Posts Tagged ‘sleep’

I got to my parents’ house around 8 this morning. I slept in and missed my regular 6 a.m. workout; maybe I somehow knew I’d need my sleep. I blamed it on the fact that I woke up every two or three hours during the night. But whatever.

When I went in to see mom, I knew something had changed. I looked at her, and she looked back at me with this expression that was wholly innocent, sad, and exhausted. I just knew.

“You look like you’re about ready to go,” I said to her. “Are you?”

She smiled a little at me and nodded. And that was the last time.

I honestly believe that started her dying process. I told her again that I loved her, that I’d miss her, that we’d be okay, that it was okay to let go. She dropped back into her fog for a while, but her breaths were quick and shallow and her pulse was rapid. Around 10, I talked with my aunt and decided to call hospice. I knew they’d tell us to start the morphine, but I really didn’t want to. I was dreading losing what little of my mom I had left.

You see, mom has always hated drugs. She’s the only person I know who lived through the 60s and 70s and never did any drugs of any sort. Giving her morphine, sending her into an altered state that wasn’t of her choosing, was *not* high on my agenda. The point of hospice, though, is comfort, and we wanted mom to be comfortable. So we started the morphine on hospice advice around 10:45 a.m.

The hospice nurse called around 11:40 to say she was on her way and that we should give mom another dose if she was still having rapid breathing. So we did.

The nurse showed up soon after, and my aunt and I helped her clean mom up. The CNA arrived right as we finished. We left the CNA to give mom a small bath as we went to talk with dad about what was going to happen.

Mom’s hands and feet were already cold. As the day progressed, I was able to feel the cold move from her toes all the way up to mid-calf. From a scientific perspective, it was intriguing. The hospice nurse explained that mom’s rapid breathing was not because she couldn’t get air, but because her cardiovascular system was shutting down. It was trying to conserve the important parts, so it was leaving the hands and feet to concentrate on the brain, heart, and lungs.

The hours flew by. Every time I turned around, it seemed another had passed. I spent most of the day lying on the hospital bed right next to mom, my arm around her or on her shoulder.

The hospice nurse said no visitors but immediate family (“You’re not a visitor,” she said to me), but mom has always said she wanted her best friend there at the end, so welcomed her over around 2 p.m. My aunt and I took the chance to eat some lunch while she was with mom. When she said goodbye to mom, mom looked right at her. Mom knew who she was, and she was glad her best friend was there. She wasn’t able to smile with her mouth, but she definitely smiled with her eyes.

From about 3 p.m. on, it was a struggle. The nurse said to give mom morphine every three hours, then as needed between when her breath seemed labored. The problem was that her breath seemed very labored all the time. We gave her one dose around 3. When she wasn’t any better after 20-30 minutes, we gave her another. Then waited. Then another. Sometimes mom sounded like she was snoring, but her eyes were open. They darted side to side like she was reading something. Sometimes I’d be able to get her to focus on me, but it required effort.

I kept telling mom I loved her. That we’d be okay. That I’d take care of dad. That it was okay for her to rest. That it was okay for her to go home. That she was the best mom I could have ever asked for and that she’d always live on in our hearts. That I loved her. That I loved her. Over and over.

I keep mentioning my aunt, but you should know dad was there, too. He wasn’t able to stay in the room, but he was constantly in and out, telling mom he loved her, blessing her, telling her to rest. I know it was hard for him.

Is hard.

Will be hard.

Mom’s eyes finally fixed. Her breathing was quieter, and then she went into this period of intermittent breathing. She’d stop, and we’d think that was it, and then she’d take another labored breath. That must have gone on for almost an hour, it seemed.

I sat on her bed and held her hand until the end. There wasn’t a magical moment, though. I didn’t see her eyes widen or a smile or anything like that. It was just breathing one second, then not. My aunt took the oxygen off, then went to tell dad. This was around 6:35 p.m.

Seeing mom like that was strange. She’d looked so gaunt for so long that she didn’t look much different, but then she looked entirely different. It’s difficult to explain.

My aunt called hospice, and our hospice nurse came back out. That was really nice of her. I know there was an off-hours nurse on call, but we’ve grown close to ours. And she’s marvelous. She came and cleaned mom again, helped put up some supplies, and stayed with us until mom was taken away. Dad called the funeral director (a friend and Masonic brother), who came out as well. He had two big guys on call to come carry mom. They were very gentle with her and treated her with respect. I put mom in her “With God, All Things Are Possible” lung cancer shirt and gave her one of her little white toy poodles to take with her. Dad gave her another so she’d have two, representing her current poodle and the one previous. We walked with mom out to the van and watched as they took her away.

