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Posts Tagged ‘energy’

Update, and Visitations

It seems I spoke too soon. 🙂 Mom has had a few things to eat and quite a bit to drink, and she’s been wide away for several hours. Quite a welcome change!

Our efforts now are on conserving her energy, minimizing anything that requires her to pay a lot of attention and respond. I’m not sure everyone understands, but it’s a lot different on this side of the fence.

I had actually typed up a long section in my previous blog post about this issue, but I deleted it all because I didn’t want anyone to get the wrong idea. I’m still not sure I can say what I want to say in this particular forum because the audience has changed so much. But this blog started as a place for me to store my feelings. I suppose it should stay that way. I’ll see if I can limit it to this, and, even though my writing seems to always put my proverbial foot in my proverbial mouth, I hope no one will take this the wrong way:

I never knew what it was like to be a caregiver until this year. It’s extremely different than being a caring person. It’s impossible, as a caring person, to know how to appropriately express your sympathy to a caregiver because we are all different people with different methods of coping, interacting socially, and…well…just being in general. It is difficult for a caregiver who is generally anti-social to all of a sudden have to open up your home and your life and your private moments to everyone you’ve ever known, all at once. And all of those people want to know how you are, and they want to give you a hug, and they want to express the sorrow and sympathy and love that they genuinely feel. It’s a shock to the system. It’s everyone trying to do the best s/he can under the circumstances. The most curious thing to me is how everyone comes out of my parents’ bedroom telling me how my mom is doing. I’m not sure I understand this particular impulse, other than maybe people want to share how they’re feeling and we’re about the only ones who will truly understand.

I don’t know how to accurately express what I’m feeling without alienating people and making them feel like they shouldn’t come visit mom. That’s not my intention. Mom has always been a social creature. She loves people. She loves being around people, caring for people. I remember she told me when we were at the beach that she liked being at home better because all of her friends were around and came to see her. She likes seeing her friends, and I think the best thing in the world for mom is to have her friends and family here to just *sit* with her. To be here with her and to let her know by their presence that she is loved and supported.

Serious demands on her energy, or my dad’s energy, make me feel very protective. There’s only one person who is here 24/7 and knows exactly how mom is doing and what she’s capable of handling. Anyone else coming in only sees an hour of her life at most, and something that taxes her energy for even as little as two minutes might seem like the smallest thing in the world to that person. That person doesn’t see the consequences that appear later in the day, or even the next day, when lots of little two-minute bursts add up to mom being nearly unable to wake up. Her body is disintegrating and she’s only taking in a max of 200 calories a day…everything adds up.

So for those of our friends who are reading this, here’s what I really want to say, and I hope with all of my being that you will take this in the loving spirit in which it is intended:

  • If you feel you need to or very much want to visit, please do. Don’t let me scare you away. Mom loves you.
  • Please just be aware that we’re doing the best we can as caregivers to do what we believe is best for mom, and we hope you will respect that, even if you think you know better.
  • Please do your best to help mom conserve her energy. If you come to visit, come and sit. Maybe talk to her a little. But don’t ask her a lot of questions or force her to attend to much or talk much. She hears you when you’re speaking, and so far she still knows who everyone is. She’s saving up her smiles for you, so treasure them.
  • And please do your best to help us conserve energy, too! Take a little while to put yourself in our shoes just to think of what it might be like.

Thanks for reading, and for understanding. 🙂 I know that we are all hurt people just trying to do the best we can, whether we are caring people or caregivers, but none of us need any more stress than we’ve got.

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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.”

Nice.

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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I don’t know if I’ve moved on up to the east side or if it’s more like the south side. I’ve never been very good at geography or at figuring out where I am. Just ask my friend Jordan…I got us lost in a circular city surrounded by a giant wall. You’d think I’d have been able to find my way back by just following the wall, but no.

Mom had her PET scan a week or so ago. (My sense of time is greatly skewed these days.) It showed that some tumors are bigger while some are smaller. The only remaining option is more chemo. I’d asked mom in the hospital if she’d go through more chemo. She said that if they could guarantee it would be just like the last round, she could handle it, but if it was going to be any worse, no thanks. I can’t say I blame her. Spiritos (the oncologist) also mentioned to my dad that mom’s mental state is not related to the cancer (stroke? delayed onset of radiation? nobody knows), and that even if chemo worked, it wouldn’t help any of her other symptoms since they’re not related. They’ve decided to wait a few more weeks without changing anything to see if mom gets any better in terms of her ability to walk and talk, etc. She’s seeing a nurse and physical/occupational/speech therapists regularly.

Dad fired that Crystal girl. Well, not Crystal herself. Someone other than Crystal showed up one day and left mom’s catheter line open so it got all over the place when they moved her. So he fired the agency. Dad’s younger sister came to stay for a week, and I know that helped a lot.

