All the Doctors

We had another medical appointment today–a follow-up with Mom’s primary care physician, whom I’ll call Dr. Striker. There was no particular reason to see him except to keep the appointment. As the person solely responsible for scheduling, providing transportation to, sitting in on, and managing all the information from all medical appointments for both my parents, I am beginning to wonder why we have to be such frequent fliers in all these places.

For Mom, in addition to Striker, we see Dr. Wolf, neurologist; Dr. King, urologist; Dr. East, gastroenterologist; Dr. Hawthorn, cardiologist; Dr. Hamilton, dentist; Dr. Randall, neurosurgeon; Dr. Odon, ophthamologist; Dr. Forrest, otolaryngologist; Dr. Lancaster, psychiatrist. I’m sure there are others I’ve forgotten. It just now occurs to me that I have no idea who her gynecologist is, or whether she should be seeing one. I have no plans to look into it.

Dad visits many of these same people, and additional eye doctors: Dr. Neuburger, glaucoma specialist, and Dr. Fenly, retina specialist. Did I mention he’s blind? Every time we see these people they say, essentially, “no, your vision is never coming back. Yes, that must be hard. See you next time!’

After a couple years in this role, I have finally smartened up. I now stretch out the intervals between non-issue “follow-up” visits to various doctors as widely as I can, and in the case of Hawthorn at least, I schedule Mom and Dad for the same time. Neither of them currently has any cardiac problems, but they both see Hawthorn every six months. That puts me in his office four times a year. We’re becoming friends. I recently noticed he stopped wearing a wedding ring and wondered what it would be like to know him in a different context.

It’s a bit much, frankly.

Anyway, there we were in Striker’s office. Mom’s lost quite a bit of weight–40 pounds in six months–which is excellent for many reasons, especially reducing back pain, but nobody can tell why it is happening. She’s proud to say she’s walking back and forth down the hall a lot. That’s great and all, but nobody loses almost two pounds a week from shuffling from kitchen to bathroom. A more likely explanation is that she’s not eating nearly as much as she used to. When we go out for lunch at her favorite restaurant, she always finishes her meal and gets dessert, so I can only imagine that she isn’t eating at home. Striker said the weight loss is good but he’d like to see her again in 4 months, because of course he would.

The major complaints today were the same as they’ve been for years: chronic cough, chronic shortness of breath. I don’t know what to make of the cough, and neither does anyone she talks to about it. It’s no mystery, though, why someone for whom a 30-foot walk constitutes “exercise” is chronically short of breath. Hawthorn, seeing no cardiac explanation, had ordered a CT scan of her lungs, which Striker reported revealed “mild” pulmonary fibrosis. He says “mild” means it wouldn’t probably account for the near-constant panting, but who knows.

We shall now pursue this mystery with a pulmonologist, because we hadn’t yet collected one of those.

Asking God to fix it

There was a time when my non-belief in a supreme supernatural being would have upset (offended?) my mother quite a lot.

It’s not something we talk much about. When my daughters were babies (OK, Josie was 2 1/2…) I had them baptized in the Episcopal church, mostly to check that box for my parents’ sake. When Mom noticed I wasn’t taking them to church much afterwards, I explained why it wasn’t right for us without touching on the “because there is no god” part. When she said “well, it’s not like you’re an atheist. That would be really painful for your Dad and me,” I let it go, because it doesn’t matter. It’s not about her, or Dad (whose true feelings I don’t actually know). It’s not a position I need to defend or discuss. I don’t proselytize.

Fast forward a decade: In the car last week, she was talking about how my Dad’s suffering (blindness, ostomy) upsets her. “I love him so much. Every night I pray to God to heal his eyes, and nothing ever happens. I don’t know what to make of that.”

I didn’t say that what to make of that is that prayer is futile, unless doing it makes you feel better. The “power of prayer” isn’t in getting what you asked for.

Instead, I said “that’s a better question for Brian than for me, Mom.” Brian is the rector of my parents’ church. He’s checked in with them a couple times a year since they’ve been homebound. While it’s is not a role I hold in particularly high esteem, this is certainly his area of expertise. You bring taxes to your accountant. You bring questions of faith to your priest.

