Posts Tagged ‘hospice’

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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Another Good Site

Good morning!

I just wanted to share this site with all of you: http://www.amitabhahospice.org/public/helpful_info/signs_of_dying.php

Hopefully you’ll find it as helpful as I did. 🙂

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A Smile!

I was delayed by getting to my parents’ house by a stubborn pot of black-bean soup. My beans just did NOT want to cook this morning, even though I soaked them overnight to speed up the process. Probably should have broken out the pressure cooker, but oh well.

I made it over there a little after noon. Dad and my aunt had both told me there was no change. Indeed, mom looked just as she did when I left her. She had more of that yellowish goop in her eye (one of my cats gets that same goop sometimes), so I grabbed a paper towel to get it out. I knew she was aware because she moved her eye around to help me out.

When I was done, I looked at her, and she looked back at me, which was more than she’d done yesterday. I told her I loved her, and she smiled at me. Actually smiled!

I noticed mom’s nose had been running too (it started that yesterday, probably because she’s let her head fall to the left side, so everything runs out the left), and it had crusted over. Now, I usually avoid putting embarrassing things in this blog, but the booger I pulled out of mom’s nose was award winning. Really. I think we should have framed it. I don’t know how that poor woman was breathing. I got her to talk, too: she said, “Ouch!” 😉 I tell you what, though, once it was gone, she was breathing quietly and normally for the first time in a long time. I’m sure that felt good to get out.

After that, she was talking a bit, too! She took two huge glasses of water. Then I asked if she wanted any food. She was silent. What about a protein shake? (That’s what dad calls the Boost drinks so she doesn’t feel so old.) “I think that would be a good idea,” she said. So she drank a whole one of those, then a little more water. She didn’t eat or drink anything yesterday, so that’s a huge difference. I’m sure she was thirsty.

I also did my best to prop up her head, which, as I said, she’d let fall to her left. I’d tried to move it yesterday, but she’d winced in pain, so I stopped. Today, I went a centimeter at a time, making sure she was okay the whole way. I figured out that the pain wasn’t in her neck, but her ear, where she’d been lying on her oxygen tube. That was easy enough to fix. I got her propped up a bit, but by the time I left around 4:15 or so, she’d already started leaning to the left again.

She had one episode during the day where she acted like something in her stomach area was in severe pain. She moved her legs a bit and winced and rubbed at the area. She wasn’t able to tell me where it hurt, what hurt, or how it hurt, so there was nothing I could really do, but I did notice that the liquid in her catheter had just turned more red. I don’t know if that’s her bladder or kidneys or something else, but I’m sure she was feeling something around that area. It passed and she said she was okay, so hopefully it was a small, fleeting thing.

Mom was alert, made eye contact, and smiled quite a bit for a good while after her Boost. She smiled at my aunt. She smiled at my dad. What a blessing her smile is. After a while, though, she drifted back into her fog and fell silent. I did get her to drink a little more water, and she was still able to look me in the eye, so that’s good. I told her I loved her and that I’d be back in the morning.

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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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New-Parent Syndrome

I mentioned to a co-worker the other day that, in many ways, I feel like I know what it’s like to be a parent (except for the fact that I get to go home at night to a quiet house). I’ve gotten a lot more comfortable with every form of bodily fluid. I’ve learned how to give a bath to a person who can’t help beyond getting in the tub. I’ve fed someone who doesn’t really want to eat, and I’ve had to clean up all the food I dropped on her chin/chest/shirt. I find myself getting up and walking by the room just to make sure the person I love unconditionally is still breathing.

I thought when I began this journey that I didn’t have the patience for it. What I’ve learned, like most new parents, is that I have all the patience necessary to care for this person who needs me.

Dad told me yesterday that mom wasn’t doing well and that the hospice nurse said we have days to a week left with her. I’ll be working from their house for foreseeable future, until things get to distracting, then I’ll take some time off. My company is nice enough to provide five full days of bereavement leave, once the time for that comes. It’s a very busy time at work and some new projects are cropping up. I feel a little left out since my manager isn’t calling on me to do a lot, but I’m sure he understands that I’ve got a lot going on. I love my job, and I want to pull my weight (or more!) with my team, so I’m making sure to continually touch base with everyone and keep them up to speed on what’s happening here. That also gives me a chance to keep up to speed on what’s happening there and how I can help.

Mom isn’t doing well, it’s true. She’s not taking any food [EDIT: She just had some grits! yay!], and she’s not taking much water. She was able to listen to me this morning as I repeated things I wanted to make sure that she heard (it’s okay, I love you, the best parts of you will always live on in me, I’ll be okay, I’ll take care of dad, there’s no need to be scared). I know she heard because she nodded and smiled. The only thing I’ve heard her say in the few hours I’ve been here is a weak “okay” when I said I’d be back in a little bit to check on her again. I wasn’t sure she could still speak. I’m sure it just takes too much energy.

It started as a dreary morning, but the sun is coming out. I opened the blinds in mom’s room so she can see out. The placement of the hospital bed gives her a new view out onto the porch, so she can see all the birds coming to get some food. I hope that’s more pleasant than staring at the ceiling.

We’re entering a rough transition period, I know. But mom still isn’t in any pain, at least not that she’s telling us. I hate that she’s had to suffer through all of this. I hope she is able to find peace soon.

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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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Black Blood

I’m afraid I wasn’t much help to dad today at all. The hospital bed got delivered when I was on a conference call, so I couldn’t help with that, and then I was away getting a physical when the CNA was here to move mom onto the bed, so I couldn’t help with that, either. I feel ridiculously guilty. But I did warn dad last week that Monday would be better if he wanted my help with this.

So mom is settled into her new twin-sized bed, which they put at the foot of their king-sized bed. I think it will be better. It will make it a lot easier for those of us who care for her, and it will help her to sit up a bit more, which might make her more inclined to eat (pun intended!). I don’t know, though. She’s not doing so well. Her catheter bag was full of black liquid this morning. Dad said he thinks her kidneys are failing. The hospice nurse said it was either her bladder or kidneys. I asked the nurse if that hurt mom, and she said no.

Mom has no energy, no muscles, no desire to eat…her desire to drink is waning, too. The hospice nurse said that mom will soon go into a coma-like state where she just doesn’t have enough energy to wake up. She said that they don’t really know what happens internally in terms of the dying withdrawing and tying up loose ends in their own minds. She said sometimes people will be able to react when you speak to them, like opening an eye or making a movement that acknowledges that they heard you, but sometimes they can’t. She did add that people can always still hear…that hearing is the last sense to go.

They made the decision to stop all of her medication today except for her beta-blocker (they’ll stop that too, pending approval from the hospice doctor) and half of her Zoloft. I’ve been wondering when they were going to stop the Tarceva. It can’t be doing much but aggravating her stomach. It’s a hard decision, though, I know. Especially psychologically. We’re not going to give mom the medication that’s helping to stop the cancer growth. Not an easy choice. I think it’s for the best, though. I mentioned to the nurse that I was curious to see when they’d stop the Tarceva, and she said that she’d brought it up before, but dad hadn’t been ready until now. I guess he’s finally starting to come to grips with this.

Before I left, he said that this is sad. I said of course, but we don’t want her to hang around like this forever…it’s just not good. He didn’t want to talk much after that. Can’t say I blame him.

But the good news is that mom still knows who I am. She still hugs me back, and she still says, “I love you, too.” That’s about all I have left of her now, but I can’t tell you how much I’ll miss that when it’s gone.

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