The last few days have been tough. Mom fell on Sunday morning and call for me for an hour before I heard her (it was early morning and I was sleeping.) When I finally woke up, we called the firemen for a “non-emergency lift” and later that day I got baby monitors so I could hear what was going on downstairs.

This morning, Mom couldn’t sleep, so I was awakened… early. I was too nervous to turn off the monitor, because then I was scared I wouldn’t hear her if she needed me, so I ended up getting up early.

Perhaps that is the reason that today felt hard. Or perhaps it was that my right knee, which has been hurting since all the activity necessary when Mom was in the hospital, seemed to be getting worse. It was so bad today that I went to urgent care. And got a shot of corticosteroid in my knee for arthritis.

There is such an element of shame in going to the doctor’s office as a fat person. You know it’s all your fault. That you have acerbated every normal aging process by abusing your body. Like a drug addict, your high is sugar and you obviously can’t stop.

As I sat there in the waiting room, wheeled in by wheelchair because of the pain, I had a thought: “I don’t deserve help. I did this to myself.”

I would like to report that I immediately gave myself a pep talk about the silliness of that viewpoint. That I shook it off and resolved that I could work harder on loosing weight.

But I didn’t. I’m still struggling.

After the doctor, I didn’t go back to work. I went to the local wildlife refuge and looked at birds for the last hour of sunlight. There were some tagged dusky geese, which felt special.

I came home the long way and stopped at a restaurant for dinner before returning some library books. I came home to a very talkative caregiver and a phone call by a friend of Mom’s who hadn’t been able to get in touch and was worried about her.

I started a site on CaringBridge to help people be more connected to Mom. I worry that by posting stuff here (a site that is about me) that my feelings may get confused with what is going on with her. 71 views in 3 days. I think it was a good decision.

Tomorrow is WW weight in day. And then I am going to really try to post an art piece. I have several deadlines coming up. That’s gonna be… interesting.

1. Morphine is not living up to the hype.

As a “Generation X”er, I am sure that most of my colleagues remember sitting in health class and being told terrible things about drugs. How they were so addictive and terrible. Of course, heroin was the most terrible of all. One dose and you would become a depraved addict, roaming the streets in your dirty clothes, mugging passerby for spare change for your next fix. Of course, the teacher would always tack on, opiods are a very good pain killer when prescribed. But ONLY if your doctor okay’s it.

Somehow, from all this, I thought that morphine would be administered and BAM! No more pain.

Let me assure you, that is not the way it works.

2. My expectations of privacy have shifted… dramatically!

I’ve always had an iffy relationship with privacy. Again, as a “Generation X”er, I came of age in the time of Alanis Morissette:

I, recommend getting your heart trampled on to anyone, yeah
I, recommend walking around naked in your living room, yeah

“You Learn” by Alanis Morissette

If the shades weren’t all the way down when I needed to change my shirt, I always felt (to my mom’s dismay) that if someone wanted to see me in my bra for a half a second… well, no one was going to die.

Still, I have to admit to more consternation that I counted on when I came downstairs Wednesday morning to find the day’s caregiver here and me with no pants on (they were in the dryer, which was my next stop. I swear!)

3. The amount and variety of drugs is… amazing.

So, when Mom first went on hospice, they made a big deal about “reducing her pill load.” She ended up with 10 pills a day. Then 12. And then there are the “bad days” and there are just so many pills then.

4. The number and diversity of humans in this process is… astonishing.

My dog, Key, has always been a little weird around people. One of my concerns about Mom coming here was that I knew that more people would be coming into the house and I wasn’t sure how Key would take that.

After just under a month, Key has proven to be just as weird as ever, but now when people come in, after barking to announce that they are here, he just goes back to his spot on the couch (unless it’s one of the people who give him treats; those people, he pesters endlessly).

All this is to say that an average day is a caretaker, hospice person (there are a variety of those), and 1-2 visitors. Some days an additional caretaker. And some days, even more visitors.

I feel like my house has become Grand Central Station.

