her things. I understand so deeply now why mom couldn’t wear her mother’s jewelry or go through her stuff. I am ok with wearing her jewelry, but other stuff, it’s hard.

The sadness comes and goes. It’s not omnipresent, though it’s still there. I got emotional on a call with a colleague today, which is ok, but not great. All she did was ask how I was doing.

I’m in a relatively new surrounding (my house) that I still don’t feel connected to deeply yet. There are still piles of stuff and we’re slowly making our way through it, but I don’t feel at home yet. Sometimes I just want to run and hide, but there’s nowhere to run. My instinct is to pick up the phone to call my mom, and I can’t. What do you do when the person who talked you off the ledge is gone? Yes, I am fortunate to have my wonderful Ted, but there is 46 years of history that my mom knew, so I’m still getting him up to speed.

I’m starting a bereavement support group next Tuesday, and I am so relieved that I’ll have a place to talk, listen, and learn. This is all new territory for me. In the past when I’ve been depressed, I can just curl up and hide. I can’t do that now. I’ll get scolded by the kids for being absent or I’ll have to do chores, so I am trying to handle my sadness while going through the motions of life. It’s hard to fake joy right now, but I’m doing my best.

You know what’s funny? I miss seeing my dad every day. We went through something so beautiful and tragic together, and now we’re apart. We talk on the phone, and I’ll see him on Sunday, but as he said to me yesterday, we’re all still terribly grieving. And we will for a long time, I think.

I’m going to continue to try to pick up the pieces; namely the pieces of me, which feel feel pretty cracked and needing some sort of emergency crazy glue to keep me together. I was told that grief can feel very isolating, and damnit, it really does. My grief is different than others in that I lost my mom. The only person who truly can relate is my brother and my sister-in-law, as she was close to mom too. So many of you have reached out to me – and it really does help – so don’t stop but remember I may not get back to you right away, but don’t take it personally. It usually isn’t, especially if you don’t make it about you.

P.S. A very happy birthday to my dear A!

11/11/21

There must be something symbolic in deactivating a deceased person’s Facebook account. Not sure what it is, but since my mom’s account was hacked, it is forcing the issue sooner than later. Thank goodness I kept mom’s phone so I can take care of these random things. I’ve submitted a request to “memorialize” her account. Thought that sounded like the most respectful option.

It’s Thursday, and I’ve been back at work since Monday. It’s taken me a few days to get back into the swing of things. I’m working on getting my home office finished, or as I like to think of it, my “oasis,” as soon it will also have a couch and tv set up for “me time.” It’s hard to adjust to all of the tumult at my house.

Thank you to all who have been reaching out to us. I’m finding it very hard to talk nostalgically about my mom or look at photos of her right now, so please understand if I don’t get back to you right away. It still feels very raw and at a moment’s notice, I can burst into tears and then be fine again a few minutes later. It’s not super fabulous if it happens during the work day, Fortunately, if it is during the evening, Ted will give me a hug and that helps.

My dad has moved here to the Boston area, so we’ve been busy getting him settled in. He is about 25 minutes away from me, without traffic, which is pretty much never. But he lives near two good Whole Foods and my favorite TJ Maxx so traffic, schmaffic! He’s getting his furniture deliveries on Friday and Monday, so that’ll help get him settled in. There will also be a series of items coming to my house, such as the sofa and a few tables, plus many boxes of items for us to go through at some point but will land in my basement for the time being. Photo albums, my parent’s china, etc will be nestled somewhere in our basement. Speaking of our basement, did I ever write here that there are remnants of a fire on the beams in the basement from the 1920s from a still that was hidden in there during Prohibition?

Ok back to work.

Mom’s eulogy 10/31/21

When I asked mom what she wanted me to say in her eulogy, she said to stress that she had “no regrets” and she encouraged us to celebrate her life. “I lived a great life, Jo” she told me. So today, I ask you to share in celebrating Helaine and her courage, compassion, love, and strength. My mother was the strongest woman I’ve known. In some ways, there was an invisible line dividing mom’s life before and after her cancer diagnosis in 2018, but in truth, she was very much her authentic self regardless of her own health. My mother was known for providing support to others, and she continued to do this, even while undergoing chemotherapy or recovering from major surgery.

