Wednesday, June 15, 2011

I am coming undone. During the past month, I've experienced ugly family blowups, orchestrated the fastest cross-country move on the planet, sent my husband off for a five-week-dream-come-true trip to the Middle East, and for just one night got out of town last week to Iowa to see some friends.

For the past three days (and the past ten, with the perfect vision of hindsight), my dad has begun a rapid decline. They have been here for, what, a month? So of course, I'm second-guessing everything. If we were still in Utah, then I don't know if I would have my kids with me. Sam is working on campus and taking a college class. I was coming unglued already in Utah-- but if I had known that he was going to start declining this fast, I would have probably just stuck it out there. All indications were that we probably had months. Oh, melanoma, you trickster. You fooled us all.

So, my mom and I, my three kids, and a couple of friends are holding down the fort. I looked at the clean dishes in the dishwasher this morning, the dirty ones in the sink, and then I turned and walked out of my kitchen to come over and be with my parents. Sam has been in charge of meal preparation. Some nice person-- probably Chris-- took out my garbage can for me this morning. I woke up this morning and immediately started to cry, and that was almost three hours ago, and I'm still at it.

Last week, I noticed my dad was very quiet and unresponsive. As in, I would ask him direct questions and he wouldn't answer. I thought maybe it was his hearing at first. He has been pretty quiet all along, so I didn't worry for the first day or two. Last week when I went out of town for the night, my dad started to get a bug in his ear about walking across the street to the hospital to find a pharmacy. My mom was wigging-- worried about traffic-- but it didn't seem unreasonable or dangerous to me, and I was kind of chuckling about it. But then I started to pay closer attention.

On Sunday night, I came over and brought dinner and stayed for awhile to watch TV and some of the Tony Awards. I was sorting out my dad's weekly meds, as I do on Sunday, and I noticed that he had not taken his morning pills four times last week. He was watching a loud baseball game and not answering me when I asked him about it, so I turned off the TV. He shrugged a lot and said, "Welllll," and "I see." It was very bizarre and that's when I started getting scared.

Monday, things started accelerating very fast. My mom called and said that my dad had slept in late and then when he got up, he didn't take his meds. A nurse and social worker came over and my dad was confused. They tried to get him to take his meds, and he kept putting water in his mouth, but not swallowing it. He was disoriented and non-responsive with them as well. I had my mom put my dad on the phone, and he was slurring his words as if he'd had a stroke, so I came over immediately and called hospice.

The hospice nurse who had seen him that morning told me that he had not had a stroke. This is what it looks like when the cancer starts really to hit the brain. It can often mimick stroke symptoms. She suggested that I seize control of the finances immediately, so my mom and I spoke with the social worker yesterday about my assisting her with paying bills and understanding what was going to happen next. My mother wants autonomy-- and I'm going to give her as much as I can so far as making sure that accounts are accurate and bills get paid appropriately.

I brought Sam with me and had him drive me. When we came in, my dad was sitting in the easy chair playing with his phone. I asked him if he wanted to call someone. Sam and I started taking little videos of him so I could send them to Matt and show him. I asked him if he remembered watching the Tonys with me, and he shrugged. I asked him if Martha Plimpton had performed at the Tonys. He said yes.

"What did she do?"

He shrugged and grinned.

I asked him again if he wanted to call someone. He said yes. He called Sam. I got a phone call from hospice and went into the hallway, and when I got back, my dad had called Loren (my nephew) and said, "This is Grandpa Creer. Here's Sam."

We stayed for a bit, and then went home because Mark was dropping off the younger two kids (Sam was already there because he had had class that morning). Then I got a call from my mom that my dad was in the lobby of their apartment building and that he wanted to go somewhere. So, we raced over again. My dad got up when he saw us and I said, "Do you want to go somewhere?"

He nodded. "Yeah."

"Where do you want to go?"

"The post office to get some stamps."

Sam went to pull the car around and my mom went to grab sweaters because it was chilly. As we stood outside watching Sam, my dad leaned in and whispered, "Well, I sort of want to go to the post office, and I sort of don't."

We got into the car and my mom helped my dad with his seatbelt-- she is the more cogent of the two right now, which is so utterly bizarre, it's hard to conceive let alone put into words. She said, "Tom, do you want to go to the post office?"

He shrugged.

I told Sam to drive to the post office, even though my dad has a roll of stamps on his desk.

When we got to the post office, we told him we were there, and he seemed surprised and no longer wanted to go to the post office. I told Sam to drive to the grocery store because there were a few things we needed anyway. My dad didn't want to come into the store, and my mother didn't have her purse, so I asked my dad for his wallet. We grabbed a few things. While Sam and my dad sat in the car, my dad pointed out, "See how that guy is walking? Plip plip plip."

Then we asked my dad if he wanted to go somewhere else.

"No."

So, we went back to their apartment building. My dad said very clearly, "Well, Pat, it looks like we're being dropped off."

"Well, we didn't know where you wanted to go. Do you want to go somewhere else?"

He nodded. "Longer."

So, I told Sam to drive out in the country for awhile.

Then, we dropped my parents off and went home for a bit to check on Christian and Tommy, and I had to run a copy of my dad's advanced directive to the hospice office. My mother called me immediately. "He's in the lobby. He wants to take off again. He thinks he needs to go to the cleaners."

"Just tell him I'll be there in five minutes, and see if that calms him down."

She called me again shortly. "Jen, nobody would help me, and I couldn't stop him. We're in the liquor store [right across the street.]"

"What is he doing in the liquor store?"

"Walking around and around. I can't get him out of here."

"I'll be right there."

Christian came with me and we went to pick them up. My mother was nervously watching out the door for me. I went in and my dad was staring down cases of PBR.

"Dad, do you want to buy some beer?"

He looked at me with surprise. "No."

"Well, I do." I grabbed a six-pack of cider and a pack of cigarettes, bought them, and got him into the car. I decided the safest thing to do would be to bring them over to my house so we could at least lock the front door and then tackle him if he tried to wander out the back.

It was about 5pm, so I put on the news in the TV room and set my parents up in there. Sam made grilled cheese sandwiches and soup for dinner, and I sent an email around to our family members apprising them of the situation. My dad did fine with the soup, but he kept eating bites of the sandwich and then not chewing or swallowing them until he gagged and it was literally coming back out of him. I ran for paper towels while my mom held his soup bowl in front of him and we had him spit it all out. I gave his meal to the dogs, and got him some yogurt, which he ate with no problems.

My friend Carol came over to hang out and we turned on a baseball game for my dad until my mom wanted to come home. When my dad was walking through my yard, he grinned at us and pretended to run away and giggled. We came over and got them settled and then I went home and collapsed.

Yesterday, my dad slept until noon. The social worker came over and we talked about the final days, signs of things to look for, that we were truly in the final stretch now. She gave us some literature to read and I went to her car and she gave me mattress pads and wipes and Depends.

I was here most of the morning, but when I ran home for a bit, my dad got up and showered and shaved himself! He was lying on his back, purple-faced, when I came in, struggling to get dressed. I helped him sit up, and he started vomiting. I had Tommy with me, so I had him grab a garbage bag and a towel and wiped my dad up. Then I buttoned his shirt and tucked his shirt into his pants and helped him with his belt. He want and sat on the couch, and I pulled up a chair next to him. "Dad, do you know what day it is?"

"Tuesday."

"Do you know the date?"

"Fourteenth."

"Do you know the month?"

He raised his eyebrows and gave me a withering look. "June."

"Dad, do you know that you've been acting a little bizarrely lately?"

He nodded. "Yes."

"Are you acting this way on purpose or because you can't help it."

"That one."

"You can't help it?"

He nodded again.

"Okay then."

We gave him a bowl of soggy cereal to eat and told him to chew and swallow each bite before swallowing. He gave me another withering look. I said, "Look, I know you can't help it, but I'm not going to let you choke either."

I asked him if there was anyone he wanted to talk to. He said yes. I handed him his phone and he called me. I answered it, "Hey Dad, how's it going?"

He boomed, "Mighty fine, mighty fine!"

I asked him if there was anybody else he wanted to talk to and he pointed to Tommy, so I handed Tommy the phone and they talked for a bit. I was amazed by his ability to put together sentences with a phone to his ear. I felt like I was watching an episode of House.

I ran home for a break and my dad fell asleep on the couch and pretty much stayed there until 5. I came and went and I really don't remember what else I did. Talked with Sam about dinner plans. Sam made chicken enchiladas on his own. I gave him some simple instructions.

At 5, I met Chris and we moved my mom's recliner over. Sam was here with dinner for my mom, and my dad had woken up and said he was hungry. My mom got him some yogurt and he put it down without eating it. She kept pressing him to eat, and I said, "Mom, they specifically told us not to push foods."

"Well, he said he was hungry."

"Once. The past 5 times you've asked, he has said no. He has yogurt in front of him, and if he wants it, he'll eat it."

My dad chimed in with an emphatic, "YEAH!" and nodded his head. He eventually ate the yogurt.

