I thought –

It snowed on Thanksgiving. It’s not that unusual to get snow in the Mojave Desert especially in the “high” desert, which only means we’re at a higher elevation than the low desert. We’re also considered a valley due to the nearby mountain ranges. The day after a snowfall, we all turn our eyes to the mountains; it’s a glorious backdrop to the sagebrush, tumbleweeds, and Joshua Trees.

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The day began with rain and sleet pelting the carport and window awnings, it was maddening. I yelled, “It’s raining!” Then realized I was only telling my cat, who just ignored me. Local friends were posting photos of snow and I was getting jealous. I kept getting up to check, even though the racket was telltale enough. Then the silence came, and the TV had to be turned down. I glanced at the one window I can see from my chair in the TV room. “It’s snowing!” Again, the cat ignored me.

I opened the front door and stepped outside. I should call Mom to see if it’s snowing at her house, I thought, while standing on the porch of her former home. What a mind-fuck. There were thoughts like this all day. I went to my niece’s for Thanksgiving; she and her husband are vegan. I remember explaining veganism to my mother. She never really understood the concept. I made about a gallon of gravy with about a pound of mushrooms and remembered that she didn’t like raw mushrooms on salad or pizza, yet she loved sautéed garlic mushrooms with spaghetti. I’d like to think that she would’ve enjoyed my gravy.

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Mom’s China hutch is now in my niece’s dining room. That’s weird. I was tempted to pull open a drawer, hoping to find it full of 2019 prescription receipts for the “tax man” (even though it’s a woman). I wish she could’ve eaten at my niece’s beautiful new dining table.

This was the first family-centric holiday since her passing. I was silently joking with myself about the things I was grateful for this year – I’m grateful I won’t have to deal with her wheelchair in the snow or on the icy driveway. I’m grateful I don’t have to prepare her plate and cut up her food. I’m grateful I won’t have to take her to the bathroom. I’m grateful she isn’t nagging me about… everything. I’m grateful I can stay after dessert and play a board game with the family.

I said my good-byes, then cried all the way home. Bullshit, I wasn’t grateful for any of those things.

Today is December 1st – on this day three years ago, my mother had out-of-town guests who stopped by to have lunch with us. I know this because Facebook Memories showed me the photo I posted. There’s my mother, standing rather straight, unaided by a cane or walker. (I’m sure one or the other was nearby.) I find myself examining photos closely and dissecting everything – I wasn’t living with her then. There’s already a poinsettia? Are those Thanksgiving cards or Christmas cards in the background? She looks quite healthy and strong. Look at that huge smile, she’s so happy to see her friend. Her hair looks recently set. She’s wearing lots of bling, along with her fall-alert necklace. – At the time I took the photo, I remember being bothered that her friend was backlit by the window, and that’s about all I noticed.

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I’ve always liked the Facebook Memories feature, especially since I joined in 2007. Their databank holds twelve years of my life’s highs and lows, opinions, photos, and memories. If you close your account, everything remains. I know this because I closed my other (birth name) account and when I brought it back online it was as if I hadn’t left – every comment and photo was still there. The vast depth of Facebook’s data is sometimes terrifying, and I probably shouldn’t love it as much as I do.

Then there’s this blog, which I may not have written if it weren’t for Facebook. I had another personal blog when I began a weight-loss journey; it was as short-lived as my weight loss. Sharing our daily struggles and conversations on my timeline led me to create a personal blog; my friends seemed somewhat interested and generally amused. I also have a WordPress version for my non-Facebook friends and family members. I send them the link when I update it. I think I have two followers on WordPress and they seldom comment. I’ve noticed over the years that my FB followers don’t comment as much as they used to. (That’s not a passive-aggressive plea, honest.) I understand, really, how many times can someone post, “Sorry, hang in there. You’re doing great. *hugs*” And I’ve pretty much stopped replying to comments because how many times can I reply, “Thanks for your support.” It’s a bit monotonous. I’m happy to know a handful of people are reading it and a few of them have been helped by following our journey.

