mybeautifulmigraine

Wednesday morning July 22, 0800: I was asleep curled up with Jen, for only about 40 minutes. My head by her right shoulder, her left arm cradled in mine, her left hand in both of mine. I felt Chad shake me awake from behind… I woke with a gasp (as I always do). I swung my head around to see Chad’s anguished face: “I think she’s gone,” he said tearfully. I caught my breath and swiveled to face Jen in the middle of the king sized bed, disentangling myself from her motionless arm and hand. I reached for her carotid pulse. It was no longer present. I said something like, “Oh.” I cradled her serene face in my hands. Kissed her forehead. She was cool to touch. I stood up out of bed and Chad clutched me in a bear hug. I held him as he cried: “Thank you so much; you will always be a part of this family. Thank you so much for helping us.”

“Oh, Chad,” I cried. My emotions were everywhere… disbelief, incredible sadness, so much emotional pain, all the way to relief. It was done.

He asked for a few minutes alone with his wife. “Of course,” I assured him as I left the room and closed the doors for their final privacy.

***

Jen and I tried to remember how we met and when it was, exactly. It was sometime in ~2014 when a Facebook friend of mine tagged me in her post as she was searching for a local neurologist who did botox for Chronic Migraine treatments. I was only too thrilled to connect her with my doctor Sara Westgate who was incredible since I’d moved to Austin in 2013. Finding a fellow Chronic Migraineur in my new hometown was a godsend… there aren’t many of us even though there are thousands of us.

While Jen and I were kindred, we were not alike. We were the same age and married, she had two children slightly younger than my four. Her career had been in Physical Therapy before chronic illness derailed her work, as mine had been in nursing. We both had rich experiences and familiarity in healthcare. We were both keenly focused on our families and growing children. We were both busy mamas and both in daily pain.

I never asked Jennifer if I could call her Jen. From the very first day I met her, she became Jen to me. It was more than a name; it was the way I knew her, the way I loved her, the person she was in my life.

Jen created a Facebook Chronic Pain Support Group and organized monthly in-person meetups at the local library’s conference room. We weren’t a big group, and if you know anything about living with chronic pain, you know we weren’t always the most dependable bunch. 😂 But I loved going whenever I could.
Jen had a gift for creating meaningful experiences. She invited healthcare providers to speak, welcomed holistic practitioners to share their expertise, and always found ways to help us feel seen and supported. One of my favorite gatherings was when she brought in a sound healer. We each settled onto yoga mats while the soothing tones of crystal singing bowls washed over us, creating a deeply peaceful and restorative experience. It was unlike anything I’d ever experienced – and it was absolutely awesome!

Jen was an incredible artist – painting with acrylic paints. When that became too difficult, she turned to resin acrylic molds – even creating beautiful clocks and mirrors. When that became too difficult she pivoted to nature photography. I sold makeup and clothing. Lol

***

Sunday July 19 arrived. The day Jen had planned to begin her VSED process (Voluntarily Stopping Eating and Drinking: A Compassionate Option for Hastening Death) I had been fretting and nervous the entire week before. When you start counting down the days of your life… well there’s nothing quite like it. I rested the day… watching the clock, slowly showering, putting on my comfy clothes, packing my overnight bag. I had come to the conclusion many days before, that once Jen’s VSED started, I would not be able to leave her and I wouldn’t be able to leave Chad either. The idea of stepping away – even for a moment, and leaving them with no support – I just couldn’t do it. My husband Marc was in complete agreement. I was very cognizant that this home was THEIR SAFE SPACE. My role was to support, not to direct anything. I had promised Jen that if they needed space, I could disappear into a closet.
Jen had asked me to pick up adult diapers on the way to the house.  And I found myself in the CVS aisle, staring at all the options – I never knew there were so many different choices and selected what I thought might be best.

Jen didn’t necessarily share my faith, but I needed it. I prayed passionately the entire 10 minute drive over. God, please be with this woman. God, please be with this family. God, please surround us all, move through us, speak through me, help me find the right words, help me do the right things to bring Jen and her family comfort and support and advocacy. God, please stay near us. Help each of us feel your presence. God, you are needed now. God, stay present, surround this family, hold them close in your perfect love. I took deep breaths and kept praying. I parked my car and tried to center and calm myself as I prepared to enter their home.