“So, would you call yourself a non-believer?” Ah… a direct question. I’m not gonna argue, but I’m not gonna lie, either. “Yes, I would say that.”

Pause. Then she talked a bit about how she’d been going to church and taught about Jesus since her earliest childhood. Faith, she was saying, is part of who she is.

I thought more about that. My mother’s always been a churchgoer, and an involved one. When I was about 6, she hosted a small serious gathering in our home at which a woman (the horror!) performed the Eucharist. It was the early 1970s and such things, I guess, were Not Done. I had the impression that we were breaking serious barriers in our dining room, behind drawn shades. It felt subversive and important and right. We were feminist radicals!

Through the years, she served on vestries, search committees, and, always very proudly, as a lay reader. In retirement she enrolled in a program for laypeople called “Education for Ministry.” It’s a four-year study, and I don’t think she finished it, but still: This is someone who wasn’t just a parishoner, but who actively pursued theological understanding, to some degree.

Now, she’s puzzled that God doesn’t fix what’s wrong with her 87 year-old husband, because she’s asking REALLY HARD AND A LOT.

It would be senseless and cruel to get into this with her. In the years when she had the wherewithal for the conversation, she was a critical and judging person with whom discussion would have been pointless. Now that she’s more agreeable, she hasn’t the brain power.

I just can’t help but wonder what the human condition could be if some of the energy that goes into pleading for divine guidance were directed instead into action here on Earth. Yes, I know that’s flawed reasoning… “energy” isn’t finite and you can pray and act, both. But still. Still.

Out to Lunch

Mom: What’s the special?

Me, reading: Tuna salad on toasted rye bread with melted pepper jack cheese, sour cream, and pico de gallo. It comes with french fries, onion rings, or cole slaw.

Mom: No, thank you, that’s what I had for breakfast.


Mom: What did I have for dessert the last time we were here?

Dad: Tiramisu.

Mom: What is that?

Me: A layered dessert with coffee-soaked sponge cake, mascarpone cheese whipped with eggs and sugar, and powdered chocolate.

Mom: What is that?

Dad: Tiramisu.

Mom: Have I had that before?

What to do about anger?

I can’t bear to go through all the details of yesterday’s phone call to Mom. Suffice to say that it contained all the usual elements:

  • She was still asleep when I called in late morning.
  • She’d just woken up when I called again at noon.
  • She said back pain kept her up all night.
  • She didn’t know what day it is, and didn’t remember when I told her. Not the first time, not the 8th.
  • She was confused by the number of pills in her box, reporting 4 when there ought to have been 6 1/2. She said today’s compartment was empty, then said it did have pills in it, but not enough. She asked why Wednesday has no pills at all and what will she do then, not remembering that I’ll be back to refill the box. This exchange was repeated at least four times.

In a new twist, she took my Dad’s pills instead of her own, even though her pill box is bright purple, chosen specifically to be very distinct from Dad’s. At least that explains there only being 4 pills. (Fortunately Dad’s were only supplements; he keeps the important stuff separate.) Then she realized her error and took her own, of which there were 6 1/2, as I’d been saying all along (this is now 45 minutes into the call). She said she had been confused and in a rush because I was coming. I was never coming, and had never said I was coming, and it wouldn’t have been a reason to rush, in any case.

This is what dementia sounds like. Nothing she says can be trusted to have any consistent or correlative relationship to reality. When a normal person gets “confused,” they can be set straight. Oh, right, they’ll say. I was just confused. When a dementia patient is confused, talking them through it is like screwing yourself deeper and deeper into the marsh mud at low tide. Then the tide comes in.

All this happened while Robin and I were on the way from shopping to my friend Jolene’s house. We had the Corolla, because Aaron has “my” minivan up in New Hampshire for the weekend. I hate this reliable little car with the intensity of a thousand suns. It’s ugly, uncomfortable, cramped, loud, dirty (Aaron cares much less about keeping it clean than I do), and lacks Bluetooth. The minivan is not a luxury vehicle by any means, but neither is it any of those things, and Bluetooth makes phone calls so much safer and easier.