I had called Hospice when he choked on his sandwich Monday evening and asked if we could get liquid medications for him. They called me back Tuesday afternoon and told me that the doctor was removing him from his heart and blood pressure medication, and also the medications that keep him from shaking and the medication that kept the tumors from weeping and filling his abdomen with fluid (I guess it doesn't keep them from weeping-- it was a diuretic). That was probably the thing that struck me the most. The doctor removing him from all but palliative medications. Wow. Things just got real. Like they weren't already.

Last night I strongly considered not removing the meds. It took me a long time to sort them and return those pills to their bottles.

Sam brought the kids over and their dinner to eat here. While we were getting plates of food, my dad's sister Diane called. I put my dad on the phone because he seems to speak a bit better on the phone. He told her we were getting ready to go over to my Uncle Harold's for Thanksgiving. After he got off the phone with her, I called her back quickly, wondering if that had upset her. She thought it was pretty funny, but she also didn't get the picture of how grave his condition is until I told her.

After I came back to the apartment, my dad was sort of pacing. I said, "What do you want?"

"Well, I really want to get to Harold's for Thanksgiving!"

So, we ended up piling my parents and three kids into the minivan and going for another country drive. My dad noticed Christian's backpack in the car and picked it up and went through it very soberly, pulling out all of his school papers and studying them. He looked like he was traveling to go give a talk and reviewing his notes. My mom asked him if he was enjoying the ride and he started clapping his hands and said, "Yay!"

I went home for a couple of hours after dinner and then my mom called that she was having trouble with my dad fiddling with her phone and refusing to put on his oxygen and his pajamas. I went over and kind of gave him a stern look and he put his oxygen on. I chatted with him just a little bit and he mostly just raised his eyebrows at me, and then I said good night.

I am on one side fascinated by what cancer does to the brain. This morning, my mom left the apartment for a bit and then my dad opened the door, so I grabbed my keys and followed him. He went to the lobby, and saw my mom downstairs, so he walked over to a locked door and tried to open it. "Do you want to go downstairs?"

"Yeah."

"This way."

We went down the elevator and I said, "Have you ever jumped in an elevator?" and I jumped as it landed to show him. He came out and made a beeline for a hot coffee pot, so I stopped him. Then he wanted to go into the kitchen, and I said, "No, let's go back upstairs."

He is still incredibly strong. He stood his ground and my mom and I could not move him, so I sent her up to call Sam to come over, and my dad sat down on a stack of chairs, so I unstacked another and sat with him, asking him if we could go upstairs every so often. "No."

"Dad, do you know who I am?" He looked at me and raised his eyebrows.

"Jennifer C____."

"Just checking."

He got up again and went into the kitchen, wandered through it, opened the refrigerator and peered into it.

My mom called my phone instead of Sam's and left a message. She came back down and handed me my phone and asked my dad if he wanted some water. He lit up. "Yes!"

She got him some, and he spilled most of it down his shirt and choked on it. I rapped him on the back and he gave me that look of, "I know perfectly well what's going on," and I said, "Look, I can play a tune on your back."

The chaplain called and told me she was on her way, so we convinced my dad to return upstairs, and he ate some yogurt and drank some Ensure for lunch.

I'm not just fascinated by what's happening though. Oh no. I am also horrified, grief-stricken, and in shock. They weren't kidding when they said things can happen very quickly. I am also WILDLY angry. I am angry that my husband is having the trip of his life in the Middle East while I am wiping up my dad's vomit. I am furious that my brother isn't here because of his personal issues. Granted, it's also his health, but he's not here for ME, and I am absolutely fucking livid. I am livid that my 17 year old son is a greater support to me than every single adult relative I have. I have never felt more alone, more abandoned, or angrier in my life. And I am not going to fucking ask them to come. Because goddamnit, why don't they fucking know that?

Very nice people ask me what they need, tell me that if I need anything I should call them. I can't do that. I don't know what I need. I just need you to show up. And the angrier I get, the more withdrawn I feel. It's a vicious cycle, but I feel completely justified in my anger, and it's bigger than I am right now, and I. Do. Not. Give. A. Shit.


Thursday, May 12, 2011

Walking on his own grave

Things have been very stressful and intense. I am deliberately not writing about it, because I need time and space from it. As I have said earlier about blogging: It happens in real time, so sometimes you have to take a breath and process and think and rest before you write about things. And sometimes you have to not write about them at all.

But the movers are gone, Dereck is here in Utah, my brother is in Colorado, and Dereck and I are flying with my parents back to Missouri on Tuesday.

This is a thing that is happening. We'll take our time, stay in a hotel that Tuesday night and pray the movers make it there before we do.

Yesterday we bought their cemetery plots, and here are some pictures.

Pretend they're worth thousands of words.








Saturday, May 7, 2011

Caregiver Fatigue

Caregiver burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude -- from positive and caring to negative and unconcerned. Burnout can occur when caregivers don't get the help they need, or if they try to do more than they are able -- either physically or financially. Caregivers who are "burned out" may experience fatigue, stress, anxiety, and depression. Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones.




What Are the Symptoms of Caregiver Burnout?

The symptoms of caregiver burnout are similar to the symptoms of stress and depression. They include:



Withdrawal from friends, family, and other loved ones.

Loss of interest in activities previously enjoyed.

Feeling blue, irritable, hopeless, and helpless.

Changes in appetite, weight, or both.

Changes in sleep patterns.

Getting sick more often.

Feelings of wanting to hurt yourself or the person for whom you are caring.

Emotional and physical exhaustion.

Irritability.


Friday, April 29, 2011

Very short update

Things started to fall apart during my last week in Utah. By things, I mean me. We had some very very good news: My father continues to do amazingly well. It became clear during my last week in Utah that my father will continue to thrive, but that also meant that things had to change. So, we set in motion the grinding work of moving both of my parents to Missouri.

That work begins with convincing the parents that they need to do this. That was long, that was ugly, and after I got home from Utah, I slept for the first week. This has been my second week home, and I still feel tender, like someone has been holding me by the hair on my head, and my roots are aching. I don't feel like I can really put myself back into this ponytail.

And yet. I also found my parents a place to live, and so tonight, I board the train once more for Utah. My mother is moving out of the nursing home tomorrow. Matt is in Utah now. I am going there to help him navigate both parents as well as to haul ass, pack, and get this move on the road.
A few things make this harder and easier:

  1. One of my best friends, John, is moving to Minnesota on Monday. We have said our last goodbyes. I get to spend the next two hours before the train leaves trying not to fall apart again.
  2. I have to miss Dereck's birth, which sucks.
  3. I don't feel like I've had enough recovery time to already be heading back.
  4. This is the last push. The sooner I do this, the sooner I get to come back and stay.
  5. Since my last writing, you would NOT believe how lucid Pat has become. And pleasant. And we can actually talk on the phone for long periods, and we do not talk about her pain. She mentions it in passing some, but I've actually talked to her a couple of times without her mentioning it all. Yes, Virginia, there is a Santa Claus.
I have booked three plane tickets back to Missouri for Wednesday, May 11.

Wish us luck.


Friday, April 8, 2011

Longing

Before my dad was pronounced terminally ill, I saw him a few times a year for short trips. We spoke on the phone every week. He would call me on Friday mornings while my mother was at her hair appointment. So, I knew that I would miss him, miss those interactions.

Now, I live with him, and he's my constant companion.

So, before, when he died, I was going to miss an hour-long phone conversation, being able to pick up the phone and call him freely, and short visits. Now what the hell am I going to do when he dies?
_____________________________________________________________________________________

Last night, Matt and I talked on the phone for awhile about our options. Basically, we are trying to figure out the most ethical way to opt out of this. I am wondering who exactly we are worry about yelling at us for leaving, besides our parents and ourselves. I could put my mother into a nursing home, but I could not walk away, and now for a variety of reasons, she is coming back home.

If I can't even keep a pain in the ass like her in the nursing home, how am I supposed to put my cognizant father into one? And how do I spend, yes, 3 1/2 months now, taking care of things and then pull out before we're done?

I told Dereck today, "I would tell anyone else in my position that they should put their parents into a home and leave. And yet, oddly enough, I am actually in this position, and I can't walk away."

I struggle a lot with whether taking care of my dad is worth the separation from my family, whether it's worth the time I'm missing with my kids. But how many months did he change my diapers, get up with me in the morning, preparing my bottle while listening to the Beatles singing, "Here Comes The Sun"?

I'm pretty sure it was more than 3 1/2 months.

Sometimes I think the only way to do this is just to embrace it full charge, consequences be damned. I cannot anticipate all of the consequences or ways this could change my life. The world changes if a damn butterfly lands on a tulip, so how can I know what is going to happen?

This morning, my dad told me he was bored. I tried to rally and suggested that we could get out, go to a movie perhaps. It was a fitful day with me constantly wondering when or if he'd want to leave, so I wasn't as productive as I was yesterday. We finally got out of here after the Oxygen Guy came and brought a new thingy to put on his tanks. It makes it so that there isn't a continuous flow of oxygen. Instead, there is only oxygen when you breathe in through your nose. It makes a tank that would ordinarily last about 2 hours last more like ten.

