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Posts Tagged ‘waiting’

Easter weekend came and went without too much of a fuss, although I will confess that it was full of adventure. I had Friday off, so I worked out, had lunch with dad, and used one of my coupons for a mini-massage and facial. That was nice. Then the boy and I went out to eat with an old acquaintance of mine from college and her guy, who was in for the weekend.

The boy’s band practice was canceled, so we slept in late on Saturday and then went to see Act of Valor. It wasn’t bad. Definitely not the best acting I’ve ever seen, but that’s because they supposedly used real SEALs as actors. The action scenes were pretty much just like watching Modern Warfare or some of these other war video games, which reinforced my belief that those games are just getting the next generation of soldiers prepared for battle. I mean, you could pretty much throw any regular 12-year-old boy into combat these days and he’d know what to do. Scary.

I made dinner Saturday night, and then we went for a walk around the lake. It’s nice at night. Less people. We only do half of the trail, so we turn around at the boardwalk by the road. We stopped there to talk for a little while, and then I was like, “There’s somebody standing over there.” The boy said, “He has a camera.” Odd. So we walked over. It was a young Asian guy who did indeed have a very expensive camera set up on a tripod. The boy asked what he was doing, and he said that he was waiting for the full moon, which, according to the internet, should have arrived by 9:08 p.m. It was 9:11. So, having nothing much better to do, we decided to wait for the moon. And it was worth it. We watched this huge full moon rise over the treeline until it was reflected in the still lake below. Absolutely beautiful. I bet that kid got some amazing shots.

Dad had given me a present to open on Easter, so I dug into it around 12:30 a.m. Of course, it was a stuffed bunny.

He also gave me a plastic egg with three Reese’s mini cups. Perfect. I got to enjoy some Easter candy without the temptation to binge on an entire bag. It was altogether an extremely thoughtful gift. I have the best dad in the world.

We slept in late again Sunday. The boy went home and I cleaned my apartment. I think a Happy Easter was had by all, as evidenced by this text I received from the boy’s bassist:

The boy’s mom invited me over for dinner, so I went out there in the early evening. It was nice. I like spending time with them and having a mom-like person to talk with. I drank a bit too much of her boxed wine and have been paying for it today, but otherwise, it was a good evening.

I feel so thankful for my dad and for the boy and his family. I’m thankful for the support and the acceptance and the love. That’s what Easter’s all about to me, anyway: family and love. And I got a lot of both.

 

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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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I’ve heard a lot of people say “power through it,” but when things get tough and we struggle, the owner of my current gym says “muscle through it.” I’m not sure which phrase is more apt. “Power” invokes an image of some kind of spirit or essence that keeps you going and sustains you; “muscle” is definitely more physical, but it helps me push harder because I can focus on what I’m working at that moment.

This is on my mind because I’ve got my head down and blinders on as I try to finish up my thesis. I told my program coordinator that I’d have it to him on Sunday night, but I severely underestimated the amount of time it would take me to write. I’ve done a 15-page creative non-fiction piece over the course of a single afternoon, but it’s taking me 30-45 minutes to get half a page done on this monster here. Luckily, I’m still within his set deadline of a 3-4 week review prior to my defense, but I want it done and gone. It’s going to need a lot of reworking, I know, but I’ll at least have that 3-4 weeks to rest.

I worked from my parents’ house on Monday instead of today because my manager put me in a training class all week (though I’ll be missing Friday for a weekend away with one of my best girlfriends, whom I haven’t seen in years). I’m sure I wasn’t any help at all since I was trying to do work and get something done on my thesis at the same time. Dad did get out for a bit. The CNA came, and a nurse came (not the regular one, as she’s out this week again), and then mom’s brother, one of my cousins, and mom’s best childhood friend came.

I felt bad that I didn’t stay longer. The cousin who came is the one who’s closest to my age on my mom’s side of the family, and I haven’t seen her since my wedding in 2008. We didn’t get much time together then, so it’s been even longer since I’ve visited with her. Really, the only time I can remember spending serious quality time with anyone on that side of the family was at my mother’s mother’s funeral. A lot of us cousins went out for a drink. It was the first time we’d ever done something like that, and it was nice, though, of course, we all wished circumstances had been better. I just had too much to do. I hope I can find my way down to their neck of the Carolinas sometime so I can get to know them. I see the cousins on my dad’s side of the family at least once a year at Thanksgiving, so I feel like I know them a lot better.