This home is a sacred place, I repeated to myself. This is the place Jen was choosing to die, with her beloved family near, this is the place she feels safety, comfort, and love. This was the most important place and I was determined to acknowledge that reality. This is a holy place. And Jen was allowing me to be a part of this. I recognized the enormity of the trust Jen had in me.

I knocked on the door, and Chad answered. I wrapped him in a hug. “I’m here for all of you.”
After slipping off my shoes and setting down my bags, I followed him inside. It was 1900 hrs, and the house was surprisingly peaceful. Everyone was gathered in the living room, settled into the couches, with Jen in her recliner. Kill Bill Vol. 2 played on the television – the evening’s movie choice by her daughter. I caught Jen’s eye, smiled and waved, and quietly joined them.
The room held a strange mixture of emotions. Beneath the easy rhythm of a family movie night was the unspoken weight of what this day meant. This was the day Jen had chosen to begin her final journey. The tension was there, impossible to ignore, yet so was the warmth. It felt familiar, almost ordinary, wrapped in the unmistakable love of a family determined to spend these precious hours simply being together.
As I settled in beside them, my heart slipped effortlessly into that circle of love.

Jen and I started texting from across the room as Uma Thurman was about to do her five point palm exploding heart technique on villian Bill. Jen was telling me about the zofran prep in the bedroom bathroom and I was telling her how beautiful her daughter is as I watched her nestled in a blanket on the living room chaise watching the TV. She was beauty and perfection. These are the last texts I have with Jen and I will cherish them. Jen presented me with a butterfly ring – her ring – she had bought three from a local artisan. One for herself, one for her daughter, one for her twin sister. And she wanted me to have hers.😢 (((Oh my dear, sweet friend.)))

***

I remember one time Jen contacted me – maybe in ~2017, she had gotten two passes for a local Cryo therapy spa and wondered if I would go with her. Um, YES! 100%! We arrived and toured the location and psyched ourselves up for a cold plunge! She had picked me to experiment with… not just anyone would go for a cold plunge. And maybe it would help our chronic health issues? We both would try anything. The tech gave us instructions and a white spa robe: we needed to remove all jewelry and be naked in the cryo container and cover our nips so they didn’t freeze off. Lol. I think I went first. And we giggled the whole time. It was hilarious but neither of us felt incredible health benefits. Lol.

Life was busy for both of us. We didn’t see each other as often, but we never really lost touch. About once a month, my phone would ring, and it would be Jen. I always joked that I preferred texting – she knew that – but I never let one of her calls go unanswered. We’d catch up on life, compare notes on our Chronic Migraine journeys, and laugh our way through whatever was happening.
In 2020, our neurologist temporarily closed the practice during the COVID lockdown, affecting us both. Then, a few years later, after caring for us for more than a decade, our neurologist retired. Suddenly, we were both searching for a new neurologist, and that became one of our many conversations.

Jen’s Migraine disorder was different from mine: weather didn’t affect her like it did me. She had significant myofascial pain issues. She’d spend at least an hour a day – an hour! – diligently working on muscle release, implementing cupping, Ashley Black tools, all sorts of balls and rollers and stretches. Her perseverance astounded me. She had a specific way of laying in bed at night that was essential for her body and helped her avoid migraine: she’d lay perfectly supine, arms out to her sides, palms up, neck propped on a termpurdic wedge pillow. During the day, she found rest in her recliner in the living room, with nothing touching her neck, unsupported. This all baffled me; we were so different. My secondary disorder was Rheumatoid Arthritis, my bedtime routine was curling on my left side, pillow between my knees, heating pad at my back, ice around my head. I only found rest during the day, in the lateral position, laying in bed on my right side, relaxing into my tempurpedic pillow and mattress. We both were serious TV series bingers. If only the job paid – we’d be millionaires. Our rescue and prevention meds were different too, but we both loved our Cefaly.

Soon after I met Jen, she became an Ambassador for U.S. Pain Foundation, while I found my advocacy voice through my blog, Coalition for Migraine & Headache Patients and Alliance for Headache Disorder Advocacy. Advocacy was as much a part of our journey as Chronic Migraine itself. We wanted to give a voice to the condition that had forever changed our lives and to let others know they weren’t alone – that support, understanding, and community truly existed.

She was doing amazing things with her art. Getting gallery exposés, commissions for work. I was so amazed. Her art was overwhelming – how could I even pick my favorite? I followed her Instagram art account faithfully. I didn’t always make it to her gallery events and that was disappointing, but she missed many of my events too. We were busy, we were in pain daily, and we were good friends who understood.