Is this still “A Daughter’s Diary into Dementia” or should I add “… and Death” to the subtitle? I don’t know, I really don’t. Every day I fight thoughts and actions formed from muscle memory. You don’t realize how regimented your life is until it stops. Done. My life went from structured to chaotic in one day, in one passing moment. From the time I wake up, it’s painfully obvious that I have no job, no direction, no schedule, no purpose, no mother.

I’m trying to focus on 2020. The master bedroom is ready to rent out. I’ve updated my resumé to include “Caregiver: May 2015 – October 2019.” I’m ready to go back to work, and definitely ready to make some money to resurrect my comatose credit score. Ha – I just realized I used ‘focus’ and ‘2020’ in the same sentence. I hope to have 20/20 vision when looking to the future.

Precious Moments

A month has passed since Mom ‘expired.’ For the rest of my life, the number 17 (and the 17th) will remind me of my mother’s expiration date. It’s a prime number. I’ve always had a thing for prime numbers; probably because my birthdate is a double prime: 7-11. Mom told me her delivery date had been the 13th, another prime. I don’t think she understood my explanation of prime numbers, which led me to wonder about her education. She never helped me with homework, and she never asked me about it. But she paid the bills and balanced the checkbook without a calculator and was a cashier back when the register didn’t tell you how much change to give back to the customer. She was always good at math. Prime, composite, natural, cardinal, and ordinal numbers meant nothing to her, nor should they.

We had very little in common culturally. Mom didn’t read books, listen to music, watch documentaries or crime shows. She liked a lot of TV shows that I refused to watch with her, like soap operas, game shows, reality TV, and entertainment (gossip) shows. The only ones we religiously watched together (besides Downton Abbey) were The Voice and American Idol. She was impressed that I usually knew the songs and liked it when I sang along.

I became a little (extremely) obsessed with Maddie Poppe on American Idol. I showed Mom how to vote for Maddie on my phone, she was thrilled to do it. We celebrated her victory and didn’t miss any of her post-win appearances. Mom always recognized when it was Maddie playing in the car. Prior to that, she could only identify Adele and Kelly Clarkson. And it was super cute when she did, “That’s Adele, isn’t it? I knew it. I love Adele!” Like mother, like daughter.

When I was putting together the slideshow, I really wanted to set it to meaningful music. My digital music library has about 15,000 songs – I came up with three, maybe four, that seemed appropriate. I tried to use a Maddie Poppe song, but none of them worked, only one came close. I finally gave up trying to figure it out, it was frustrating and exhausting. I chose a generic jingle-type song that looped for forty minutes. The slideshow has been highly praised, so I’ve stopped fretting about its low production quality.

—> Detour, 17 hours later…

I went on (and on, for a thousand words) describing the entire Mumorial from beginning to end, flaws and all. The more I reread it and edited it, the more it bothered and bored me. I decided to save it for another day, or never. Instead, I had brunch with a friend today and while we were talking, I realized I wanted to share something else.

So, going back to (my obsession) Maddie Poppe – she released a couple of Christmas songs last year that Mom really enjoyed. I played them at least once a day throughout the season. When Maddie’s album dropped in May, Mom was bedridden but still quite lucid. I played it for her, and she said, “She’s a big star now. I’m so glad I voted for her.” The fact that she remembered voting was a surprisingly precious memory that I had forgotten. I might have cried.

Then today, during brunch, I recalled that moment again. I’ve been reminded of many others since her passing –

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• We woke up in the middle of the night to watch Prince Harry’s wedding. We had scones and tea, which she drank from her “Kiss Me I’m English” mug. I fashioned a fascinator from a huge gift bow.

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• She called her brother Ernie on his birthday and swung her leg over the arm of the chair. It was so out-of-character that I snuck a photo.

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• The first time Elly got on Mom’s lap, she was equal parts excited and terrified.

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• When she ‘fancied a pint’ at Red Robin.

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• I made English Sunday dinner for her, complete with Yorkshire Pudding. She was bedridden at the time and I beat myself up for not making it earlier when she could sit at the table and feed herself.

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• I was messing around with Snapchat on Halloween and put a black cat on her head.