Robin and I had had an unsuccessful time shopping and were dashing back to pick up Jolene’s son, who’d be spending the afternoon at our house while she worked. I was cranky about the shopping trip. I was cranky about the car. I was cranky about having agreed to have a friend over. I had a headache and the beginnings of cramps. And then I had this hour-long conversation which made no fucking sense, and which, if I could have typed out a transcript, you would not even believe.

When we signed off, I screamed — screamed! — in frustration. Poor Robin. I told her that if I ever begin to do this kind of thing to her, that she should kill me. That, well, ok, obviously she could not be expected to kill me, but she should put me in a home and then move as far away as fucking possible and never look back. I will not allow her life to be sucked up by this kind of thing. I will not allow it. I will NOT.

It was at about that point that I realized my phone had not, in fact, hung up. I had thrown it into the passenger foot well when I said good-bye, but hadn’t disconnected. It is possible that my Dad–it was he on the phone at the end of the conversation–heard my whole poisonous, insane, horrible rant.

I understand that dementia is not my mother’s fault. I understand that being angry about it is normal (and so does Robin. She is a tremendous comfort). I try to keep anger about her illness from becoming anger at her for not being able to think and anger at my Dad for not being more managerial about it (he is blind, yes, but he can think, and he knows what fucking day it is, and he could help with the medicine thing).

It can feel like a lot of anger, which has never been my strong suit.

We got to Jolene’s house, and she asked how I was, and for once, I didn’t turn back the attention and say “fine, you?” I just laid it out. Empty. I’m running on empty. My parents have sucked me dry today and I have nothing left except feeling angry all the time. She listened, and she helped, and it was so good to have a friend in that moment that the stupid aggravations evaporated and the serious issues receded.

Having Josh over was fun. He and the girls played Clue, had a soccer ball punting contest in the backyard, played Wii, and watched Sherlock. Meanwhile I called my parents again, prepared to face their reaction to what they might have overheard earlier. They never mentioned it, and nothing in their demeanor suggested they heard any of it. Jolene said they had probably just put their phone right down after saying good-bye. If they heard anything at all it would only have been car noise from where my phone had lain on the floor. I’m going to assume, with relief, that she’s right.

After Jolene finished work, we all went out to dinner and talked about other things. My friends are terrific, and my girls are terrific, and I’m feeling better.

I’m still wondering what people do with their anger, though. I’m open to suggestions.

Medicinal Muddles

My mother’s memory troubles and general confusion have increased to the point where the possibility of her overdosing on her daily medicines is a constant worry.

Months ago, I wrote out a list of all her meds: brand name, generic name, dose, and purpose. She has handled this handwritten list so much that it is wearing thin. There are check marks penciled all over it. But this list was intended as a reference, not for checking off when pills were taken; a check mark on it is meaningless because it isn’t linked to any particular day.

I began to notice that she was needing refills of prescriptions about a week sooner than she should have run out. Then CVS said that insurance wouldn’t pay for a certain refill because it was too soon to fill, yet I couldn’t have her go without, so we paid full price for the anti-hallucination medicine.

Part of the problem is that she’s in such relentless back pain that she has a constant urge to take medicine to make the pain stop. There is no convincing her that hallucination medicine will not help her back pain.

Clearly Mom needed a way to remember whether she’s taken her pills. I tried to sell her on a pill organizer. She declined, saying the idea depressed her. I told her that I use one myself because the motions of taking medicine are so much the same, and the routine so mindless, that soon after I’ve done it, I can’t reliably say if I did it that day or if I’m remembering the day before. You don’t have to have dementia to forget this kind of thing! But no, she insisted, she wanted to stick with the pill bottles and a checklist.

So I devised several candidates for checklists, some from templates and some from scratch based on observations and guesses about what might work. She rejected all of them. Unchecked boxes were intimidating, and I think sharp black-on-white printouts made her nervous. I know that doesn’t make sense. But I started to notice that my computer-printed efforts stressed her out just to look at, no matter how simple and full of white space I made them, whereas she loves the handwritten page.