It was the summer of 2023, I think, when Jen called me with a new concern. She was having trouble speaking. Her speech was somewhat garbled. It was like her tongue was “too big” and not working correctly. Jen was on a mission to find out what was going on. Each visit with a specialist and each new test brought her closer to her final diagnosis of Bulbar ALS.

***

On that Sunday night July 19 in the living room, the movie Kill Bill vol 2 came to a close. We all talked about Quentin Tarantino and some of his other movies worth the watch. Chad and I moved to the bedroom bathroom to organize medications for the VSED. But Jen texted that she needed Chad – her daughter was crying. The weight of this being her last moments with the family intact was overwhelming. Chad and I came back into the living room and it was horrifying. He went to his weeping daughter (18) but she wouldn’t let him hold her. Their son (21) started crying. Jen started audibly weeping. She could no longer speak – not for many months now – but she was softly wailing with a broken heart. Hearing the noises of anguish from each of them, I thought I would shatter into a million pieces. My tears flowed uncontrollably as I crept backwards from their family and the living room to the staircase… trying, trying to give their family some sacred space. The animalistic misery went on and on. It’s like they say – minutes felt like hours. Jen finally tried to compose a voice message on her phone through her tears, and just then – a mourning dove started calling from the window near her recliner. A mourning dove. Overcome by the symbolism (so obviously a sign), Jen and I looked at each other from across the room, stunned. More tears. No need for words. The emotions were palpable.

Children never really lose their mother.
They lose the privilege of holding her hand, of hearing her voice across the room, of seeing her smile at the end of the day.
But they never lose the woman who raised them.
She becomes the quiet voice that reminds them to be brave. The instinct to be kind. The laugh that escapes before they realize it sounds just like hers. The courage to keep going when life is unimaginably hard.
One day, they will catch themselves doing something beautifully ordinary – and realize it was their mother living on through them.
That is how a mother’s love defeats death. It continues in the hearts of her children.

***

Marc and I made it to Jen’s incredible art exhibition at Mirabelle Spa in October 2023. It was absolutely exquisite seeing her art all around the spa, seeing her shine. I know she was struggling to speak at that time, but she was amazing, there was a world revolving around Jen’s talent. I was smiling, beaming that whole evening. We both had worked hard to make it to that beautiful exhibit. Chronic Conditions require a lot of rest to prep for an event and a lot of recovery after such an event.

One of the last calls I got from her was in late fall of 2023 when she was sure of the ALS diagnosis. She told me the prognosis was a life expectancy of about two years. Could I be hearing this right? Surely, no. It must be something else! Multiple Sclerosis, Parkinson’s, Myasthenia Gravis? I ticked off anything else to her on the phone. No, no, and no… everything had been ruled out. It was ALS, genetic markers and all.

It is a surreal and heartbreaking thing when a friend your own age, with teenage children still depending on her, tells you she is dying. There is a timeline suddenly placed on a life that should still have so many chapters left. It leaves you wrestling with so many painful questions:
• How can this be happening?
• What can I do to help?
• What will she and her family do?

It’s unnatural. It’s surreal. It’s horrifying. It’s wrong. All of it… wrong. This is a wonderful person, a giving person, a kind person. This is an artist with SO MUCH MORE to create. This is a mother who needs to see her children grow up, graduate, soar, find life partners, become a grandmother. Because my children were older than hers, I had already seen some of that: I had a married son. I had a grandbaby. When I looked at my grandson, my heart broke and broke again. I could not talk to Jen about my grandbabies. I just couldn’t, because she would never see her own. Her future was being robbed.

As soon as Jen got her diagnosis, you’ll never guess what she did. She started a Facebook support group in January 2024: Austin ALS Support & Information https://www.facebook.com/share/g/1JzpehvXzS/ because that’s JUST who Jen is! She’s got to advocate, she’s got to create community. Amazing woman. The best.

My life was busy with my family, grandbabies, my mother in Arizona and her demonstrative health conditions, as well as my own relentlessly frequent doctor appointments and pain, I checked in with Jen. By 2024/25 conversation became too difficult and she communicated via text only… my preferred method anyway! When you’d talk to Jen via text, it was all Jen – her mind never slipped, her dark humor and wit was always there. Honestly, it was hard to comprehend she was actually ill. Even up until the last moment.

