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.

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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

Crashing

I’ve been putting this off. I’ve wanted to write about the craziness of the Estate Sale and moving my stuff out of a storage unit with nearly two years of dust on it. But that’s too much about me, enough about me. I’m not in the mood to talk about me and my feelings and plans for the future.

Mom’s condition is technically the same – declining is declining. Every day she seems a bit worse than the day before. Today was especially bad.

She woke up around 7:00, kind of coherent and a bit chatty, even though I can’t understand her. I told her it was Sunday, the last day of summer. Yes, autumn begins tomorrow. “Where the hell did the summer go?” She asked with her wide eyes. I nodded, “I know, this year is flying by.”

She fell back to sleep after her diaper change, any movement exhausts her. She didn’t arouse until 9:00. She happily, if not hungrily, consumed a bowl of oatmeal with peaches, and took her morning meds with orange juice. No issues. All good.

She fell asleep again until 11:30-ish when my niece and her family came to visit. We woke her up and she was quite pleased to see them; communicated with smiles and glittery eyes. Mom can’t really speak; she whispers, mouths and mumbles. We indulged her by nodding and listening and smiling. She even got a hug from her great-granddaughter and puckered her lips for an air kiss. My cat got on the bed and acted foolish for our amusement. By all accounts, it was a nice visit. Mom fell back to sleep so I went out to lunch with my family.

She was still asleep when I returned. I woke her up to eat some applesauce and drink some juice because she felt clammy – a sign that her blood sugar was crashing. I hoped this would perk her up, like a shot of adrenaline. It did not. She fell asleep again.

I woke her at dinner time, she was still a bit clammy, but not sweaty. She was alert enough to eat some crushed pineapple; I was still determined to raise her blood sugar. I used a NutriBullet to crush a glucose tablet in some orange juice, she drank about five ounces, and it wasn’t easy. She still did not perk up.

I debated whether or not to have hospice send over the on-call nurse. But what would they actually do? They don’t take life-saving measures. No one is going to attach IV fluids to mom’s arm. They aren’t going to prolong the inevitable. She’s been declining for months, we’re all waiting for her to turn the corner and not come back. If Mom had been in good health, the applesauce, pineapple, and orange juice mixed with a glucose tablet would’ve brought her back around in minutes, fifteen at the most. I’ve watched her come back from a diabetic crash a few times: sugar is miraculous.

It’s almost 11:30, way past my bedtime. I’m starting to doze off. I’ve checked on her a few dozen times tonight. She still feels a bit clammy. I can’t keep forcing juice down her throat, she doesn’t always swallow correctly and often gags or chokes. I want her to leave in her sleep, not by aspirating low-acid pulp-free orange juice.

She currently has her head back and mouth hanging open. I can’t tell you how tempted I am to pop a white chocolate Lindor truffle into her gaping mouth. Seriously, I unwrapped one… then I ate it.

Goodnight ~

The Now

We’ve been home a week since our five day respite. Mom has completely forgotten she ever left her bed; pretty sure she forgot the second she got back into it. And, as much as I loved my cute mid-mod Palm Springs motel room, I couldn’t wait to get back into my own bed. I feel much better, lighter, more alive. I’m energized to move forward. About ninety percent of the estate sale is staged, ready to go. I’ve researched the collectibles, and priced everything. Mom’s closet is virtually empty and I’ve sorted out the clothing by size. Every piece of jewelry is now together in one box, a big box. I won’t be selling it at the estate sale, it needs to be professionally appraised and separated into costume, fashion, and fine jewelry. Unlike the week before respite, I’m not exhausted or overwhelmed. As long as I’m moving forward, accomplishing small daily goals, I can see the whole picture coming together.