Our nurse, Christian, had told us about a restaurant near Orem, in Lindon, UT, called The Smoked Apple BBQ. It reminded me of Tudor's Deli, for any Kirkatoids reading. We ordered our barbecue-- dad got the chicken, I got the brisket and the seasoned sweet potato fries. Frankly, when I got our food on paper plates with plastic silverware, I was a little disappointed that we hadn't gotten a little more, considering the cost.

That was before I had put any food into my mouth.

Yum. I snagged a menu and I'm going to scan it sometime and torture people with it. On the way to dinner, we stopped at the State Liquor Store. This time, my dad actually came in with me, though he didn't pick anything out. I was supposed to go to the grocery store and get more creamer for my coffee, but I solved that little problem by getting some knock-off Irish cream liqueur. Dynamite.

Now we are back, and it's not dark yet because it's April. But it snowed off and on all day, so it feels and looks like February.

I'm trying not to succomb to the Last Week Blues, the rampant self-pity and self-righteousness that governs my last week here before I go home.

Matt doesn't want to come back. I don't want to come back.

After my last post yesterday, Christian the nurse called back to reassure my dad that they would keep him on Hospice, just based on his weight loss alone, let alone the diagnosis. Christian is hard to get a read on-- he never really changes his tone of voice or inflection whether he's talking about The Smoked Apple, the NCAA, or my dad's cancer. So, he always sounds like this upbeat, friendly, Mormon, Utah boy. He still looks like a missionary. A missionary in scrubs. But mostly, he is trying to remind us that my dad still has cancer, no matter what.

I got on the phone with Christian and said, "He wasn't worry that you were going to kick him out of hospice. He thought that meant he was possibly getting better." 

Christian told me on the phone, in his characteristic Christian way, "It would take a MIRACLE for his prognosis to change at this point."

He did not say it with the tone of someone who believes that miracles like this happen very often.

He went on to tell me that often hospice patients feel better than they are actually doing. Their sense of buoyancy and morale masks symptoms... like sleeping all day. I went into a different room and told Christian that for the past two weeks, I've been charting my dad's sleeping. He sleeps during the day more than he has regular meals: Once in the morning after he gets up, once in the afternoon, then in the evening. And this does nothing to affect his sleep at night, when he has had insomnia up to now, pretty regularly.

Christian said, "The cancer is still there, and eventually it will win. There could be a small number of subtle changes that suddenly just... take over."

When?

I read about melanoma online for awhile this afternoon, and it really seems that the one-year assessment we first got in January was wildly optimistic. Six months was more like it, especially after his scans revealed in January that the cancer had spread much farther and much faster than we had anticipated. But my dad is receiving more than (>) one-on-one care. Instead of eating out with my mom every day, he is getting home-cooked meals. He has the stress of his prognosis and the stress of boredom looming, but on the whole, things are pretty stress free right now. We will see what happens when Pat returns. Honestly, I don't want either of them to go down hill on this move home. But it is not lost on either Matt or I that we are longing to stop doing what we are doing, and yet the fact that we are doing it seems to be the reason why we are STILL doing it.

It's horrible. I want to go home. Apparently, that means that my father will be deceased, though. So, I can't want to go home, because I don't want to accelerate his death. But I also don't want to go to jail for leaving my parents alone here together. What is going to happen when one of them thinks they can drive?

Before Christian called, my father donned his coat and hat and went out to pick up the recycling bin. I watched him leave and said to the empty room, "Okay, I guess we're not dying now."

I went to the window to watch him in case he fell, muttering things under my breath like, "If you fall, I'm going to put you INTO the recycling bin and wheel you back to the house."

He ran into Norton and his wife in the road, so they stood and talked as the evening closed in around them. Something they have done before a million times and never thought about or appreciated.

I am sure for my dad, it felt great. It looked like the most normal thing in the world.


Thursday, April 7, 2011

Hold the phone

My dad just told me that his 90-day hospice evaluation is coming up. They will evaluate whether or not he still needs to be on hospice. The nurse thinks they will keep him on.

"But if they don't, then it will just be your mother and I here."

"WUT."

"Well, I'm not on hospice, you and Matt don't need to be here."

"Why would they take you off hospice?"

"Because I'm doing so well."

"Well, I don't think that means you can take care of Mom by yourself."

"Why not? She doesn't bother me the way she bothers you and Matt."

"Oh, I don't think that's a good idea."

My heart is pounding hard. What? What? They could take him off hospice? Which means, what, what have we been doing all this time? Why did we put our mother in a home?

You mean after all this, we might be all the way back at square one?

Which means that not only will this all have been for nothing (well, arguably, it has probably contributed to my father's thriving, according to the nurse today), but WE MIGHT HAVE TO START ALL OVER WITH THIS AGAIN?

Oh HELL no.

If they kick my dad off hospice, the parental units are moving to Missouri. I am so not making THAT mistake again.

SOMEBODY JUST KILL ME.

Trust me, you should think about your answer.

It's always a little harder for me after I've been here for two weeks already. That seems to be when the homesickness starts to kick in.

I had a bad night Monday night, and then Tuesday morning, I was a mess. I realized that the housekeepers (yes, we have housekeepers. I know it's ridiculous, but would you want to put two people out of a job just because you can clean the house yourself, when you don't even want to?) had put one of my vibrams into a box of stuff that is still in the bedroom waiting to be sorted. I keep saying to it, "You've got to get yourself sorted," but it doesn't comply.

One of my vibrams was in the box. I pawed through some kind of slippery drape-like fabric, pairs of socks, plastic sock clips to keep them from getting separated in the wash, address books, pens, and soon I was dumping it all over the floor. No vibram. So, I put everything back, piece by piece. No shoe.

I dumped it out again. By this time, I was sitting on the bedroom floor in my T-shirt and black leggings and crying as I sorted through all this crap a second time. Where could they be? I looked into the box next to it. Office supplies and old calendars. So, I went downstairs, came back up, looked in the bathroom, tore apart the bed, looked in every bag in the room. No shoe.

By this time, the Certified Nurse's Aide (CNA) was here to help my dad with his shower. I didn't want  him to see me crying, so while he was in the bathroom shaving my dad's face and chatting about the most horrible final game in NCAA history (also, sadly, probably the last basketball game he'll ever watch. I can't grasp that), I slipped out through the laundry room, into the garage, grabbed my smokes and a lighter and went to the front porch to smoke and cry for awhile more.

Eventually I went inside, made coffee, and found the vibram in one of the white garbage bags standing in the bedroom, ready to go to Deseret Industries. Why on earth wouldn't they put them in the same place? Of course, they don't look like shoes, so I can see why maybe they might have thought I wanted to get rid of them. The ladies are upstairs cleaning right now. Before they came, I hid my Vibrams in my laptop bag.

Part of my grumpiness on Tuesday was due to the fact that my dad and I were sort of bickering all day Monday about my mom. He spoke to a friend of his on Tuesday morning after the CNA left. He got off the phone and said, "Ken's worried about how you guys will manage your mom."

"Great. Thanks, Dad. I appreciate all of the votes of confidence we're getting on this. I'm worried about it too, but do you have any better suggestions?"

There are things about this experience that I am not blogging about. I don't write about my brother's experience with all of this, his complicated family dynamics, his persistent exhaustion after the stroke, his medical bills, how much his six-year-old has been missing him. My brother is also a writer, and he is working on his own story, albeit more privately. He is not, as he called me once jokingly, "a walking, talking blog."

Heather is writing a bit of her version of all of this here. And that post I linked to made me cry when I read it because I miss my children so much, and I am giving up, so far, a quarter of a year that I was supposed to have with them. And when I start to think of a) how much I've given up in order to be able to have that time with them and b) how I cannot get it back, I get very, very, very, righteously angry.

This is one of the main reasons I haven't yet returned Ryan's calls at Sunrise. I passed the buck to Matt.

I am also not blogging about some family dynamics and relationships because they are too private. This blog is published in real time. It's not like a book that can point to something in the past, when there has been time for resolution and healing. Or when you know the repurcussions and conclusions and how this all plays out so you know what would be important to include and what would be unnecessarily meddlesome and melodramatic.

I am also not blogging in great detail about money. But it's something I must address at least a little. One way of looking at my brother's and my ability to come out here and spend months caring for our father is that we are both fuckups without real lives, so it was easy for us to drift out here to do this. Well, we are not fuckups and we do have real lives and jobs.

I took off time from work until March. Then I started to realize that not only would it be a welcome distraction and make me feel less like I was in limbo. Also? We all like eating, shoes, and real beds. So, I had to start bringing in some income. My brother works when he goes home, on top of doctor's appointments and trying to help out with the kids, who are Heather's sole responsibility when Matt is here, and keeping up with everything going on out here. But we have also been letting our father support us when we are out here. While I am here, I buy groceries with my dad's Visa, and I pay the bills with his checkbook. If I need cash, I get it from his account. Same with Matt. In fact, my card started getting refused (well, okay, Pat's card) because Visa was baffled about why there were charges in so many different places. I had to call Visa and put my dad on the phone to authorize our using it.

