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Rea Le Rata

Happy 50th anniversary, Peace Corps!

I was supposed head to DC on Friday. This weekend, the Friends of Lesotho organization is hosting a reunion for all Lesotho RPCVs, from the first group to the current group, and there are a ton of official PC events, like a gala hosted by Chris Matthews and a global leadership panel. I have to admit that I was looking forward to going. I’d been calling dad all week to make sure he was okay with me going away, and he kept saying yes, he’d be fine, mom was doing okay. Then he called at around 7 pm on Thursday to tell me he didn’t think it would be a good idea for me to go. Mom had a good day that day, but she had one bout of serious shortness of breath. He’s not so worried about her passing away this weekend as he is her starting to lose her ability to concentrate and recognize what’s going on around her.

So I stayed home. It’s probably for the best in many regards. I need to work on my thesis, I can’t really afford to go anyway, and I do need to spend time with mom. Dad and I have now both had to miss our 50-year reunions. What are the chances of that ever happening?

If you’re wondering about the title of this blog post, it’s a line from the Lesotho national anthem. In that context, it means that we love Lesotho. Outside the context of the anthem, the sentence can mean “we all love you all.” They would have been singing the anthem last night. It’s been a long time since I’ve heard it. It has a lot more harmony than ours and is a bit more fun to sing, in my opinion.

Anyway, I had already scheduled vacation time for Friday, so I went ahead and took the day off. And since I’d already cleaned the apartment on Thursday night in anticipation of being gone this weekend, that was one more thing off my list. I slept in a bit Friday and worked out at noon instead of my usual 6 am, then headed to my parents’ house.

Mom was doing much better than she had been on Tuesday. Much more alert and able to talk a lot more. I made a smoothie to share with her (she changed her mind at the last minute and didn’t want any), so I shared it with dad. Then I laid down on the bed next to mom and watched a movie on TV with her. It was some weird Julia Roberts movie that I’ve never seen before…it wasn’t very good, but it was on the WE channel, so I figured it would be okay.

Mom is seriously into the TV now. I guess it’s something to do. But now, if the TV is on, she won’t or can’t focus on anything else. I did keep asking her questions to keep her engaged and to see how she was doing. Like the guy in the movie set a pot roast on fire in the oven…I had no idea that was even possible, so I asked mom if that had ever happened to her. She said it did once with a roast and that it is possible if there’s enough oil there. Go figure.

The hospice nurse came back by around 4:30. Mom’s catheter had been blocked, so that needed to be changed out. It was a long process that was no fun for anyone. Turned out that mom needed some other care while the nurse was there too, so I had to help out since we needed two pairs of hands. The nurse is very rough with mom. I like the nurse a lot, but I don’t like how she handles my mom. I understand why she does things the way she does…but just taking a little more time and getting mom into different positions gently makes a big difference in her pain level. She has a lot of pain in her back.

We had mom on her side while the nurse was doing something that was no fun for mom at all, and I told mom that we’d have to get her a lollipop or some ice cream like she used to get me after shots. Then I remembered that after my weight became an issue (at too young of an age, really), mom stopped buying food treats and started taking me by Kerr Drug to pick out a toy of my choosing. So I told her she’d get to go pick out a toy. 🙂

One thing that really bothers me is how thin mom is getting. She’s turning into just skin and bones, literally. When she’s on her side, the skin of her calves just droops down like there’s no more muscle there…which is probably because there isn’t. And her hip bones just stick up into the air.

At one point, when the nurse was reinserting the catheter, mom was gritting her teeth and making some not-so-fun expressions. I was surprised by my reaction, which was to dive onto the bed and to grab’s mom hand and tell her to squeeze me as much as it hurts. It wasn’t until after that happened that I realized that they always did that for me when I was having things done that made me uncomfortable. The more that mom slips, the more our roles reverse. It’s an interesting process.

