Minor accomplishments, major frustration

I wrote this post at at about 11 on 1/1. I was so exhausted that I wrote it and couldn’t manage to remember to publish it.

I got home at about 11 last night. I did the dishes, washed mom’s soiled clothes, all the towels that were used to mop up bodily fluids, the rug, her slippers; cleaned the bathroom, washed the bathroom floor, cleaned the carpet in the bedroom and the hallway, managed three days worth of email, emptied the litter box, threw away a ton of food (note to self: next time clean the fridge before emptying the litter box,) put the garbage out, took the recycling bin in, emptied a ton of junk from the car, and cleaned out the cooler and prepped it as much as possible for tomorrow.

I did not: pay my now extremely late bills, or take a shower.

I went to bed at four.

Now I’ve finally showered (after four days–had to wash my hair twice and scour with a scrub brush,) eaten an actual meal (sort of,) had some coffee (yeah!) and I’ve got to run out to the hospital.

I know she’s miserable in the hospital, but at least she’ll have a clean bathroom and bedroom and clean clothes to come home to. And she got to watch TV.

* * * * *

Now it’s after midnight on 1/2. I’m finally going to pay some bills, somehow. I’m trying to work past the frustration of having found out, on 1/1, that mom had a health care spending account. I’ve been spending a fortune on things she needed, paying out of pocket (well, on nearly maxed out credit cards,) because she needed these things, and all this time she had a health care spending account which has probably forfeited all funds for the past year. She knew that she had it, but she didn’t understand what it was. She actually thought it was a card which would simply send charges to her insurance company and they’d pay the charges.

On Monday, if I can remember that long, I’ve got to see if I can be reimbursed for all these past expenses. I’m not hopeful.

 

“Mom hasn’t eaten all day. Could we get her some food please?”

Mom is in the hospital. I’m convinced that the emergency room is a much more harmful place than the bathroom.

Mom fell in the bathroom again today. I waited until five in the morning, when I figured all the bathroom problems would be sorted out, and I crashed for about four hours or so. I woke up briefly because I thought I heard something, but I’ve been waking up hearing imaginary noises for days, so I decided it was my imagination and went back to sleep.

It was probably the sound of mom falling.

When I got up and stumbled into the kitchen I heard moaning. I took a deep breath and walked into the bathroom. Mom was wedged between the toilet and the tub. I had warned her yesterday that the towel rod was not to be used to support her weight; that it would rip right out of the wall if she tried. Today the towel rod was on the floor beside her. There was no blood on the floor.

Mom finally admitted that I was unable to lift her out of there, and agreed to let me call for help. The EMTs who arrived helped her up and got her into a chair. I helped her get dressed, and the EMTs used mom’s new wheelchair to get her into my POV so I could drive her to the hospital. On the way, I asked why she didn’t call me when she fell.

“You looked so tired last night,” she said. She didn’t call me because she wanted to lie on the cold bathroom floor for hours while I slept. How can something that sounds so rational be so completely insane?

The hospital was fucking amazing. That emergency room is pathetic. One nurse was awkwardly caring for mom when a second nurse walked in and introduced herself. To the first nurse. The first nurse left the new one in charge and vanished, and the new nurse decided to access mom’s port to draw blood. She seemed quite fascinated by the port (“Wow, it’s triangular!” she said as she palpated it,) and nervously gathered together all the things she’d need. She stood with many more packages than I expected and a pre-made kit stacked up on the biohazard trash bin lid (!) and realized that she didn’t have a mask. She searched the drawers for one, then left to go get one.

She returned with one of the cheap paper masks they give coughing patients. She put the mask on, and searched the drawers for gloves. Finding none, she left to go get some, walking right past the three boxes of gloves mounted at eye level on the wall by the door.

She came back again, put on the gloves, and opened the kit. She nervously smoothed out the protective paper wrapped around the kit, and then removed from the top of the kit… yes, a mask and a pair of gloves.

“Excuse me, I’m sorry,” I said. “Have you accessed a port before?”

She looked at a point just over my right shoulder. “I’ve done this a thousand times,” she lied.

“I hate to say this, because I don’t want to be rude, but I just want to take care of my mother,” I explained. “If possible, I’m wondering if we could have someone a little more experienced access the port for her. She’s had a very difficult day, and I don’t want her to go through any more pain than is absolutely necessary.”

