Thursday, January 20, 2011

The Red Pill

"The first appearance of the concept of the "red pill" in the 1999 film The Matrix. A hacker named Morpheus offers a choice to the film's protagonist, Neo, to take the blue pill, where "the story ends, you wake up in your bed and believe whatever you want to believe", or to take the red pill, where "you stay in Wonderland, and I show you how deep the rabbit hole goes."
These days, I sleep on this foam, mattress top thing on the living room floor with a baby monitor on. My dad's room is only about ten feet away, but last night, the monitor was on too low, or I was too tired. I thought, drowsily, at one point that, wow, my dad was really sleeping well. Um. Apparently, he was a little freaked out when he called repeatedly and nobody came. I feel horrible, but he was able to get out of bed and take care of what he needed, so there is at least that. Right now, the monitor is turned on HIGH, and Matt has a monitor in his room too, in the basement, just in case.

Yesterday afternoon was a little discouraging. Matt and I went to look at our first nursing home. It is literally the road over from my parents' house. I could walk to it from here, but my mother probably could not (and should not). It's gorgeous-- our social worker, Nicole, described it as the Ritz Carlton of nursing homes, and I believe it. It's priced like one too.

The discouraging parts are these:
  1. We are still trying to determine exactly what benefits my mom will continue to receive. We think that nothing will change, but we don't know for sure, and nobody wants to assume in a situation like this. So, we can't make any definite decisions until we have those answers. My dad says she will be well taken care of, but can't really give us definite answers on this right now. Today, we got out practically every single scrap of financial information we could find anywhere and sorted through it with my dad's two best friends here, and none of us could really figure it out. So, we are making an appointment with his accountant. I now know why there are estate attorneys. They deliberately make this shit as confusing as possible so we have to pay them to figure it out.
  2. Remember the other day when I wrote that we'd have to have my mom legally declared in competent? Well, yeah, that is a thing that is going to happen. Today, the hospice physician evaluated her, and Monday her primary care physician will formally evaluate her. I don't understand why her regular doc can't just DO THIS FOR US, but everyone wants to cover their ass. We are going ahead and getting two physician's documents, just because two is better than one.
  3. After talking to the woman at the Ritz, it became clear that our mom needs more specific assisted living. Apparently, there are levels. Level one just means you occasionally need a hand and don't want to live alone. Level two is more what she needs: She needs 24-hour supervision. Physically, she is ambulatory, can take care of her own toileting and showering and dressing, but emotionally, well, I said today, "If it were ethical to remove her larynx, I would just move her in with me." It's so terrible that it boils down to the fact that one of her largest problems is she can't keep her mouth shut. Every day all day, the constant barrage of problems and complaints and major upsets over the dumbest shit in the world. I'll get to that. It's exhausting, as I've said ad nauseam, and it's also preventing us from taking care of some of this other stuff (tomorrow we get to buy cemetery plots! Whee!). Not to mention, it distracts us from our dad. Also, she constantly goes into his room bitching about something before we hear it on the monitor and shoo her out, which pisses her off excessively.
         So, Level two. This means lockdown. She will be in a unit that locks down so she can't leave. I called the social worker and said, "How do we do this? How do we put her in a nursing home when she is adamantly against this?"

        "First, you get the documents from the physician. Next, you and your brother have power of attorney. So, you take her kicking and screaming, and you leave her there. They deal with this all the time."

Wow. So, you can really do that to another human being. To your mother. Nicole went on to explain that *this* is not the abusive decision. The abusive decision is to allow a person who needs her kind of care to live unassisted. In fact, that is elder abuse/neglect. So, no matter how she views it, the nursing home is the responsible and caring decision. But it feels like we are sending her to hell. Ritz Carlton hell. Because of her broken mind's perceptions of institutionalization.

The woman at the nursing home worried me though, because she said our mom might get worse if she is surrounded by people with really severe dementia. That bothers me a lot. But I don't see her sitting in her apartments quietly like Helen, the lovely woman who let us tour her apartment. My mother cannot play Bingo. She cannot read a book or join a book club, though she told us she was recently made president of her book club. Matt cracked a joke about giving her sodium pentathol earlier today, and I said, "Yeah, that would shut her right up." We just look at each other in amazement at some of the lies she tells. It's just remarkable. She cannot play cards, and she cannot do crossword puzzles or needlework. She can complain. She needs a facility in which she can complain from the moment she wakes until she goes to bed.

But I'd been really hoping, before our visit, that assisted living might be the solution for her-- a lower level of it at least.

