Tag Archives: Mom

A new life…

3 Jan

I took the past year off. From a lot of things. From my music to singing to guitar. From things that made me happy. Like writing. I didn’t do this on purpose of course. I did it without even thinking. It’s been a year. A lot has changed in the past year. And in many ways, nothing has changed.

My e-pen to e-paper writing skills are still a bit e-rusty, so this post should be short. Sweet perhaps, but maybe a bit salty too.

My beloved mother passed away on 12/27/13 – for those of you that haven’t read or knew about this – just recapping. She was quite a woman. Solid, humorous, outrageous – with a huge sparkly personality only outmatched by her love of huge sparkly jewelry. I did sing at her service, and while (to me) it was out of tune, and I sang through tears in my throat, it was really just for her. And it was OK. The rain that January day let up enough for us to send balloons up to greet her. The message on my balloon was simple: “I’ll never forget you.”

On Memorial Day, I planted the seed paper we gave at the service along with her ash dust. On Labor Day, she bloomed.

Mom flowers
Us 006Rockstar stood next to me at every change.

Held me close and made me believe in hope.

His life took an amazing turn in 2014. With his life rising from the ashes, my phoenix and I made plans to start ours afresh.

We took the next step and moved in together just after our 3rd year anniversary trip to Hawaii in June.

Since then, we’ve settled into “new couple” patterns. You know, kissing and cuddling, bickering over chores, cooking together, and dog duty.

The usual shenanigans. It’s been a hell of a ride. A good one. A very happy one!

I spent most of the summer getting a tattoo of all things. It all started when I decided to tattoo my mom’s thumbprint somewhere and ended with a pretty big back piece. Ain’t gonna lie, this hurt a LOT. The thumbprint is actually inside a frame on my lower left thigh.

After I sold my mother’s house, and paid off her debt, and split what remained, I started asking myself what I should do with my share. What she would want me to do. Well, she’d want me to invest in a face lift, I’M SURE, but that’s just not my way. However, Botox is something that I can always get behind.

She always said she loved talking with me about stuff because I always listened to her and gave her good advice. I think she’d be proud that I’m using her legacy to go back to school to get a degree in Psychology. I start on Monday (Jan 5). Wish me luck because while I took the past year off from some things, work isn’t one of them.

2015 will bring a lot of change for me. I turn 50 this year. I have wonderful friends who fill my life with laughter. I have the most loving man whose smile lights up my day. I have memories, voice mails, and maybe a video or two of my mom and while I can’t quite yet listen or watch, they are there for me when I’m ready. In the meantime, I can and will squeeze every ounce of life from and to this life I have now.

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My mother’s eulogy…

26 Jan
In loving memory... Feb 2013, La Rochelle winery

In Loving Memory… La Rochelle – Feb 2013

Mom died on December 27th. The next two weeks would be a flurry of activity for my siblings and me. My brother offered that he and Rod would take my mother’s beloved pets, Cooper and Dolly, which we shared with my mother when she may have still been lucid and for which I will always be thankful.

My sister will list Mom’s house as we will need to sell it.

And I will deal with all the finances.

My sister inherited the part of Mom’s creatively arty side so we quickly agreed that she’d take care of the memorial tribute video and reception, I’d sing Grace Potter’s “Stars” at the service, and each of us would give a eulogy.

I wrote mine through a blaze of tears. Here it is…

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I would have said that she was a dirty clothes whore, but maybe that’s just me.

I usually have witty things to say. Sometimes snarky, sometimes mocking, but rarely have I been at such a loss for words. Until I sat down to write something about my Mom.

I could regale you with her antics and shenanigans with me and my friends, many of whom are here today and very likely reliving their own greatest hits with Linda. I could share what a loving, vivacious, bodacious and giving woman she was. She lived life out loud, from her personality to her clothes and jewelry. Every single one of you already knows these things. Instead, I’m going to share how I feel about this loss.

I’m not ready to no longer have her in my life. I want to see her come in that door right now. I want to hear her voice, feel her touch. But she cannot walk through that door. She’ll never walk through that door.

She is gone. I don’t want to believe it. I’m not ready. I want more time. I need more time.

She is gone. I’ll never see her throw her head back and laugh with abandon. Or hear her chuckle over a good dirty joke.

I am mad as hell that I can no longer call her and hear her voice. Hold her hand as we walk into our favorite restaurants. Go wine tasting and hear her ask for “just a squidge more”. Soon, I won’t be able to smell her on her scarfs and shirts.