This makes me wonder if, in our later years, as our minds fail us, people all try to revert to the forms of communication we liked most during our lives. Handwriting on paper would definitely be the thing, in Mom’s case. It’s an unanswered question, because it’s only in the last few decades that these forms have changed as fast as they do now. But the rate of change increases all the time, so I wonder how it will play out, and if anyone is studying it in a gerontology program somewhere. I hope I’ll be able to keep up, but I picture myself pining for Excel spreadsheets long after there’s no longer any such thing, and I’m so fond of texting that I wonder if I’ll be able to adjust to whatever replaces it. I don’t know. If my giant paper calendar (color coded for each family member, natch) is any indication, I might have some trouble. (People used to see it and say “I like paper better, too.” Now they just say “oh, wow.”)

But I digress.

I now have Mom using a pill organizer with big compartments labeled S M T W TH F S. Every visit, I refill the compartments for the days ahead. At first, I’d look at the pill compartments and half of them would be empty and the other half filled with Advil. She would insist that she hadn’t taken any more pills than were in the box, and I would say but Mom, they’re gone, so where else did they go? I wanted to hire an aide, but she asked for “one more chance to get it right.”

We’ve compromised. I now call her every day to say it’s time to take the pills in that day’s compartment. She puts the phone down to get some water, and says OK, now what? and I tell her what compartment to open, and she counts the pills and describes them and asks is that right? and I say yes (with no small relief), and she takes them. Every day she asks me why she has no pills in the empty compartments, and I tell her it’s because she already took those. Every day she asks what happens when she runs out, and I tell her I will be back to refill the compartments.

This is working, at least temporarily. Someday she will have to have an aide come in every day to be sure she has taken her meds.

You may be wondering how Dad does. Turns out for managing medications, it’s more important to be able to think than to see, so he’s actually OK on this front. He keeps his meds in a kitchen drawer. One bottle has tape around the top, and one has a rubber band around the middle, and one is unaltered. He knows which is which and how much to take from each bottle, and I refill the bottles when he’s running low.

There are workarounds for blindness, as awful as it is. This slow, relentless failing of the mind, though? All we have are temporary patches to a system that is doomed to fall apart completely.

Haircuts

I took my parents to get their hair cut.

Mom used to go to a salon in Hyannis, but missed several appointments and is no longer welcome there. She didn’t appreciate that not showing up meant loss of income to her stylist, who sent a very gracious note wishing Mom well and explaining that she couldn’t accommodate those losses anymore.

Unwilling to visit a less posh salon closer to home, Mom didn’t get her hair cut for almost a year after that (don’t look at me, this is while she still had her driver’s license). Meanwhile, Dad was seeing his regular person, Tammy, just 10 minutes away.

Getting Dad from place to place can be quite a production. Eighty-six and blind, he doesn’t make quick strides, and he’s very easily startled by changes underfoot. From car to building, he has cane in one hand, me in the other; I’ve got him on one arm and everything else over the other shoulder. If it’s raining, add an umbrella. We shuffle along. It’s nice when someone holds a door.

When I first brought Dad to Tammy after Mom stopped driving, she came right to the door, opened it wide and swept him away as smoothly as you please. She offered just the right guidance and spoke at just the right volume about just the right things. And my Dad sat right down in her chair and proceeded to tell her All About It. They had a great time and I was so happily unnecessary it brought tears to my eyes. He came home looking handsome and feeling great. I tipped her exorbitantly.

Mom, in desperation, now agreed to see Tammy as well. I scheduled a midday appointment to get them both taken care of and me back to Sandwich in time for Robin’s volleyball game. Win-win (and-hopefully-win).

They were getting dressed when I arrived to pick them up. Dad needed help with small, stiff shirt buttons. He was mad that he couldn’t do them. I said “Dad, maybe you need to start wearing rugby shirts!” I was not entirely serious. However he is now obsessed with the idea of a rugby shirt, and I know what to get him for Christmas.

Sad news at the salon: Tammy was out due to injury. Rather than call to reschedule, the salon people had figured other stylists could fill in. This made me nervous and a bit resentful. Tammy is the whole point of that place. It’s not so great without her.

Stylists were hanging around discussing lunch orders, but Dad’s designated stand-in wasn’t even in the building. We were told she was delayed due to “the weather” (light rain). We waited. When she arrived and was asked if she wanted something from the cafe, she said “no, I picked up something on the way.” I think she realized mid-sentence how that came across.

A mystery: The ladies’ room in this place has no dryer or towels, so the inside door handle is always wet. But there’s a roll of paper towels on a table ten feet down the hall.