I’m condensing all of this, of course. It’s late, and today feels like it was a year long. I’ve cried a lot. I’ve also laughed some. I’m eternally grateful that I was able to spend this day by mom’s side and that I was holding her hand and looking into her eyes when she passed. I’m glad she wasn’t alone. And I’m glad I wasn’t alone, too! It was good to have my aunt sitting there with me.

We don’t have plans for a service yet. We will be sure to keep you all posted. We appreciate all of your thoughts and prayers.

Mom is at peace now…now it’s going to be a struggle for us to find ours without her. She was an amazing woman, and I’m both blessed and proud to be her daughter. I’m also both blessed and proud to have such an amazing dad, who has done such an incredible job caring for her this past year. Their love is something to envy.


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Staring Off

This will be a short post because I’m exhausted, but I figured everyone was waiting for an update.

I had a message on my phone from dad when I was done exercising this morning. He asked what time I was coming and gave me the impression that I should hurry. He said mom was back in her fog and he was hoping I could help get her out of it.

I hurried home and grabbed the lunch I was going to eat and just took it over to my parents’ house. Mom was definitely back in her fog, just staring off into space. I got her to look at me and nod a couple of times, but she couldn’t lift her head, eat, or drink. By the time I left the house a little after 6, she’d no longer look me in the eye, nod, or react to anything I was saying.

My dad’s younger sister came down from Maryland to stay. She used to be a nurse, and she was the primary caregiver for her own mom, so she understands a lot of what’s going on and is a big help. If she hadn’t come, I’d probably take the cats and move back into my room. I’m still considering taking the cats and moving us into the guest bedroom, but I’ve thought about it a lot, and I’m okay with commuting for now.

I’ve been there for my mom this whole journey, save for her initial diagnosis. I’ve been to doctors appointments. I held her hand during her first chemo treatment. I’ve camped out in hospital rooms. I’ve spent as much time as I could with her and my dad over the past several months. I’ve said everything I need to say to her, and I’ve heard everything from her that I need to hear. I would love to be with her at the end, but there’s just no predicting when that will happen. It might happen tonight in her sleep. It might happen tomorrow. She might hang onto the Scott stubborn streak and stick it out for the rest of the week. I can’t keep vigil by her side 24/7 indefinitely. I’m comfortable knowing that my dad and his sister are there. My aunt told me that no matter what, I shouldn’t feel guilty, whether I stayed or went home. I’m trying not to.

My plan is to get my week’s cooking done tomorrow morning, then head back over there around lunchtime. I don’t know if I’ll stay for dinner or not. Then I’m clear to work from their house, though I have a doctor’s appointment and a vet appointment on Monday.

My parents are my best friends. This is really hard on so many fronts. But we’ll make it through.

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Dad had a doctor’s appointment today, so he asked me to work from their house again today. I’m very grateful that I have an understanding boss and a flexible job.

Mom ate a TON today! Okay, maybe not a ton, but compared to the amount she has been eating, she pigged out. I had a thought while I was killing myself on the treadmill this morning that mom might like some orange juice…I mean, maybe the lady is just sick of water. I was dehydrated at that moment and all I wanted was some orange juice, so I figured it couldn’t hurt to ask. Sure enough, mom had an entire cup! I went to refill it, but by that time, she didn’t want it anymore.

I asked mom if she wanted food, and she actually nodded, so I got very excited and decided to make her some grits. I tried to give her some instant oatmeal in the meantime since the grits took 30 minutes, but she didn’t like the oatmeal at all. She did, however, eat at least a half a cup of the grits (mixed with butter and sugar, of course!). And I even got her to eat some barbecue for lunch (not sure what it was, exactly, but it smelled good and was in the fridge, so whatever). And she had at least three big glasses of water, so that’s great too!

Things didn’t go so well after lunch. Maybe it was the pork. 😛

I posted this as my Facebook status today: “Something I’ve noticed at my parents’ house: everything always happens at once. For me, it will be the CNA needing help while I’m on a conference call, or the phone ringing right when I get pinged on IRC, or perhaps all of those all at once, plus a flower delivery. Then three hours of dead time. Then four more things all at once. It’s interesting how it all works. I’ve noticed it happens with my dad, too.” And it’s the truth. Today was no exception.