She is gone. I don’t want to accept it. It’s not fair. It’s wrong.

She is gone. She’ll never be able to kiss me or wipe my tears.

I’ll never be able to tell her again how much I love her. How proud I am to be her daughter and that I will always be thankful for her. For things that I got from her: her laughter, her sarcasm, her wit, her joie de vivre, her love of adventure, her unique identity of style, her flamboyant makeup, and for having the same size shoe so I could learn early on how to wear stilettos.

I had a most precious experience the night she died. I felt her. I felt this presence wrap around me and fill me with a serenity like no other. I have tried to describe what I saw and felt and I’ve found that there are simply no words to do this justice.

I am grateful and honored to have had her in my life.

She is gone. I am simply not ready to lose her in this world. HER – I simply feel lost without her.

I will always miss her. And I will carry my love for her with me always.

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Thank you dear readers for sharing this journey with me. It hasn’t been an easy road to travel, putting e-pen to e-paper and sharing the rawness, but it has been cathartic. If these posts help even one person prepare for the death of a loved one, it was worth it.

Be kind to each other, and especially, yourselves.

She is gone…

26 Jan

Friday December 27, 2013

They say each death is different. I would agree. Having been witness to just two prior passings certainly doesn’t make any one an expert on what to expect.

Overnight, while my sister and I sat in the ICU room’s stiff backed chairs, our butts going numb, fatigue and strain taking over in equal measures, I did my research. Google was my best friend and I needed to better understand “what to expect when you are expecting someone to die”.

The ICU nurses couldn’t really offer enough concrete facts so I spent the entire night, save one hour, reading other people’s accounts. I felt it was my responsibility to help my brother and sister understand what was about to happen. So I learned what to look for, both with the fact she would die from not being able to breathe, and the signs that it was imminent, with her color change, swelling, and mottled appearance.

Each hour, at the top of the hour, Mom’s blood pressure cuff would start and give us a new reading. Sandy and I would hold our breath as the new reading would display. I would then enter the BP into a note file so we could keep track of the changes. Just before 3am, exhaustion kicked in and I went to the ICU waiting room, where Rock was, to try to rest. There were two little couches in there so I brought a blanket and covered us both and closed my eyes. A couple minutes later, the all-too familiar text tone I have for Sandy startled me awake – the new reading was in… I couldn’t quite fall back to sleep after that. At 4am, the next text came and I wearily returned to Mom’s room. I held her hand as I scrolled through my research. The night skies began to lighten – a new day was near.

During the brief moments in previous days where Mom was lucid, I had put my nose to her nose, pressed my lips to hers, and then looked her straight in the eyes, staring deeply and lovingly. I told her she’d suffered strokes. I told her I was going to take care of everything. Not to worry. When things became clear that she wasn’t going to make it out of here and be normal again, I made sure she knew it was okay to stop fighting. When she was moaning in pain and in discomfort, I’d caress her brow and tell her “Soon, my sweet pea, soon… I’m taking care of it.”

Sure, we all knew what was going to happen, but not the mechanics. As often as we could, we each told Mom repeatedly how much we loved her and it was okay for her to not fight any more. That we were going to be okay, to not worry about us.

It’s said that the dying patient will hold onto life until they are ready to leave. They may not be ready for a variety of reasons, some of which are unresolved issues, others could be wanting (or not wanting) someone to be there.

Overnight, Mom’s blood pressure and heart rate dropped. A lot. Several times, her heart rate would spike unbelievably high and then settled again at a more normal (low) rate. Around 2am, her blood pressure stabilized. Go figure. She fought for over 20 years to have a 120/80 reading, and presto, now she had that. A couple hours later, her blood pressure climbed again. By 7am, it began its wicked descent. It’s now Friday morning, December 27.

Mom’s attending doctor came to see her (and Sandy and I) at 8:30am. He said it was now a matter of hours, not days. He said within 8 hours she would pass.

Recently, my brother was diagnosed with high blood pressure and diabetes. This illness has been a hard wake up call for him. And because he needs to keep his health in check, Rod took Greg back to Mom’s house for a couple hours of sleep around 2am, away from the stress of the ICU. When Greg arrived bleary eyed that morning at 8:45am, he said good morning to Mom and then I whisked him out of the room so I could prepare him for what to expect. I needed Greg to wrap his arms around the fact that just one week ago, he’d taken Mom to dinner, laughed over whatever jokes they shared, but now, she was lying in a bed, her body unable to keep her alive.