I asked the nurse about the timeline. She asked if mom were still eating, and she is, though not much at all. She said that we’d have no more than a week after mom stopped taking in any food, but that we still had weeks to a month left. She pointed me to a booklet that they provided that outlines the common dying process. It wasn’t a fun read, but I’m the kind of person who likes to know exactly what’s going on and when it’s going to happen. I also understand that this isn’t something that can be outlined precisely, and no one knows an actual timeline. It’s just nice to know some benchmarks to look out for. Dad said that his mom passed away one day after she stopped eating. I guess that’s the big one.

The nurse also went through the “little white box” with us again. I’m a lot more comfortable with what’s in there now. She also ordered some oxygen so that dad can use that if mom has breathing issues again…instead of starting on the morphine. We all, the nurse included, want to keep mom as coherent as possible for as long as possible.

I’m thinking about calling on some of the hospice resources for myself. I’ve always had an emotional eating problem (kind of the way an alcoholic is always an alcoholic even if they stop drinking), and it’s hitting me pretty hard. I’ve put on a little weight and need to figure out a way to work this out before it gets worse. Hospice is supposed to offer counseling services, so we’ll see if that’s something they’ll work on with me.

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I’m not going to lie: today was a rough day. Things were pretty normal in the morning, but I felt like I was busy all day. And then I got to meet the hospice nurse around 3:15.

I’ve heard that hospice workers are a special breed of people. I suppose you’d have to be to work in this field. But she sat us down and said some things that needed to be said. I was honestly surprised at how relieved I was to hear her say the truth. And that is that mom is not getting better. She is, in fact, getting worse, and she’s going to get a lot worse, and we’re going to see things we don’t want to see, and then she’s going to die. It feels like I’m betraying something to write that, and I think that’s the reason that no one wants to say these things, but it’s the truth. She poked around the question, how long are we going to pretend that isn’t the case…how long are we going to keep forcing mom to eat; how long are we going to keep harping on exercising?

I got stuck there. And I have to say that no one in my entire life has ever broken me down like this lady did. It’s almost like she found the fault in my marble shell and cracked it with one blow of her hammer. I asked her about the exercise thing. I said that mom wasn’t ready to go, so if she wasn’t ready to go, then I felt like we should keep helping her to get better as long as we can, except that the exercise takes a lot of her energy (I mean, she got winded drinking a thick shake from a straw this morning). The nurse said we were at that point where we had to ask ourselves if it was better to expend all her energy with exercise and wear her out or to let her save her energy for other things.

“What other things?” I asked. “She’s just there in bed. What is she saving her energy for?”

That nurse looked right at me and said, “To hold your hand.”

I just shattered.

But she kept going.

“To listen to you. To be here with you and her friends.”

I guess I’d never thought about it that way.

She told us to fix mom’s favorite foods, and if mom only wanted a bite, let her only have a bite: it was a way to let mom have a sense of control over things. It made me feel guilty for making her eat. I asked her to show me how to better change mom’s clothes while she was in bed, and the nurse manhandled mom…mom was literally whimpering. I’ve never heard that sound before. The nurse said that the more cancer cells mom has, the weaker she is, and the more her back hurts. She told us to give mom some pain medication before we changed her. I complained that it made mom even more confused, and the nurse asked if it was better to have her suffering or confused. She said these were the kinds of choices we were going to have to make from now on.

I broke again. I told her that I hated hurting my mom, that I felt like every time I tried to be a caregiver, I ended up hurting her. I don’t remember what she said then, exactly, but it was probably along the lines of that I’m doing the best I can. I do remember her saying that mom’s back had become more sensitive during the two weeks the nurse had been on vacation. I guess that means there’s more cancer there.

I’m going to be gone this weekend. I hate that I’ll miss the extra day. I told mom again that I’d be gone and that I’d see her next week on Tuesday.

“You mean Monday,” she said.

“No, Tuesday.”

“Why?”

“I always come on Tuesday.”