I followed her Facebook updates and constantly offered to help – whatever she needed. But she rarely took me up on offers. Finally in Jan 2026, she let me take her to ALS Clinic day. I had a purpose and I was all in! I picked her up at her house with ample time to spare (both of us, as professional patients, do NOT like to be late to appointments. We take our profession seriously). Jen was no longer speaking, only using a phone app with her recorded voice to type out communication. She was weaker. She was markedly smaller. She had attempted a J-PEG tube placement a couple months before which had gone disastrously wrong – infection, over compression, even dislodgement! – and she refused to try the J-PEG again. Jen has always been self-assertive. If she doesn’t want to do something, it is not happening. I’m definitely not quite that stubborn, but I absolutely respect her feelings and as her advocate, I would make sure she get the ADVOCACY and AUTONOMY we all deserve as human beings.

On the way to ALS appointment, I showed her how cool and easy following GPS on your phone is (Jen would always print out map quests directions… even in the 2020s lol)! Of course GPS took us home the wrong way and we had a huge laugh over that.

The ALS Clinic was an eye-opening experience for me. Seeing my sweet friend so ill and mute was jarring. The clinic was genius: all the practioners would come to your room and check in to provide their areas of care. Jen would always have a page or two of written notes: updates on her status, concerns, things she needed. I was so proud of my professional patient friend. Written lists are essential for cooperative and proactive patient care. The visit lasted hours. I was so honored she had asked me to be a part of this journey. She couldn’t go with her husband – apparently he made her anxious during the visit because they took too long. Conversely, I had all day long!! If calm advocacy was what my friend needed, it was exactly what I’d provide. She was so pragmatic and discussed end of life hospice – when will it be the time? – no one could answer definitively. She read my face when I heard hospice being discussed and had her phone chirp out the words: “I’m not dying yet!” I burst into laughter and kissed her forehead. That sassy girl! She knew everyone in clinic, passing out information about the ALS Support Group, hugging all the practitioners. Everyone loved her. I know they saw her virtues that I’d known for over a decade.

ALS Clinic – Austin Neuromuscle https://share.google/UttZ6X9kE2sgSrFGS

Our second visit was in April. She let me talk about stupid life stuff during the drive. She was much smaller – under 100 lbs (nearly a 70 lb weight loss), she was uncomfortable, tired, it was more difficult to walk even with a walker and Ankle-Foot Orthosis (AFO) braces. Her lung capacity was greatly diminished, hanging out at 27%. I refused not to be cheerful, and peacefully supportive. She let the doctor know that this would be her last clinic visit – she was just too weak and the clinic visits were too much of a strain. Although Jen was transitioning into hospice and home care, she had things to do! Her daughter’s birthday and high school graduation was in May, her son (in his junior year at college in Colorado) was coming home for summer. She had things to do. My heart was breaking, again. Would she make it to her goals? I never needed to worry, because of course she would; this was Jen after all.

Throughout this journey, she continued to place her family’s needs and her community’s needs above her own. When could she die that would be least inconvenient for her children? Always thinking of others before herself.

I visited her again at her home in early May. She was only up for about a half hour visit and she raved about the hospice team who were visiting her. Plans were coming together in her mind. She announced on the ALS board that she was planning on starting VSED in the third week of July. Her reasoning was this would give her children some time to grieve before their college started in August.

At this time, I was texting her almost everyday. A little prayer. A lighthearted or dark-humored joke. Chronic Pain professional patients are uproarious hysterical sarcastics, if I do say so myself. My texts always contained the caveat: you don’t have to answer this… I’m just thinking of you.

In June she asked me to be part of her final journey. A request that was an incredible honor. She trusted me… to advocate for her and to bring calm energy. Although I’d taken care of dying patients in my nursing career, I had never been a part of hospice. And I could do this… for her, my dear sweet friend.

Two weeks before her decided date, I met with her hospice nurse Christian during his home visit. What an incredible nurse and person he is… everything I would want to be had I worked in hospice nursing. He was young, but wise. He listened. He was a medical expertise, to be sure, but there was something about his presence, his tranquil kindness that felt holy. I knew he was just a text away. I knew he would help facilitate anything Jen wanted for her final journey. To say I liked and trusted Christian is an understatement. He was a presence of hope, a guiding light. We were safe in his skilled care. He understood my dear, sweet friend.