He swallowed hard. Just then, the text tone from my sister filled the tiny room. It was the top of the hour and the reading for Mom’s current blood pressure was in. 93/46. I calmly stood up, shared a sad look with Rock, and told Greg that we needed to go back in.

Once inside her room, her heart rate spiked to 174 and didn’t drop. She was in respiratory failure. Her heart was trying to fight, but she couldn’t breathe. This is what the body does.

Sandy was wrapped around the left side of Mom’s body, holding her hand, petting her brow, crying. Greg was holding Mom’s right hand, stroking her arm, crying. I moved between the two of them and Mom’s feet. I felt detached from the process of dying. I became very calm.

I told them both that the time was now to say anything to her that needed to be said. That we should tell Mom it’s okay to go, that we will be fine. We all did, through sobs and sorrow – unable to believe this was really happening.

Within 20 minutes of Greg and I walking back into her room, she was gone. It was then that I fell to my knees in her room, crying uncontrollably. I’d lost my mother.

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That evening, as the sun set, an amazing hue of blues, pinks, and purples filled the sky. It was an absolutely gorgeous sight. My family and I talked about this at a family dinner a couple of days later. We knew what it meant. Mom, in all her spectacular vibrancy, was making her unique impact on the heavens.

There’d be many, many more opportunities to cry like I’ve never cried before since then. Each time feels like the first time. Each time I cry, I feel the loss of my mother so acutely, I want to come undone. She is gone…

Over oysters - Aug 2010

Over oysters – Aug 2010

Do not resuscitate…

25 Jan

Wednesday December 25, 2013

For a highly organized person, I tend to lose things. My glasses get lost CONSTANTLY. Ask anyone.

After my Mom created her living trust, she wrote her will and named me as her healthcare agent in her Advance Healthcare Directive. All of this was notarized and placed in a binder with her name on the spine and the types of documents on the front cover. She gave me this binder back in 2007, since I was not just her healthcare agent, but her trustee and executor. When my husband and I split in 2011, he put it in a box among other documents for me. I then put the binder in my car, in the pocket behind the passenger seat, where it sat for two years. It was only last April that I finally found a home for this, and only because I gave my car to my Mom. It still amazes me that I could have lost this so easily.

It is now Wednesday morning and the skies are clear as we head back to the hospital. It’s Christmas day for the rest of the world, but for my siblings and me, this was just Wednesday.

I read the healthcare directive closely on the drive. I felt the weight of the importance of the job my mother entrusted to me push down on my chest with a heavy thud. I’d have to let my inner pit bull come out.

At least I wasn’t alone. Having Sandy and Greg there was truly a Godsend. My sister and I shared the enormous responsibility of removing our father’s life support and witnessing his death. We both knew where this outcome with Mom could lead and were prepared to ask the tough questions. For Greg, this was all too surreal. He was trying to understand it all, to make sense of it. We each supported the other.

The ICU scanned in the directive and we talked with the neurologist. Now, I’m not going to be all nice and fluffy about this doctor – she was so hyper-focused on the stroke that she couldn’t or wouldn’t see Mom as a whole person. Mom has over 20 years of high blood pressure, diabetes, high cholesterol, asthma, Crohn’s, and arthritis. In little over a week, she had also been diagnosed with atrial fibrillation and congestive heart failure. And on top of all that, she’s suffered multiple strokes. So when I ask the prognosis doctor, give me the full fucking picture. Don’t give me shit that “most families don’t ask this question so soon – most families want to see how the patient is going to recover”. Well, excuse me for not being most families here. When my Mom directed us to NOT PROLONG HER LIFE, I need to know at what point we are forced to make that decision.

Here’s the nasty bits people… What exactly does NOT PROLONG LIFE mean to you? If you have a stroke, are able to communicate, but cannot feed yourself, do you want to NOT prolong life? If you can’t communicate, can’t understand, but can feed yourself? What exactly are the parameters?

We felt we knew Mom’s parameters – a partial existence would not be okay with her. But the definition of “partial” had me wanting to make a pros and cons list. Second to dying from a stroke, her biggest fear was being left in a hallway in a nursing home. So yeah, we had some tough decisions to think through. And screw the politically sensitive people. I’ll ask the hard questions even if you don’t want to answer them. That’s my job.