Anyway, last Friday when I saw mom, I was trying to think if there was anyone she might like to see whom she hadn’t seen yet. Her childhood friend came into mind, and I asked dad if anyone had contacted her. I didn’t think she’d come, but I thought it might be nice for mom to talk with her on the phone or something. But she came. That was great of her. I know it wore mom out to have so many people there (not them, per se, but a day with them and the CNA and the nurse and me…lots of people!). Her friend pulled up a chair, and her brother and my cousin plopped down on the bed. I’m sure she felt the love of family around her. And she smiled.

Mom’s not doing well. Her nose is all clogged up, probably from the oxygen. She’s in a lot more pain, though only if you try to move her (I imagine there aren’t any muscles left supporting her bones, and I’m sure there are cancer cells everywhere, and she’s just so thin). She doesn’t eat much at all. She is often able to provide correct responses to questions and to show she knows what’s going on, but sometimes she doesn’t make any sense. We can’t do much of anything at this point but love her as much as we can, try to reduce her pain, and hope she is comfortable.

I was looking at her Facebook page the other day and found a video she made to sell her Jockey clothes (I hope that link works). It was so very strange to see my mom there, healthy, speaking in a “normal” voice (okay, let’s be honest, it wasn’t normal…she was enunciating more than usual for the video and was using her sales voice…but still). I’m glad we have a lot of home videos. It will be difficult to remember her as she was so many years ago after all of this. It’s a comfort to know that the best parts of her…and some of the worst, I know…live on in me.

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Webbed Connections

I’m here at work, not really able to concentrate on much…it’s been a hellaciously busy week, I’ve already accomplished a ton, it’s Friday (thank goodness), and Mercury’s in retrograde, which (I am told by my co-worker) makes it impossible to complete anything. Are those enough excuses?

Anyway, after some searching, I found this thread with people talking about how they can survive losing a mother to cancer. It was nice (but extremely difficult) to read. There’s a lot of great advice in there, like this:

You can get through this. The pain is different for everyone and with every loss, so I won’t pretend to be able to tell you what it will feel like. But I do know that it is bearable, even though it will sometimes feel completely unmanageable. Give yourself permission to feel whatever it is you’re feeling, to laugh or cry or be numb. Trust yourself to know your own healing process. No one can or should tell you what you’re supposed to be feeling. You will break down one day and feel completely fine the next; both of those are perfectly acceptable. You will not betray your mother’s condition by feeling happy; you will not betray her strength and struggle by weeping uncontrollably.

And like this:

It is important that you, your mom, and your family prepare for her death. Yes, that is painful to face, but it will really help everyone enormously in the grieving process. Talk about happy memories, travel as much as possible to places that are meaningful to everyone, get family members together at the hospital or home or hospice. In short, be ready for death. To pretend that it’s not going to happen, to be in denial, is a mistake (and one that my family made).

And some people mention this network of survivors, like how you can just nod to each other and understand. I was thinking earlier today about how so many people come to me with their experiences of when their mothers had breast cancer. HAD being the operative word. I understand their desire to empathize and show care and concern, and I appreciate it, but these circumstances are not comparable.

A while ago (weeks? months?), I asked mom how she dealt with her own mother (Bibba) being in the Presbyterian Nursing Home in Florence, SC, a good 3+ hours away from where we lived in Raleigh. Mom said she tried to go down there as often as she could, but it wasn’t any more often than every month or so. She said Bibba really liked it when she brought over the Grandmother Remembers book and read it to her (Bibba had filled out a book of memories; mom filled one out for me, so I might take it to read to her this weekend). She said that since Bibba couldn’t really respond to her, she’d just go sit in the room and sing hymns until it was time to go. Mom also said that her brother had called her when Bibba was about to pass. My mom was at the beach. She said she knew that she’d only be able to go to Florence once, and she didn’t want to rush back to Raleigh, pack for the funeral, rush to Florence, etc. So she waited, and her mother passed, and she went to Florence for the funeral. She said she didn’t regret it. And it’s true that Bibba wasn’t all there at the end, so who knows if she was aware of anything or anyone.

Ugh, this is all so sad.

On a slightly different note, one of my friends sent me a message after she read my blog post yesterday:

I also wanted to say that your blog about your mom makes me so incredibly sad, thankful, happy, and terrified all at once. I can’t get over how hard it must be but, every time I read one of your messages I feel overwhelmingly compelled to call my mom and tell her I love her. A hug would be better- but a call works for now.

I’m glad that, at the very least, I’m encouraging more calls home to moms. 🙂 One of the things I will miss the most is being able to pick up the phone and call mine. She was always there for me.

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The New Now

Well, to be honest, life’s been difficult. Mom didn’t recover like they said she would. She kept getting worse and worse, so we took her back to the hospital last Saturday. It feels like it was five years ago.