My birthday was last Thursday. We usually all go out as a family to celebrate, but mom didn’t feel up to it this year, much as she wanted to go. I called their favorite restaurant, Saint Jacques, and the owner agreed to put a big take-out meal together for us, including some wine to go. He’s a very nice man. I know mom really appreciate it. Of course, she decided to fall right before dinner, so she didn’t feel up to sitting through the whole thing, but at least she got her foie gras!

I still feel guilty about leaving, but we’ve all got to get this stuff figured out. I really need to start working on my thesis…I was supposed to get down into it today, but I found that a day 100% off of everything (exercise, school, work, cleaning, unpacking) would be more useful than trying to do actual work. I’m going to try to work out something with my manager so I can work from my parents’ house one day every week on a regular basis. That will give dad a chance to get out, at least. They have a lot of great friends bringing meals and offering to hang out and help around the house. I’m still hoping we’ll figure out a routine and settle into something soon.

Mom, when she was about my age

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Dad got the results back from the spot they removed from his lower eyelid. Here’s about how it went:

Me: “How are you feeling?”

Dad: “Not as bad as I’m gonna be.”

Me: “What do you mean?”

Dad: “It’s cancer.”

Me: “Hah! You’re kidding, right?”

Sometimes there’s just nothing left to do but laugh. It’s either that or fall apart, I think.

The good news is that it’s minor, basal cell carcinoma, and not melanoma. (Dad said he jokes with the doctors and calls it oregano cell.) I actually found a lot of information about it. Unlike in mom’s case, the information I’m finding is putting me more at ease. Well, everything except the pictures. Yuck.

Dad’s going to try to schedule surgery soon. He said they weren’t going to put him under for it, but I can’t imagine how else they’re going to do it. I would not be able to sit still while someone freezes off my eyelid. No thanks. LASIK was bad enough.

Mom is getting worse. Dad’s worried that it’s her heart. Hopefully she’ll be able to see someone soon who will do more than give her energy pills.

It’s going to be fun for a while. I’m glad I’m working at a place that allows me some flexibility in terms of where and when I work. I have a very supportive manager, so it will be easier for me to hang around the house and help out since both of my parents will be laid out for a while.

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Life has admittedly been a bit hard lately. My new job keeps me busy all day (if I let it!), and I would be 100% thrilled about that if I didn’t have what seems like a million other things to do too. I’m struggling to find time to do my thesis research, which needs to be complete by the end of the month; I did recently find a great lead that makes me feel like I’m on the right track, though. It’s also been a struggle to fill a parental role at home.

I will take yesterday as an example. I blocked out some time over my lunch “break” (still me at my computer tied to email and IRC) to do some of my reading, and I was feeling great about all I had accomplished for work and school during the day. I was thrilled that I would have a relaxing evening at home to veg out and rest before starting early again the next day. I came home in a great mood. I walked in the door to, “Oh, I thought you were your father.”

“Sorry to disappoint,” I say.

Dad had gone into the hospital to have a minor procedure, and he should have been home much earlier, but his appointment was delayed. Mom had been cooped up at home alone all day (she still can’t drive, and she can’t do all that much on her own, so I’m sure she was stir crazy). Mom immediately went into telling me why she didn’t want to shop at Whole Foods (I’m afraid I’ve been overly aggressive about the eat-better thing, but I can’t stand to watch her killing herself anymore), and hearing all of her excuses (all of which boil down essentially to laziness or apathy) got me all riled up again. Then dad got home, and he needed prescriptions filled, but neither one of them could drive, so I had to go back out to the store to get those filled and pick up another one for mom.

So much for a relaxing evening.

Now, none of this is their fault, and I’m not writing about this here so you’ll think I have awful parents. This is just my new reality, and I’m having trouble adjusting. I love my parents very, very much. I wish I could do more for them. I wish I were more patient. I sometimes feel like they don’t realize how much I’m doing…or how much I’m doing for them. I don’t want them to quit asking me to do things for them; I love being able to help out, and that’s why I moved back, but I wish I could plan for these things. If I had known I had to go get prescriptions after work, for example, it wouldn’t have been an issue at all: I wouldn’t have set myself up to expect a free evening, and thus I wouldn’t have been disappointed. If I know I have to help with laundry, I can build that into my Saturday plans. If I know I have to cook…well, you get the idea. I know you will say that some things can’t be planned for, and that’s true. I wish it were just the exception instead of the rule.

Mom isn’t doing very well. She keeps ignoring the advice of her therapist and ends up doing things like falling on the deck. She’s a strange mix of stubbornness and apathy. She’s frustrated that her energy level is still so low. I wish she’d believe me that diet will make a HUGE difference.

Food matters, folks. Think about how you feel after you eat a huge burger and plate of fries. Heavy, greasy, and exhausted, right? Like you just want to take a nap? What about when you skip a meal? Get tired and grumpy? Or what about when you eat a candy bar? That rush and crash? And you still want to believe that food doesn’t matter?!