Mom’s condition is no better or no worse, maybe a few points worse. It’s hard to quantify what’s gotten worse from one day to the next. There are small telltale signs that only I can see; even the nurses don’t notice the subtle changes unless I point them out. She sleeps a lot now, like twenty hours a day. She wakes up for meals then dozes or falls into a deep sleep, or she sleeps right through mealtime and I have to check her blood sugar. As much as I want her to pass away ‘peacefully in her sleep’ (as we all do) it makes me anxious when she sleeps all day. I’m constantly looking at the granny-cam feed to see if her chest is moving or any other signs of life. If I can’t tell, I’ll go to her room and just stand there, staring at her. Then I think she’s going to feel my presence, open her eyes, and wonder what the hell I’m doing.

Friends and family who visit will usually call or text first and ask, “Is today a good day to come over?” My answer is based on Mom’s alertness or lucidity. But you know what, every day is a good day to visit. Fuck it. Come over! Come see her again and again. She won’t remember you were here last month or last week or even yesterday. There is only the now, the present. The day after her birthday, she didn’t know why all those flowers were in her room. She just smiled at them, happy to see them. She even took a deep breath through her nose, trying to smell them. It didn’t matter to her why they were there or where they came from. When she got home from respite care the flowers were gone, but the dozen or so birthday cards were still taped to the mirror above the dresser. She said a lot of words while she looked at them but I only understood “Christmas?” Her tradition is to tape the Christmas cards to the front door. I told her they were her birthday cards, then I took them down one by one and read them to her again. It was like having another birthday. The mention of familiar names got a clear, heartfelt reaction. When she dozed off again I removed them from the room. They’re long gone, as is the memory of them.

My mom has a friend whom she’s known for thirty-five years. They met when they worked at a Mexican restaurant; he was a busboy, she was the hostess. He spoke no English at the time, but somehow they communicated and she became his surrogate mother. She took him to the doctor when he had an infection. She took him to Sears for his first pair of eyeglasses, and to the DMV for his driver’s license. She taught him enough English to get by in the world. And she never ever forgot his birthday. He moved away many years ago but always stops by to visit when he’s here to see his family. Yesterday he turned fifty years old and took time out of his day to visit Doña, as he has always called my mother. She didn’t recognize him at first and he was heartbroken, I thought he might cry. But the more he spoke to her and called her Doña, the more light came into her eyes. She finally focused on him and said, “How long are you in town?” They were able to have a bit of a conversation, as good as it gets these days. Since I knew he was coming, I dug up a photo of the two of them, then printed and framed it as a birthday present. In the digital age of scrolling through photos on phones, it’s a rare gift to receive a framed print. We showed the photo to Doña, she laughed and mumbled, “Look at my fat ass.” No matter how far gone she is, her hair and weight are always scrutinized. Come to think of it, so are mine!

I had a bit of drama this week: the September rent statement nearly floored me. We live in a mobile home park with utilities added to the space rent. Our electric bill was three times the normal amount due to the oxygen machine running 24 hours a day. I mentioned (bitched about) this on Facebook and everyone responded that I should be getting a medical discount. Well, damn, how was I supposed to know that? I asked the hospice RN if she knew about it. “Oh yes, your social worker should’ve submitted the application when you got the oxygen machine.” Hmmmm. So I texted my social worker who claimed ‘the form is in the book’. Again, how was I supposed to know this? This is the first time I’ve been disappointed with this hospice agency. The oxygen, (two tanks and the machine), arrived the same day she was signed into hospice care. The application should’ve been brought to my attention and filled out that day.

Something else happened this week, the hospice case manager came over to do mom’s six month evaluation. Yes, it’s been six months already! The words “declining” and “transitioning” were thrown around again and many boxes were ticked on her fancy hospice tablet. I had to ask, again, “In your experience as a hospice nurse, how long do you think she has left?” I got the usual non-answer, “Every case is different, could be a month… could be a year.” Although, she made it clear that having the estate sale and looking to the future was a good plan. She bought some Waterford crystal candlesticks on her way out.

PS, I love you

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Hello from Palm Springs! I finally took the five day respite offered by hospice. The lead up was stressful, but now that I’m in PS, I can decompress or decom-stress,

A few months ago I mentioned that I wasn’t sure my mom would make it to her August 15th birthday. Now that she did, I decided to take a break, especially since I’ve been preparing for an Estate Sale. My normally tidy home is in chaos.