My friend is not only an organizer, she’s a contingency planner. You know those notes she’d have typed up for her providers? Well, she had detailed notes – including photos of her proper necessary body positioning – for Chad and I to follow. I like notes, I’m a huge list maker myself. And in the weeks before, I printed out all her notes and emails and directions – as well as my own notes from meeting with hospice and had them in a small 1″ binder for myself. The binder I’d bring July 19 to VSED. I did all I could think of to bring not only notes, but the best, most-informed, ready version of myself – yes, the nurse, yes the advocate, but more importantly, the friend. I spoke to my family about the significant task and days, consulted with my counselors and other experts. I prepared by reading a book recommended by a life coach (a task not easy for me anymore due to Chronic Migraine) Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying (Callanan, Kelley – two hospice nurses). I was in a text thread with two of Jen’s closest people – her twin sister and her ALS bestie. So I could keep them completely up-to-the-minute during the VSED. But of course, no matter how much you prepare, you are never really ready. Not to lose your dear, sweet friend. Jen was ready. She didn’t want to die. She never wanted to leave her children. She was not giving up, she was choosing when.

After saying goodnight to her children on Sunday, July 19, I followed Chad and Jen into the bedroom, now cleared of anything but the king size bed and necessary medical equipment and supplies. The lighting was subdued, the atmosphere of home. Before heading into the bathroom, she motioned for Chad and they embraced. An embrace of a husband and wife of over 2 decades. She was absolutely emaciated at this time: only 85 lbs on her 5’7″ frame. Chad is well-built and healthy. Being witness to that embrace – him supporting and cradling her tiny frame – her burying her head into his chest – well, it took my breath away. I was witness to something tender, imperative, with complete trust and need and beyond beautiful. God was with us. I stepped back to give them the moment. Witnessing reverence, not wanting to intrude on the intimate splendor.

After their embrace ended. Jen went through her nighttime routine. I got her bed ready with chucks and spoke to Chad. She brushed her teeth, got into her self-assigned dying outfit (a tank top and the diaper… she was so afraid of making a mess). I got to watch some of her nighttime myofascial routine: stretches, biofreeze on parts of her head, followed by her mini Ashley Black tool. It was magnificent. And soon she was in bed.

I started with her zofran at about 2300. I crushed the med, dissolved it in 1cc of water, and installed it slowly into her buccal fold. This proved difficult. Long ago she lost her gag reflex, but she is very sensitive to a sensation of “too much saliva in her mouth,” and fear of aspirating and choking. After the tiny bit of med, she’d need to stick a washcloth in the back of throat to “mop up excess” even if there is actually none there. It was very difficult to keep her comfortable with that particular problem. She wanted her first liquid morphine half dose at 1200. Chad and I gave it. Again with the washcloth necessity at the back of the throat. While dying can have dignity, it isn’t exactly pretty and certainly ALS isn’t. I wondered if this action was removing some of her dose – so she might not be getting the proper amount.

That night, her son and I brought her recliner into the bedroom for me. After her morphine dose, I tucked her in and gave her a bottle of pills to shake to get my attention should she need me during the night. We went over sign language signs so she could communicate her needs to me:

Nausea
I need to Vomit
Having Respiratory difficulty
Anxiety
Migraine
Pain
Yes
No
Toilet
Thirsty
I need my daughter
I need my son
I need Chad

and the most important sign: STOP. I want to STOP VSED.

I knew she would never use this sign, but I wanted her to have the sign to communicate that. I asked if I could say a prayer with her and she said yes. Tears rolled down my face as I pleaded: Dear God, please help Jen TRUST. Her job now is to release the anxiety and find the puffy cloud from morphine to REST. MY job is to take care of her body… medicate, keep dry and clean, watch her skin, position, be patient and hear her needs, keep her perfectly comfortable. God please surround this holy house, this room, this body. While she’s on the puffy white cloud, fill her with the moments and memories of her beautiful life that have brought her bliss and joy and accomplishment and love… the tiny moments and the big ones… with her children, with nature… pure bliss. God, let her trust that a Mother’s love is the closest thing on earth to the face of God. Let her trust that a Mother’s love is an infinity… no end, no beginning, a beautiful bold bond and ribbon of light that will connect her to her children forever and always… in this world and the next. God be in this sacred space. Please please be with us in every moment.