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• We ate Tres Leches cake on my birthday and the insanely blue frosting turned our tongues and lips blue, even her teeth were blue. She thought it was hilarious and let me take a photo.

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• Elly used to hang out on Mom’s walker waiting for a ride.

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According to Facebook Memories, I posted this on November 17, 2017, “For those of you who don’t follow my personal blog, Sundown in the Desert, I have thrown in the towel on a few personal battles and I’m moving in with my mother. I think, in the long run, it will benefit both of us. Thank you for your support.”

Mutually beneficial precious moments ~

This time

Reality check: I’ve been manic since my mom died. Absolutely manic. Within hours of her death, I spun around her bedroom with a roll of trash bags scooping up everything in my path, like the cartoon Tasmanian Devil. Then I spent every moment, day and night, planning her memorial celebration which I coined, “Mumorial.” That’s another story.

An alarm has been going off in my head. “I have to rent out this room!” It was completely dismantled, spackled, and painted within the first week, only the dresser, nightstand, and a chair remained. I got a lead on Traveling Nurses; they stay for 13 weeks then move on. Perfect! Now I needed to furnish the room. I began obsessing, shopping and decorating. I bought a bed frame, mattress, bedding, pillows, towels, a desk, clock, microwave, coffee maker… manic buying. Shopping therapy. And elephant décor, yes, elephants.

This had been the plan last year when she went into a care facility: I would rent out her room and get a job. Solid plan. I sold her bedroom furniture and cleaned out the bathroom in preparation. She grumbled about wanting to come home. Even though I cleared out her closet, sold her excess clothing and shoes; I knew she’d come home. When I posted her collectibles to sell online and had a joint yard sale – I knew she was unhappy at the facility. I applied for jobs and went on interviews. My prospects were disheartening; I failed to land a position. Not even Target wanted a middle-aged, obese, over-qualified shelf stocker. Mom knew I was depressed; we were both depressed.

It was one year ago, November. We ate our Thanksgiving meal at the care facility, then she packed her bags and came home. This wasn’t the first time, but it was the last. This time, I have to rent out the room. This time, I have to get a job. This time – she’s not coming home.

I fell off a stepstool the other day while hanging a picture. I twisted my back, landed on my hip, cut my finger, and bit my lip. I sat on the floor trying not to drip blood on the carpet and wept. Grief finally took hold, three weeks after her death. It’s no longer Mom’s bedroom. She’s not going to get mad at the blood on the carpet. It’s not her house. She’s not out there somewhere waiting to come home… to save me.

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Regrets, I’ve had a few…

I recently told a close friend about an email I wrote but never sent. It’s still in my ‘Drafts’ box. In it, I said, “Moving back to my hometown to help my mother was a colossal mistake and has become one of my deepest regrets.” That was November 2017 – I had been precariously hanging on since arriving in May 2015. I now had no income, no savings, no unemployment benefits, no health insurance, major dental issues, maxed out every credit card, sold my car to pay the rent, tapped out a personal loan, and was about to be evicted from my apartment.

Somehow I survived my private mental breakdown (a story for another time) and emerged on the other side with a plan to move forward. I sat down with my mother and told her the details of my situation. “Let me move into your spare bedroom and pay me to be your caregiver.” She agreed. Regret soon shifted to shame. I had to file for bankruptcy to survive on $1000 a month. I wallowed in depression and defeat. I was going through the motions – acting, like Oscar-worthy acting. I didn’t really want to be her full-time caregiver, but I followed the script and hit my marks. As they say in recovery, “Fake it ‘til you make it.”

My mother’s gratitude was obvious, joyful in fact, and surprising. It boosted my spirits. She enjoyed my cooking, praised me to her friends and family, trusted my judgment, and allowed me some latitude to make changes in her home. Caring for her gave my life purpose and meaning. I settled in for the long haul. We had a daily schedule and stuck to it. We were finally in sync, actually agreeing. We watched TV together, laughed, joked, and cried. We talked about more than the weather and celebrity gossip; I asked hard questions and she released fifty-year-old secrets to me.