You don’t know how much a person owns until you put it on tables, then try to categorize and price it. I’ve sold or moved enough furniture in the living and dining rooms that I’ve been able to set up five long folding tables. They are slowly filling to beyond capacity, and I’ve created shelf space beneath the tables for more items. I still have to empty her dresser and closet full of clothes and shoes. Then there’s the outside shed, which has most of the Christmas and seasonal decorations. There’s a 1950s train set with a quarter mile of track; I have to contact a hobbyist. Then there’s her jewelry, I have to get it appraised to separate the real pieces from the costume jewelry. Some of it is still in the original boxes with tags. Just writing this (from my hotel room in PS) is giving me anxiety and an overwhelming desire to just donate or dump it, but I won’t. This is not just ‘stuff’, it’s my mother’s stuff. Each item was bought for a reason or given as a gift. It meant something to her at one time, maybe forty or fifty years ago, and maybe she’s forgotten, but it’s not just ‘stuff’ to be discarded.

So, here I am in Palm Springs and so far I have done some pretty mundane things. Yesterday I went to Trader Joe’s, Target, 7-11, and a movie. It was odd to not be on a time crunch, not checking the granny-cam or thinking about what to make mom for lunch. I was free to just be. Untethered. As exhilarating as it was to have brunch with a friend and not fret about one minute away from my mother, I still thought about her. I worried about one thing, her lucidity. Would she have lucid moments where she wondered where the hell she was and where the hell I was? Would she think I’d abandoned her to a small shared room in a stranger’s house? She was unaware while she was transported. In fact, she smiled when she was taken outside in her wheelchair for the first time in five months. But ultimately, it was traumatic to be transferred from her bed to her chair to a gurney, driven to a nearby town, and transferred again back into bed. She kept looking at me with two expressions. One was confusion, like ‘What the hell is happening to me?’ And the other was anger, like ‘What the fuck are you doing to me?’ I kept repeating, “Only five days, I’ll see you in five days. You’ll be home again in five days.” Hopefully that sunk into her subconscious. My niece has already visited her grandmother and reported that she’s not upset or even lucid, just chatting away to her dead ex-husband.

Not only am I preparing for the Estate Sale, I’m preparing for re-entry back to my life and livelihood. As I’ve mentioned before, I am not going to stay in my hometown. I’m using this respite time for relaxation and research, as PS is at the top of my list. Today I’ll be hitting a few mobile home parks that I think I can afford. Based on current house values, I can sell my mobile home and buy one here without a problem. My main concern is the price of monthly space rent. I’ve seen rent as low as $425/mo and as high as $928/mo. And what does it include, if anything. Water? Sewer? Trash? There are also property taxes, both state and county. Had I thought this through a bit more, I wouldn’t have included the weekend for my five day respite; the park offices are closed. I only have Monday, Tuesday and possibly Wednesday morning to do this. I plan on leaving by 11:00 so I can take the desert route home and stop for lunch in Pioneertown.

As for today, I’m having coffee with a Facebook friend this morning, our first ever face-to-face meeting. She and her wife live in a rent-controlled mobile home park. I’m going to tour their place and speak with the management. Then, I’m having dinner with a gay couple who are actually family members, through marriage, although now divorced. It’s complicated. Anyway, I have known one of the hubbies since 1976, when his sister and my brother began dating and ultimately got married in 1977. On Tuesday, I’m having lunch with lesbian friends, one of whom I’ve known since the sixth grade. The theme here, if you haven’t already picked up on it, is PRIDE. After living four years in a city with virtually no gay community, other than one dive bar, I am yearning for a sense of belonging. Palm Springs is an LGBTQ mecca! After one day of shopping, eating and walking around downtown, surrounded by the familiar faces and voices of ‘my people’ I already feel at home.