I settled her in bed, took my own night meds, put one ear bud in, got my phone charger near the recliner and gathered myself in the recliner with my blanket and settled in to start texting: her friend and sister, my husband and daughter in law, her hospice nurse:

She’s settled for the night… her first half dose of morphine. Resting now. She was SCARED getting into bed. I administered the morphine and Ativan… I think it will calm her.😢 I’m going to be right by her side… she has a pill bottle to shake should she need me. My heart is just breaking… I said a prayer with her… will be praying all night. I was watching her get ready for bed in her tiny emaciated body and I kept thinking: I love this girl’s soul with all my heart ❤️

I heard her snoring all night. I thought she was finding that puffy white cloud. When I checked on her at 0300, she opened her eyes and I asked if she wanted more morphine. She shook her head no. I would discover at 0400 when Chad came in that she hadn’t been sleeping during the night, she could hear her own breathe snoring and it kept her up. I was beyond disappointed. She was supposed to be finding the puffy cloud.

Chad and I medicated her again with morphine at 0400. We developed a system where he would insert the liquid med into her gums, I would massage it in… Hopefully it was easier for her. But she still needed the washcloth to the back of her throat. She motioned she was starting to migraine and I medicated her with a subcutaneous sumatriptan and placed the Cefaly on her head. I lamented that I wished I could use an injection for all her meds:

We just did another round of meds and migraine is back… I’ve medicated… it’s a subcutaneous shot and truthfully, I wish I could give all her meds as a shot. The swallowing is HARD.

In the morning, I helped Jen zoom with her sister and friend. She was somewhat “out of it,” but definitely still able to communicate. It was more difficult, but she typed to the girls that she only wanted to hear funny stories. Her sister told a story about Jen putting a berry in her nose when she was little. Her friend shared an uproariously hilarious and gross story from her years working with mentally challenged jail inmates. I will never look at a basketball the same way. Lmao.

About 1000 on Monday July 20, she communicated that she wanted to see her children because she felt the morphine and ativan we were administering every 2 hours was “building up,” and she wanted to see them while she was still coherent. Chad ushered the children into the room. I stepped into the kitchen to eat and address texts. And breathe. And pray. God use me as your instrument. Help me provide for whatever Jen needs. Help me support her family. Help me hear her. God be with us now. Surround us.

The children left the room in tears and went to their rooms. I returned to Jen’s side.

By 1400 hours, I sent a text to my daughter in law and her sister and friend:

She’s not really communicating anymore. I’ve moved into the bed with her. Her heart rate is 126… I know it’s dehydration but I’m worried I’m not providing something.

I’m really glad she had a moment of clarity today where she wanted to see the kids and zoom her sister and friend. Since then, she’s been not conscious but comfortable.
Yes, she is swallowing easier now that she’s sedated. I suspect she will make it to the Macy Catheter tomorrow 😢

Monday evening to Christian, hospice nurse:

She’s not really communicating anymore. He heart rate is quite high. 126 or above. She took her metopropol last night. I know this is probably dehydration…

Christian:

Is she getting lorazepam, and haldol every other hour? Let’s keep the pace and I will start a Macy catheter tomorrow morning.

Me:

Yes she is… morphine w Ativan, 2 hours later, morphine w haldol (hyoscyamine every 2-3 hours)
She appears very comfortable now… not really opening eyes since tonight. It has been much easier for her to take the meds via syringe, much easier now that she is more sedated. It appears to be progressing just as you said. We will keep this up until we see you tomorrow ◦ Thank you so much.
I’m laying next to her in bed tonight reassuring her she is safe and loved.🫂

Christian:

I am so glad that she is comfortable. Thank you so much for all you are doing. See you tomorrow morning.❤️❤️🫂🫂

Once she slipped into unconsciousness during Monday, it became much easier for Chad and I to administer the medication every two hours by rubbing her gums. We told her what time it was each time we gave her medicine – one thing she had asked us to do before starting VSED. But now, there was no more washcloth in her throat, she appeared much more comfortable, no excess saliva, quiet breathing. It was quite beautiful. And calm. I kept slipping next to her in bed just to be near her… so I could hear her breathe, touch her, cradle her arm and hold her hand. There was nowhere else in the world I wanted to be. This was it. I wanted to be as close to my Jen as possible.