As her health deteriorated and our trips to the Emergency Room became more frequent, it was clear to both of us that she needed to go into hospice care. It was time for professionals to supplement my care of her. Within a few weeks of entering hospice, two things happened: her ex-husband (married thirty-four years) passed away and then she got pneumonia. I believe the two events are connected; her depression over his death further compromised her immune system. She went to bed to recover, which she did, but she never stood again. She was bedridden.

Our relationship took yet another turn. It was one thing to wash my mom’s back and feet in the shower, she washed the rest of her body – it was quite another thing to change her diaper. We were both embarrassed, both humiliated. And I have a super-sensitive gag reflex. Once again, I faked it. I knew what to do and how to do it; I disconnected my brain and went through the motions as clinically as possible.

Within a few months, I was feeding her and holding drinks as she sipped through a straw. Her regression was in full force. I was the parent; she was the child – a toddler, actually. I brushed her teeth, washed her face, moisturized her skin, trimmed and painted her nails, swabbed her ears… everything she could no longer do. I set up a camera in her room so I could watch her when I was out of the house or waiting for her to wake up. We could no longer have real conversations. She talked almost nonstop, but dementia and Parkinson’s had taken over most of her mind. She’d answer simple questions if I could get her full attention. She spent most of the day sleeping, staring at the television or talking to hallucinations. I was losing her; she was slipping away. I actually yearned for her to make a snarky comment about my hair.

About three weeks before passing she was taken off all medications, her withdrawal was quick and brutal. Her body reacted as expected, but her mind cleared up – which was shocking. We had one of our last true conversations. She had no recollection of the previous six months; she was surprised to be bedridden and wearing a diaper. We talked for hours, she ate a hearty meal, then fell asleep. When she awoke a few hours later, her eyes were vacant, she was gone again. I retreated to my bedroom and sobbed. I began mourning her, grieving the loss of the mother I had just gotten to know – and love.

In her final days, she could hear but not speak, and her eyes remained closed most of the time. So, I talked a lot. What I said, more than anything else, was, “I love you.” And I meant it. It was not a reflex response to her saying it to me, like “Love you, too!” Not since I was in love, many years ago, have I declared my love with a fully open heart.

On her last day, in her last hour, I recanted that email. “Coming home and taking care of you was the best decision I have ever made in my life. I will never regret it.”

“This is Jean’s daughter… with sad news.”

At some time between 12:50 and 1:25 PM (PST), Thursday, October 17th, my mother took her final breath. I know that’s the timeframe because that’s when I was out of the house for a one o’clock appointment. I knew in my gut that she would stop breathing while I was gone. In fact, I think she was waiting for me to leave. Maybe she wanted some privacy since I’d been by her side all morning, staring at her. Most people will say that she was sparing me from seeing her departure. But if I had to guess the real reason, she wanted me to leave so she could be lifted up by friends, family, and her ex-husband. Maybe I was in the way, holding up the process.

The weekend had been challenging, more so for me than Mom. She couldn’t eat at all; I was giving her tiny amounts of liquid with a syringe a few times an hour. I never stopped talking to her, asking her questions, “Are you comfortable? Are you hungry? Do you want applesauce or pudding?” I felt guilty enough giving her the morphine-lorazepam-Pedialyte cocktail, but now she was starving to death while in my care? No, she had to eat something. One tiny spoonful of warm protein bar mash, that’s all I wanted her to eat. I put the spoon on the edge of her bottom lip, she reflexively allowed it inside. I got the quarter-ounce glob past her lips – it just sat there. She made no attempt to move it over her tongue, through her mouth, or swallow it. Now I had to clear it out of her mouth with a damp sponge on a stick, so she wouldn’t choke on it. That’s it. The last food to pass her lips was a lemon-flavored protein bar made into a warm pasty goo.

She was no longer talking or opening her eyes. She just slept, but it didn’t look like slumber. You know when you watch someone sleeping and they look so sweet and peaceful, and you can tell when they’re dreaming in a REM state. That’s not what was happening, she didn’t just fall asleep, “Goodnight, sweet dreams.” No, everything about her lying there with her eyes closed and mouth hanging open looked wrong, stiff, half-dead. I began telling her that it’s okay to leave, she could go now if she was ready. I said stupid things like, “Don’t let the door hit you in the ass.” “Are you still here? I thought I told you to leave.” I hoped she’d open her eyes one last time and tell me to stop being a smartass.