I went in to check on mom, and she looked horrible. Her face was all red, she was kind of shaking, and she was very hot. I searched high and low for a thermometer, but I couldn’t find one anywhere. I was about to call the hospice nurse when there was a knock on the door, and one of my parents’ friends showed up. She visited for a bit while I got a cold washcloth for mom and tried to get the hospice nurse on the phone. I like the hospice nurse, but whoever they’ve got on the phones and/or scheduling isn’t that great. I had to wait for a menu, then hit 0 to get the operator, then ask for hospice, then got a voicemail message for the hospice scheduler that said that if it was an emergency, I should call back and ask for the supervisor. *sigh* So I called back and the operator took my name and number for the nurse to call back. But apparently the nurse didn’t get my number because she called the house phone, which gets forwarded to my dad’s cell phone, and I was trying very hard not to worry him. Anyway, the nurse finally called my cell and told me to give mom some Tylenol. Helpful.

Mom’s 180-degrees different than she was this morning. She was lucid and talkative and hungry this morning, and now I can hardly rouse her. One of the pills they stopped was her Synthroid, so dad and I just gave her one of those. I tell you what, if my thyroid level is even a teeny bit low, I can’t get out of bed…I can’t imagine what would happen if I stopped it entirely. I’m cool with stopping the Tarceva because that has more benefits than downsides, but I am NOT cool with stopping the Synthroid. Ugh. I didn’t even think about that yesterday. She’s only missed it by several hours, so it shouldn’t be too big of a deal. Good thing dad mentioned it!

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Another week, another Tuesday. Dad had an early appointment, so I’ve been here alone with mom for most of the day. No one was sure whether or not the CNA was supposed to come sometime (they’re moving her up to four days a week, but I guess no one had said which four), but no other visits were scheduled. It’s kinda nice.

I went in to see what mom wanted for breakfast and noticed that she had thrown up during the night. There was dry, crusty stuff that looked mostly like blood to me all down the front and side of her shirt and on the pad underneath her. I did my best to change her shirt (watching me try to take the old one off would have been hilarious had it not been so sad…it’s very difficult to change someone’s shirt when she’s just lying there), and I put a clean pad over her old one while I called to see if the CNA was indeed coming (if not, I’d go ahead and try to change everything). After a few rounds of phone tag with hospice, the CNA called to say she was on her way.

Of course, she came right when I have my weekly (phone) meeting with my manager. The one appointment I have all day. So there’s me with my cell phone pinned between my shoulder and ear, talking with my manager about a matter of procedure, kneeling in the middle of mom’s bed, and helping the CNA slide mom in and up on the bed. Talk about multi-tasking.

Mom’s always exhausted after nurse visits. I’m sure it’s because she gets manhandled and has to expend a lot of her energy. I was trying to get her settled and get her some food since she said she felt nauseated again. She’s on a two-bite kick: two bites of breakfast, two crackers, two bites of sandwich, two spoons of yoghurt or smoothie, two sips of water. I wonder if she’s aware. But that’s all she’ll take these days. Anyway, I got her some crackers, and she didn’t seem to like the way they stuck to her teeth, so I figured it would be a great time to brush her teeth, especially since I’d forgotten to do it earlier. Bad caregiver.

I’ve been working with mom for MONTHS about not swallowing toothpaste. Apparently this is something she’s done her whole life, I don’t know. But the first time I had to help her to the sink a while back, I noticed she wasn’t rinsing and spitting. She was under the assumption that if it’s safe to put in your mouth, it’s safe to swallow. I know she never reads ingredient lists, but toothpaste is not your friend! So now I make a big deal out of “rinse and spit!” I brushed her teeth for her (awkward if you’ve never done that before; all previous times, she’s done it herself) and held up a cup. I must have said over a dozen times, “rinse and spit; please don’t swallow!” I don’t know if she couldn’t understand or was just in the habit of swallowing, but she swished the water around and swallowed. Ugh. I made her rinse and spit anyway, though it was very hard for her to figure out how to do it. When we were done, I asked if she needed anything. “Yeah,” she said, giving me a nasty look. “I want my life back.”