So, my dad is supporting himself and whomever is living with him at the time, providing some financial assistance when we go home (and paying for our transportation to and from), paying medical bills, buying groceries, continuing insurance and housing memberships he probably won't get to use, as well as paying for my mother's nursing home. Which is exponentially expensive, and does not include: Her beauty salon visits (including manis and pedis), her new glasses, her medications, her bank account, or all of the supplies she needs constantly. So, that brings our monthly bill for my mother to about $5K a month. It's gauche to talk about money, but useless not to in this circumstance.

So, for the nursing home to want to move her yet again and increase that bill by $300 a month-- we are already pouring out more than my poor dad is bringing in. So far, even though I've been working, I haven't sent a single invoice for 2011. And I still have bills I'm paying at home with savings.

So, what would you do? Would you keep your mother in the crappy, expensive nursing home and know that you will run out of money before your father dies and be living only on credit (which will kill him)? Or would you find another nursing home that could save you $1000 a month. That still will not solve your financial woes. You will not be able to afford a nursing home for your mother while your father is still alive. In-home nursing care? Too much. Putting them both in a nursing home and closing up the house? Well, you would have to get your cognizant father to agree to that one. Would you put her in the really shitty, bare-bones assisted living place right up the road? Or would you bring her home and enroll her in the daycare that is even closer. And make as many trips to the liquor and tobacco store as it takes to get you all through this.

Dereck tells me he has never heard of anybody doing what we are doing, both siblings taking turns for this length of time to care for their parents. I don't know that I've heard of it either, but honestly, I am just doing what it seems to me are our best options. However, sometimes if I find a solution that appears to be working, I stop searching for better ones. I nursed my kids and co-slept because I couldn't bring myself to let them cry. I regret that, but honestly, at the time, maybe it was because of all the hippy books I was reading, I didn't realize that I had other options that might have made my life a little easier and have made me a little less nuts. Is that what is going on now?

What on earth do other people do?

What are YOU going to do?

Monday, April 4, 2011

Heisenberg, go skip a rock

He doesn't like how much time i spend on the computer, though if I don't have that stimulation, I get depressed. And it doesn't really seem to make much difference whether I'm on the computer or not as far as how much we talk.

My brother and I have been trying to decide what to do about our mother next, and decided today to bring her home and enroll her in daycare (I sound like I am adopting a baby).

So my dad and I bickered about that. He is worried that it will be the same as it was before she went in. My unce Burke is worried about that. But at that time, my father's death was imminent, it was all so new and the grief so fresh and the stress so great that we just had to get her out of our hair so we could breathe and think for awhile.

I am not looking forward to having her back. But short-term, it seems cruel and unnecessary to put her in just another home that she will feel lonely and abandoned in. I am having some major guilt lately about having done this to her at all. Burke thinks that both of my parents have thrived away from each other and he is worried about her drug use increasing, etc. He is worried that they will both decline, that this will accelerate my father's death.

I won't keep her at home if that is the case.

My father asked what would happen next if we couldn't handle her at home.
"Well, I'll tell you what'll happen next. You and Mom and I will move to Missouri and Matt will go home and get a full-time job."

"I'm not moving to Missouri," he said.

"You will if that's the best option!" I snapped.

"You seem to think I'm going to live a long time, and I don't think that's the case. It only takes one system to fail. One system out of three. And after that, it will go very fast."

I don't know what to say. No, I don't think his death is imminent. I sort of want him to get scanned again so we can see if he's in remission-- that is how good he looks. We thought that he had been sleeping more because we learned on Sunday that one of his oxygen tubes had pulled away from its machine, so he wasn't getting his full dose of oxygen for at least a day or two, I'd guess. I saw the tube on the floor, but I didn't know it wasn't supposed to be on the floor.

It has been almost 36 hours since we fixed it, though, and he still falls asleep on the couch in front of the television. And it doesn't seem to be hindering his sleep at night.

I suppose this is a metaphor for life, full of uncertainty, because none of us can really be sure of anything. But right now, rather than a microcosm, it feels infinite and heavy.

It's so hard to know what the right thing to do is. I hate to make so many mistakes, but I'd rather make mistakes and get to the right thing than be complacent and culpable.


Chopped Liver

My dad on the phone to his friend Bob:

"She's not happy there. Yeah, well, they think they can take care of her here. We'll see. I'll love having her here-- it'll at least be someone to talk to."

Sunday, April 3, 2011

About Face

It's not like she didn't warn me. She told me she couldn't bear to move again. Yet, every single day she would say, "I hate this place. I see so many injustices here all the time," and then so would begin the litany of complaints.

I didn't imagine that, right?

Today, Burke brought her down to The Charleston. She wrinkled her nose the second she walked in. "I don't like this place," she told me.

"Well," I said cheerily, "let's just look around!"

"It's not as nice as the place I'm in now."

"Well, when we are done here, I will show you your other option, and then maybe you'll appreciate how nice this place is."

The cute girl, Michelle, who showed us around yesterday came from home (she still lives with her parents) to give us a tour. I introduced my mother. "Michelle, this is my mother, Pat."

My mother said, "I don't like this place very much."

We started on the tour to see an empty studio apartment so she could see how big they were. "This room is cold."

"Well, Mom, that's just because it's unoccupied right now."

"I'll need it warmer."

Michelle showed her the adjustable thermostat on the wall. My mother squinted at it for a moment and said, "I often have trouble with those. Those are tricky."

Michelle said, "All of our CNAs can help you with that."

We went back into the hall. "There aren't any chairs or sofas to sit on."

"Well, let's go up to the library," Michelle said. We got into the elevator to the second floor and there were two inviting, green sofas near a railing that peered down onto the lobby, where there were clearly four easy chairs before the fake fire place, as well as two ladies sitting in them. We went into the library, and my mother kept muttering, "It's cold here. There's just a cold feeling here." She'd look up and say to Michelle,

"Where I am now, it's just got a homey feeling. There is no homey feeling here."

"Well, a lot of the residents are watching Conference right now."

"The place where I am is homey and has a family feeling. Everybody is like a family. And we all sit in a circle on comfortable chairs and watch movies."

"I can take you to our activities room," Michelle smiled nervously. She is too innocent to be smooth and is a little hurt by my mother's barbs, but trying gamely to be soothing anyway.

On the way, we passed by the room where a lot of the residents were watching Conference. It was a room they use for church, and everyone was dressed up. This man in the back wearing a suit kept standing up and waving us over to chairs near him. He was too young to be a resident, so probably part of the Branch Presidency (ministry). I shook my head and mouthed that we were just looking. He kept waving his arms commandingly like someone who expected to have his orders followed, so I took particular delight in coolly looking away from him and ignoring him.

But surely we would have benefited from hearing church leaders admonish all the young men of the church to marry.

My mother's mantra became, "This place doesn't have a family feel to it," and she would take the middle and ring finger of her right hand and draw a circle in the air with it, presumably indicating family. That would make sense-- Families are Forever, the circle represents eternity. Kidding.

I told Michelle, "I think she has had a hard week. She is a little nervous."

My mother and Burke walked behind us, my mother calling, "Jennifer, I've made up my mind."

We were sitting in the lobby when a resident asked for Michelle's help finding something. She took his hand and looked at him and said, "Yes, absolutely." She turned to me and said, "Would you excuse me for just a minute?" And took the resident to help him. We decided to get my mother out of there, so when Michelle came back into the lobby, we were on our way out, and I stopped and shook her hand. "Thank you so much for coming in today, Michelle. We'll be in touch."

True to my word, our next stop was the Canyon View Assisted Living place, which my mother completely dismissed as a possibility. She didn't take it seriously one bit, and maybe my body language was just screaming that I wouldn't really move her there. I liked it better today. We walked in and a group of residents were sitting in a circle watching Conference. They beamed as we came in. New faces! We asked if we could look around, and the young girl on staff showed us the available rooms. My mother walked in and out again, continuing to talk about why Sunrise is so much better than The Charleston.

To my credit, I was patient with her all day. Even when she started saying that she was just an object with no say, that I had obviously already made up my mind (on The Charleston, because she dismissed Canyon View, which makes me like it more every second), that she only wanted to stay at Sunrise.

"But Mom, you have been asking me every single day to get you out of there. You tell me how much you have deteriorated. And none of the things that I don't like about that place are solved just because you now love it."

She pouted in the passenger seat of Burke's car and I kicked some slushy snow and wished I could smoke a cigarette.

"I'm sorry, Jennifer, I'm so sorry, I'll never go it again. Will you forgive me?"

"Well, Mom, when you tell me for two months that all you want is out of that place so then I take steps to make that happen, you can't suddenly tell me that you're happy there."

"So, you've already made up your mind."

"No, we are not making any decisions today."

"Then can I stay where I am?"

"I am not making any decisions today."

"I get no say in this, then, right? You just get to decide what to do with me and I'm like a ball. Being bounced around."