“You will be here on Monday,” she said.

So I guess I’ll be there on Monday.

I left around 4:20 or so to meet my manager and co-workers for some drinks. I noticed around 6:20 that I’d missed a couple calls from dad. When I called back, he said he just wanted to thank me for everything that I’d done and to tell me to keep my chin up because he was relying on my strength too.

I just constantly wish I could do more.

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Smile!

I know there are a lot of people who are reading this blog now, so I apologize that I didn’t make my regular update last night. A lot of things have been going on in my life, and I’m trying to get everything all sorted out. Hopefully things will settle soon. Fingers are crossed. And even some toes.

I appreciate all the comments and support. Dad asked me the other day, “What are you putting in your blog?” Apparently people who haven’t talked with him in ages are calling to tell him they’re touched by what I’m writing. I’m glad I’m able to be of service in some capacity.

Anyway, I got over to my parents’ house around 4:30 or so Friday night. (Is that last night? I can’t even tell anymore.) Dad ran out pretty quickly to the post office and to grab a beer. I tried to get mom to talk with me, but she was in that state where she vaguely responded and didn’t open her eyes. It’s rather frustrating.

I finally got her to open her eyes when I told her I dyed my hair purple. This is true! I had a streak of dark purple put in my hair when I got my hair cut this week. It’s in my bangs, if I had bangs, and it’s done in such a way where you can’t really tell unless you look, or unless I pull it out. It looks almost like my bangs are tipped in purple. So when I told her that, she opened her eyes and looked at me. Then I told her that I’d been getting a lot of compliments on my toenails this week (true!) because I’d painted them her color, Revlon’s “Wine with Everything.” (And I put my sparkles on as a topcoat.) I held up a foot for her to see. And she smiled!

“You’re smiling!” I said. “What are you smiling for? Because I dyed my hair purple?”

“Because you have purple hair and purple toes,” she said.

So I’m glad I was able to serve a great purpose by dying my hair a crazy color. She always used to hate when I dyed my hair (first time was at a church camp…I said that’s what she got for sending me to church camp). I guess the times have changed.

She tried to go back to sleep for the news (dad put a big TV in their room), but she opened up her eyes again when I found a cake show on TLC. She loves the cake shows. She discovered them while we were at the beach. Then she stayed up for Charmed. She always loved that show.

I also brought over a video of me dancing. I was part of a show at work, and since she’d said she wanted to see me dance, I thought she’d enjoy it. But when I was in a group shot, she didn’t even recognize me…she pointed to a heavyset woman instead. Guess she hasn’t noticed I’ve lost weight!

Mom hadn’t gotten out of bed since I’d been there on Tuesday. She said she wanted to get up for dinner, so we gave that a shot. It was difficult. She seemed to stand better than she did on Tuesday, so that’s good, but she got worn out really quick. She only ate about three bites of dinner, then wanted to go back to bed. I made her drink some Boost before I wheeled her back. I don’t think she likes it when I force her, but when I helped her to get up, I felt every rib in her chest from behind, where I held her back. It’s no good.

I also feel HORRIBLE because I hurt her back. I was trying to get her settled back into bed, and the only way I know how to move her is her legs, then her back, then her legs, then her back, inch by inch. When I moved her legs, I hurt her back. She told me she was tired of telling me not to do things, so she just let me do it. I told her that I didn’t know how she was feeling, so she had to tell me what was going on. I felt so guilty and sorry. I hate that I hurt her.

I’m going to be away next weekend, so I won’t be around to help out. I told that to dad today. He sounded kinda let down. I know he didn’t mean to, but I know he looks forward to my visits, so I feel bad. But it’s the Peace Corps 50th anniversary in DC, and I’ll get to see folks I haven’t seen in several years (including folks who work in Lesotho!). I need to go.

Sorry my thoughts are all over the place tonight. It’s been a very long couple of days. I’m looking forward to a bit of rest tomorrow, and a chance to work on my thesis (I hope!).

