Why I Should Be Paid the Big Bucks

Mom awoke from her afternoon nap a bit disoriented today. She does often forget various facts about the past and present (good news: my sister is no longer in jail), but most often she recognizes the information when I tell it to her. Today, however, I was surprised to hear that she wanted to get dressed in a blouse and skirt. So I fetched her a selection of blouses and skirts, and she chose a set. Then she told me that she had to get dressed because her parents are coming.

I said, "They're not coming this evening, Mom. We aren't having any visitors tonight."

"Are they coming tomorrow?"

I tried to get out of telling her this, but she is not quite confused enough that I am sure that I will not be caught in a lie. So I took her hand and told her the news: both of her parents are dead.

She didn't remember this at all, and cried while asking me a lot of questions about how they died, where they were buried, and whether there was a space for her between them because she didn't want to be all alone on the end of the plot.

I just wish that her confusion could be less upsetting. In a way, I will be so grateful when this is over for her.

Then she perked up for a while, even joking with me, giving a little attitude. We ate some dinner, and then she picked up the phone and asked for her brother's number. I said that I didn't think Uncle Ivan had a phone. She looked up at me in horror, and said, "He's dead, isn't he?"

This is why I (should) get paid the big bucks.

Kitchen Cupboards

I have beliefs about kitchen cupboards. I stand by these beliefs. One of my tenets is that glasses should all be placed on the same shelf or shelves. All tea should be grouped together in the same cupboard. Dishes should be stacked with like dishes. Food items are not placed on top of the dishes from which we eat. And it is not necessary to save onion skins, nor every plastic lid in the known world.

I attacked my mother's kitchen cupboards today, which were apparently organized by infidels. My head is bloody but unbowed.

Go to Sleep!

Mom fell out of bed this morning. And she didn't call for me when she fell. I heard a thunk and went to find out what it was. She had forgotten that her legs couldn't hold her, and also forgotten that I was in the house.

Tonight I put up the bed rails and taped a big red note to them that reads, "SARA IS UPSTAIRS. CALL HER IF YOU NEED ANYTHING."

Mom is not asleep yet, which means I am not asleep yet. She has stopped calling for me every few minutes, possibly because she has already forgotten that I am here. But I hear small thuds and rustles, and I have to go check in good conscience, because it may be her scooting down to the bottom of the bed to go on walkabout. Or lumpabout, as the case may be.

I want her to fall asleep because I must wake up in 7 hours to give her the morning meds. I need 8.5 or 9 hours of sleep. You see my dilemma. I thought that I could get out of staying up until midnight by shifting the meds back an hour, but she seems to get a second wind around 10. So I stay up, then try to sleep in after her morning meds. Sadly, the chirpy physical therapist likes to call before 9. One day no less than five people called or showed up unexpectedly between 8 and 10. Have mercy, people! I'm not on a shift here!

Head Cleaning (Without Shock Therapy)

Mom woke up from a nap in tears today, asking me to make sure they didn't give her the shock treatment. She thought that they had given her electroshock "therapy" yesterday. I promised her that I would never, ever let anyone give her shock treatment. I don't know whether she ever had shock "therapy." If so, it would have been before I was born.

Mom worries frequently, almost always about things that are not happening. My sister is not in prison, Gary's mother didn't just die, and we are not late for the party that happened seven years ago. She wants reassurance that, if it's warm enough, we will leave the back side of the square open. (?) She is so sincerely concerned about each and every "problem." Even if she only remembers most of them for a few minutes, she has a new worry to replace each one she forgets.

And it's all for nothing. She is worrying about things that are not real. It makes me reflect upon my own "realistic" worries. (Such as using quotation marks on too many words in this post.) But really: I'm not currently out of money for my immediate needs. I am already past the worst mistakes I've made so far, and have more wisdom to avoid them in the future. I have no evidence that I will not succeed in my chosen career. I am still resilient, with no signs that I am any less strong than ever. I even suspect that no one cares about my "wrinkles."

When the rational coping mechanisms fail, one sees what is hanging out under the surface. It looks big. How do we even function, given the magnitude of our worries and bad feelings?