5. I am weirder than I thought I was (by a lot!)

I remember my mom and aunt talking one afternoon about how having their parents visiting was hard. “She takes my towel sets and refolds them into piles of the same size. But I want them as sets!” my aunt wailed.

I remember thinking that was weird.

I now am completely on my aunt’s side.

Because Mom has a variety of caregivers, and those caregivers make food, wash clothes, and do other light housekeeping, I can no longer find anything. My “measuring” drawer is filled with non-measuring items. My pot and pan drawer has tupperware in it.

I could go on… but you get the idea.

6. I say, “I love you” a lot

Mom will occasionally tell the story that her mother would never say, “I love you,” until Mom started using it as a sign off on their telephone calls. “I guess it’s just a generational thing,” she would conclude.

I think about that as I leave the house for work every morning and say, “I love you.”

“I love you” as I make sure Mom’s comfortable in bed before I head to my own room.

“I love you” as I leave to walk to the dog.

Because the last thing I want Mom to know is that I do love her.

Today it has become clear to me that humans were not meant to live a long time. We were meant to be killed and eaten in our prime by a saber tooth tiger.

As Thomas Hobbes put it, “Life is nasty, brutish, and short.”

I wish!

Mom had a bad pain day today. I’m not 100% sure what happened, but it started off that she didn’t take her normal pain medicine “on time.” In the week I have been done this, I already know this is the start of a disaster.

About 11:00, Mom called and left this message (I was in a meeting and had forgotten my phone at my desk):

“Hi, Tara, it’s Mom. My side is hurting pretty bad and I don’t seem to be able to get it to stop. But I don’t remember what else I can take. Would you check with hospice and then let me know what I can take. Thanks. Bye.”

I came home and placed a call to hospice and ended up giving Mom morphine for the second time.

When I got home for the evening, she took some more and when that didn’t work, we called hospice again and did a second stronger dose.

As near as I can tell, the (lung) cancer in her liver is making her liver swell. That, in turn, aggravates nerves that were never intended to be aggravated. The result seems to be pretty excruciating.

While I know this is awful for Mom, the thing that’s hardest for me is that there is ABSOLUTELY NOTHING I can do. There is no action I can take. I desperately want to do something, and there is NOTHING to be done. This is the epitome of mindfulness; I can only only be around to offer my presence.

Other than tracking down that saber tooth tiger…

Right now, if you take any 15 minute segment of my time at home, there is at least one instance of me trying desperately to remember, within about 6 feet, where the most likely place for any given item might be.

Dishes.

Papers.

Medicines.

Clothes.

Food.

The dog (probably near the food…)

I consider myself a pretty organized person. I’ve written occasionally about how my studio got chaotic, but if I needed an art supply, there was pretty much one room in the house it was likely to be. And most other rooms were similarly contained.  As proof of this, my mom called me today at work and asked, “Where do you keep your batteries?” My answer: “In the cookie jar on the counter next to the dog biscuits.” And I was right.

When Mom moved in, she got the studio, which was cleaned out to make room for her hospital bed, chair, TV, desk, and other various items; about half of the studio items went to live in the upstairs extra bedroom; the other half went into my office. I have vague intentions of doing some organizing on the part that lives in my office, but for right now a closed door is enough to keep me sane (or as sane as I am likely to get in the circumstances.) The rest of  the house (as long as certain doors are shut) is reasonably clean and clutter-free.

Here’s the problem. Mom is a “spreader”. My solution to mail is to put in a basket and then once a week go through and deal with it. Mom’s solution is to peruse each item, arrange the various items into piles, arrange the piles on some flat surface, and leave them. And leave them. And then by the end of the week it’s not just a few piles, it’s a whole army of piles. And they never really go away. They just sort of shuffle around. Some items may go, but some piles never seem to leave. In her house I have seen magazine articles live in certain piles for six months or more.

There have been many inner discussions over the last week about how this is my mom, the only one I have, and I should treasure this time with her, not fuss about organization. And usually, I am able to just grind my teeth, and wait until she goes to bed to put whatever item that has spread out back into its designated area.

But there is a part two of this “spreader” problem. Mom is a gadgeter. It’s not enough to have a can opener, she wants several for various sizes of cans. And today, a set of “Ove” Gloves came into the house.