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Another Tuesday

Another Tuesday, another WFP day. I pre-made some blueberry pancake batter last night so I could just cook them up when I got to my parents’ house.  (Mom really likes those things!) Mom didn’t eat very much, but she did eat some. Dad ate some too, which was good. I also had my share, which I wasn’t supposed to…I still haven’t gotten rid of everything I gained at the beach.

Dad ran out right after breakfast. I’m glad he’s more comfortable leaving the house. Or maybe he just really needed a break! I can understand.

Mom slept most of the day, as usual. She worried me in the morning because it was almost like she didn’t have enough energy to open her eyes. I could tell she was awake and hearing me, and it looked like she was trying to open her eyes and trying to speak, but it was like her eyes and lips were glued shut. After a while, she started mumbling/whispering something. I asked who she was talking to. She said herself. I asked what she was saying to herself, and she said she wanted to go to the hospital.

“What?! You want to go to the hospital?” (I thought I’d misheard for sure! That or had a real emergency on my hands.)

“I want to go to the hospital so that people can understand what I’m saying.”

“Oh. I can understand what you’re saying. You just have to try a little!”

Phew.

She didn’t seem awake until right around 11, when I had a call with my manager. By the time I was done, she was back in her sleepy haze. She ate a few bites of a tuna melt for lunch, which wasn’t enough for me, so I talked her into having some of her shake that she likes. I made it with milk instead of water and threw in a banana for extra calories. She only had a few sips, but at least it was something. I also got her to eat a few bites of Greek yogurt and granola around 1:45 or so.

I’ve been saying it for a while, but if she doesn’t start working on this, she’s going to be bedridden. She’s just about there. Now, when we get her standing, she can’t stand on her own. I have to hold her up the whole time. This is difficult for someone without any training, and it’s also very bad on the lower back. I’m trying to be mindful and lift with my legs, but it’s nearly impossible in many positions that are required.

The hospice CNA, a very nice young woman, came by around noon and gave mom a bed bath. Around 3, I got mom up and in her chair so I could change the sheets (dad’s request), and then I talked mom into going outside for a bit. I rolled her out on the porch and she lasted maybe two or three whole minutes. I was afraid she’d forget what the sun looks like. I’m getting better at getting her over the bumps in the doorways, though. I did a very bad job of it at the beach! I keep telling her she should enjoy the roller coaster.

I did all the laundry and ran the dishwasher. I guess it’s my way of trying to do more. I sincerely wish there were something more I could do.

I’m heading back over there on Friday. I have an appointment nearby at 2, so I’ll go over after that and either make or pick up some dinner for my parents. I’ve been enjoying spending Friday nights with dad. I’m sorry we won’t have any more family meals around our table…even if we can talk mom into getting there, she only eats a few bites and then wants to go right back to bed. She always did like to get up from the table early. 😉

Oh, and the “little white box” arrived from hospice today, too. It includes things like the morphine drip. There’s also some other stuff in there that I don’t like at all. One drug is called haloperidol. I have to say that the information sheet scared the daylights out of me. I asked the CNA about it, and she said we were just supposed to put the kit in the back of the fridge and forget it’s even there, that we might not ever need it, but it will be a lot better for us to have it all in case we do. That made me feel a little better. A little.

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At the Beach

Well, here we are! We made it, after an extremely long day yesterday, to Emerald Isle. There’s not much visible damage from Irene, which is great.

I got up yesterday and went to my parents’ house, then ran to the grocery store, made mom a PB&J sandwich (she ate a good bit), helped dad finish packing, and loaded up.

The ride down here was awful. I volunteered to take mom, thinking that she would just sleep the whole way. Instead, there was a new complaint every five minutes. We must have stopped at least a dozen times. Her catheter was making her uncomfortable, and there was no way for me to get the bag low enough in the car for it to drain properly. Then her back was hurting, so we tried every possible configuration of seat and pillows. Then she needed to stop to go to the bathroom, so I had to put the wheelchair together and take my first stab at helping her in a public restroom. Tons of fun, let me tell you.