“I’m VERY experienced,” promised the nurse who had to introduce herself to the other nurse, who didn’t know where the gloves are.

“I understand that, but call me a helicopter daughter if you like. I’d really like to have someone else access the port if that’s possible, please.”

At that moment the doctor came in, so the new nurse left.

The whole day was pretty much like that. The other nurse came in, failed to access the port and caused mom great pain while trying, then decided to root around in her hand with a needle for several minutes to draw blood from there. The bruise she left behind is quite impressive.

If I had had half a brain, I would have stopped at the nearby oncology office to have the port accessed before going to the hospital. But I don’t know how I would have gotten her into the office.

Mom had several tests throughout the day. The emergency room was mystified by her white blood cell counts, even though I told them that she’s a chemotherapy patient and had just had Neulasta and Procrit. I didn’t think I had to explain what Neulasta is, but looking back perhaps that might have saved a whole lot of frustration and several tests for infection. They did a chest x-ray because they were convinced that she must have an infection. And the chest x-ray convinced them that she must have pneumonia. The last PA I talked to kept asking me about coughing and difficulty breathing. Finally she asked “Does your mother have a history of cancer?”

What, the woman with the completely bald head and the port in her chest, who just had Neulasta and Procrit and chemotherapy? No, nothing other than the small cell lung cancer. Why do you ask?

Did they even LOOK at her?

 

Can we go back to normal now?

Mom fell again tonight.

We’d visited friends to play cards, and were almost back at the car when she fell. I wasn’t able to catch her, but at least I could keep her head from hitting the walk. I reinjured myself again doing it.

Everyone gathered around to pick her up and help her into the car, and we headed for home. I had no idea how I was going to get her into the house. One of those friends called to remind me that the fire department can be called to help with things like that. I didn’t tell her it’s called a lift assist, and way back before I became useless I’d done plenty myself. I did tell her that I’ve suggested that several times to my mother, and every time she’s refused. So now that it’s my turn and I need other people to help me with a lift assist, I can’t even ask.

We got home, I parked on the septic tank to get mom close to the house, and we got her into the bathroom. When she came out I shook my head in the hopes that what I was seeing wasn’t really happening. Mom was walking from the bathroom to the bedroom with her pants down around her ankles.

I told her I was getting a chair and she was to stay right there, and she began walking much faster than I’ve seen her walk yet, so that she’d get to the bedroom before I got back with the chair. She can be remarkably agile when she wants to be. It’s a short distance to the kitchen for a chair, yet she beat me.

“Do you understand why what you just did is incredibly dangerous?”

“I’m fine!” she snapped, which is a poor answer to a yes or no question.

“Mom, have you ever seen someone play a practical joke where they tie someone else’s shoelaces together? Do you know why they do that?”

“I know. I want to go home. Get on the computer and get me a cheap plane ticket.”

“Are you seriously telling me to send you home to live alone while you walk around with your pants around your ankles?” I asked.

“I don’t do that,” she said as she sat with her pants around her ankles.

“Mom, when you say something and there’s obvious evidence to the contrary, it is very hard to believe you.”

“I don’t DO that!” she said, annoyed.

I want the mother I had before chemo brain.

“If I see you do that again,” I told her, “I will take all of your pants and give you nothing but skirts.”

“Why are you doing this?” she howled. “I need encouragement!”

Yes, I think I should definitely encourage her to walk around with her pants around her ankles. Next week I’ll encourage her to stick hot needles into her eye.

What little sanity I have left is crumbling.

This week has been horrific beyond description. I won’t even try. Suffice to say that Monday I listened to nonstop screaming for 10 hours, until I finally gave her some Valium to let her sleep for a little while. During those 10 hours, she refused all medical help and went berserk when she found out I was on the phone with the doctor’s office, confirming an appointment. Tuesday and Wednesday were spent at the doctor’s office, getting IV fluids. The entire day is shot to hell when we do that, so I’ve been unable to follow up with getting in-home health care or a physical therapist, two things we need desperately. Mom is eating an occasional candy or cookie, and moaning and sighing and whining when I suggest actual food. On the way to the doctor’s office for fluids, I gave her a travel mug with water and four ice cubes. Twice she insisted that she couldn’t drink the water because it was full of ice and she had to wait for the ice to melt. I had to pull over to take off the lid and show her that it was mostly water with four ice cubes. Twice. I guess she didn’t believe me the second time, either. Perhaps the ice multiplied while we were driving. And since I’m the one who poured the water, I’m not sure how she thought she’d confuse me about what was in there.