*Sigh*

After we got back to my dad's, I did sneak off to smoke. She had been there less than an hour before she and my dad began bickering. My dad told her everything I had about how much she hated Sunrise, about her falling, about the fact that once she was moved to the Alzheimers and Dementia ward, she no longer had a necklace or bracelet she could use to call attendants. She has only a pull cord by her bed. So, when she fell out in the hallway, she had no way to call anyone except her voice.

He talked about her roommate, "I'm attached to her now,"  how small her room is, "I'm used to it. In that other place, I'll just be alone and lonely in a big cold room."

SERIOUSLY?

It comes down to control: She wants to make the decisions. When she had to stay there, she chose to leave. When I finally saw the light and took steps, her way of seizing back control was to turn every negative thing she had every said about Sunrise into a positive.

Fortunately, I knew that arguing with her was pointless-- technially, Canyon View meets all of her requirements for warmth, coziness, small, and family-like. She will change her criteria the second I meet it. Because I forgot that the number one thing you have to remember about Pat is that she doesn't like anything (unless you are going to take it away from her, apparently).

Then, my dad finally got her to change the subject.

Be careful what you wish for.

"So, you're working on your memoirs?"

"Yes."

"Do you have a lot of funny stories in there?"

"Yeah, and I had a funny one about you in there." And he went on to tell Burke, in front of my mother, the story he had sworn never to tell! But she was mad.

"So,your funny stories are all at my expense."

No! Pat, it was a funny story. You know, Burke, I saw this doctor in the parking lot lighting a cigarette with a trembling hand, and I think that was him," and he laughed. Sometimes my dad laughs so hard that he leans forward and almost falls out of his chair. Then he slaps the floor, laughing.

"I bet there are a lot of funny stories about me in that book," She said primly, pursing her lips.

"And Pat, there are a lot of funny stories about me too. Like the time we borrowed the mimeograph machine to run off my dissertation. And you said you knew how to use it."

"I knew how to use a lot of equipment back then!"

"And you pulled the lever back and the whole thing got jammed. And then I dumped that stuff on the floor and tried to clean it with acetone. And it burned a hole in the floor. The next day, I got to work and they told me, 'Boy, the director wants to talk to YOU.' So I went down there and they never let me touch any of the equipment at the VA hospital again."

Then my dad went on to tell the Mr. Joseph story for Burke. I wondered how many times Burke has heard that story over the years. He has known my dad since birth.

So, my mom then kept saying she wanted to read the autobiography.

"Well, it's not finished yet. And you've never read anything else I've ever written."

"Well, I want a copy of every book. And I know that if you wrote it, it's excellent."

"How would you know that? You never read it."

"But I want to read your autobiography..."

I started to wander in and out at this point, sneaking out for a smoke, then coming in and pretending to work on a grant on my computer in the corner recliner, while actually talking to my friend Chris via instand message.

My dad's position on the whole nursing home situation is that he'd LOVE to have my mother back home BUT... And that I need to call the social worker and then go look at every nursing home in Provo.

Matt and I agreed that we would both crunch some numbers this weekend. Even with my mother in The Charleston, even with the money we would save from Sunrise, it's untenable.

I sent out a text: "After having crunched the numbers, have determined PC to be redundant. Recommend downsizing."

I got the following responses:

"Have you read Lovecraft? You can alwaze chain her tp in the attic."

"So... Alaska?" (That was from Sam who volunteered to research roundtrip plane tickets to Alaska to find an ice floe: $1500 each)

"Is this a Logan's Run kind of thing?"

"Can you outsource her job to India? or replace her w an undocumented laborer?"
I'm sure my headache is only from the four inches of show we woke to today after I wore a sleeveless dress and flipflops all day yesterday.


Saturday, April 2, 2011

I'd like to thank...

... my mother's nursing home for continuing to provide me with such good material.

Yesterday morning, Matt and I talked again. We decided not to decide anything until Monday, because we need time to think. I made a list of the pros and cons of bringing Mom home versus finding another nursing home. Then, when I was just sick to death of worrying about it, my dad said, "How'd you like to go get a buffalo sandwich?"

"I'd love to. Let me take a quick shower."

At first, I thought he meant buffalo as in buffalo wings. No, he meant buffalo as in herd, not New York. With him directing me, I drove up Provo Canyon to Heber City, Utah, where my maternal grandparents are buried. There is a really, really, really great place to eat there called Spin Cafe. (Private to Grand Marais people: Think The Wild Onion).

My dad got a buffalo burger, but I got a grilled cheese sandwich with pulled pork, tomato, and avacado. It was fantastic. Then, we both got a small serving of gelato and sat and ate it with tiny spoons. It was such a beautiful, balmy day and the cafe was really nice. I will remember that day. My dad was in a good mood, and I caught him on film [Fine, I caught him on whatever you catch people on now with digital photography], goofing around with his new sunglass-clip attachments.

Next, he had a couple of checks to deposit, so we went to the bank. The ladies who work at the bank adore my father. He is always gracious and friendly and they came around and asked him for hugs. The one I know the best told me he looked better than he has in months. This is true.

Then, we went to CostCo, but by that point, we had probably stretched him to his limit. We walked to the back to get gatorade and then he had to go sit down and wait while I zipped around.

So, I'm in CostCo, a Friday afternoon, and it's jam-packed. But I know my way around now, and I know what I want: stuffed salmon; beef tips I can marinate in wine to tenderize, huge bowl of fruit with mango, grapes, strawberries, cantaloupe, and pineapple. Tomato-Basil and Chicken Tortilla soups.

While I'm cruising around grabbing things, I call my mom. I've tried her before during the day, but she has not been in her room. I was curious to know how they are treating her after Thursday. She told me she had not received her pain pill the previous evening. Get this: Because her doctor has ordered them to be given "as needed," my mother has to remember to wake up and ask for a pain pill in the middle of the night. And if she doesn't do it at the right time, they won't give it to her.

In the past, I haven't thought I could really do much about things like this. But after Thursday, I decided to take my Bitch out for a test drive.

So, next, I called the nurse's office at Sunrise. I didn't know whether or not my name was mud yet, so I lied and said I was the nurse from her doctor's office. But when I got through to the nurse, this thin, fish-faced woman who always pulls her brown hair back into such a tight bun that I think she is doing it as wrinkle prevention, I identified myself. I said, "My mother just told me that last night she did not receive her pain medication."

"That's right. They are given as needed and she did not request it."

"The woman complains about pain all the time. What makes you think it was not needed? Are you serious that you are going to make an elderly dementia patient REMEMBER to wake up and ask for her pill? If she doesn't get it, then it sets her back the entire next day with regard to her pain. I DON'T EVER EVER EVER WANT TO HEAR THAT SHE DID NOT GET A PAIN KILLER AT NIGHT AGAIN, ESPECIALLY WHEN SHE DOES REQUEST IT. Do you understand me? Because if I do, I am going to come in there and YOU ARE NOT GOING TO BE HAPPY TO SEE ME. WHAT THE HELL IS WRONG WITH YOU PEOPLE? WHAT IS GOING ON UP THERE?"

"Are you ready to speak civilly to me now?"

"Nope." And I hung up.

Next, I called the doctor's office and talked to a medical assistant several times. My mom's doctor won't order her to have a pill every eight hours because she doesn't want her to be over-medicated. Huh? I get that if my mother doesn't wake up that the doctor could argue that she didn't have need. Except when she did wake up and ask for it, they refused to give it to her. And again, if she doesn't have the pills every eight hours, then the pain gets ahead of her. Every eight hours. That is what I'm asking for.

I got the doctor to say that she had to have her last dose at bedtime. But my mother still has to ask for every pill she gets. Jesus Christ, no wonder all she talks about is her fucking pain meds. If she were to forget to ask for that, she knows what would happen.

The medical assistant told me that their entire office thinks Sunrise at Sandy is insane because when the doctor ordered an over-the-counter analgesic cream for my mom and said, "Use as directed," Sunrise told them they couldn't accept that general of a physician's order.

The whole time I'm navigating these phone calls, I'm also getting checked out at CostCo and getting my dad and our groceries into the car. We got into the car and my dad said, "I'm out of Oxygen." Fortunately, we were very close to home and we had another tank in the back seat. But I was still nervous. Then, when we got home, he slept in front of baseball for a long time. This morning he told me he thought maybe yesterday was his last trip to CostCo, but I pointed out that if that were our only outing, he could probably do it. He's concerned about his recent fatigue. Or, he was before I took a power nap that lasted three or four hours this afternoon.

This morning, I toured another nursing home that is about 20 minutes from their Provo house, with my uncle Burke. After I got hopelessly lost for about 45 minutes trying to find it, that is. But getting home was fast and easy.

I asked a lot of questions about how medications were dispensed, whether my mother could have her OTC eye drops (she can't at Sunrise, though Burke and I were laughing that we both spend $50/week on eye drops for her that keep getting confiscated). The girl who was giving us our tour this morning looked at me funny on a couple of the questions, which is the reaction I was looking for. More evidence that the way things are done in Sandy are insane. I told Burke this morning when we were standing by our cars after the tour, "It's like the people at Sunrise have never met an old elderly person before.