Transition

In the early days of this blog, one of my mother’s long-time friends discovered it (on Facebook) and commented that I should be ashamed of myself for posting such private moments and vulnerable photos of my mother, as if my intention was to strip my mom of her dignity. I reacted defensively, along with a few of my loyal readers/friends. However, her comments struck me with a pang of guilt. After a few weeks of back and forth with my conscious, I deleted two photos of my mom sleeping: one in the ICU, and one taken in a care facility. You may have noticed I haven’t posted any photos of her for a few months, because she spends more time asleep than awake. There are days I have to wake her up for diaper changes, drinks, and meals; and she falls asleep during the task.

Dementia is a beast, coupled with Parkinson’s disease, it’s a fucking monster. Her mind and body are doing their own thing now. She talks gibberish non-stop. Gibberish to me; she knows what she’s saying and to whom: she laughs and yells and waits for their response. I can no longer have a lucid conversation with her. I have to get her attention and ask basic questions. Six months ago I could could ask, “How do you want your eggs cooked, scrambled or fried?” Now I say, “Eggs for breakfast?” Eating goes something like, “Open… chew… swallow.” Drinking is getting harder by the day. I place a bended straw between her lips and tell her to, “Take a drink… drink and swallow. Suck it up. Swallow.” It’s like talking to a dog – Sit. Stay. I hate speaking to her this way, but she doesn’t reipond to more than two or three words at a time, it’s too much information to process.

Since her condition has moved from ‘declining’ to ‘transitioning’, I’ve begun preparing for the end of our journey together. I’ve been working on a memorial slideshow, trying to portray various ages and facets of her, all expressions and moods. At 86 years old (this Thursday) there are about 800 photos of her. At first I thought that was a lot, almost overwhelming to sort through, then I realized that’s not even ten per year over a vast lifetime. I probably have a few thousand of my cat! But times were different in the 1930s and ‘40s, especially if you were poor… in England, during World War II. There are only two photos from her early childhood, taken the same day, possibly within minutes of each other. I have two more from her teens, and a few taken before marrying my father in 1955. He must have loved photography, like me, always behind the camera. They divorced in 1969 and we arrived in the U.S. with quite a few photo albums, I looked through them often. In the mid-70s, I found out, via my step-brother, that my father had kept about a dozen slide carousels: each held 140 slides. His second wife spitefully destroyed the slides of us. I can understand getting rid of photos of the ex-wife (if you’re a jealous bitch), but not photos of children, not their childhood memories. How easy it would’ve been to box them up (out of the carousels) and mail them to us. So, although we have hundreds of photos, well over a thousand were thrown out with the garbage.

I’m sure most people think their moms were pretty back in the day, but honestly – my mom was the complete package. I knew, from a young age, that I would never live up to her level of femininity and beauty. From her perfect hair and nails, expensive clothes and jewelry, matching shoes and handbags, delicate make-up and perfume – my mother was a well put together woman. It was clear that I got a low percentage of her DNA, fifty percent could not look or act like this! I strongly resemble my father, more so his mother; I walk like him, laugh like him, carry excessive weight like him, and have his ability to both sing and scowl. I stopped wearing dresses and skirts the second my mother allowed me the choice. Her disappointment and disapproval was relentless until recently, while bedridden in hospice care. She has finally stopped nagging me about my clothes, hair and weight.

My mother, as described above, is gone. Her hair is washed once a week and lightly combed – no curlers, no teasing, no hairspray. I dyed it for her once (in bed, which was insane) but now she has about an inch of white roots. Her face is washed and moisturized daily – no make-up, no mascara, no lipstick. She also has no eyebrows, women her age over-plucked them until they failed to grow back. I joked about her getting tattooed eyebrows, now I wish she had, because she looks bizarre without them. Her dresser and closet are full of clothes and shoes she’ll never wear again. Now she wears brightly colored tee-shirts, changed every other day. Her once hazel eyes are now milky sage green, mostly vacant or closed. Her arms are by her side, seldom moving, while her legs tremble and kick. In the morning she’s exhausted from “walking all over town” or “dancing with Tom” her ex-husband.