It really tried my patience. I was probably snippier than I should have been. I wasn’t frustrated with mom, but with everything that’s going on in her body. And the fact that I can’t make it better.

But we made it. And I think it will be good for her. She stayed awake yesterday for longer than she has in a month or so. Once we got to the house, she was content to sit in the wheelchair until dinner (she’s been craving lasagna, so I made some). There was a lot of blood in her catheter, so I’m sure the ride wasn’t the most comfortable thing ever. I hate that catheter. I know she does too. It would just be so much easier if we could get the thing out.

I’ve got a lot of work to do while I’m down here, both work work and school work. I hope I can find the time.

She was staring at me a lot last night after I put her in bed. I asked why, and she said, “because you’re taking so much of your time to try to make this work. I don’t know what I would have done without you.”

The blurry picture below is of a gift a friend gave me for my birthday a couple years ago. It’s a small thing, probably something she picked up at a Hallmark or a store like that, but it strangely means a lot to me. The quote says, “Promise me you’ll always remember…you’re braver than you believe, and stronger than you seem, and smarter than you think.” I kept it on my dresser in WV, then on my desk while I was staying with my parents, so I can see it every day. A few days before I moved out of my parents’ house, I left it on their kitchen table so they can see it every day. I like to think it’s true about all of us as we go through this together as a family.

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Ups and Downs

When I called my parents on Sunday, dad said that mom had a great day. He said she wanted to get up and walk with just the cane (no walker), try sitting in her old chair in the living room, try Sudoku. Then apparently she took a turn for the worse yesterday. One of the girls from the assisted-care place came over the morning and (from what I’m told) let mom take a shower on her own, and mom sprained/pulled/twisted/somethinged a muscle in her lower back, probably because she fell. I can’t believe these people are just letting mom take a shower on her own. They’re supposed to be CNAs. Dad needs to find other people. Even I could do a better job with no training, probably because I care.

Today’s my day to work from my parents’ house, though honestly I don’t get as much work done as I should. I’m sure my manager knows. I’m sure he also knows that allowing me this one day to be more here than at work allows me to be more fully present at work the rest of the time. I do find myself getting more done during the rest of the week than I had been. This kind of flexibility also makes me fiercely loyal to the company…if they cut me some slack here, I’ll gladly stay late a few days when needed later or work over a weekend or something.

Anyway, mom was not doing well at all this morning. She had trouble waking up. She couldn’t talk for about five minutes. She could nod, so I know she was there, but she had trouble finding words. She’s extremely weak and had trouble walking, and she just wanted to stay in bed. I got her up and to the bathroom, then to brush her teeth…then she wanted a rest before heading into the kitchen to eat. I brought over some of Elana’s Pantry‘s coffee cake (SO good!), and she had a piece of that with some cottage cheese. Then it was back to bed.

I made her a salad for lunch. I loaded it up with as many calories as I could find in my kitchen: pecans, dried cranberries, edamame, grilled chicken, carrots, cabbage. I brought avocado, too. She’s never been a big fan, but I hope I can get a couple of bites in her. I figured that even if she only ate a little, she’d still be getting some good stuff. (I made one for me too, though without the pecans and cranberries.)

I also brought over the Dr. Seuss book for adults, You’re Only Old Once. I didn’t think it was funny as a child, but I think it’s rather humorous now. I thought mom would get a kick out of it. It’s all about how you go to get a physical and then end up having to see 15 doctors who all poke and prod you, then give you dozens of pills. Sounds about right.

I’m doing laundry. I cooked the dog’s food (she gets ground bison, though she’s been relegated to leftovers because everyone’s been too busy to prepare her food). I wish there were more I could do. Like make my mom feel better.

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