I’m not taking care of myself because every moment has to be spent watching her. Either she’s pouring water over the electronics in my car so that she doesn’t have to drink it (obviously I’ll never notice THAT,) or she’s throwing food away so she doesn’t have to eat it, or she’s walking without her walker or with her pants around her ankles. She lies constantly, and is deeply offended when I call her on it.

I have no idea if she’s doing this deliberately or if she has simply lost her mind.

 

Merry Christmas…

Last night I dug through my folder of unused cards to find a Christmas card for a friend. I came across an old card I’d never sent to mom. (I’d forgotten to include cards with the gifts one year.) This means I have two cards to give to my mother, and I can really only give her one.

I had to sit and think for a while about which was the best card to give. Usually I’d just set the other one aside to give her next year.

There’s a really good chance that won’t be an option this time.

Merry Christmas. Give your loved ones a hug while you still can.

 

Under a rock in a hard place.

Mom is deaf.

She’s completely deaf in one ear, and she’s nearly deaf in the other. She certainly hears all the things I’m trying to do silently, but it’s impossible to speak with her in a normal tone of voice.

If she calls me and I respond in a normal tone of voice, she doesn’t hear me and gets more and more frustrated as she yells my name louder and louder.

If I respond in a louder tone of voice, she gets angry because I’m yelling at her.

If I position myself in front of her and use hand gestures (two palms up for “What?”, for example,) she gets angry. I guess she thinks I’m mocking her for being deaf.

She won’t consider a hearing aid. That would make her look old. The same is true of her reading glasses. Asking people to repeat themselves several times (or looking to me to have me shout what was said at her) and holding menus at extreme arm’s length certainly don’t make her look old, so I can see the logic there.

So I have my choice of angry or frustrated. Either one will get me yelled at. Decisions, decisions.

 

I am a failure and a fucking idiot and I deserve everything I get.

I’m angry at mom.

This is news to me, but this is what I’m told. I’m angry at her because she can’t eat and because she sleeps too much.

Oddly enough, I thought I was working hard to try to make appealing meals to make it as easy as possible to eat. And I would swear that I’ve told her several times that she’s sleeping so much because her body needs the sleep. I thought I heard myself say that it wasn’t a problem and she should sleep if that’s what she needs to do. I seem to remember tiptoe-ing around the house all day long so that I don’t wake her up. I’d swear I had put workout videos on my mp3 player so that I could listen to them with headphones.

I’m lying, of course. Or rather I’m “making it up” and I “actually believe it.”

She can’t pick her leg up. The only reason I think she can is because I don’t understand her condition at all. I have seen her get into my Jeep four times, but I’m sure that was my imagination too. Perhaps she was clutching the side view mirror for dear life as I dragged her alongside.

That is the kind of rotten thing I’d do.

I’ve cut back my own therapy so that I could try to make the house as ready for her as possible. I’ve spent money that I not only don’t have, but I’m not sure I’ll ever have it, just to make things easy for her and to get her things she’ll enjoy. I decorated for Christmas when I had no intention of bothering, and I certainly can’t afford to pay for these decorations. I’ve spent more on food in the past week than I’ve spent in any given four months this year, just to try to have the quality of food that she’s used to and she’ll enjoy. I’ve spent hours cooking and remembering how to cook, trying to make appealing meals, and then I’ve quietly cleaned up, being very careful to not bang dishes and pots together, because mom doesn’t close her door and I don’t want to make a loud noise and wake her up. I turned the ringers off on all the phones but one, and I carry that one with me at all times so the ringing phone doesn’t wake her. And if I need to make a call I go outside, no matter what the weather is.

I’ve bought a toilet seat and a shower seat, I’ve set up her bedroom and bathroom so that they have everything she could possibly need. I even put roses in both rooms to try to brighten the place up a little, because decorating hasn’t been at the top of my priority list.

I’ve spent hours on the phone with doctors, working to understand her condition and what I can do to help her. I’ve spent more hours on the phone with credit cards, utilities, banks, and who knows what other creditors, straightening out her finances after she was in the hospital. I’ve got full access to all her accounts and even though I live on rice and beans and get collection letters every other day, I haven’t even dreamed of stealing a dime of her money. I’m so fucking exhausted that I can’t even enjoy these wonderful meals that I’m making.