Also, the fee schedule is different at The Charleston: They don't base your medication fee on how many medications. They have other patients with sleep apnea machines. Their studio apartments are bigger than Sunrise and the pricing is better. They have a fully-stocked library and two floors, no lock-down unit, and refrigerators, microwaves, and small kitchen areas in every apartment. Nobody has to share a room.

It's still expensive, but we would save money there, and possibly be able to stretch things farther. But we are all getting nervous about how long we can support two households. IF they are good and decent and don't pull the crap that Sunrise has pulled, then I think they would probably be great. But Matt and I are both as gun-shy about the whole situation as a divorcee in Vegas. I really liked Sunrise. I should have known something was hinky when they refused to put her pain patches on her at first and we were running up there all the time.

I asked what would happen if my mother fell, if she had a cold and needed a doctor, if she had a cold and needed cold medicine, ran out of toothpaste, etc. The answers were all how the nursing home would take care of her-- the girl who was giving us the tour has only been in marketing about a week. She started working there in the kitchen. She has been there for four years, and she seemed pretty happy. She said she lives a minute away, so she could come and make a dr appointment and take my mom if she needed it. She wasn't a smooth salescheck like Becky at Sunrise. She didn't do a hard sell at all. She just showed us around and gave us information about activities and events and asked if we had questions. We looked at their one-and-two bedroom apartments as well. We talked also (shhh) about whether my dad could live there also... right now, they don't have availability, but...

Burke is concerned about how long I can do this without cracking up. He put his arm around me and said, "I know you think you can do it, but I worry about you."

I wonder if he is also worried about how well my mom and I would get along if we brought her home. He said, "Do you remember what you were like when we were moving her into Sunrise?"

Yep. Yep, I do. And if I didn't, I could read all about it to remind myself.

I stopped and looked at another Assisted Living place on the way home. I pass by it all the time. It's maybe 5 minutes away. I mean, I could jog there (it would be a pretty good run though). I'm not going to lie: The word "dump" crossed my mind. There were two "houses" that looked pretty residential. They were clean and orderly, and the people seemed only to be watching television intently-- they didn't look any worse or better than any of the other people I've seen in facilities lately. There were two women on staff, one in each building, and I saw a few women in a back room who were wearing scrubs and looked to be having a meeting. I asked a few questions. The bedrooms are small, and there are communal showers in the center of the buildings. That may not go over so well. The rates were great, but well... I didn't see any cockroaches, which was Matt's minimum criteria (I jest). The best thing would be that I could go over there and get her a lot, and take her to the daycare down the road here sometimes (the price is that good).

But all day, I've been thinking about both places, and I keep leaning toward The Charleston. Okay, I'm a sucker for elegant surroundings. But I didn't even realize how much guilt I've been harboring for putting my mother in a facility to begin with. I feel badly for her every minute she is at Sunrise.

This evening, she called and I spoke with her. She keeps telling me that she just wants to come home and lie on the couch and be here, and usually I just let it go by without comment. This time I said, "If I were even to consider entertaining that idea, then would you be opposed to sleeping in the basement so Matt and I can attend to Dad?"

"No, I like the bed down there."

"Also, I would want you to go to daily activities down the street so you can have social contact."

"Well, it would depend on how much pain I was in."

Oh, no, actually, it wouldn't. If we were to move her back in here, there would be some pretty inflexible rules, particularly governing how often she can see a doctor. Does it seem cruel to tell her she can't go to the dentist every single month? I don't think so. She says now she has a toothache. Well, she *just* saw a dentist. She wants to go back to her dentist. And this is how she starts winding me up. So, that puts me in the position of tending to ignore all of her health complaints because in addition to everything else, she is a staggering hypochondriac.

The Charleston has a physical therapist on site. They have an exercise room, go to Walmart on Mondays, but they can pick things up for her and add them to her tab (they refused to do this at Sunrise and looked confused when I requested it; additonally, my mother's excursions have abruptly ended with her transition to the bottom floor of Sunrise), and a podiatrist comes monthly to cut toenails. I asked how much extra it would cost to help her trim her fingernails, and that was another question I got a weird look about (yes, it costs extra at Sunrise).

I got home around noon and told my dad about both places I had looked at. Then, I am not sure what I did-- probably checked email and Facebook. I was so exhausted that that's when I went and took my power nap. I woke up thinking that I'd been asleep all night. It was 4:50, so I told my dad I had to run to the grocery store for a few things-- we don't need things like milk, butter, eggs in CostCo bulk. When I got back, he asked me if I had also gone to the liquor store because I'd been gone so long (I was gone for 25 minutes). I said no, and I hadn't. My dad's teasing about my alcohol consumption grates on me. I don't like to give him ammunition. I said, "Should I have?"

This is the General Conference weekend for the LDS Church, a world-wide conference broadcast from Temple Square in Utah. My friend Barbara works doing survey calls for Nationwide, and she texted me that she had just called a lady in Utah. "I heard organ music in the background. And lots of cats. Is that normal?"

I explained that the lady was probably just watching conference on her television. Yes. Everyone does that. Everywhere I went today, people were watching it, or cars were spilling out of church parking lots because you can also go sit on the pews at church and watch it on television. Less alcohol and popcorn there, though. Or you can try to cram into the Tabernacle or sit on the lawn outside it at Temple Square, as some college friends and I did some 24-odd years ago. In our Sunday best.

So, in order to celebrate General Conference, we went on a Daddy/Daughter date to the State Liquor Store, which closes at 7pm. On a Saturday night. We got there at 6:35pm. Phew!

Next, we came home and I had my dad call his Visa company because they started turning down my card on Wednesday, and I finally figured out that it's probably because the company probably thinks the cards are stolen. He told them to authorize Matt and I using the cards.

Now, we are watching the UConn/Kentucky game and I'm finishing this up. Then, all I want to do is watch television (watching the first season of Leverage these evenings) and try to shut off my brain.

Friday, April 1, 2011

Two-Faced

Last night I told my brother that we were bringing Mom home and we were going to take care of her here and enroll her in the day care down the road. There was a silence.

"Um, I think that is something that should have been discussed with me."

I went red in the face even though I was on the phone. I had already told Burke to bring her home today. I had told my dad we were doing this. But Matt was right: He needs to be an intricate part of the conversation.

He said, "What happened to putting her in a nursing home in Provo?"

I called Burke and told him to hold off. Burke, trooper that he is, immediately offered to help me find a place nearer to where I am for her. I am not sorry that I gave notice at Sunrise. I may have even mentioned something yesterday about making sure that everybody we know hears about how shoddy that place is. I may have mentioned reviewing them on the Internet, too. Apparently, word of mouth is important.

The next and trickiest challenge was going to be telling my dad that I had changed my mind AGAIN and we were NOT going to move her home.

I laid some groundwork when he went to bed last night. "You know, Dad, I think we need to think more about this situation with Mom. Lori said yesterday that she thinks one of the reasons you are doing so well is that Mom isn't here."

"That's not it," he told me.

I didn't say anything else. I'm not going to fight with a dying man before he tries to sleep, when sleep is often elusive for him. I had pushed enough. I did dread the conversation we would have today about it, though.

Fortunately, he introduced the conversation first:

"You know, Jen, I was thinking about what Lori said, and I think she has a point."

Then we went back and forth about how difficult she is and what it would *really* be like to have her back at home, so he agreed pretty readily to finding a place in Provo.

I feel like I dodged a bullet. So, now I have some time to find her a new place.
Dad pointed out that yes, it might be less expensive to have Mom at home, but not if we are all crazy. There are more expenses than just the ones with $ signs attached. He went on to talk about how she picks fights with me and Matt, that she always starts it, that it's particularly tough on Matt, and it all stressed my dad out. We have a pretty peaceful setting in the house right now, and upsetting the balance would not necessarily solve anything.
 
So, there's that. But before I can find my mother a new nursing home, I have to figure out what went wrong this time.
 
I am a nice person. To a fault. I like for everyone to get along. I like people to walk away from our interactions feeling good. About me. About themselves. About everything. But mostly about me.

This is partly innate and partly how I was raised. I was raised by people who don't like confrontation and don't like to make a fuss (which makes my mother's current personality particularly interesting. Who knew she could become such a fierce advocate for herself? Even with dementia?). I was raised by people who can be terminally polite. I grew up eating cold french fries because to send them back was too much fuss.

But this is also tatamount to being taught that we don't deserve hot fries. That it's more important for us to suck up shitty service than to inconvenience the teenager who has to make new fries, which cost the restaurant NOTHING.

My therapist used to ask me, "Why do you always think you have to be nice?"

She was serious, but I did not understand the question. Why on earth wouldn't I be nice? I think I always have to be nice because people should be nice!

The problem is that I have a temper. And I've done a pretty good job of mastering it in my adult life. Frankly, it scares even me a little, because I have gotten more control at NOT exhibiting it than in wielding it usefully. It's a tool I haven't developed because I fear getting burned. I think it's time to take it out for more rides and learn to channel it a bit.

I made a mistake when my children were growing up. Well, let me backtrack a little bit.