4. Lock down or not, nobody has availability right now. At least, none of the ones we've called and explored. They tell us that they typically have a 30 to 60 day waiting list. Which means, of course, that they think someone will die in that time. Wow, that is so depressing. Someone else has to lose someone they love, someone else's life has to end, before we can place our mother. And it's awful that they have people dying there at that rate. My dad's hospice physician told us today that ours was the best visit he could anticipate all day today. He had 8 more patients and 250 more miles to go.

After we went to the nursing home yesterday, we went to the doctor's office to try to pick up our document about our mother, and he wasn't in. This was before we found out he wants an appointment with her, too. I'm not a fan of this doctor anyway, because he told my dad the lesions growing under his arm were not cancer. How can somebody be that stupid? So, feeling discouraged, we decided to go to the mall for some retail therapy. We both ended up being too depressed even to buy anything more than an orange julius and a coffee, and Matt had both of those.

I had a good, hour long run on Tuesday evening, but nothing since then. I am trying not to eat much, but I worry that I'm going to gain weight, and that is making me depressed too. Every morning, though, I shower and put on makeup and earrings, because I have decided that if I stop changing out of my pajamas, if I stop putting on makeup (which is weird, because I almost never wear it at home, and here I have a full regimen), if I stop at least *trying* to respect myself, then I'm going to end up in a hole it will be very very difficult to pull myself out of. And as a primary caregiver right now, I can't let that happen. I go to bed earlier than I want, I don't eat food I want to eat, and I wear makeup. These are small things, but they seem to require great effort right now.

When we got home yesterday, Pat was very agitated. She is really starting to get easily upset as time goes on because her routine has been upended. And it will never be the same again. Never. Ever. Her entire life is changing, and it is very confusing, very frightening, and it just makes her cling more and more to what she deems important. She and my dad had eye appointments yesterday. Matt canceled them on Monday before my dad got back, because we didn't really have any idea at that point of what to expect. My mom carries around her 2011 desk calendar and asks us to read it to her. She keeps all of her appointments on it, which include, invariably, one doctor appointment and her weekly hair appointment. But she refuses to wear her glasses, so she can't see it. Because she obsesses over things, we didn't even mention the eye appointment to her. She started asking me if she had a dental appointment this month, and I truthfully told her she didn't. I suspected she meant eye appointment, but I knew if she didn't know she had one, she wouldn't be upset about missing it.

Well. When we were out yesterday afternoon, my dad remembered the appointments and asked her if she had missed it. Whoops. Mind like a steel trap, that guy. So, she started freaking out. Only, there is no phone number on the appointment, and only a last name, and we don't know if it's with an optometrist of opthamalogist-- well, Matt does because he rescheduled it. But yesterday when she was freaking out and grilling me about it, I didn't know any of this, and Matt was making phone calls in the basement. She kept insisting that she needed a new appointment. Then I found out she has one in two weeks. So, we told her that. She kept talking about how she had missed her dental appointment. My dad's two friends left and Matt cooked dinner, and my mom talked at me.

"I missed my dental appointment today, and I really need another one."

"It was an eye appointment. And we rescheduled it for two weeks."

"Well, why did you do that?"

"Because we didn't know if anybody would be able to take you."

"Well, So and So could have taken me."

"Who is that?"

"She lives down the street."

"Well, we did not know that, and we are sorry."

"Well, I missed my dental appointment, and it was very important. My teeth have been hurting for two days!"

"It was an eye appointment, and you have another one in two weeks."

"Thank god, because my tooth is killing me."

This continued until I really started to believe, despite not seeing any indication anywhere nor having heard prior to this about dental pain, that she may have had a dental appointment. I started to get really confused, and we had the above conversation three times in a row, at LEAST, while Matt was making enchiladas for dinner. By the end of it, I was laughing so hard I was CRYING, and she didn't seem to notice. Matt kept saying, "I don't know what the eye doctor is going to do about your teeth. Unless he is an eyetooth doctor. Maybe he has specialties in both areas, but instead of an ear, nose, and throat guy, he is an eye and teeth guy."

This morning, it was time to change her pain patch. She has it changed every two days. She wears fentanyl patches, and they come in a red package, at 75mg or something like that-- the number 75 is the important thing. However, two boxes of them are missing. They are supposed to be in a shoe box on her dresser, along with medical tape and scissors. There were only about 4 patches in the box, though, and she started to get very very upset. I kept trying to calm her down so we could change her patch before we found the others, and she kept leaving the room, trying to get my dad's friend to write her a prescription (he is an allergist), and he told her that he *can't*. I finally got the new patch on her, and found two boxes of the 50mg OLD patches. She insisted that my dad had wanted her to throw those out (so, why didn't you, Mom?), and that they were expired (they aren't). What they are is a lower dose, and she knows that. We still can't find the other patches. She said throughout this experience, "I'm so careful! I'm so careful with medicine. I never lose anything. Someone took the patches out of the box!"