All I asked was that she try.

Try to eat the food I make. Ask for food she can eat if she can’t eat what I made. Try to drink a glass of water. Try to get up for an hour or so and play cards with me so that she’ll sleep the whole night through. Try to step up onto the Wii Fit board to play a balance game to improve her center of balance and lessen her chances of falling. Try to keep the walker with her at all times so that she doesn’t fall.

Just try.

At every turn, I get “I CAN’T!” I wait, and finally she does try, and you know, most of the time she succeeds. Sometimes she doesn’t, and that’s OK. I didn’t ask her to do. I asked her to try.

I thought she looked really good. Her face looked like a yellow-green skull with eyeballs when she got here. Now she’s got some color in her face, the yellow is gone, and she says she feels a lot better. And yet, I’m an idiot for trying to force her to do things she CAN’T do.

I thought I could improve her quality of life. I can’t cure her cancer. But I can help her to make herself a little better, a little stronger, a little less sickly and dehydrated. At least I thought I could.

Now I find out that I’m doing all these things because I don’t understand her condition. Because I thought all she needed was a little care and she’d be magically cured. And now I’m surprised because I’m finally beginning to understand that she has cancer.

Fuck it. I give up. Clearly I’m an idiot. We’re doing things her way from now on. I know she wants coffee in the morning; coffee will be waiting. If she wants food she can ask for it. I’ll give her whatever she asks for. If she wants something to drink I’ll get it for her. If she doesn’t drink it I’ll water the plants with it. If she wants to sleep the whole day through and miss every meal, and lie awake at night because she’s slept for 20 hours straight, that’s fine by me.

Christmas is canceled, unless she asks for it. Fuck the holidays. I’ll never celebrate them again. Merry Hallmark/Wal-Mart Day to you, I’ll be home with a book and a drink.

She is right. I do finally understand.

 

Wait, what?

Mom has been eating meals that are almost meal-sized. It’s a battle of wills. I serve a normal size meal, she picks at it. I frown, she takes a few more bites. She sighs and moans and puts a hand on her too-flat belly, and I raise an eyebrow and lean forward, pointing at my own plate which started with the same amount of food as hers. Finally she chokes down most of the meal, and the rest gets thrown away. It’s a compromise. But it’s better than the days of “I’m not hungry and I had a big lunch, so I’ll just skip dinner.”

“I have a problem with my appetite,” she said happily.

“That’s not good,” I told her.

“For me it’s good,” she said.

No, it isn’t.

And everywhere she goes, she’s got something to drink beside her. Ice water, juice, Boost… it’s always there, in her way. (Well, OK, I don’t follow her into the bathroom with it.) And if it’s in the way and her hand brushes it, she drinks it.

When she arrived she was completely dehydrated. It took me a little while to realize that she simply doesn’t drink at all if she can help it. Now she’s been sipping constantly, with an enforced 10-ounce glass of water or juice at every meal, and at least one Boost a day.

It’s been two days, and she looks like a new person. The hideous green-yellow cast to her skin is gone. Her face was sunken and lined with fine wrinkles everywhere; now they’re gone. She’s even standing up straight–she was bent over in a C shape when she got here.

We finished dinner tonight with slightly less moaning and groaning than usual. And when we were done, she looked at me and asked “Do you have any chocolate cake or pie?”

I blinked. I wasn’t sure my ears were working. She asked? For food? For dessert? What? Um… no, we don’t have any on hand, but if she’ll eat it I’ll damn well MAKE some!

“Not yet,” I told her as I dragged a huge box out of the pantry. She asked what it was. “I’ve been waiting for a reason to unpack this since the move,” I told her as I pulled my Kitchen Aid mixer out of the box.

“You don’t have to do that!” she said, amazed.

Yes I do.

For some unknown reason, over the past couple of weeks I’ve been buying everything I need to make cake, including cake pans. I never bake anymore, but I told myself I wanted it here for the holidays. I even had everything for buttercream frosting. I washed the mixing bowl and got to work.

We played cards while the cakes baked, and before they were completely cooled (yeah, I know,) I frosted them. The frosting melted between the hot cake layers. It looked awful, but it tasted great. Mom had a huge piece, and she finished it all.

If I keep this up I’ll put on 10 pounds. But it’ll be worth it. Maybe I can get her up to a normal, healthy weight before chemotherapy starts again next week.

 

Another learning experience.