At 2100, Chad and I gave her another dose of morphine and haldol. He went to get some much needed sleep in the other bedroom. But at 2200, Jen started cheyne stoking breathing. I was scared. I called him to come back in – I thought we were seeing the end. When you hear that breathing, it is terrifying. Chad arrived at her side and held her head and cried to her: It’s okay if you have to go.” We were both weeping. It was an ugly cry. I was mopping my tears with my blanket as I repeated to Jen: It’s okay. It’s okay. You’re okay. Her son came into the room and I went to her daughter’s room and knocked on the door. She would not come to her mother’s room… it was just too much for her. But she let me hug her and we both continued crying. I told her: “You can come see her if you want. Or you don’t have to. She loves you so much. She will never be far from you. She’s in her bed and she’s okay… if you want to see her. I’m sorry this is happening.” And I’m so grateful she let me hug her… she doesn’t normally let people hug her.

But in the next few hours, Jen did not pass. And her breathing calmed. And Chad stayed next to her the rest of the night as we continued her meds every two hours. I was on her left, Chad on her right.

During VSED, I never stopped talking to her. Every moment I was awake, I spoke to her: about what was happening with her, about her children, about how I was feeling, about the birds coming to my camera birdfeeder, about what medicine she was getting, about how everything was okay, about how I envisioned the puffy cloud of morphine, about how much I loved her, about how much her family loved her, about how brave she was, about how beautiful she looked and how amazing she was doing.

Tuesday morning July 21 arrived and Christian came at 0800, just as he promised, to insert the Macy Catheter. Jen’s diaper was still completely dry, her breathing stabilized, her heart rate strong (Jen’s heart was strong. That was Jen, always. The strongest heart.❤️), we could no longer get a pulse ox or blood pressure. Christian asked her for a “thumbs up,” but she couldn’t respond. I helped him hold Jen’s body in the proper position for the Macy. As we turned her to her right side, she drooled a tiny bit. This was the only mess she made the entire time. Lol. I cleaned it up easily. Jen was absolutely the most clean and tidy dying person ever. Of course. After the Macy was in, Christian gave her her next dose and showed Chad and I how to do it. When Christian left, I discovered it was better to leave the syringe in the catheter after administration… to prevent any leakage of the meds.

Tuesday July 21 was peaceful.

With the Macy in place, everything changed. No more assault on her poor gums and mouth. And we could comfortably increase the morphine and ativan doses, we kept telling her the time with each dose. The catheter was so incredibly helpful and made everything more peaceful. We could easily administer medications without disturbing her. The whole house fell into a calmness, a relief, as did Jen’s breathing. It led the way forward. As the nighttime came, Chad chose to stay with her in bed. Her breathing had changed once again. No more cheyne stoking – this time just a normal ~3 breaths with very long pauses in between.

I decided it would be perfect for me to sleep on the recliner, giving Chad and Jen the bed. That’s where I started off. Chad and I had discussed weeks before that I would handle nightshifts 2000-0400 while he was on days 0400-2000… I shine best at night nursing with my grandbabies, and other nursing tasks… nights are my best.

At 2100 hours, I gave her the dose of Tramadol, clonazapin, haldol and morphine as Christian had suggested. I noted her vitals: HR @ 156, resp 8 breaths per min with huge pauses in between. I was unable to get a BP or pulse ox.

But by 2250, I abandoned my post in the recliner and texted Christian because I could see a change in Jen’s face. What I saw was anxiety and distress. Her forehead had those familiar tension lines visible between her brows – a small but unmistakable sign that she was struggling. I could feel the anxiety, even if it was subtle.
Christian suggested some Ativan. I administered it through the Macy, doing my best not to disturb Chad. Shortly afterward, I gave her her scheduled dose of morphine and hyoscyamine.

But it wasn’t enough for me. Something made me work harder on the anxiety she might be feeling. They say the last sense a dying person loses is hearing. They can hear you. And I needed to talk to my friend. I settled in close to her on the opposite side of sleeping Chad. I kneeled in bed, held her right hand, stroked her right arm, massaged her forehead where migrainuers need their foreheads massaged. I came in close to her right ear. Her sister had just sent me a poem she’d written for her twin… a poem she planned to read at Jen’s memorial. I read the poem to Jen, whispering so not to wake Chad.

Jen, I said, Melissa just sent me this poem for you:
From the moment I awake
Til the time I go to bed
Thoughts of our time together
Dance through my head
A simple time or place
Can trigger a memory
Of a time when it was
Only you and me
The way you used to laugh
The way you used to smile
Just by me remembering
Is like having you back a while
I remember your favorite movie
Of the way you kept your hair
Of the music you would sing
Of the art that you would share
Each memory is a keepsake
A bit of you left behind
I know you are in Heaven
But you live inside my mind
The bond we have is strong
It will never go away
Your memory will not fade
I will think of you every day.