I am seriously considering undertaking a new mission: eradication of any ways that I undermine or second-guess my own happiness. I see that this will mean taking some risks, like no longer guarding against being disappointed and being criticized and being ignored. Because guarding against these fears is anticipating them. And expecting bad things to happen undermines my happiness.

Would you all do me a favor? Figure out what you're on guard against in your own head. And then, would you please consider staring it down, and telling it that it is not real and should get lost? Then figure out what it takes for you to really believe that. I don't want to end up full of fears waiting to jump on me. And I don't want you to either. We all have lives to live, thank G-d.

Love You Still

Dear Mom,

You are being so incredibly brave in the face of this cancer and your prognosis. You have actually let other people take care of you, which you have never trusted us to do before. More and more, you are expressing your love through your smiles and words, not hiding it under the sarcasm of fear (that's right, we're yankees). You tell me every day how much you appreciate all that I am doing for you, and today you even told me that having me here makes you feel safe. I admire all the growing you are doing, even in this late stage. Your confidence in my care of you touches me so deeply, and I am gratified to have this special time with you.

Now... will you please stop arguing with me about your meds?! I know that you do not remember the 47 or so conversations that we have had about your medication schedule in the last two days. I know that you do not remember that this schedule has been working well for the last week. You don't even remember taking an as-needed dose of pain meds an hour ago. But please believe me when I assure you that you do not need to take your sleeping medications two hours early for them to work. You sleep frequently all day, and have slept soundly through the last seven nights at least!

We were okay the four times today that I explained to you that my sister is not in prison. (Sister texted me, "Talk to the doc about the dosage of Haldol." It's an anti-psychotic. I texted back, "What do you know? You're in prison.")

And the conversation about the oxygen tank in the corner was adorable. You told us that if you turn it a quarter turn every day, it will grow straight up!

But for some reason, even though you explained to me in detail how your meds work, and why you need to take the sleeping meds right now, I will not do anything other than what the doctor ordered. You can call me unreasonable. Or call me whatever you like... I just don't know whether you will remember it in five minutes.

Love you still,

Your Daughter

Cancel Delivery

Today we had a walker, a commode, a wheelchair, an oxygen concentrator, a backup oxygen tank, a portable oxygen tank, a backup portable oxygen tank, and a hospital bed delivered. We looked around the wreckage of the living room, and called to cancel delivery of the Mother. Seriously. We arranged for her to stay in Hospice another night because we thought it would be too disturbing for her to come home and see her house looking like it was turned inside out.

My sister and I are trying hard to make her living room look like it did before, only with a hospital bed, a commode, a wheelchair, a walker, and 17 types of oxygen.

I am primarily handling the arrangement of physical objects, while my glorious sister is tackling years' worth of old mail and papers. Remind me, when I get back to my house, to burn immediately any papers that are not worth over a thousand bucks. It ain't worth it.

For the edification of the interested (hi White Deer Park crew!), I did bravely get the scoop on the crush situation through the simple yet elegant technique of just plain asking what was up. Turns out that I had not been misreading signals, I had been getting contradictory signals: he is interested in getting to know me better, and he is hesitant to date for a couple of legitimate reasons (not the least of which is the probable emotional turbulence of a person who is caring for her dying mother. Er, yes).

So now we are planning to go hiking and start becoming friends in person, not just on Facebook. Without "dating," per se. I am well pleased with this situation. Friends is like flour: a basic ingredient in many different kinds of good things.

Moving Forward

March 20, 2012: The way forward… is looking thick. Mom is due to come home tomorrow. My back is on the fritz, due mainly, I think, to terror of being left alone to deal with Mom. I will be controlling her meds, which she says she agrees to, but which has been an enormous power issue in the past. I will be emptying the commode, helping her every time she gets up or down (which she is now just about able to do, with a walker), dealing with her episodes of breakthrough pain, cooking and running the household, and listening to her shifting stories weave in and out of reality all day long. This last is the most horrifying prospect.

As a mature, rational, capable adult, I have been preparing for all this by 1. Not eating enough, and 2. Developing a huge crush. On the positive side, I am losing what winter weight I had gained, and I wrote an essay I had been meaning to write for some months (as I have been exchanging essays and Torah ideas with the feller I’ve got the crush on).