When Christian was very little, he was in speech therapy. Unfortunately, I lost my temper at the speech clinic with consequences that pursued me for years in one form or another, so again, I learned to fear it. My main problem is that I am nice, I am nice, I am nice, I am nice, and then I explode and worlds collide, the sun burns itself out, and the city is left in ruins. I have a slow burn, but then WOW. It's white hot.

I need to learn to just stop being so nice from the beginning. It will spare people exposure to that temper in the long run, so really, I'm just going to be doing people a favor by getting in touch with my inner bitch.

The mistake I made with my children was this: When Tommy, in particular, was very young, I tried to support his teachers. I knew that he was hard to manage in the classroom. His father and I staunchly refused to give in to teacher pressure and medicate him. Children are being vastly over-medicated in this country, and he was so little (kindergarten) the first time they tried to get us to medicate him. But I would try to work with the teachers on motivating him, I would discipline him at home for poor school behaviors. We tried a lot of sticks and carrots over the years.

But one of the things I learned (sadly) from trying to work cooperatively with the teachers is that I was, in essence, giving them license to treat my child poorly. Because that was the result. Over and over and over. So, eventually, I stopped sympathizing with the teacher about my willful child and started going in to meet teachers with more of a glint in my eye and more protective of my child, classroom order be damned.

That may not have been the best approach either-- we just started him, via mutual agreement, on ADD medication. We think it may be the only thing that can help his studies now. But he's 13 now, tall, and his body can take the meds better. Should we have done it when he was ten? Probably. But you do the best you can with the information you have. And Christian's diabetes distracted us for a good long time as well.

I made the same mistake at the nursing home. The staff at the nursing home, though, are not your friends. They are your service providers. And being nice to them only means that they are going to think they can treat your loved one like crap, ignore their needs, be completely dismissive of them. So, this next time, I am going to go in with a vastly different approach. We I were was too open about the fact that *we*  I think our mother is a huge pain in the ass and we were desperate to unload her. That was a huge mistake.

The next facility is going to understand that we expect excellence in every respect for our beloved matriarch who might be a pain to some, but not to us, that we only want the VERY BEST for her and that we won't hesitate to remove her if we don't get it.

Yesterday, my mother made one of her startlingly accurate observations: The other residents who have a strong family presence there get treated the best. Because we were not in their faces and not there enough, she was easy to shuffle to the bottom of their list of priorities. However, after I unleashed hell, she got an apology.

It greatly saddens me that this is the way the world works. That you have to be mean in order to be treatedly decently. But I have been trying the nice approach for almost 42 years, and I have not yet changed the world. So, I am going to change me. At some point, you have to do what works.

Thursday, March 31, 2011

One more thought

I just figured out one of the things that bothered me about today.

I've mentioned cleaning her sleep machine. I have mentioned helping her with rotating her mattress and asked about the whirlpool.

They were so shocked today when I was angry, and just jumping through hoops to accomodate me-- they went in and apologized to my mother and asked about helping her clean her apnea machine for the first time in a month.

You shouldn't have to get angry to get this kind of treatment. I don't think it's too much to ask for this to be expected and granted.

You shouldn't kick a dog just because he can't tell and his owner hasn't yelled at you yet.

Rash

So, how long did I go before I cracked up? It's been since before Christmas, so not too bad of a run, considering the strain.

Today, I gave notice at the nursing home. After yelling. A lot. Some of you have been privy to my temper, and for those of you who haven't, let me tell you: It's a real treat. The director was out of his office when I started raising hell to the woman I met with on Tuesday night and told her that I was fed up, that nobody helped my mother with things like cleaning her apnea machine, rotating her mattress, they won't fill up their little hot tub for her because it's "inconvenient" and she is repeatedly told, "Ask your family."

Well, if the family has to do everything for her, because they won't even provide TOILET PAPER, then I'd like to know what we are paying $4400 a month for. A space so small that a college student would rightfully object? So they can say no to her fifty times a day when she asks for meds? Thanks, I can do that at home for free. I told them that.

There was a young girl, in her twenties, who came in to talk to me when I was waiting in the director's office, and I said, "I don't really think I need to talk to him. I am giving you my thirty days' notice right now."

Then, I stalked out. And the girl, oh, you silly girl, said, "Um, the thing is? We are going to have to have that from you in writing." She was about two inches away from my face, so I leaned forward just a bit and gave her a look that I have been told is frightening to mere mortals, and hissed between my clenched teeth, "THEN. GO. GET. ME. THE PAPER."

She brought me a blank sheet of paper. I continued ranting while I filled it out. "When Becky first told us about this place, she told us that we could go out of the country for TWO MONTHS, and our mother would be taken care of. Well, I have been up here THREE DAYS this week, and when I'm not here, my aunt and uncle are here. Also, I have seen the way you talk to her-- you give her less consideration than a dog."

See, what they forgot is this little thing called family. My mother is a huge pain in the ass. Huge. But nobody else is allowed to treat her dismissively. She is MY pain in the ass, and I'm the only person who gets to display frustration to her. Well, and my dad and my brother. But some idiots I'm paying $4400 to? Nope.

I've been ignoring calls from the director. So far, somebody has left two messages on my cell. I called my aunt Lori in the car and told her. I told her that I'd rather move my mom back into my dad's house and take care of her than continue this.

"Oh, I don't know, Jen. I think you're taking on a lot."

Yes. I know. But it's got to beat having to drive 40 minutes one way all the time. There is a day care for the elderly down the road, so I am going to enroll her there. My dad even offered to help take care of her. He said, "Well, I didn't particularly want her to go in the first place, but I didn't know how you guys could manage everything."

Not to mention the fact that we are going to run out of money soon. This is untenable. No, we cannot afford $300 more a month. For another shared room. I also said, "We are paying more for that room than Alta is, so if Alta is having a problem sleeping because GOD FORBID, AN OLD LADY HAS TO GET UP TO USE THE BATHROOM DURING THE NIGHT then you can move HER."

Alta goes to bed at 7pm. My mother doesn't. They are the ones who wanted her to share a room. It's like they have never met an old person before. Or maybe they just push people til they break.

My mom called and said that Debbie (the one I met with Tuesday night) had come in and apologized and for the first time asked about cleaning her apnea machine. Aw, that's special. TOO LATE.

The young, silly girl who gave me a blank piece of paper said, "Well, I'm sorry we didn't meet your needs."

"Oh, save it, " I told her. "You don't care. You're just going to fill her room with another old person you can take advantage of. They aren't exactly in short supply."

I told my mother I had said that and she said, "Elderly. It's not nice to say old person."

Wednesday, March 30, 2011

Caught in the Rye

My mother is the Holden Caulfield of nursing homes. She seems almost determined to get kicked out. Last night's conversation omitted a little detail that was being considered for my mother: A room that had a door she could close, but which she would still be sharing with another resident. For the low, low price of $10 more per day. That is $240 more than we had to pay per month just to move her downstairs.

And how long has it been since they wanted to move her and increase her rates? Not long enough.

Today I told her, "You go ahead and get yourself kicked out of every nursing home we put you in, and I'll make sure that every subsequent one is cheaper and shittier."

So, I called Matt and we talked about it. I am calling tomorrow to tender our 30 days notice. I have already been looking for nursing homes in Provo or Orem. For one thing, even having her just 40 minutes away is a huge pain in the ass. today, I had to go and get her for an appointment with her pain doctor. Tomorrow, I have to go and get her for an eye doctor appointment.

Speaking of eye doctors, my dad and I both got our new eyeglasses today. I didn't even realize how much my eyes were straining and how much my left eye was throbbing until it wasn't anymore. I had gotten this plastic pair just for fun, to be a spare pair, because they were cheap. But after trying on glasses again today, thinking I'd get a "real" pair with clip-on sunglasses, I just ordered a pair of prescription sunglasses with the same frames as the glasses I picked up today and called it good.

Before I forget, I had been away for so long this afternoon by the time my mom's appointment was done and I had taken her over to have her "straightened" at her chiropractic place she used to go to all the time, that I called my dad. I offered to stop by so they could see each other, and invited him to go back up to the nursing home with us. To my surprise, he agreed. But considering that he said this morning, when we were returning home from the eye doctor, "Back to prison," I guess it shouldn't have. When we had dropped my mom off and we were returning to Provo, I said,

"Hey, can you see a lot better now with your new glasses?"

"I am wearing my old glasses. I didn't want your mother to know I got new glasses."

(I wore my new glasses. She did not notice).

Today was exhausting. In addition to getting to fire the physical therapist today (he made it easy for me by calling me first), I was overjoyed to find that I can retract everything I said about her being clearer and nicer with lower meds. She is exactly the same. She always works herself into a state before seeing a doctor (in hopes of getting more pain meds, thinking they will mistake crazy for 'in pain'), so she was in 100% attack mode. It was just as much fun as some of those early days out here before we moved her out.

I was so mad at her by the time we left the nursing home that I said, "You know, she keeps saying that she wishes she could trade places with you, and I just want to say, 'EVERYBODY DOES.'"

"Ohhhh, noooo," my dad said, drawing out the syllables in [vain] hopes of making me see reason.