On Monday things had shifted to another phase. She no longer responded to sound or movement. I had come up with several techniques for getting her attention and/or a reaction. None of them were working. I was stroking her hair which usually made her frown, a few months ago she would’ve snapped, “Stop touching my bloody hair!” Now I could rake my fingers through it as much as I wanted, and she couldn’t care less. There was zero response to my touching her. I held a limp hand that no longer curled around mine. I rubbed her shoulder and the base of her neck; her muscle tone didn’t feel right, it was too firm. Nothing felt right. I was going to call hospice and ask the on-call nurse to come out. But I took her vitals instead and decided I could wait for her regularly scheduled nurse to come.

Tuesday morning, I texted the nurse earlier than I normally would to ask if she’d make Mom her first stop of the day. Also, the HHA (home health aide) came early to give Mom a bath. They both examined her thoroughly and came to the same conclusion – Mom was beginning to transition; she would be gone in the next 48-72 hours. The nurse told me the signs they were seeing (which I had already noticed) and what was to come. She texted the hospice office and the Social Worker scheduled a visit.

Tuesday afternoon, I was watching Downton Abbey, working on a memorial slideshow, and getting choked up. This is it. She’s going this time. For real folks, this is not a drill. This is not a call to 9-1-1 or another trip to the ER. There was no uncertainty. Finally, after four and a half years, we had reached our final destination. I’ve lived the last two years with my mother, sleeping on a twin bed in a tiny spare room and… I kinda loved it. And damn it, I loved her and already missed her company. How did that happen?! How could I possibly miss the voice that had criticized me so harshly and so often? My emotions caught up with me. I called my niece and she came straight over. The second I opened the door and reached for a hug, I lost control and ugly-cried. We walked back to the bedroom and talked to Mom. My niece told her she loved her and said goodbye to her grandmother.

Wednesday was actually easier. Now that I had accepted it and cried about it, I was more mentally prepared. I wouldn’t consider feeding her; she wasn’t going to starve, she was just going to die. I swabbed her mouth, applied Chapstick to her lips, and gave her a few drops of Pedialyte throughout the day. I didn’t give her morphine or lorazepam, her body had shut down, she was in no pain or discomfort. Her diaper remained clean; I didn’t want to disturb her comfort to roll her around the bed. Even if she urinated it wouldn’t be more than a dribble. Her hair had been washed the day before, it was soft and fluffy. I brushed it out and styled it as best I could. She was wearing a heather grey t-shirt with blue, pink and purple butterflies on it. She was going to die in that shirt. If I had thought about it the day before I’d have dressed her in the hummingbird shirt, her favorite.

The hospice Social Worker was visibly saddened at the sight of my mother. They had a sweet British connection. She brought us Bisto gravy and McVities Digestives. They chatted about all things English. When I told her I made Yorkshire Pudding or Shepherd’s Pie, she knew what it was without explanation. Now she held Mom’s hand and bid her farewell. She asked if I wanted a pastor or priest. “No thanks, maybe some Patrón though.”

I didn’t sleep much Wednesday night and checked on Mom many times. I made coffee around four o’clock. I texted the HHA and canceled her scheduled Thursday bath. There was really no need, no point. The nurse sent a text to say she was coming earlier than usual. Within ten minutes I was showered and dressed. Mom was struggling to breathe; her skin was changing color and texture, she was very warm. I put some of her perfume (White Diamonds) in a defuser to combat a new odor that was filling the bedroom. And on this, her final day, her eyes fluttered open. One was half open, the other was a just a slit, but I could see her milky grey-green irises. They had transformed over the last decade from coppery-green hazel to light sage green to nearly grey, lifeless. They were unfocused, I thought she might be blind. She blinked when I reached over to stroke her forehead, so she must’ve seen shadows. I leaned into her line of sight and started talking. I should’ve recorded it because I have no idea what I said. I know I named everyone I could think of who was on the other side waiting for her, she would not be alone. Her ‘dear old mum’ as she called my grandmother, her elder sister and brother, a nephew who had died tragically young, her husband of thirty-four years, and even my father, her first husband. I named cats and dogs too. They were all waiting for her to join them. “I know how you hate to make people wait.”

