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Posts Tagged ‘weakness’

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’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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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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I went over to my parents’ house after work to see mom and have dinner. Dad said she was great this morning, but I guess an hour-long bed bath from the hospice CNA wore her out because she was awful when I got there. She and dad were both in their bed (mom under the covers as usual; dad on top of them in all his clothes, including his sneakers), and they were listening to a relaxation CD that one of their friends brought over.

Everything has been moved into their bedroom. Dad has even started helping mom brush her teeth in bed. I’m afraid she won’t be able to get out of it much longer. She can’t stand up on her own…she can’t even remain standing up on her own once we’ve got her up. It’s not good. My biggest fear is that she’s going to end up like her mother, who spent years just lying in bed, even after she was no longer able to respond to folks in the room. I never understood what she was hanging on for.

We talked a little bit more about funeral arrangements. We’ve mainly been discussing where it should be held. The problem is that sometimes mom knows what she’s saying, and sometimes she doesn’t, so we ask questions dozens of times to sort of average out the answers. I think we’ve decided on the church I grew up in. Dad’s worry is that it just won’t be big enough for everyone who wants to come. Mom is such a blessing to so many people, the church will be full to overflowing. I told him that we could pipe the ceremony out into the parking lot if we had to.

Some of you might find it odd that I even care about the church since I’m not religious. But there are only two men I’ve met in my life whom I consider to be true preachers, true men of God: one is Fr. Hale, the founder of my elementary/middle/high school; the other is Rev. Walkup, the pastor at our first church. He and I had a special relationship, and he and my mom had a special relationship. We all helped each other along our spiritual paths. He never judged me, even when I was wrestling with myself, and years after we all left that church, he supported me in the peace I’d found as a Buddhist. When I think of that church, I think of the time he walked with me down the halls and answered all of my questions, like how God was able to be everywhere and yet still walking in the Garden of Eden beside Adam, chatting away. (I was maybe six or seven years old at that time.) His heart beats there, and as mom said, “that’s where my heritage is.”

Anyway, dad and I had a great conversation over dinner, as usual. I love that my parents are my best friends. Although it does make what’s happening to mom even harder.

Dad’s 50-year high-school reunion was tonight (well, Friday night: it’s early Saturday morning right now). He’s upset to have missed it. He just couldn’t leave mom for that long, I think.

After dinner, I helped dad get mom ready for bed. Once we’d tucked her back in, she got worried that we were leaving (I has heading home; dad was going to decompress in the TV room for a few minutes before bedtime). “What if I have to get up?” she asked. Dad told her to just throw the covers off, and he’d see it on the monitor he has set up in the room so he can keep an eye on her at all times.

He leaned over, put his hand on her shoulder, and said, “Remember: I’m here, and I love you.”

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Today’s Tuesday, so it’s WFP (work from my parents’ house). Dad said mom has been weaker these past couple of days, but I wasn’t expecting her to be as bad as she is. I forced her to get up just to brush her teeth and wash her face (or wash her teeth and brush her face, as I like to say). And by “forced,” I mean I had to rip the blankets away from her clenched fists. She did not want to get up, that’s for sure.

She was hardly able to make it to the sink. She shuffles baby steps instead of actually walking, and she can’t stand up straight anymore. At the sink, she leaned back into me for support instead of standing on her own.

But I’m getting ahead of myself.

I got here this morning around 7:40. I heard my parents talking in their bedroom around 8, so I poked my head in. Dad was asking mom who she was talking to last night, if they’d been in Russia again. Mom said she had been in Emerald Isle with the bridesmaids for one of her friend’s sisters because the wedding was later today. She said she was definitely there, that she heard them all talking as clear as day. Dad and I just kind of nodded.

I left for a few minutes, then went back to see what she wanted for breakfast.

“When are the mothers coming for breakfast?” she asked, looking at her watch.

“What mothers?”

“The mothers of the bridesmaids.”

*pause* “Mom,” I said, “there’s no wedding.”

I can’t explain her facial reaction to that. It was almost like a young child who had just been scolded. “Oh,” she said. “Thanks for that.”