I was amazed that despite her own turmoil, she was still able to sit on the phone for hours on end, and administer her wisdom, offering words of support and strength to others. “Where does she find this inner strength? I used to wonder. Since mom had been a hospice social worker, she was well versed in handling conversations about the end of life. When I needed help addressing something related to her health, I would say, “Mom, what would YOU tell you?” And then I was the one on the receiving end of her wisdom.

There are two particular Helaine-isms I’ve been carrying around for years. First, my mom used to always say to me, “Always tell the truth. You can never go wrong with being honest.” She was right. The other thing she used to say, “You can’t control anyone else’s actions; you can only control your own.” That piece of wisdom has served me so well in life, especially in the workplace. She encouraged me to not sweat the small stuff, and I’m still working on that one.

Besides giving advice, mom was also extremely passionate about music. Mom may not have been able to carry a tune, but she loved to belt out a song, especially in this very sanctuary. I used to make faces at her when she’d sing along here. I can still picture the tears in her eyes when she’d hear Rabbi Pearlman and Cantor Grissold sing. Mom brought Ken and me to Broadway plays and musicals as soon as we could sit still in our seats. We have memories seeing They’re Playing Our Song, Annie, Phantom, Miss Saigon, Anything Goes, Rent. We had a chance to see Barbra Streisand – her favorite –  together a few years ago. She reminded me that she had seen Barbara perform opening night for Drat the Cat in 1965, and it proceeded to close the next day. When she loved something or someone, she gave it her all.

Speaking of loving with her “all”, let’s take a minute to look at Helaine and Don together. They were wonderful role models to Ken and me, celebrating their 52th wedding anniversary this past June. In 2019, my parents renewed their vows in front of their closest family and friends, which was an incredible experience to witness. As Ken, Marina, Kirill, and I held the Chuppah poles, I saw my now husband, Ted, and felt such a sense of pride and peace at the family we had all become. 2 years later, this past May, Ted and I got married in my parent’s living room. Mom was too weak to join us downstairs, so we set her up with her iPad and she watched us from the comfort of her own bed. I can’t put into words the significance of that moment – my mom got to see me get married to the love of my life. We will all cherish that for the rest of our lives.

Mom had an incredible thirst for knowledge, which manifested through her love of travel and devouring the latest best seller from the NY Times Book List. She would sit with her cup of coffee every morning and read the newspaper from cover to cover. But let’s be honest. Her favorite section was Modern Love. She loved a good love story, and was always scouring the paper for the most romantic or unique love story. She would weep over The Way We Were and when we saw Beaches together. And did she love reviewing the Style Section on Sundays! She was always up on the latest trends and her closet – packed to the brim – was filled with the most stylish items. “Jo, do you want to do a shopping trip to NY?” and off we’d go, visiting our favorite floors of Sacks and Bloomies, concluding with a chardonnay and chatter at the Café, complimenting each other repeatedly on the beautiful makeovers we just had at Henry Bendels. I can still picture us coming in with all of the packages and putting on a fashion show for Ken and dad.

As I look around the sanctuary, I know every single person here has their own personal memories and shared experiences with my mother. She knew just how to make you feel like you were the only person in the room, and her complete focus was on you. She listened, she observed, and she cared. My dad recently asked mom what was it about her, what magic did she possess to get so many people to divulge their deepest secrets to her? She smiled and pointed, saying “The face.” And she gave him a giant toothy grin. We’ll all cherish that smile, and of course, that face.

Barbra sang beautifully these words in The Way We Were. I encourage you to all sing along in your minds.

Memories
Light the corners of my mind
Misty watercolor memories
Of the way we were

Scattered pictures
Of the smiles we left behind
For the way we were

Love you always.

And so it goes.