And when we told her that it had to have been her, she got very angry. "Can't you give me the benefit of the doubt about this?" she asked. Frankly, no.

Matt had put her patch on her the other day, but today he came over and whispered, "I'll give you a hundred dollars if you put the patch on her."

I found out why when she pulled her pants down so I could put a patch onto her stomach. Honestly, if I see my mother's private parts one more time, I am going to be permanently scarred, I think. She keeps pulling her pants down on the way to the bathroom, and she pullst them down when we go into her room so I can massage her back (at least twice a day), and I always have to ask her to pull them back up. It's bad enough for me, but I think Matt might actually *be* scarred from it.

There were two other incidents, and one of them was my fault, but it was inadvertent. My brother administers our parents' pills-- he has them all organized and he lays my mother's out with her vitamins on a napkin. This morning, he told me there was a bill he'd forgotten to pay, and we had been talking to Pat about her pills, so he handed me three pills, and I put them on her napkin. My mom argued that she was not taking the right pills,but, not giving her the benefit of the doubt, I told she was and she took all of them. Well, it turns out that I had given her my dad's pills too. Fortunately, even though he is gravely ill, he isn't on any medications that would hurt anybody. They took him off his blood pressure medication because it turns out that the fluid in his abdomen is being caused by tumors weeping. This lowers his blood pressure, so they don't need to medicate him for that. They also no longer really care about his cholesterol. So, he is on an anti-depressant, an Ativan, and something else that's pretty mild. But never discount the power of the placebo, and she started insisting that she was dizzy and the room was spinning. However, she usually says that twice a day, and I usually say, "Then why don't you go lie down." And she never does. Or at least not without popping up two minutes later to go to the bathroom or look for something or call to verify an appointment she has already called about, so I finally give up trying to get her to nap. She is like a recalcitrant toddler in that way.

The very next and immediate crisis was that her hair appointment is USUALLY on FRIDAY morning at 10:30 a.m. However, they called and told me Thursday at noon, so I wrote that down. Then she was furious that I hadn't given her the phone for HER phone call, even though she was not home at the time that they called. She has no sense of how insignificant and minor her hair appointment is. In the grand scheme of things, it doesn't even rank, and I told her that. Honestly, we mostly just honor them because they give us an hour or two of peace. And the woman who does her hair is another saint, and frequently cuts my mother's toe nails for her.

The hospice doc came today-- another geat person-- because we were wondering if my dad should have his abdomen drained. He explained to us that he wanted to wait, in spite of the fact that the hospital had done two dramatic drains in three days. It's very very taxing to the body, would lower his blood pressure and dehydrate him, and the body responds to being drained by trying hard to replace that fluid. They took two liters Friday, three on Monday-- so every time, it just makes it a little worse. When he drains it, he won't drain nearly that much fluid-- he doesn't think more than a liter should be taken at a time.

He explained things that I didn't know-- like the fact that tumors are causing the fluid build up (and his kidneys failing). I also did not know that his abdomen and brain have tumors now too. That was a stunning progression from showing us scans that showed very minor amounts of cancer in his lungs and liver-- but he said melanoma is still very mysterious. One day you can have a clean scan, and then very soon after have it head to foot. This is not unusual. The only good thing about melanoma is that it doesn't cause a lot of pain. But if he starts to have pain or starts to really fight for breath, we can give him liquid morphine under the tongue, and it will help with both. And the liquid morphine isn't nearly as scary as I thought. It has a short half-life, so it doesn't last very long-- but its effects seem to be pretty immediate. So, we talked about if my dad started panting for breath toward the end or panicking because of air starvation, and how that is what the liquid morphine is really for. And, of course, pain if it occurs.

Nicole the social worker had told us that if we didn't have a living will and advanced directive (we do), then if we called 911, they would do EVERYTHING to resuscitate him, and it would NOT be a pleasant experience for our dad. I asked Matt later why anybody using hospice would bother to call 911, and he said, "Because they panic." So, we have learned that when we feel panicky, we should administer liquid morphine and call Hospice. Not 911. It is dreadful knowing this is coming. Especially when he is doing so well right now.