Apparently everything mom went through yesterday was a way to get me to give her a throw pillow to sit on. Now that she’s got one, she pushes up on the chair instead of pulling on the walker, and she gets right up. “See? I told you!” she says proudly every time.

Why she simply didn’t say “May I have a throw pillow?” is a mystery to me.

Ah, chemo brain.

Over a month and a half ago, I started the process of getting an oncologist here for mom’s visit so mom could continue chemo while she’s with me. I got a recommendation from someone who is very pleased with his doctor, and one other person has confirmed that recommendation. His office has been a breeze to deal with. They gave me a list of information and reports they need and a toll-free number for their fax. I called mom’s doctor back home immediately and asked them to send the information. “We’ll get right on it,” they promised.

A month later, after they’d been telling mom they’d long since sent the information, I called to ask where it was. “Oh… uh… I just saw someone walk by with it. We’re sending it out right now.”

As a result, we went from “pick any day for her appointment with the new doctor” to “he’s booked solid, but I’ll squeeze you in two weeks from now on his lunch hour.”

Mom will be here a week before she sees the new doctor. She was supposed to start chemotherapy yesterday.

With the incredible mobility issues we’re having, I called her old doctor to ask that they write a prescription for a wheelchair and a visiting nurse. “You need to talk to her local doctor about that.”

I explained that since it took so long to get mom’s paperwork here, she would not see him until next week.

“Then take her to the emergency room.”

I’ve tried. Mom would never agree to that. They insisted that I had to call the new doctor and he’d handle it, even though he wouldn’t even meet her for a week, because he’s got her paperwork.

So I called the new doctor.

“I wish we could help, but we haven’t even seen your mother yet.”

“That’s what I thought,” I told them.

They suggested I call hospice. That’s a call I’ve been dreading, but I called. Hospice explained that because she’s still being treated, they couldn’t register her as a patient, but they gave me some local phone numbers and told me these people might be able to help by calling the doctor and advocating for mom.

My local hospice is incredible. I watched a dear friend last year in hospice, and his last words to me were instructions to get my mother here so that hospice here is available to her when she needs it. I called the people they suggested, and it would seem that they gave me numbers that are reserved only for hospice use. Everyone I spoke with was incredibly helpful and understanding, and they promised to call her doctor back home and see what they could do.

If they still refuse to sign a prescription for a wheelchair, I genuinely have no idea what to do.

 

“I *CAN’T* get up! I *CAN’T*!”

Mom and I played a few games of Bananagrams at the kitchen table, then she got up to go to bed.

Correction: then she announced her intention to get up and go to bed.

What followed was 45 minutes of wailing that she CAN’T get up. It’s the chair’s fault. She can’t pull herself up off it.

“Push,” I told her. “Push on the chair. Don’t pull on the walker. It’s a good solid wood chair; push on it.”

“I *AM*!” she shrieked as she clutched the walker.

“Lift with your upper arms and shoulders,” I explained. “You have no strength in your forearms. No one does. Have you ever seen a bodybuilder with lumpy forearms? All their muscles are in the upper arms and in the shoulders. You can’t pull with your forearms. You have to push with your shoulders.”

“I did that!” she howled, tugging at the walker.

“What would you do if you were home alone?” I asked quietly.

“I WOULDN’T SIT IN A CHAIR I COULDN’T GET OUT OF!” she shrieked as she slapped the offending walker.

The kitchen chairs are the tallest, most solid and stable chairs in the house. All of the others are low, have lots of padding, or have wheels. The barstools are taller but very wobbly. I asked her to describe the chair that she could get out of, and I promised I’d go buy it tomorrow.

She didn’t answer.

I’ve picked up more patients than I can count, but I can’t do that anymore. I told her that before she came. I can try to help, but in the end all I can really do is stabilize her if she starts to lose her balance. She has to get herself up.

According to the doctor, she’s passed all the tests that measure the strength required to perform daily tasks. She has the strength. He has no idea why she has such difficulty with these things.

After 45 minutes of hysterical wailing and quiet suggestions, she finally took the suggestion to put her hands on the chair and push. And she stood up.

And she went to bed.

And I started the work that I should have been doing all this time. It’s going to be a very late night again tonight.

 

Here we go.

Mom arrived at dinnertime yesterday. On her way to bed, she fell. It took an hour and a half to get her off the floor and onto the bed.

Cancer sucks.