I did my very best massage on Jen’s head, working carefully and softly on those tension lines as well as her temples and jaw. Trying to massage the anxiety out. I moved to massage her feet too and Chad stirred as I accidentally tapped him… he was laying so close to his wife. I’m not sure if I fully woke him, I quietly apologized and he seemed to go back to sleep as I continued her foot massage.

After reading the poem and massaging her body, there was more I had to say. And I laid my head down next to Jen so I could keep whispering to her. The room air purifier hummed, helping to drown out the sound so not to wake Chad.

Jen, I know you must be scared now. I can see it in your face. I know you must feel alone and scared and in the dark. I can sense it. I imagine you’re treading water in the dark, trying to stay above the water. I’m thinking about the beautiful water scapes you paint and I’d like you to imagine those beautiful serene waters. I’m right there in the water with you. You can stop kicking, you can stop moving your arms. You can lay your head back in the water. I promise you will float. You will not go under the water… we are all there holding you up. You can lay your head back and rest… you’ll float on that beautiful water. The tide will carry you home. I know it may be dark and you may feel alone. But you are not alone. We are all there with you. “The grey rain curtain of this world rolls back, and then you see it – white shores and beyond a far green country under a swift sunrise.” I promise you won’t go under the water, you will float, and the tide will carry you home. You’re okay. You are so brave. We love you so so much. Your daughter will be okay. Your son will be okay. We’ll take care of them. You are so safe. You are so loved. We are right here with you. There are people waiting for you… to love you. And it will be okay. We will see you again.

I think I talked to her nonstop for about an hour. And her face started to relax. It was then time for her 0300 med admin.

I had my alarm set for her med admins every two hours. And I had written out what was due at 0500 and 0700. And I must have slept through my 0500 alarm. I woke up at the 0700 with a start. It was just Jen and I in the bed. Chad wasn’t there. I checked Jen: her face still looked serene, her breathing the same with huge pauses in between about 3 or 4 breaths. I got up and checked the med list; I was very upset I’d slept through 0500. Chad had left a note: he’d administered 0500 and 0700 and was out for a short walk. She wasn’t due for meds until 0900 (my alarms were set). I laid back down with Jen, holding her hand. I talked to her about sleeping through my 0500 alarm – maybe Chad had silenced it lol – he always wakes at 0400, after all. I checked my bird feeder and told her the myriad of cardinals were out there again.

About 0720, I fell asleep again tucked into Jen’s right side, my head by her shoulder, my arm cradling her right arm and her right hand between both my hands. It was so peaceful.

And then – I felt Chad shake me awake from behind..

***

LIFE moves on, somehow the clocks continue to keep ticking, the sun continues to rise and set, daily duties need to be checked off lists, deadlines need to be met. Jen’s garden creatures continue to forage food, spin webs, collect pollen. Maybe they wait for her corporal visits that will no longer happen. I find myself wondering, how is it possible for life to keep moving? Doesn’t the world hold its breath and know my dear, sweet friend is no longer here? A husband is without his wife. A twin without her sister. Two brilliant and loving children are without their mother. She is no longer here. She’s a star in the exquisite night sky, an appreciated balmy breeze on your face, that soft ray of sunset sun that immerses your soul in serenity, a whispered prayer. She’s now a part of the incredible art she created, she’s in every beautiful bloom she appreciated. I welcome her to visit with me in my dreams, and I feel her love everywhere. And because I absolutely know it’s true, I told Jen over and over again; It’s okay. Everything will be okay. And I know, I know, she is in Perfect Peace and Perfect Love. She can talk again, her lungs aren’t struggling for breathe, she is free of the physical limitations that brutaly restrained her body in bondage and pain. I will not say goodbye; I will see you again. And as I promised her many times in soft whispers those three quiet nights of her dying: You are safe. You are loved. You are not alone. It’s okay. There is no migraine in Heaven. My dear, dear, sweet friend.

“… the journey doesn’t end here… [it] is just another path, one that we all must take. The grey rain-curtain of this world rolls back, and all turns to silver glass, and then you see it… White shores, and beyond, a far green country under a swift sunrise.”

Gandalf, Return of the King

Life is eternal, and love is immortal; and death is only a horizon; and a horizon is nothing more save the limit of our sight.

Rossiter Worthington Raymond 1840-1918

The tragedy of death is that it ends a life. The miracle is that it cannot end Love.