I wanted an MRI that day since that test would tell us more about the extent of damage to the brain. The neurologist and the attending doctor recommended we wait a day or two to see if she has any clinical improvement, that we could be misled initially by the results. So I agreed, even though I worried about her being in this state, unable to recover fully.

There wouldn’t be any improvement. She continued to sleep, rousing only when we’d gently shake her, but her focus was minimal. She looked like she was in pain; her face would screw up and she’d wince. By late afternoon, she had lost the use of the right side of her body. We knew what was happening. What was going to happen. We didn’t talk about it. We just knew. Quiet looks, hugs, lots of crying.

With a heavy heart and a profound emptiness, I signed the DNR (do not resuscitate).

My brother’s husband Rod arrived that afternoon and helped Greg keep his focus. The reality of what was happening was way too much for any of us, and for Greg, a deeply empathetic soul, with his mother dying, this was just too fucking hard.

Throughout the day, in brief moments of wakefulness, Mom’s only response to every question was a rapid nod to her head.

“Mom, are you in pain?”

Nod. Nod. Nod.

“Do you want the lights off?”

Nod. Nod. Nod.

“Mom, do you want this to end?” – motioning to the machines and around the room.

Nod. Nod. Nod.

I crumpled in defeat. I’d been very strong inside her room, but to this I just burst into deep cries. My sister had to remind me that Mom either didn’t know what we were saying or was unable to give us the proper response since the part of her brain controlling motor function was damaged.

I stood again at Mom’s side. “Do you want some lima beans sweetheart?”

Nod. Nod. Nod.

I rolled my eyes and calmed down. A little. She hated lima beans.

Thursday December 26, 2013

By Thursday, she stopped responding to us altogether. No more squeezing our hand with her left one. No more ability to rouse her from sleep. That’s when I insisted we get the MRI. We needed to know the extent of the damage. That evening, our worst fears came true. Mom had developed a bleed in her brain. The damage would be irreversible.

We had no choice any more. The decision was now out of our hands. The blood thinner that was supposed to prevent the clots had the unfortunate and all too morbid consequence of causing blood to pool in her cerebellum.

Within minutes of stopping the Heparin line, she went into respiratory arrest. I was just outside her room, talking with a family member, when I was called back into the room urgently. In three strides, I was back in the room, just as the nurses asked everyone to leave. They had called Code.

I was at my Mom’s side within seconds witnessing her violent reaction to the respiratory arrest. Her body jerked upward on the bed and she tried valiantly to breathe. The nurse’s called out for CPR. I shouted out “DNR.”

The nurse’s in the ICU department change daily. These ones didn’t know us – a quick check in her chart confirmed the DNR flag.

Mom died that night. She took a final pained breath and then a final exhale. And for approximately 40 seconds, we thought she was dead – until she took another pained and dramatic breath and her heart started beating slowly.

It was too much to bear witness to. We wouldn’t leave the ICU that night. Sandy and I stayed bedside. Greg and his husband Rod tried to get rest on the main surgery couches. Rock rested in the ICU waiting room.

We started her Dilaudid (an alternative to Morphine) right then. She was no longer on any life support. No IV lines keeping her hydrated. No medications for her many conditions. It was now a matter of time.

Our biggest fear now was that Mom would lie helpless for days or even weeks, her body struggling, while her heart and lungs slowly failed her.

Wine tasting - Nov 2011

Wine tasting – Nov 2011

Never the same…

24 Jan

Tuesday December 24, 2013

My sister and I got back to the ICU early on Tuesday morning. Kissed our Mom and called her “sweet pea” and “beautiful”. Told her Greg would be there in just a couple of hours, and that Aunt Sharon was coming and so was Inga.

Mom was looking forward to seeing everyone. Not as excited as she normally would be about seeing everyone, but under the circumstances, and given how tired she was, her tentative “Really? Oh, that’s great…” was enough for me. The vascular surgeon came by and told us how well Mom was recovering from the embelectomy and her attending doctor came by and said we needed to start her overall recovery. Which means, get her up and about. Change her dressing gown, get her sitting upright.

One of the nurses came in and helped her into a chair, near the natural light from the window. She’d need to start sleeping at night, and be more alert during the day. I could tell it really taxed her, being moved to the chair, but she didn’t complain. She just moaned and went back to sleep. I didn’t think twice about that – she needed her rest.