The nurse arrived and took Mom’s vitals, her pulse was racing at 108 bpm, we could see the pacemaker fluttering beneath her skin. She had a slight fever (99.6F/37.6C) that would continue to rise. The nurse sat down, which she never does, and said she’d stay awhile. Mom suddenly gulped; we stared at her, waiting. A few seconds passed before she took a sharp intake of breath, complete with the ‘death rattle’. We joked that she was not going to die with both of us staring at her. She was too proper for that. The nurse had to move on to her next patient and said to call the office if I wanted the on-call nurse to come over. I didn’t.

I had a one o’clock appointment at the mortuary to make pre-arrangements, rather than doing the paperwork afterward. I considered canceling, then decided to tell Mom that I was stepping out for a little while. “If you want to leave while I’m gone… just know that I love you and I regret nothing.” She blinked a few times as if she understood. I kissed her hot forehead, now burning up at 103F/39.4C. I got a clean washcloth and soaked it in cold water. I laid it over her forehead and eyes, so she’d close them. I was choking, almost gagging.

I pulled out of the driveway at 12:50 and headed to the mortuary. I probably shouldn’t be driving, I thought. What if I get into an accident and no one knows that Mom’s at home alone – dead. I was wiping my eyes and nose; I couldn’t see very well. I realized Nanci Griffith was singing. I turned up the volume and tried to sing along. I was completely distracted and probably dangerous. I pulled up to a notorious four-way stop about two miles from home. It was known as “the four-way stop where Mom totaled her car” and would be for the rest of my life.

I checked-in at the mortuary and was overcome with guilt for leaving her. My mind was swirling with thoughts of her death, ‘She’s dying right now, alone. She wanted me to leave, I had to give her peace and privacy. I bet she died while I was at that fucking four-way stop thinking of her damn accident.’ I wanted to flee but didn’t. I pushed through, I signed here and initialed there. I was unable to focus on the pile of poorly copied forms. I was judging their quality and layout. I love designing forms, I could do much better. Why didn’t they have a damn computer or tablet for fuck’s sake?! And I was irritated by some of the ludicrous questions. Her highest grade level? What the fuck does that have to do with anything?! I had had enough. My grief and guilt were turning to rage as I sat there. If I didn’t leave, I might explode on this poor woman who was politely doing her job. I said I had to go, that I had a feeling my mother was passing. It was more than a feeling. I knew. I knew she was gone. I was home within seven minutes.

When I opened the back door I immediately smelled ‘that’ smell. I walked to the bedroom doorway and stopped. Her face was no longer pink. Her skin pallor shocked me, she was already a greyish yellow, kind of waxy looking. I came in and removed the damp washcloth from her forehead. The fever was gone, of course, but she wasn’t cold yet. I removed her hearing aid and the cannula, then turned off the oxygen machine. I was operating on autopilot. I tried to close her mouth as the nurse had suggested, it was impossible. I left the room and called my niece. I’m not sure what I said, “She’s gone.” or “Mom’s dead.” I don’t know. Then I called the hospice agency. I couldn’t make another call, I couldn’t speak. I texted a few close friends.

I went back into Mom’s bedroom and took one last photo of her. I had taken one that morning, I’d compare them later. Morbid much? Maybe. But I also have photos of my father in his casket, and my last cat as she passed over. My living cat was wandering around the bed, looking like she might jump on it. I picked her up and retreated to the living room. I unlocked the front door and sat down. My niece wouldn’t take long – you’re never far away in a small town. Mom’s regular nurse texted that she’d come as soon as she finished with her current patient. I cried with relief, actually happy for a moment. This nurse had been with Mom since the beginning of her hospice care when she was still walking with a walker, still sassy, funny, and charming. She had watched over every step of Mom’s decline and when the agency shuffled the nursing staff around, I fought to get her back. We had been on this road together and this would be the last time I saw her.