Mom has been put to rest. We paid our respects at Shiva. And now we go on.

I go through periods of sadness, then relief, then guilt for the relief, and back to sadness. Having Ted & Louie (kitty) has been incredibly helpful. Thank you to all of my dear friends who have been reaching out and to those who made the journey to NJ, I am grateful always.

My colleagues sent me a beautiful wrap with a note that they were sending me a “warm hug.” I will cherish it.

We’ve had a chance to see so many friends of mom and lives that were touched by her kindness and compassion. I told one of her fellow volunteers from the American Cancer Society that I want to continue the work she was doing and said she, “big shoes to fill.” I was later telling some close friends & family what she said and I said, “oh, but she doesn’t know me! MY shoes are also big to fill!” I meant it not as a bragging moment but more so that when I put my mind to something, I give it my everything…and then some.

I want to give a special shout out to T for two reasons. One, because I know she’ll appreciate the shout out. And two, for commenting on my attention to detail because I take pride in that (and sometimes I forget not everyone is like that). Thanks for the support, friend (and to my dear A too).

See you on the flip side. ❤️

And just like that…

Mom has passed on. The flurry of texts & calls have momentarily subsided, and I’m processing. Dad and I hugged each other and we agreed we did our best to support her through these last few weeks.

I’m crying, I’m sad, I’m up & down. The funeral home just picked her up, and the guy was Israeli. I looked at that as a positive sign.

My friend just gave me some sound advice – people will say stupid things to me now & at the shiva because they don’t know what to say. It’s already happening. I’m not one to hold grudges so I’ll be forgiving of stupid comments unless they’re beyond the scope of forgiveness.

I’m grieving in a completely new way now. I have only memories now of mom. I will cherish them. But I’m overwhelmed. So please be gentle and patient with me now as I grieve this unbearable loss.

10/28/21

Our nurse Peggy said “today, tonight.” Bags are being packed, and we wait. When Peggy called in the morning to check in, I said, “Peggy, she’s sill breathing” with genuine shock. But then again, I’m not. #Strength

I showered, put on real clothes, and took a stroll around the Grove today, a local outdoor mall. I wandered in and out of the stores I used to frequent with mom – Anthropologie, Chicos, Talbots – and channeled my endorphins. It was good to get fresh air and walk a bit. Sitting around the house can become absolutely excruciating. I offered for Dad to join me, but he wanted to stay here.

I’m processing the lessons I’m learning while here. I talked through many of them with Peggy today and told her that people keep telling me how strong I am, but I don’t feel it. I’m just doing what feels like what I should be doing. I told Ted the only thing bugging me is when people criticize me or say stupid things. There have been a few of those as of late, but chalk it up to human behavior and try to let it roll off my back. Not easy for me to do, but as I’ve been saying, a moment of telling someone off will only end up causing a rift in relationships, so I bite my tongue.

There have been a few shining stars coming through the clouds for me, and those are the people I choose to confide in. They don’t make any of this about them. Thank you. You know who you are, and if you don’t, I will be sure to tell you when the dust settles.

I continue to mull my eulogy in my head. I am going to try to write it today. I put on my headphones, and I’m blasting Hamilton in my ears. I am going to treat myself to a viewing of the movie when I return home. Ted and I bought a giant TV when we were in our rental, so it’ll be fun to watch it there.

I haven’t written about this, but I’m on leave from work now. I initiated it on Monday, so I’m off until at least November 8th with the option of taking more time as needed. We know we need to stay with Dad until he moves to MA. The lease is signed and he has paid for 2 months, so we can move him in as of November 1, which clearly won’t be happening, but the place will be ours very soon.

My comfort comes from Ted and Louie coming once mom passes. Ted can take a week of bereavement. I already bought litter and food for Louie aka Boo Boo, so I will set it up in anticipation of his arrival.