When my brother Greg arrived later that morning, I intercepted him to better prepare him for seeing her. She didn’t look good – not just because she’d been through surgery and initial recovery, but she was once again intubated and her words were jumbled. I prepared him that “it’s the delirium effect from anesthesia and sedation – don’t be alarmed – just be patient.”

I explained why she had to be intubated again… the previous day, because of her nausea, and the inability for medication to control it, we could no longer give her any liquids by mouth. This meant she couldn’t be given her other medications – thus, they had to intubate Mom through the nose. Less invasive but still… Technically, Mom was on life support and the physical reality was harsh.

Greg understood. He walked in and hugged her, kissed her, held her hand. Inside, he fell apart. Greg is first born and he and Mom always shared a special mother-son bond. Seeing her hooked up to multiple lines and intubated was hard for him. My heart hurts that he had to go through this. Inside, I was glad I told him to wait to come – seeing her on the vent would have killed him.

I kept talking to the nurses about her continued word misplacement (I didn’t know what to call it) and they’d do a quick neuro test and assure me it was likely related to being exhausted from the constant attention from ICU nurses and doctors. That made some sense, but I didn’t quite buy it.

Mom became a bit unresponsive by lunch time. She’d slumped in her chair and the nurses would rouse her, rearrange her, and then Mom would moan, go back to sleep and slump again in her chair. Although her blood pressure was high, and her blood glucose were high, but the nurses assured us this was normal at this point.

Aunt Sharon arrived early in the afternoon with Uncle Joe and my cousin Laura. My cousin David arrived later that day, leaving his family dinner to come see his Aunt. Today was Christmas Eve for them. Not for us however. It was Tuesday. The holidays were something other people would enjoy.

Sharon is a just-now-retired-nurse. She’s done and seen it all. She too knew something was not right with Mom. Mom was mostly non-responsive at this point, although we were able to rouse her and she was able to recognize her sister. They talked briefly too. This is why I said my sister gave a gift to my Mom the day before when she had Mom and Sharon talk over the phone.

I no longer day dreamed about moving in and taking charge of her pantry. I couldn’t think anymore beyond the current moment in time. No thoughts about “later on”. No thoughts actually about food. The ICU nurses had to repeatedly remind us that we all needed to take breaks, rest, and eat.

Mom was once again slumped over in that damn chair and this time, I noticed the right corner of her mouth drooping. At first, I thought her mouth was lax from sleeping. Then I knew. I just knew.

We alerted a nurse who got the doctor. We sort of let my Aunt do most of the talking knowing she’d explain what was going on if we needed it. But the bottom line was that they were ordering a CT scan to confirm that she’d had a stroke. By 2pm Tuesday, I sent a text message to Rock “She’s not going to make it. I know it.”

The very thing that my mother most feared, she’d likely had.

Mom’s best friend Inga arrived that afternoon. Mom not only recognized her, she was attentive! They had a full on conversation about the fun they were going to have once Mom was outta this joint! Sandy and I hugged each other and cried. It felt hopeful. Amazing. It would be short lived. As soon as Inga left, Mom returned to her unresponsive state, not rousing easily or responding to the doctor’s and nurses prompts.

A thousand questions entered my mind, none of which I could wrap my head around, or my heart, or my voice. Not yet.

My family and I sat in the ICU waiting room while they took Mom for her CT scan. We held hands and I asked my sister to lead us in prayer. It was a somber moment, filled with fear, regret, anxiousness, faith and love. Soon thereafter, we had confirmation. She’d suffered at least three strokes. She’d never be the same. But would she survive this?

In the brief moments where Mom seemed able to focus, I stroked her brow and looked her in the eyes. Nodding, I told her she had several strokes. She looked like she was in a lot of pain. Weeping, I told her it was going to be fine, that if she wanted to fight, she should. That if she didn’t want to, I’d take care of everything.

Later that night, Rock picked me up from the hospital. We went back to my condo – I needed to get my mother’s advanced healthcare directive. The one that named me her agent. The one that would give me the strength to ask all the hard questions that were swirling around my head. The one that would allow me to execute her wishes, if it came to that, to not prolong life.

Having Sushi, Sept 2013

Having Sushi, Sept 2013

Final quiet night…

24 Jan

Monday December 23, 2013

After the doctors removed my mother’s ventilator, I filled her in on what happened. She didn’t seem confused – just a bit, shall we say ‘ornery’. The nurses told me to expect some lingering delirium while she was fully coming out of the sedation so I wasn’t concerned.