My niece arrived first; we hugged it out, then talked about contacting the rest of the family. She worked with her mother and mother-in-law at the family business. They’d figure it out pretty quickly if they realized she’d gone for the day. I called my brother. He was on vacation in Florida, about as far from California as you can get. I was brief and held back a hundred words. My niece and I debated on who should call my other niece, her older sister. There’s a much longer story there, some sadness, lots of regret, confusion, and a bit of anger. It was my job, my duty, so I made the call. And that’s it. That’s the size of our immediate family – my brother and his two daughters. I was grateful for that, knowing I had a long list of her friends to call, then Mom’s siblings in the UK, but they would have to wait until Friday because it was almost 10 PM in England.

The nurse took Mom’s vitals and declared time of death. Done. It’s official. She sat at the dining room table and called the mortuary. They asked a bunch of questions; my mom wasn’t in their system yet because the paperwork was probably still sitting where I had left it. She used the word “expired” instead of deceased or passed. ‘Today is my mother’s expiration date.’ I thought. The nurse texted all the appropriate hospice staff, began charting on her tablet, and wrote in Mom’s hospice binder, marking her last visit.

End of care.

Much more has happened between Thursday afternoon and now, Saturday morning. I’ve had meals with family and friends, and a few margaritas. I have mini-carnations in a vase on the dining table, from an old and very dear friend. I’ve had calls and texts from other hospice staff with fond affection for my mother and praise for my care of her. I woke up on Friday morning and made the calls to England. Once her siblings and two nephews were informed, I posted a favorite photo of my mother on Facebook and announced her passing. I was overwhelmed with posts, private messages, calls, and texts, even a lone email. I found out that a distant friend had unexpectedly lost her mother in June. And a friend in Colorado had just lost her thirty-year-old daughter last month. You just don’t know, do you?

I went through Mom’s well-worn address book filled with her familiar handwriting, notes, scribbles, and names scratched out. The newer entries were shaky and misspelled. I called her friends; many I have never met in person. “This is Jean’s daughter… with sad news.”

The hospital bed and medical equipment are gone. I brought a roll of black bags into her room and trashed nearly everything. I did the same in her bathroom – three drawers and two cupboards full of lipstick, make-up, nail polish, creams and lotions, combs and brushes, ancient rollers, toothbrush and paste, and who knows what all. There were many packages of pull-ups, diapers, and wipes, both open and sealed. In all, four large trash bags filled with the last pieces of her existence, her ‘face’, her public persona, and her DNA – all headed for the dumpster.

The following slideshow took months to compile, from our amassed photo collection, passports, polaroids from work, driver licenses, and even her ‘green card.’ I tried to come up with appropriate music to play with it, but my OCD took the reins and I couldn’t choose a dozen songs out of the 15,000 in my music library. It begins in England, 1935, she was two years old. It ends in early 2019, prior to hospice care. She had been to the hairdresser and had a pedicure, then we ate fish & chips for lunch. We had many days like that: hair, nails, lunch. Four years ago, I was annoyed by the bother of it all. But I gradually came to enjoy, if not love, these days ‘out and about’ as she’d say.

 

The Letting Go

What ‘Comfort Care’ means to us ~

Sleep, an insane amount of sleep – I mentioned in a previous post that my mother’s sleeping 18-20 hours a day. It’s hard to imagine, but she slept 28 hours between Tuesday morning and Wednesday afternoon. Her breathing was so shallow that I couldn’t see any chest movement. I had to accept the warmth of her skin as an indicator of life.

Eating is nearly impossible – Thursday, she was alert enough to say she was hungry. Well, she didn’t actually ‘say’ it, she nodded when I asked if she was hungry. She managed to eat a few ounces of oatmeal. I was impressed and praised her. It had been a while since she’d eaten. In the time it took me to go to the kitchen to get some juice, she had vomited every single oat. The trauma of vomiting put her back to sleep for about ten hours.