I followed the doctor to his car and asked him if he could give us a best guess about a timeline. He said two or three weeks, which is consistent with what we have thought, maybe a week or two longer than we had first anticipated. I just nodded. He explained that the cancer is already affecting his blood platelets, which makes his heart work harder. He will also lose more lung volume. I had previously thought (and I think written here) that he'd have a potassium build up and have a heart attack, but it seems that he won't. It is indeed the cancer that is going to shut his body down. In some ways, I find that more comforting than his heart, because it's so easy to hate the cancer and to be angry at it and blame it for being so vile. I admit, I worry now about getting melanoma, because I am fair-skinned and I have had my share of really awful, blistery sunburns.

I said over Christmas break at one point, when  neighbor was visiting and telling horror stories about growing old and people he knows growing old, "Man, the more I hear about aging the more 65 sounds about right to me." And my dad said emphatically, "Wait and see how you feel at 65."

I repeated something similar to one of my dad's old friends from our Denver days, who knew me when I was just a little girl, and he said, "Jennifer, it changes when you get older." I admit that this has me kind of shaken up. I've been a pretty arrogant little 41-year-old, cavalier, talking about how I smoke because I want to die before the alzheimer's kicks in, but now I'm a little worried that there may come a day when I find myself really screwed over because my predictions have come true and I no longer want that fate. I have told a couple of friends this:

This is a lot like the experience of becoming a parent, because no amount of reading or anticipation or preparation can prepare you for how you will feel about that child. And you just have to experience it for yourself. There is no other way to do it. And I remember when my water broke with Sam. I had this incredible sensation of panic, because I realized that there was absolutely no way I could get out of this. I had to move foward. I had no choice, and it was going to be dramatic and hurt and it was going to be scary, and oh my god, wow, I really don't want to do this right at this moment, and wow, I really have to anyway. I've led a charmed life in a lot of circumstances in which I have been able to talk my way out of unpleasant experiences, or postpone or dodge them. So, it really shakes me up when my brain is racing to find the exits and discovers it is in a circular room with no windows and no doors, just a completely dark and scary tunnel in the middle of the floor. And no way out but through.


  1. Damn, girl. Damn. Thinking about you, lighting candles, sending love...
    Love, Tracy (Miess, Shaffner)

  2. Sorry you have to go through the rabbit hole and can't just take the red pill. Thinking of you. Wishing it was better. Sending love.


  3. Rebekah has been working in a lock-down facility for the elderly... and loving it. No matter what your mother's emotional reaction to it -- and from the sounds of it your mother's reaction to most things is strongly negative, so why would this be different -- those can be good places. It sounds like you've found one.

    Like a recalcitrant toddler, sometimes, in order to be a responsible caregiver, you must do what is good for them over and despite their protests.

    You're doing an amazing job, Jen. Your dad is so lucky to have you there. And he's why you're there.

  4. I think that people with Alzheimers rely very heavily on their environment to keep themselves at all functional and it is very hard for them to adjust to change because all of the little environmental cues that they depend on are gone. It will be very hard for your mom but eventually there will be enough cues in the Ritz for her to be at least comfortable. Although she hasn't updated in a while because of her father's cancer (which ended his life a few weeks ago) this is my cousin's blog about her mother (my aunt).

    It was weird seeing my aunt at the funeral because she seemed really normal, perhaps a bit less pretentious than usual, but very normal. However I actually knew that she had forgotten the day before that her husband of more than 50 years had just passed away. She had to be reminded why everyone was coming over. It was bizarre, the difference between these two realities.

    And, not to be preachy, but my father in law is going to pass in the near future from lung cancer. He is 62, and it is pretty gutting for his kids and his wife. As an outsider I think it is fairly sad that he would rather smoke than be around for his kids and wife who all love him and who would all rather have him here than not. I'm sympathetic to the fact that it is an addiction, but maybe an addiction to xanax would better because it least it won't kill you.

    I really am sorry to read about all this horror. I wish you strength and compassion and maybe some of those earplugs they give you airplanes. It sounds like you are doing a remarkable job.

  5. That last was from me, Anastasia

  6. Hey Jen, I empathize with you so much. Be sure to read as much as you can about being a caregiver and you will find that you are doing the right things. Take care of yourself, pamper yourself, get out when someone else is there, if only for a little while. I also have experience the red tape, the family entanglements, the putdowns, etc. Just remember what a great gal you are.... Mom, Wife, Career Woman, Friend, Etc. Hang in there, but be sure to let yourself put yourself first at times.

  7. you are blessed to be able to let your feelings, thoughts and experiences flow off your fingers with each stroke. there is healing in your sharing. and your experience rings true to what i've known in the valley of the shadow of death. you are not alone Jen.

    sometimes we go to "why does this have to happen?" that place is best avoided but if you do go there, just trust that there is purpose. 2nd Corinthians 1:3-7 helped me find purpose; maybe it will help you too if you need comfort that your circular room with no escape has purpose.