I told her that Sandy was on her way – that she’d be there just after lunch – and that Greg was flying in first thing in the morning. These initial hours, post sedation, were pretty hard for both her and me. Not only did she believe she was going to die, she seemed to have given up a little bit. “Why bother?” was her reply to most of what I said.

“Maybe just one more day in the ICU to stabilize you, then we can get you back into a regular, quiet hospital room…” was met with “why bother? I’m dying.”

“Do you want me to wash your face?” was met with “why bother?”

I know she was scared. She said so. She was scared and angry. Two emotions I rarely saw from her. But she was also very ill. About 30 minutes after removing the intubation, she asked for water. At first, the doctors allowed small sips of water to see if she could keep it down. She couldn’t. Within minutes, she quickly vomited. She couldn’t keep ice chips down either. What was coming up was not water or food either, as she hadn’t eaten food since Saturday. The nurses assured me that her lungs were just clearing but to keep my eye on the amount of fluid, viscosity and color. I didn’t mind – she’d taken care of me my entire life, holding my hair back as I got sick. It was the LEAST I could do. Hold her and comfort her, blow her nose, wash her face…

I took a much needed break when my sister got there. I knew all of this was very serious and I needed to alert others in the family. My Mom has one sister and they’d been estranged for the better part of a year. I dialed my Aunt’s number (so strange I can still remember by heart their home phone number!) but got their answering machine. Left a generic message because who wants bad news delivered on a recording device?

Next, I called my cousin, Laura. She called me right back and I told her the news. Sort of played it down – no need to worry anyone. She asked if they should come see her and I felt it would be too much for my Mom that day. Told her maybe Tuesday…

Next call was to Mom’s best friend Inga. I’d been keeping Inga apprised of the changes daily and discouraging visits as well. There was NO way I was going to let Inga see Mom on a ventilator. I told Inga the same thing as my cousin. Maybe Tuesday…

Later that afternoon, without knowing it, my sister reunited Mom with Aunt Sharon. It was a gift she was not aware she was giving. A very appropriate and healing gift, considering we wouldn’t have Christmas this year. We didn’t know we weren’t supposed to use our cell phones in the room, but Sandy used hers – and let Mom and Sharon mend the bridge that separated them. Mom was so relieved. Aunt Sharon said she’d come see her the next day. Mom was all smiles.

Shortly after this call, my sister and I commented on Mom’s delirium. It seemed more marked, not lessened. Surely, the sedation medications had worn off by now? We detected subtle shifts in her speech, things her nurses wouldn’t notice, but we did. She started misplacing words in sentences, and using wrong words as well. Mom even noticed. She said “I know I’m not making much sense…”

Still, we suspected she just needed a good night’s rest.  It had been a very hard two days for her and she was in such discomfort. The nurses were trying everything to get her nausea under control. On top of that, her blood glucose was too high as was her blood pressure.

Even so, it would be a quiet night for Mom. The last quiet night she’d ever have. What we didn’t know then was that Mom had already suffered three strokes.

LindaBetlan

Stop and listen…

23 Jan

Sunday December 22, 2013

I’m a very habitual person, much to my dismay at times. After I got back to Mom’s place on Saturday night, bathed her dogs, drank a glass of wine, I called Mom one last time before hitting the hay to check in on her and assure her that her beloved puppies were well cared for and all was good.

As per habit, I turned off the volume on my iPhone. I’m a firm believer that there should be no technology interruptions that would impede my sleep.

So I missed my mother’s frantic call just before 7am. There were only two words on that message and I can hear them still.

“Emergency… Emergency…”

Then the line goes dead. My sister had been texting me since about 6am – she had tried to call Mom and couldn’t get through. She finally got to the nurse’s desk and found out Mom was being rushed to surgery. Her call to me meant she was scared and needed me.

I started to panic. It took just a couple minutes to reach her doctor who told me she woke around 4am with pain in her left hand and then no feeling. They determined she had developed a blood clot and it traveled to her left arm where it lodged in one of the smaller veins. They’d have to perform emergency surgery to remove the clot. They had her prepped and ready for the operating room.