I have no idea how they arrived. Mom can’t drive. My working theory is that a visiting friend brought them. But is the mere fact of their existence on my counter that sent me over the edge.

WHYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYYY?

Why aren’t the potholders and oven mitts enough? Why has someone spent $20 (technically, $20 twice) to bring this insane item into my home for a woman who cannot cook?

Who on earth is sticking their hand into something that is 540 degrees? And flames?

In a very adult manner, I packed up my gym bag, told my mom and the evening caregiver I was going to run some errands, and went to the gym for my swim class.

I will admit to some talking (yelling) to myself in the car. But after an hour of aqua Zumba, I am over it. I have bigger problems.

Like where did I leave that brochure for the psychiatric ward?

When I was a “rebellious” teen, it used to absolutely infuriate me that whenever I would leave the house, my dad would tell me to put on my coat. It did matter if it was -20° or a balmy 65°. “You should put on a coat,” he would tell me as a was going out the door.

I would love to report that as an “adult” that I understand and appreciate the thought. But while the logical part of me knows he was just being a parent (who grew up in Montana, where it is a lot colder than Oregon) is pretty much drowned out by the volume of my rebellious inner teenager who says, “What business is it of his if I was cold? If I got cold often enough, I would have learned to put on a coat for myself.”

I would also like to report that even today, when I leave the house without a coat, I don’t get a little thrill. I’d like to… but I really can’t.

My adolescence was marked by a lot of these little battles. The alarm clock saga. The TV battle. All of it boils down to the me being a bratty little teen rebelling against the parents who really were older and wiser and concerned.

All of this is going through my mind last night as Mom and I sat in my living room bellowing, “I love you” at each other while a social worker tried to mediate our dispute.

As I have mentioned, Mom has stage 4 metastasized lung cancer. Fifteen years ago, when she went through breast cancer, she said she would never go through chemo again. So she came out of the hospital and was enrolled in hospice. The only way I could get her out of the hospital seemed to be to tell the doctors she would live with me where we had a full 24-care plan lined up. But our plan was always to get Mom back to the beach.

Unfortunately, that has proven easier to say than do. Mom’s friends have been working around the clock, giving me likely care sources. And while we have identified a few possibilities, there remains large gaps in care and even the areas where there is a solution, it’s a “blind” solution. We would be hiring individuals, not companies. No background checks, no bonds, no safety net. All cash out of pocket with no assurances.

When the social worker came over last night (the Federal government requires that all people enrolled in hospice get a social worker to make sure they are okay), one of our goals was to talk about how to get her hospice transferred down to Lincoln City. But I felt honor bound to say, again, that I was concerned about this plan: the gaps in care, the strangers, my inability to keep an eye out when things got worse.

While I believe Mom is hearing me when I tell her about my worries, her desire to go home is so strong that I don’t truly believe she is “hearing” me on that deeper plane. The plane where if I was an adult and not an emotional teenager I would have gone and put on the stupid coat to alleviate my dad’s concern. Where Mom would understand that this is a bad situation that none of us planned for.

In the end, the social worker pointed out some things that neither of us had thought about. He suggested Mom could go back to the beach for a “vacation” for a few weeks (or a month) to get her affairs in order. Because of the short duration, I would feel more comfortable with the limits of the arrangement. He also pointed out to Mom that whatever solution we reached, I would always have to live with it. Then he told her that if she went down to the beach and the situation did get back, adult protective services would have to be called. “That’s not a threat,” he said, “that’s just the way it is.”

I’m not sure which of those arguments swayed her, but Mom has agreed to stay with me, though we are going to the “vacation” plan. So, tomorrow we’ll load up in my car and head down to the beach to do some packing and other little things. In about a week, friends of my mom are coming over and I think they will go back to the beach where there might be a party and some more “goodbye” things. Then she’ll be staying here.

I’m just praying that I can be flexible enough to not cause Mom to go off the rebellious deep end.

Lots of people have been saying they will pray for us, or are sending us light, or are sending positive vibes.

Sort of seems what we really need is a full time mediator!