FYI we will be doing a funeral service at my parent’s synagogue followed by a burial at the Jewish cemetery where my family is buried. So far, we plan to do Shiva services, once after the funeral and the day after. The service will be streamed online, so if you can’t attend, you can watch from home. I’m glad to know we have this option for friends and family who are far or who can’t travel. I told my brother that the only person I expect to be here is Ted. I think this is self-preservation so I don’t feel disappointed if someone doesn’t attend. People react in all sorts of ways when someone passes away, and I can’t predict who will come to the plate. If you can’t attend, we understand.

10/27/21

Today has been amongst the worst of them all. She’s yelling out to us, and we’re helpless to do anything. The nurses have been checking on her and they, too, say we’re doing all we can. But when I can hear her call out through a closed door and a TV playing, while talking to Ted, it’s really unsettling.

So many things floating around in my head. The hospice nurse asked us to call the funeral home today. I did. They told me to call back after she’s gone. Pop that one into the old noggin of stuff you aren’t excited to have to do again!

I keep thinking she’s yelling “Jo.” She may very well be. It’s hard to know. She does keep yelling “Help!” and that sucks. I’ve asked her what help I can provide. I grab her very cold hand, and tell her it is ok to go. Her breathing is so shallow and then she gasps like with sleep apnea. For those of you who continue to read this, God speed, as I can only think your imaginations are going rampant. But we are assured she’s restful and comfortable. There is a part of me who keeps hoping that somewhere, my nanny – her mom – is waiting with an outstretched arm, holding out her hand. It’s the only way I can get through this.

I can’t respond to texts except from Ted at this point. I can’t make small talk and I can’t send any more emoticons. I will rejoin all of you living, breathing souls soon, and with no hesitation, they’ll be full of hearts, rainbows, and flowers. The only only thing that calms me down are photos of the cats, which I’ve been getting all day from Ted & the kids because they’re home from work/school due to the storm in MA. I think we had a storm here too today? I have no clue. I’m in my own little Dad/Mom/Jo bubble right now.

We just ordered sushi from one of our favorite local places – my treat, this time. Our wonderful local friends have been so generous with the food – we do not want to be schnorrers (google it).

I want to keep writing as it is cathartic but I don’t have much more to write. I keep trying to work on another closet today but I’m just too darn tired. I went to the doctor while I was home, and got blood tests, and it turns out I’m iron and thiamine deficient from my bariatric surgery. So I’m busy popping vitamins and hoping for the best.

That’s all for now.

10/26/21

Dad and I are here, alone now, without caregivers. There’s really no more support that is needed other than administering medications to keep mom comfortable, so we’re taking turns doing it. I said my goodbye to her. I am convinced she doesn’t want us to see her go, so I’ve been encouraging my dad to leave her be. As my grandmother Ruth used to say in Yiddish, “Let it be.”

The hospice nurses are astonished that mom is still here. Told you, strongest woman I know. I modified that to include “woman” because I told my dad he is the strongest man I know. He is so much stronger than he gives himself credit for.

I just wrote mom’s obituary. Short and sweet. I left the date of death blank. I know, it seems totally morbid, but I wanted to do it while my mind was clear. I still haven’t written the eulogy, but I’ve been running ideas around in my mind.

My sweet stepson J called me twice today to tell me how sad he is about my mom. He has the biggest heart. He is stressed about being called out of school when mom passes on. Today he said to me, “I just want our family back.” He then asked if we could have sushi when I return. 1,000 times yes, my sweet J. R is like his dad – he internalizes things, and processes differently. I will make sure to spend some time with him alone so he can sort out his feelings too. Maybe some more pottery painting….

It’s peaceful here now. I can hear mom’s breaths from the other room. They are slow and loud. It is sound I don’t think I’ll ever get out of my head. This whole experience has changed all of us forever. It feels like I haven’t been home in years.

I cleaned out two of mom’s closets today. I found some amazing things that I will keep and cherish, including a dark green leather swing coat from Italy – it even has her name sewn onto the label. She has the most beautiful clothes, and I found some great barely worn shoes to add to my collection (I can hear Ted sighing now at the sight of more shoes!).