No one has a diagnosis for us. They didn’t see evidence of a new stroke. They didn’t see evidence of cancer in the brain. There’s no evidence of anything. They think maybe it’s a delayed side-effect of her full-brain radiation, or maybe there are cancer cells in her spinal fluid, but no one knows for sure and the oncologist doesn’t suspect either. Not knowing is the worst part.

Mom can’t do much on her own anymore, which is highly, highly frustrating for her. She needs help standing, walking, getting to the bathroom. She can still eat for herself, which is good, and she can still speak, though she sometimes has problems with complex ideas and expressing herself well.

I had the chance to speak frankly with her twice at the hospital. I said everything that I need to say, including that, whatever happens, I’ll be okay and she will always be with me. I was talking with her last night, asking her why she looked so down, and she said that it seemed like there was always one more thing put on her. I said, “I thought the Lord doesn’t put things on people unless they can handle it?”

“That’s what the Bible says,” she replied.

“So you must be a very strong person.”

“That’s what people keep telling me.”

“And what do you believe?”

[pause] “It must be true.”

We’ve had some rough moments, and some embarrassing moments, but I keep telling her that we’ll get through this. And we will.

Dad is stressed, understandably. He’s having to deal with taking over the household and caring for a person who has cared for him for so long. Just last night, I noticed that they were low on laundry detergent, so I said I could order more since I know where mom gets it and I have her login information. “I need to know that stuff,” he said, and then I realized how much mom does that he might not know about. It’s going to be a rough transition.

One of the problems is that this was so sudden. She wasn’t doing great, but this last turn for the worse was more like a turn off a cliff. We just weren’t prepared. Dad did find someone that he likes enough to let help for a few hours a week…her name is Crystal, and she’s going to start by coming for a couple of hours in the morning every other day to help mom get up and showered and dressed and fed. I think that will take a little of the burden off of dad. I think Crystal might need to come more often, though. I guess they’ll figure out what works for them. He also needs a lot of help with food.

I’m scheduled to move out on Saturday. I feel a lot of guilt about it, but mom said that I should go because otherwise dad will learn to rely on me too much and will be even worse for it. I guess she’s right. I just feel like I should be there all the time. I’m strong enough to lift mom when she needs help getting adjusted on the bed. I cook pretty well, I think. I don’t mind cleaning her up (well, it’s rough on me emotionally, but I’ve learned that I can do it with patience and grace, which is what’s required). I feel like they need me there.

I’m finding I can’t concentrate on much anymore. Part of it is that I’m exhausted, and part of it is that my mind is always in multiple places at once…mainly, if I’m at work, my mind’s on mom at home, and if I’m with mom at home, my mind’s on the work I need to be doing. I also have to write the majority of my thesis this month, and that will take a lot of my time. It’s hard. I wish I could get paid (and trained) to be her caregiver. I’d do it in a heartbeat. I could probably take a leave of absence from work, but since I’m the breadwinner in the family, I don’t think that’s a very good idea.

But this is the new now, and we’ll figure it out somehow. Everything always works out. In the meantime, we do appreciate all of your thoughts and prayers.

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Updating

I had the chance to visit with my folks last week. Mom seems to be doing okay, just still struggling with her energy level. I really think that she needs to find something to *do*. She’s always been actively engaged in multiple projects at a time: work, church, volunteering. I don’t think she liked being retired and having nothing to do, so she started on some of those multi-level marketing things and has done pretty well. She’s still selling for Jockey, but she hasn’t felt up to giving it 100% like she used to.

I just hate that she wakes up, eats, reads, does some puzzles, eats, and goes to sleep. I know that mom and I are a lot alike, and if that were me and that were all I had to look forward to, I know I’d be dealing with fatigue and depression. I don’t have many suggestions for her, but I like having something to do that has an end goal. Like scrapbooking, painting, making something. Or working on a volunteer project. Or taking some classes. Something that stretches your brain and helps you work toward something. I’m sure it’s hard to commit to any project when you’re not sure what your energy levels or wellness will be like from day to day, but there has to be something out there for her that will help her regain some purpose.

But maybe she’s happy just reading and doing puzzles. I don’t know. I just know I wouldn’t be.

Other than that, nothing much is new. Dad’s still being very supportive and caring, which is awesome. He worked out with me one day at a pretty hardcore gym. He never gave up, and I’m really proud of him! I hope he continues exercising and convinces mom to go with him. They both seem to want to exercise but want to wait for the other to make the first effort. Part of me wishes I could give up everything to hang out at their house, cook, and go to the gym with them. I’m not sure they could afford me, though! 😀

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