On the negative side, we have inability to stop obsessing about any and all things, the magnification of feeling and the diminishment of logic that come of eating too little, and a feeling like I’m about to be swamped and drained simultaneously. Which I have felt before, here in the lovely state of New Hampshire where I grew up.

The fact that I grew up here allows simple things like a hill of moss in a forest, a spring breeze, or the expression on another New Hampshirite’s face to bring on waves of feeling and memory that I haven’t noticed in years. Some rediscovered memories, like playing in the soft sunlight in a white pine wood, are welcome. But then there are the others.

I didn’t really enjoy revisiting the feeling of being alone amidst vast, potentially life-threatening needs. This goes back to my mother’s illness and my father’s depression when I was a teenager, and there is nothing like a long look at the spare, frozen fields and marshes of New Hampshire to bring back that alone-in-the-world, no-one-understands-or-cares sensation. (Out of all my old baggage, I realized today, this feeling is probably contributing the most to my crush, as the feller in question is doing things like keeping in touch on Facebook almost every day, praying for my Mom, writing back and forth about things that matter to me, sending me songs he thinks I might like, praising my ideas – all those things that contradict loneliness and feeling invisible. My only concern here is that he is not at all eager to get together in person, which makes me think that he is not interested in a real-world friendship.)

Then there are memories of my parents’ divorce, shortly preceding the illness and depression era. Oh yeah, that felt like the people I cared about most in the world tearing each other apart. I am so glad that I have been able to get more in touch with that memory! What joy! (I had another fun experience that year, which was an enthusiastic correspondence with a young man in another state who, after six months of writing letters that said things like, “I miss you so much! Can’t wait to see you,” got himself a girlfriend and quit writing to me. Unless I quit writing to him first. It was more or less immediate. I would like it to go on record that I did not know until recently that he and my current crush share a first initial and a last name. How weird is that? You can see how the less rational side of my mind comes to be freaking out over the potential for being disappointed here.)

Right now I’ve got a rickety bridge of stoicism over a raging emotional river. I would rather not have to swim. But I know I will.

Mom's Questions

March 18, 2012: Mom is experiencing delirium. She has many questions: “I know you told me, but where are you sleeping again? It’s Sunday, right? The new and continuing racism… what do upper-middle class Blacks think of it?”

Sticking Together

March 15, 2012: What was I saying? Yes, I will move up here now! Here I am.

Mom is in the Hospice House now for pain control. I thought that the moment I arrived, she would be delivered unto me, together with a confusing array of medications which might or might not require me to wake up twice each night to help her take them. So I am getting an easier transition than I thought. Which is good, since the ol’ tum went out of commission promptly upon arrival, necessitating a liquid diet for a couple days and easy proximity to the WC.

I have spent several hours with my mother each day, but today was the longest so far. We hung out for six hours. When Mom is lucid, she is just lucid enough to be dangerous – like, she could potentially try to spend money online or call her financial advisor. She also tried to take a walk without help once, which worked out really poorly as the catheter was tied to the bed frame.

A conversation with Mom can cover a lot of ground these days. She asked me how I think people with a strong awareness of tactile sensation perceive information. She asks me about my father’s death, for which I was present and she was not. I see that she wants to know about how my sister and I will handle her death – both for her sake and for ours. But another day she asked me whether Dad was living in Cambridge, and I had to tell her that no, Dad died. I think that she remembered once I said it.

Then she is asking me whether we have a dog, and who is taking care of it while she is in the hospital. (We don’t have a dog.) And then she said, “Poor parakeet.”

“What parakeet, Mom?”

“The one the mouse is going to catch.”

What do I say to that? So I said, “Poor parakeet!”

She also tells me that she could really improve this unit’s efficiency and operations, if she could only remember what she just thought. At least the fan cord is no longer transmitting data. And she hasn’t mentioned since the weekend how they probably have all of her numbers now because they were spying on her as she was flipping through her address book. Nor has the moose come back to drool on her shoulder. I think the Haldol put those last three away. Good call, Hospice.

My experience with Hospice is matching what anyone who has dealt with Hospice knows: They are all wonderful, caring, sensitive people who have enough time to deal with you and pay attention to your individual situation. Today, a social worker and two doctors sat me down to talk about bringing Mom home, and what that will entail. Someone with her 24/7, managing meds, lots of physical assistance, and trying to help her with her pain and fear.