We’re working on a bottle of red wine together. I’m drinking out of a Dollar Tree “Bachelorette Bash” cup that gives me tremendous joy whenever I use it. I’m so glad we moved the wedding.

Ok, those are today’s thoughts. It won’t be long now.

10/25/21

I have started and stopped about 3 posts in last 24 hours but I’ve been caring for mom, and they get interrupted. She’s asleep now after a very agitated morning.

This is truly the hardest thing we’ve gone through. Through some miracle, she is still with us. She is sometimes calm, sometimes vocal. Last night she screamed, “come in!!” like she heard the doorbell. Shouted it for a second time. And then the phone rang, and she said, “jo, would you get that?” Incredibly surreal.

I brought my work computer in here but I can’t focus on it nor have time to do it. I’ve been composing a message to HR in my head about the need for supports for staff during a time like this. Thank goodness for my boss who has been truly terrific to me.

I glanced at Facebook and everything on there feels so insignificant right now.

Just gave mom her morphine. And put some concoction on her wrist to help her rest.

Spending this time with her is agonizing, grueling, yet also beautiful. We all agree it will take us a long time to recover from this experience. We’re forever changed.

Dad just came by. He is wearing this funny little fluorescent hunting (?) hat – fyi he doesn’t hunt – but it looks nice & cozy. Ted left behind his hoodie for me which I’ve been snuggling up in to feel close to him.

I know everyone is thinking of mom & praying for her. I’m sure I’ll come out of this with lessons learned but I’m too exhausted to think of them now. It’s too hard to talk on phone & make small talk right now. As I say to Ted: no superfluous information. 😊 I’m excited to get my life back soon.

Still the strongest

“Mom, did you just tell me to f%^k off?”

She nodded yes.

I’m sitting with my mom in her room and all of a sudden, she pulled off her covers and started moving her legs to get out of bed. She wanted to use the bathroom and wanted to walk to it. I calmly reminded her that she hasn’t been out of bed in several months and she could just go ahead, and let nature take its course.

She told me to stop telling her what to do and that she is “still in charge.” Literally, she is until the end. I summoned my dad and together, we settled her down.

“When is her next round of morphine?” I asked him.

This story is so “my mom.” Still telling me what to do. I saw a glimpse of my grandfather George in her – feisty, tough, and yet, so loveable.

She pulled down the sheet and I can see her – still! – perfectly manicured toes.

That’s also my mom.

Throughout this experience, I’ve been her beautician – taking off her polish on her fingers – cutting her nails. Just today she mumbled and pointed at her fingers, and I knew – the edges of her nails needed to be filed.

TBH the nurses told us 2-5 days yesterday. Who knows? As my dad said, mom’s in charge.

“For 46 years, Dad!” I responded.

He looked at me. I said, “Ok, clearly longer but I’ve only been here for that long”

My mother is, by far, the strongest person I’ve ever known.

We’re all together now as a family – just waiting on Ted to arrive tomorrow. I haven’t been responding to texts or emails because it’s too draining. Just know we know you’re thinking of us.

Heading back to nj tomorrow

Dear friends and family,

The end is near for my dear sweet mom. I am writing this last post now and will likely not write again “publicly” here as it is too difficult for me. I am heading back to NJ tomorrow and will remain there until mom passes, which hospice believes will be soon. At this time, it is too difficult for any of us to read your dear and thoughtful texts and emails to her, but that doesn’t mean you’re all in her heart. And if you feel the need to send something anyhow, that is totally ok. Just know it may just be read by just me.

The outpouring of support has been wonderful, and we thank you.

Watching a mom die is excruciating but being away feels worse, so I’m heading back tomorrow. Tonight I sign the lease for my dad’s independent living in MA along with my husband and sister-in-law by my side. He will be well taken care of living near his kids.

As I said to Ted last night, this is my most pain I have ever experienced in my entre life. I’m sure those of you who have lost a parent can relate. May their memories be a blessing.

Love,

JRB

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.