"Oh, yes I do. I wish she was dying. When she had chest pains last week, I got so excited because I thought, 'Could we really get off so easily?'"

"Oh, Jennifer, no you don't. You just have to learn to ignore her."

"Well, we need to figure out our longterm plans for both you and Mom."

"We don't need to figure out anything for me-- my care is free."

"Dad, I'm talking about Matt and I coming out here to take care of you. You are doing really well right now. And I can have the kids out here with me this summer. But in August? I have to go home. So you and Mom are going to be moved either to Missouri or Carbondale."

"Well, it probably won't be Carbondale."

"I don't know. Maybe we should just move you both now while you are still doing so well."

"But we still have the house to worry about."

"Dad. It's paid off. We just shut off the power and leave it."

We traveled in silence until my dad told me I better change lanes so I could exit, 20 minutes later.

I remember having a conversation in Iowa, almost exactly a year ago, with my dear friend John's parents. I was talking about my parents' refusal to move to Missouri when we asked them to and wondering what to do about it. John's father looked at me and said, "Well. You are still asking."

I didn't know what he meant. What was I going to do? How could I tell my parents what to do?

I made scrambled eggs with milk and cheese and cranberry/orange muffins for dinner. I had suggested that I could make stir-fry or we could go out, in addition to breakfast for dinner, but he wanted the comfort food.

So did I.


Tuesday, March 29, 2011

Mistakes were made/ Riding the rails (Updated)

I have a headache, so this might be brief.

I think my dad and I were both a little down today. There was no specific cause for it. Just the particular dust particles in our air today or something. Speaking of which, my brother asked if maybe my father and I have both been extremely tired since Saturday because the air quality is bad here sometimes. I haven't seen anything on the news about it, but it's possible. I don't really think it's related to my father's cancer, though, because we have both been napping during the day AND going to bed earlier and sleeping later. So maybe he wasn't down today and I am just projecting.

Anyway.

I fell for it again. My mother called this morning and said that she is having so much pain that she can't do anything. She has no quality of life. She sounded genuinely distressed and near tears. So, I got her into her pain doctor tomorrow, a week ahead of schedule. Then I go up to the nursing home at 5pm for a meeting with the Reminiscence Coordinator.

Wow. Interesting. My mom's physical therapist? It's a home health scam company that preys on nursing home residents and their families. And that explains also how my mother ended up in an ambulance on the way to the hospital last week and why nobody as Sunrise seemed to know what was going on. I feel like an IDIOT.

Also? My mom participates in most of the activities. She is good at Pictionary. Unless these people are lying right to my face, she seems to be doing well. She enjoys people. They seem to like her. And given how often my dad and I call my mom's room and there is no answer, I'm inclined to believe them. I need a NannyCam. But this is why I feel duped-- I can't believe I bumped up her pain doctor appointment. She complains at the same level no matter how many meds she is getting.

We talked about the possibility of placebos. Doctors can't prescribe them, ethically. But nursing homes and daughters can. Ethically? Yeah, if it makes her feel better. I am pretty sure she wants to hoarde them anyway.

We were also talking about the one behavior that seems to be an actual problem: She gets up a lot at night. Also? Her roommate goes to bed much earlier than my mother. So, my mother goes in and out, and always turns on the light (and insists on sleeping in total darkness-- won't have a night light). Her roommate doesn't get very good sleep as a result. This usually leads to nasty exchanges between the two, even though lately when I show up, my mother and Alta are always sitting near each other.

The woman I met with hesitantly wondered about switching the women back-- moving my mother away from the window, so her comings and goings won't bother Alta. I practically bounced up and down in place on the couch. "Yes! That's a great idea!"

She looked startled. It turns out that she had thought that the family insisted on my mother being near the window. I told her, no, that my mother had wanted it, but that they then called us and told us that they had reserved it for my mother. And that my mother was paying more than her roommate, so she got to call dibs. That was very interesting. Communication isn't exactly a strong point; they actually share my frustration that there are too many cooks in the kitchen.
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This evening, my friend Heith asked me about my experiences taking the train. Thanks, for the rest of the post, Heith!

I always get the cheapest seats possible. And nowadays, all of the coach cars have electrical outlets. Some of them are older and only have one or two outlets, so you have to share. But there are also observation cars with huge windows, and tables for cards and games and snacks. There are outlets all over these cars. But the last two times I have ridden the train, I've been in the newer cars where there are two outlets or every two passengers. I've only had to share two seats with another person one time-- in the middle of the night, and it didn't last long.

The seats are big-- roomier than airline seats. They have a footrest and also they are a lot more like recliners than airline seats are. You will have leg room-- and most importantly, you can walk all over the train. As much as you want. The only time they don't like you going from car to car is when they are going through tunnels and might get dust in the train. Going from car to car is really fun-- there is a door at the end of your car with two buttons, one flush with your fist and the other with your foot, that say PUSH. You push them and the door slides open. You repeat this on the door to the next car, and step across the very short span between train cars. You are never actually outside though. I once saw a little boy kicking the lower PUSH buttons and he looked like he was having so much damn fun. I didn't think passengers would like it if I started doing it too, though.

You don't have to arrive until right before you depart. Make sure you call the train station before you leave your house and check to make sure your train is on schedule. It rarely is, which is one of the few downfalls of the train. I don't know about the Kansas City station, though, in terms of parking, but I've never had any trouble (or had to pay for parking). Most of the places I travel to and from have no real train stations to speak of. They might have a little shelter, or a building where you can use the restroom. It's only in big cities that you will find bars and restaurants and possibly be able to buy an actual ticket at a ticket window. I don't know-- when I've been in Denver and Montreal, it was just useful to get a last decent meal before you get onto the train, or magazines and snacks. You show your tickets after you get on the train. You can buy your tickets ahead of time and have them mailed to you, or get a confirmation code to show the conductor. But you don't go through a baggage claim. Nobody asks for your ID. They won't search your stuff. You literally carry it onto the train with you and there are storage areas in the downstairs part of the car for the luggage. There are also several bathrooms at this level.

In the lounge car (the one with all the big windows), in the basement, there is a snack bar that sells outrageously over-priced food AND alcoholic beverages. You can also order wine with dinner. It's mostly useful for providing hot coffee in the morning, breakfast sandwiches (never tried 'em, sorry), and cups of ice. Bring your own snacks. But if you don't bring enough, you can use a credit card for anything you want to buy on the train.

Before mealtimes, a loudspeaker will announce that you need to go to the dining car and make reservations if you want a meal. You should probably eat at least one meal in the dining car for the experience. Then never do it again (you'll see what I mean, though the steaks aren't bad). It's just very very very expensive for mediocre food. (I would like to try the breakfast, but I don't sleep super well on the train, so I never actually make it there).  I have started getting Chinese carryout, or Indian food, or a couple of Jimmy Johns sandwiches for the train. I always carry enough for every meal I will be on the train for (plus snacks). I also bring my own alcohol, though I heard on this last train ride that you aren't allowed to do that. EVERYBODY does that. And nobody has ever said boo to me. I usually don't eat all (or even that much) of the food-- snack mixes and jerky are usually good. Sometimes I think I get a little motion sickness and I don't want to eat anything much. But I almost never take enough bottled water. You *will* get dehydrated.

Take Tylenol.

Take a pillow, and if you will be on the train overnight, take something to help you sleep. A little melatonin or Tylenol PM can make all the difference. I also now take a blanket-- having a pillow and a real blanket can make all the difference. And you don't really have a luggage limitation on the train.

No wifi. You're also not going to see a lot of iPads on a train (versus a plane). You'll see a lot of ipods, a few kindles, a lot of laptops. You will want to either download a lot of television or bring DVDs, and either load your Kindle or take a lot of books. I find that I don't usually read or write, but I always prepare for the possibility that I will want to.

A lot of Amish people take the train. And when you board the train in the early morning, be prepared for the cars to smell like a bunch of people have been sleeping in them all night.

Don't let that last bit dissuade you. I love taking the train. I vastly perfer it to flying (and I like to fly-- I just hate the airport). Also, you are allowed to get off at most of the stops and stretch your legs. In Grand Junction, CO, there is a crappy little gift shop that sells milk so I like that. And if you get off the train in Glenwood Springs, CO, they will announce over the loudspeakers ahead of time some recommendations for nice hotels. It is so beautiful there that passengers often become distracted by the beauty of the area and the canyons and forget to get back on the train.
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I forgot to add a P.S.: Even if you find yourself in a coach that doesn't have outlets at every seat, you don't have to stay in your seat. You will put a little tag with your destination station above your seat, and you need to return to it before your stop, but you can feel free to go find a seat anywhere on the train that isn't claimed by one of those little tags. So, just to reiterate, get the cheap ticket.

Heith asked:
That's good advice. But if you can switch seats, why can't you just take your destination tag with you?
 
The answer is: They load the coaches according to destination and they come by and make sure passengers don't miss their stops, so it's a good idea just to leave that tag alone once its in place. If you are planning a nap, sleep at your own seat or set a good alarm.