Drinking is hit or miss – She’s been drinking through straws for six months. (I recently found soft rubber straws, similar to tubing. Six straws come with two long-handle brushes.) If she doesn’t respond or tries to chew the straw, I have to use a syringe. Giving someone liquids one milliliter at a time is tedious. I received syringes with the liquid morphine and lorazepam, I also use them for Pedialyte, glucose, water, and warm tea. It dribbles into her mouth just enough to wet her tongue and gums. It takes about three full syringes before she reacts and swallows. Like I said – tedious.

Diapering is better and worse – No intake means no output. Yay, no crappy nappies! Right? Well, she’s dehydrated, so her urine is unpleasant, to put it nicely. More often than not, I change her in her sleep. She reflexively tenses her entire body, her legs defensively clamp shut, her arms flail and shake with Parkinson’s. I try to change her as fast as I can, I’ve become an old pro. Some days I don’t hear her voice until I roll her over and she moans, “Owwwww.”

Morphine is a necessary evil – I told her, two weeks ago today, that we were switching to ‘liquid medicine’ since she could no longer swallow tablets. Two weeks without her usual meds, some she’s taken for over a decade, has ranged from interesting to terrifying. Every symptom is met with morphine. Any sign of pain – morphine. Elevated blood pressure – morphine. Excessive shaking from Parkinson’s – morphine. I manage her diabetes with glucose gel mixed with Pedialyte; administered one milliliter at a time.

Conversation is non-existant – One or two words a day is a treat. A family friend visited this week. She held mom’s hand and talked nonstop for about fifteen minutes before mom looked at her, smiled and said hello. I can ask basic questions, but I have to ask repeatedly before I get a response; which ranges from a blink to a nod to a single mumbled word. I think she uttered her last, “I love you,” over a week ago.

The guilt of letting go – At first, I almost rejoiced. Almost. Her drug-induced slumber allows me to get out of the house. I can run more errands, go out to eat with friends, and see movies. Then the reality hit me that she could breathe her last breath while I was stuffing my face with chile rellenos. Despite everything I’ve sacrificed over the last four and a half years, or what I do for her day and night – if she dies alone I will never forgive myself.

Comfort Care in Autumn

Hospice finally ordered the Comfort Care Kit. Mom had her first dose of morphine over the weekend. Not taking her regular meds has been stressful, but not quite as stressful as trying to give them to her. She can’t always swallow properly, sometimes choking or gagging. I’ve fed them to her with applesauce, pudding or oatmeal, crushed them into juice, dissolved them into coffee – everything I could think of. Now, without them, her body is doing its own thing. From diabetes to high blood pressure, an irregular heartbeat to neuropathy, dementia to Parkinson’s – all of her normally controlled symptoms are exacerbated and otherwise running amuck.

She became shockingly lucid when she first came off the meds. We talked on and off for hours. She asked me how long she’d been in bed and could she walk if she tried? She wanted to know who had come to visit her, and why some had not. I told her about her birthday and all the cards and flowers she received, then showed her some of my photos from my trip to Palm Springs. We drank tea and ate her favorite English biscuits. Then she asked, “Does the doctor know when I’m was going to die?”

Needless to say, I stopped enjoying our conversation at that point. I became as diplomatic and vague as a hospice nurse. I think she knew that I didn’t want to answer, even if I had had an answer to give. “It’ll all be over soon, I expect,” she said to me, letting me off the hook.

As expected in Autumn, the temps are dropping overnight. I’ve turned off the ceiling fans and air conditioner, but haven’t needed the heater yet. This morning mom was chilly, conveyed with the statement. “Am I in the bloody garage?” I pulled her quilted bedspread up to her neck and my cat got comfortable across her legs. Mom looked at the cat, then at me. “She better not bite me.” Then she looked over my shoulder and dementia took the conversation in another direction, to another person.

I’ve explained that I don’t want to post photos of my mother that are too personal or lack dignity, but I took this with the low-res (480dpi) granny-cam and I kinda like its grainy quality. It’s not flattering, no current photos would be, but it’s our reality. Elly (my cat) stayed on the bed longer than usual. She was either cold or knows that mom needs some extra comfort… or both.fullsizeoutput_12d4