I didn’t bother showering – just brushed my teeth and took off for the hospital. Inside, my inner self was pacing and confused. Outside, I appeared calm. Once again, I wasn’t there when she needed me. Had my phone been on, I would have been able to tell her it was going to be okay, that I was on my way, that we were in this together and I would take care of her. But instead, her call was met with my voicemail. She was alone.

This is now Sunday, December 22. My sister, who lives in Southern California, and I kept in constant contact during surgery. When the vascular surgeon was done, he came out and talked to me. He filled in the details behind what happened over night, and what they needed to do to remove the clot. Bottom line, the surgery went very well, Mom was doing well. They would be moving her shortly out of recovery and into the Intensive Care Unit.

I’m not a religious person but I believe in a higher being and purpose to life. I posted a message on my Facebook page asking all my friends to pray for my mother, many of whom knew her personally. The outpouring of love and support for us was a huge comfort.

Just before they settled Mom into her ICU room, the surgeon came back to talk to me. He felt it best to keep Mom intubated and sedated, given the congestive heart failure. She was on a ventilator. He explained the aggressive therapies that were needed. Careful balance of Lasix to remove the fluids, and Heparin to keep the blood flowing. The catch 22 is that the more the blood flows, the more fluids can be retained. And in places like her lungs. So the ventilator was a good idea – until I saw her.

Mom was sedated but not asleep. She kept trying to remove the vent, which is a huge foreign tube inserted into her mouth and down her throat. It’s held on her face with clamps. Her wrists are restrained. She writhes in bed and cannot make any sounds whatsoever. I’m beyond myself at this point. I call her nurse to up the sedation – I refuse to see her uncomfortable. The doctor comes in and advises me that in elderly patients, after general anesthesia, to be sedated more fully will make it harder for her to recover from the dementia.

Wait… What?

He was trying to explain that she could have serious complications with her brain. Coming out of a traumatic event, and being in the ICU, where there is sensory and light/dark deprivation, constant interruptions to sleeping patterns, and stress, puts a strain on the brain and causes delirium. It might take her longer to recover.

“I think the risk/benefit here is worth it. I want her as comfortable as possible.” I also may have mentioned that I was her healthcare agent and that since she couldn’t state her wishes, I would. She would NOT want to be lightly sedated with a tube down her throat.

The vent would have to remain in for 24 hours, enough time for her body to begin the surgery recovery. I called Sandy and Greg (my siblings) and delivered the news. Up to this point, we all had expected a couple days inpatient to stabilize her – now with the surgery, and intubation, this was even more serious and the sibs should come. My sister would drive up first thing Monday morning and my brother would fly in Tuesday morning.

I hated seeing my mother like that. The image of her discomfort and lying helplessly in the ICU on a ventilator will forever be etched into my brain. I left that night at the urging of the ICU nurses who reminded me that I had to take care of myself as well. The doctors would remove the vent around 8a Monday. I wanted to be there as she was coming out of the sedation to keep her calm. Everything the nurses explained about the process had me worried she’d be out of her mind with fear.

I didn’t sleep much again that night, but being in her house, with her dogs, her things, made me feel like she was there with me. I woke early, showered, and was back in the ICU by 7:30am. Mom was coming out of the sedation state and aware for the first time of her surroundings. She struggled against her restraints. I calmly and gently explained what was going on, to keep her relaxed, and that we needed her calm and once she was fully awake, we’d be able to remove that pesky ventilator. Mom’s agitation grew.

The nurses gently asked me to leave the room, that I might be making it more scary for her. I agreed – I just wanted Mom to be okay. I went back in to tell Mom they needed me to sign some papers, and she tried to tell me something. Her eyes were frantic and she mouthed words around the tube. I couldn’t understand them. The nurses couldn’t either. I told her that in just a few minutes, she’d be able to tell me anything and everything – that I’d be right back.

After a short time, they let me back in the room. I greeted Mom with a kiss, hug and an “I love you so much”. I asked her what she was trying to tell me.

She said “I told you I didn’t want you to leave me.” I teared up, but knew I had to in order for the staff to do their jobs. I simply apologized and told her I will always be here for her. That’s when she told me what she knew. She said “I’m dying. You have to listen to me. I’m dying.”

I scoffed at that. “Of course you aren’t my love. The surgery was a huge success! You are going to be just fine!!”

But she knew better. If only I had listened. Paid attention more.

96 hours later, she’d be dead.

Halloween 2009 - being silly

Halloween 2009 – being silly