She was sure she had to be somewhere for bridge, either at church or her friend’s house. It took some convincing for her to believe she didn’t have to go anywhere. I put on the TV and tried to get some work done. When I went back, I asked if she was okay…she looked very confused. She said she was confused. I asked what about. She told me that it was like she had two lives, one on the TV that was causing her to miss the other. I turned off the TV and asked what she wanted to do. She said sudoku or read, which is what she always used to do, so I got her the sudoku book and a pen that writes easily.

Boy, that didn’t go well. I don’t know what she was doing, or what she thought she was doing. She started by putting a 1 in a box that already had a 1, then told me I was wrong when I told her she couldn’t do that. So I just agreed and let her do her thing. I checked back on her a few times, and there were some scribbles in a few places, but no numbers. Every time I walked by the room, though, she was staring at it intently. I wish I knew what was going on in her mind.

When I walked by and she was asleep with the book in her hand, I took it away. I got her two bites of lunch, and then she agreed to read a book. She’s been in bed reading for a while. It’s really a small miracle. She hasn’t read, to my knowledge, for a long, long time. It used to be her favorite thing to do. I hope she’s getting some enjoyment out of it.

I also hope she’s getting some sunlight. I opened the blinds in her room. Poor dad…he loves birds, and he said the last time he opened the blinds, a bird flew into the window and killed itself. He just can’t win. (And, yes, he even has those decals on the windows that are supposed to tell the birds that there’s glass there.)

I’ve been doing a little better these past couple of days myself. I went to yoga, which I haven’t done in ages, with an instructor I haven’t seen in months. She was my first real personal trainer. She’s a very kind soul, and I was hoping that yoga with her might help me remember to treat myself with kindness and compassion. I spoke with her a bit after class, and it turns out when she was 16, she lost her mother to cancer. They had a four-month warning. It’s so sad, how many people this disease touches. It seems like everyone. I hope I can make yoga a part of my regular routine. It’s another thing I can’t afford, and I’m horribly inflexible, but it’s a nice way to touch base with what’s going on with myself. Just like meditation, it brings a lot of crap to the surface that can then be scraped away. I hope.

So here’s to small miracles, two bites, and two lives. I don’t know how much longer we’ll have with mom, but I hope she can spend that time doing what she loves to do.

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Ocean Water

Dad took me out yesterday to rent a bike.

This is the first road bike I’ve ridden since I visited a friend on the Google campus in 2008. And before that, I hadn’t ridden a bike in over a dozen years. I remember having a hard time keeping my balance when I was at Google, but I didn’t have any issues this time. It might be due to the RealRyder classes I’ve been taking at HEAT (best gym in the world!).

Anyway, I went out this morning for a ride down to the inlet. There were hardly any people. It was lovely. I can’t believe that I’ve been coming here for my entire life and have never been down there. There was a man with a bike who spoke with me for a while, and he said the inlet hadn’t always been that way…there used to be water flowing through, but the landscape changed every decade or so. I guess I caught it in a good decade!

There were shells everywhere! I looked for sand dollars, too, but I didn’t see any of those. I did pick up two beauties to bring home to mom. I don’t know if she was very impressed, but I thought they were great.

The bike ride was nice. I don’t know if this is TMI or not, but no matter how fast I rode or how strong the wind was in my face, I could not outrace the smell of mom’s catheter. It’s permeating, and I think it’s taken up permanent residence in my nostrils.

She hasn’t had a bath in about a week (see previous posts about idiots letting her fall over in the shower), so we made that our top priority for today. Dad’s sister is here with us, and she brought a little bench that fits inside the tub. So we stuck that in there. I got mom in and gave her a bath as best I could. I hope it was okay. I kept checking in with her, and she didn’t seem to mind what was going on, though I know it was a lot of work for her to get up and down so much. Probably much-needed exercise, too. 🙂 I washed her hair using a drink pitcher. Good times.

Her skin is SO dry, it’s ridiculous. She needs to get some lotion on every day, even if she doesn’t bathe. Her poor skin is flaking everywhere.

I asked mom if she was happy to be here. She said it was different, that she had more chances to spend quality time with friends when they were at home. I said that dad was at least getting a chance to relax a bit here, and she said that’s what she was hoping would happen. She’s still pretty much hanging out in bed all day. I hope I can get her to stay up after lunch. If she doesn’t start exercising and walking more, I’m afraid she won’t be able to much longer.

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