I emailed her friend to see if mom was remembering something, but her friend said it wasn’t real.

Things like this make me sad.

But she has this uncanny knowledge of what’s going on. I remember down at the beach last week, mom was getting all agitated because she thought she was going to be late for her dentist appointment. Dad told me later that he’d recently gotten a reminder in the mail for her regular dental check-up. Maybe somehow she knew.

Mom’s friend (the same one whose sister is not getting married) came by this afternoon to talk with mom. Dad had asked her to come over to start talking about funeral arrangements. I remember, and this would have been years ago, mom clearly telling me that she wanted a party: she wanted people to celebrate the fact that she’d finally gone home. I asked her about that today, and she said she definitely did NOT want a party. I asked if she’d changed her mind, and she nodded. So who knows.

I’m sad she’s thinking about this, but it is important. Maybe it will help her to let go. Dad had trouble talking about it without tearing up, but this kind of talk doesn’t bother me. It’s something to do: to me, I get to help plan and orchestrate instead of dwelling on losing my best friend.

I think we’re getting closer to that time. If she stops trying to walk, she will no longer be able to walk. Maybe going to the beach took too much out of her, I don’t know. I just want her to find peace. And for my dad to find peace, too. If there’s any left over for me, I wouldn’t mind a little myself.

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Exhausted.

We made it back from the beach with (most of) our sanity. I made Elana’s pancakes (plus blueberries!) again for breakfast since mom likes them so much. Dad and I decided to go ahead and give mom two of her pain pills so that her back wouldn’t bother her so much during the ride…and also so (we desperately hoped) she would just sleep the whole way back.

It worked! But the bad side effect is that the pills really throw mom for a loop. She was out of it all day and had trouble staying awake. I guess that if it got her home without pain and discomfort, it was worth it.

I am exhausted. I had hoped that I would have gotten some time to work on my thesis while we were away, but it didn’t happen. I had to work two half days because I didn’t have enough PTO to cover the whole week. I felt like I cooked/baked every meal we ate (dad helped with dinner one night; dad’s sister made breakfast once). I had to help with mom every time she needed something. Even if I’d sat down to start working, I would have been interrupted every 15 minutes. I’d rather be interrupted from watching the Tudors (I’ve only just discovered this show!) than from my thesis. Mom was disoriented for most of the trip. And she was extremely weak and had trouble walking. Not so much fun.

I hope dad got a chance to relax a bit. I don’t know if he did or not. We did go out to dinner last night, just the two of us, and even though the restaurant was really loud, we had some good conversations. Caregiving is taxing. I’m not sure people realize.

So I’m very happy to be home. I got mom to her house, forced her to eat a little (she wasn’t hungry at all, probably due to the pills), and got her settled in bed (“You made it!” says I; “We made it,” says she), then ran right out the door once dad got there (and I helped him unload his car). I feel kinda bad that I didn’t even ask mom if she had to use the bathroom. Since she didn’t ask, I didn’t offer. It was just too much for me.

I still get frustrated sometimes. For instance, the other night, she was trying to wash her face. I’ve been helping her wash her face for what seems like months, and she always uses the same thing: this Shaklee cleansing lotion stuff, then this tiny bar of face soap. But instead, that night, she grabbed the bar of hand soap and tried to wash her face. I kept trying to tell her it was the wrong thing and would dry out her skin, but she kept on with it and put it all over her face. I got a little irritated, and then she tried to tell me that she’d been using it for 10 years and knew exactly what she was doing. I tried to explain the difference between the two bars of soap on the counter, but it just didn’t work. She didn’t believe me at all, but she did use the cleansing lotion once I cleaned the bar soap off her face, probably just to humor me. I apologized later and told her that I wasn’t frustrated with her, but with her situation, and she said she felt the same way. Not that it justifies raising my voice.

It’s going to be a busy weekend. I HAVE to get to work on my thesis, and we have a wedding to go to on Sunday, then the cats have a vet appointment on Monday (our poor guy might need teeth extracted: now accepting donations to cover vet bills!). And I need to sweat off the 10 lbs I gained from eating so much this past week. Ugh.

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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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