They did make an appointment with a dietitian, but that isn’t until September. Dad’s trying really hard, but they still end up with things full of junk like sucralose, which is a known toxin. The fact that they shrug it off bothers me. Sometimes I think it would be better not to care. There was this guy on the Biggest Loser last season…his son had basically disowned him, saying that if his father was insisting on killing himself with food, it would be better for him to start thinking of him dead now. That motivated the father to change. I wonder if that’s the last resort here. Nothing else I’ve tried seems to work.

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Stroke

I’ve been neglecting this blog for a while. I’m not sure why. I think things were going very well for a while, so that’s part of the reason. I also finally made it down to NC, which is great. I’ve been here for over a month now. I don’t see as much of my parents as you think I would while living in their house, but it’s great to be so close and to have the chance to at least see them every day.

I guess mom decided that cancer just wasn’t enough, so she decided to go ahead and have a stroke. It started last a week ago last Thursday…she was walking to the mailbox outside and suddenly started veering off to the right, unable to straighten herself. She didn’t fall, though. She was fine until Friday afternoon, when she fell over trying to bend down to pick something up. She called the doctor, who moved her MRI up from sometime in August to 6/28 (we were all afraid it was another brain tumor). They told her that if she got worse, she should call and go to the ER.

Well, she was worse Saturday morning. She couldn’t stand up at all, and dad noticed that her speech was slurred. We called the emergency number, and they told us to come into the ER. Mom wanted to finish her tea and have her breakfast, so we went in after that. 😉

Mom told the ER folks that she was just there to have an MRI. She told me while we were waiting that dad had mentioned that he thought it might be a stroke, so I told that to the ER folks, and that sent them into a tizzy. They immediately got her back and gave her an EKG. After that, it was honestly quite scary. They got her into a room and swooped in, three of them at once, attaching things to her without saying anything. They put in an IV (just the apparatus; no drip), took her blood and her vitals, and then were out just as quickly as they came in. Then a nurse and a doctor took turns interviewing us before sweeping her off to a CT scan.

The CT scan didn’t show anything, but the ER doctor consulted with mom’s oncology team, who wanted her admitted. I ran home to get her some things and to pick up lunch for all of us, and by the time I got back, she was up in her hospital room.

They kept her from Saturday to Tuesday (which was dad’s birthday, so it was great that she got to come home and have some of the delicious walnut cake that I baked!). I took her meals as I could…we even had a kind of picnic with kebabs that dad grilled for us. They ran every test you can think of; I can’t even name them all. They never found out the cause. There was no sign of residual damage, and there was no sign of blockage anywhere in her arteries.

They sent her home and gave her a heart monitor that she has to wear for a month in case she does had a-fibs. They also put her on Lipitor, which I learned was not just for cholesterol, but to help veins somehow. The oncologist said this shouldn’t have happened and was unrelated to the cancer. Just very strange.

So mom is weak in her right side. She has trouble with her right leg, but that is strengthening. She can’t hold a pen in her right hand, which is frustrating. And her speech is slurred…sometimes she has trouble thinking of words, too. It’s pretty scary. I know it could have been worse, but this is ridiculous. She’s just gone through enough.

I learned some things about myself, too. While she was there, I helped her change clothes, go to the bathroom, and walk around, and I brought her food and fetched her things. I learned that I don’t think I’m patient enough to be a good caregiver. I’m not really able to give myself over completely. I still have an expectation that people consider how things affect me, and I don’t think that’s happening. I know it’s extremely frustrating for mom; I don’t fault her for anything, and I know she’s doing the best she can. It’s just me and my personality. I still want to be the kid, and, unfortunately, I think that time has long passed.

What DOES make me upset is the state of food in the house. I don’t understand how people can complain that they don’t feel good, don’t have energy, feel nauseated, etc., and then constantly eat fried food, rich desserts, thick mayonnaise-based sauces. I wish I had the resources, time, and energy to cook all of their meals for them. I understand that the major constraint is time and energy and that they just don’t want to cook all the time. I get it. But I also understand the healing power of food. If something is making you sick and you want to get healthy, stop doing what is making you sick. It’s not fair to continue doing that when there are people around who love you and want you to be around a long, long time. It’s just not fair.

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Sorry it’s been a while since my last update. The results of mom’s PET came back okay…I’m sure we were all wishing for a complete remission, but everything seems to be shrinking, so it could definitely be worse news.

She just had a bone scan, which showed cancer cells in her ribs and spine. They aren’t sure if those cells have been there for a long time and if the Tarceva might have stopped their growth, or if these cells are relatively new. What they do know is that they’re slow growing (good) and unaffected by chemo (bad). They told her something like…it’s nothing to worry about until you feel pain, and you’ll know if it’s bone-cancer pain because it’s unending and excruciating. Sounds like a blast.

Mom’s still having issues with her energy, which might be a result of the chemo or because of her thyroid. Nobody knows. She also said that she’s afraid the effects of the chemo are stacking up…after each treatment, she feels worse than she did before. I hope it starts to get better.

I’m planning to go back down to see my folks the last week in March, which will be nice. It feels like it’s been a long time…and I guess it has been since January?

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