She’s my mother, but not.

Take Me Home

Yesterday nearly crippled me emotionally. I had to call hospice to send over an on-call nurse.

My mother is usually confused when she first wakes up in the morning, still in the fog of whatever dream she last experienced. She eats breakfast, drinks some juice and a cup of coffee; morning meds are taken, then she has a short nap. When she awakes, she’s close to lucid. Close enough that we can have conversations, joke a bit, and watch TV together – her dementia symptoms have been mild and manageable… until yesterday.

At no point was mom lucid. From the moment she awoke, she asked, “When are you taking me home?” repeatedly, all day long. I can usually convince her she’s already home by pointing out some of her possessions around the bedroom, “That’s your fancy mirror. There’s your dresser. Those are your dolls.” Then, she slowly accepts that she’s home. Even the presence of the cat at her feet wouldn’t sway her yesterday. She wanted to go home and I needed to take her. Now.

That’s not the only theme of the day. There were vivid Parkinson’s-induced hallucinations of people in the room, down the hall, around the corner, in another room. People outside her window waving to her – she waved back. She wouldn’t let me change her diaper because there were so many people watching and waving, or coming down the hall to her room. For the first time ever, she grabbed my wrist to stop me, while holding the sheet in a death-grip so I couldn’t pull it down. The next time I came in the room, she snapped at me, “Finally! I need to be changed! Do you want me to get a UTI?!”

Another fun thing – she obsessed about a pair of shoes. “Where did he put them? They’re in that corner I think. Look for them!” I finally conceded and put a pair of shoes on her bed, but they weren’t the right ones. She launched into great detail that they were green patent-leather with a small silver buckle to the side and low heels. She owns no such hideous pair.

Also, the TV was calling her name, but not her current name, her maiden name. “They’re looking everywhere for me but they’ll never find me in here.” This storyline went on for a few hours. Every time I entered the room she was waving at the TV. “Here I am! I’m over here!” Then she’d look at me (if looks could kill) “They’d find me if you’d just take me home!”

I had to keep leaving the room; I couldn’t handle it. Every time I left she yelled at me, I half expected the TV remote to hit me in the back of the head. Every time I entered she immediately asked me to get her shoes, pack her stuff and take her home. When she refused to eat lunch I gave up and texted her primary nurse. She wasn’t available to come over but she called the hospice doctor for prescription advice. I then called the hospice office and requested a visit from the on-call nurse.

The on-call nurse was wonderful. All of them are, actually. She’d never met us before so I gave her the rundown on my mother, what she’s normally like and what was currently happening.

The nurse introduced herself to my mother and mom was all smiles – happy to see someone other than me. She told the nurse her plight of being left outside on the sidewalk for six hours while waiting to go home, pointing at me while she said it. And carrier pigeons (or maybe doves) had flown off with her oxygen, making it hard to breathe. There was a red light in the corner that was hiding her green patent-leather shoes, and her daughter was too stupid to find them. To cap it all off and really make my day, she asked the nurse to look at the cut on her head where I had hit her. The nurse obliged and reported that there was no cut, not even a bump or bruise.

Mom asked the nurse if she was being released, could she go home now? The nurse came back with a story that the house wasn’t ready for her, it was being worked on. Mom glared at me, “What are you doing to my house?! Who said you could change anything?!” I looked at the nurse, “Thanks for that. I’ll never hear the end of it now.”

The nurse and I stepped out of the room, where I finally broke down and cried. She told me it’s better to play along than contradict or correct dementia patients, causing further agitation. “Yes, I know, but now she’ll obsess all day about her house, and be agitated that I didn’t tell her I was remodeling.”


As I write this, at 4:30 AM, I heard my mother talking and took a peek at her on the camera. She has pulled back the bedding and her leg is over the edge; she’s trying to get out of bed. So, rather than finish this, I’m moving on to my new day, armed with a new prescription that arrived an hour ago (yes, at 3:30 AM). It better work.