I’m thankful that I can be here with her, and she expresses her gratefulness to me every single day (except for one day last week when she was hateful, but hey, she is dying, she’s entitled to a hateful day or two). And it is wonderful that Hospice is available, and that they are the caring, whole-person oriented, skillful professionals that they are. And I am getting a lot of support from friends and family and coworkers to be here. But what sank in for me, at the meeting today, was that all of that support and all of the craziness of the last 20 years is really just going to come down to Mom dying. This is a far cry from the visions I had as a kid of our family accomplishing important things and enjoying life together. I can’t say any life is a waste, but it is hard to reconcile the family I thought I once had to “life sucks and then you die.” That was not my plan for us. But the only part of my plan that I can carry out at this time is that our family sticks together. Even if it didn’t always, it does now.

The Pills, The Pills

February 10, 2012: If I may be permitted a note: In the event that one finds oneself near unto being overcome with pain, I suggest that it behooves one to actually take all of the medications that one is actually being prescribed, prior to getting one’s daughter to call the doctor to insist that one need new drugs.

I get that the steroids made her hallucinate cats, and that that was a bad thing. Not that the cats themselves were so bad. It’s just that she was afraid that the bears would see the cats nibbling at her fingertips looking for cat treats, and then the bears would sneak up and chomp her hand off. Anyone can see that this is a serious problem.

So no steroids. But of the drugs that actually have worked in the past, drugs which she is currently being prescribed – how ‘bout we take those drugs and see whether they help? Kinda crazy, I know. And, um, just wondering: why didn’t her doctor friend who stayed over at the house last night catch any of this? Or if she did cause Mom to take the prescribed drugs yesterday, how is it that she didn’t mention to me when I spoke to her that Mom is having trouble remembering what she can take? This poor woman has twenty or thirty pill to take every day, she is in some of the worst pain of her life, and no one has noticed that it’s difficult for her to keep clear records? I’m glad Mom kept as much of a record as she did, because I was able to tell the nurse at Hospice what Mom had taken in the last six hours. The nurse promptly told me that Mom had not taken her every-four-hours-as-needed-for-pain drug. Gosh, that was ever so helpful once we got it in her! Who knew?

I think I will get a big 24 hour analog clock. Then I will attach pill holders around the circumference, one for each hour. Then I will put in each pill box the pills to be taken at that hour. Maybe we will rig it like a cuckoo clock so that a box pops open on the hour with a gay tune. And there can be a little note in the lid every four hours: only take oxycodone as needed for pain. Seriously, the doctor who slept over last night didn’t catch that? And what about nights when no one is here (most of them)? How much unnecessary pain is my mother enduring? I am going to have to move up here soon.

Mom's World

December 19, 2011: It may be fortunate that I do not have a family right now, because I am free to be financially irresponsible, working part time, deferring school loans, and flying up to be with Mom for a week every month. She has a very busy social calendar now, such as: Sunday, visits from Nausea and Retching; Monday she entertains Ginger Ale; Tuesday, grocery delivery, my arrival, and a scolding from Dr. W for losing weight (“Not eating enough!”). Wednesday brings Overwhelm and Fatigue, which cancels her appointment with Dr. C.; Thursday we are joined by Hip Pain and do not tour the Hospice House. This is why I am visiting only two weeks after my last visit: she wanted me to help her dodge a call from Complete Meltdown.

One of the great lessons that I am learning from being with Mom is that I do not have to believe what she believes, or to feel the way she feels. I, for instance, do not believe that the neighbors hate her. I do not believe that Dr. B. was challenging her when he commented that she used high levels of pain medications. I don’t even think that her acquaintance is being excessively friendly when she takes more than one e-mail to arrange a drop-off of kosher deli goodies all the way from Rhode Island. I am very happy that I don’t have to see things the way Mom does.

During my first visit after the diagnosis, Mom said tearfully that she was so very happy that I have finally matured to the point that I am willing to work on our relationship. At first this made me angry. But in a sense, I now think that she was right. It takes a lot of maturity to guide someone else, to listen to others respectfully while disagreeing, to know when to insist and when to give in, and to do it all in a way that helps the other person live a better life. I have done a lot of maturing to get to the point where I can do this for her. And I feel great purpose in doing so.