More mysteries: There is a lot of weird shit for sale crammed into the waiting area. Here is a partial list:

  • cocktail forks
  • a blouse
  • an electric egg cooker
  • a book by Dr. Phil
  • scented candles
  • a pair of metallic sandals
  • orange silicone kitchen utensils
  • loose tea
  • a scarf
  • Christmas ornaments (or fall? are fall ornaments a thing?)
  • a sequined black sweatshirt
  • an elaborately framed print of Cavalry, by Octavio Ocampo, which is a pretty creepy work of art no matter how you frame it.

It’s like that game where you look at a random assortment of items on a tray, and then someone takes away the tray and you have to list as many of the items as you can remember.

I’m in a constant state of low-grade confusion and irritability in this place. Why aren’t the paper towels in the bathroom? Where does all this crap come from and who would buy it? Where is the lady who’s going to cut my Dad’s hair? What is that other lady doing to my mother and how soon will it be before Mom starts saying things we will all regret? Why is all of this taking so long?

An hour and a half later, Mom had something like a bowl cut. Dad’s was better. Mom was persuaded to buy expensive tea tree shampoo to treat something on her scalp that I suspect would not exist if she shampooed more often. She was instructed not to use the expensive tea tree shampoo every day. That is not going to be an issue.

I’d thought we might go to lunch, but I was so fried that I just brought them home, paid the bills, brought in the mail, the newspapers and the garbage bin, consolidated some of Dad’s medicines in bottles he has marked in various ways to know by touch what they are, and set up Mom’s medications for the week ahead.

What I took away: Mom’s 2015 appointment calendar, with about 8 pounds of paper scraps tucked into it that I will scan through to be sure don’t include any legal documents (the car registration is MIA, for one thing); three catalogs to call and get her off their mailing list, again.

Another visit done.

I did make it to Robin’s game: a victory that left her in a fabulous mood all evening.

Oh, her aching back (no, really)

My mother suffers substantially from back pain. Over the last decade she’s had two spinal fusion surgeries and a hip replacement. We didn’t know about her dementia before the surgeries, but looking back I know she was distinctly worse after each one. Her immediate recovery periods were always nightmarish, and each time seemed to diminish her permanently.

It was after one of those surgeries that my father confessed to me his worry that she hadn’t been paying the bills. (Blind, he couldn’t pay them or verify her payment of them on his own.) He handed me a briefcase with the entire contents of her desk in it and we sat up till the wee hours sorting through stuff. That’s when I took over the bill paying. Diagnosis followed not long after. It’s been almost 5 years now.

At any rate, the pain has been ramping up again over the past year. Nobody thinks she can undergo another surgery. She’s been seeing a physiologist at Spaulding, who today performed a radiofrequency ablation procedure which will, we hope, deaden the nerve that is hurting her. It would be so great if it worked. Mom’s concentration is flighty enough; the pain makes it so she can’t tolerate standing for long, and you just know she isn’t listening to anything that’s said half the time because she’s distracted by how much she hurts.

So, we desperately want this to succeed.

She arrived for her procedure this morning in the car of a kind volunteer who drove her from Chatham so that I wouldn’t have to do two round trips. I met her at the door, and we checked in. She was absolutely calm (thank you Ativan — and thank goodness she managed to save the last two little pills for today.) The doctor’s assistant wheeled her away, and I headed to the cafeteria to sit with a coffee and go through my “Mom & Dad” binder, culling out of date papers.

I had a nice visit with a friend who works there. We talked about the mixed pride and heartbreak of sending a kid to college. I told her all the Facebook pictures of friends’ new college students are breaking my heart, as I’m half wrecked because my eldest just started high school and she STILL LIVES IN MY HOUSE. I am risking my Spock-like reputation by confessing to these things, but I do.

I saw my daughters’ 2nd grade teacher, since retired, a really great person who lost her son to addiction last year and somehow still puts one foot in front of the other.

I saw the physical therapist who told me I had an attitude problem when I said it would be nice to be done with the the pain in my shoulder for which I went to see her for help some weeks ago. We ignored each other with no love lost. That remark of hers still makes me angry whenever I recall it. The day she said that, I should have cancelled all the rest of my appointments.

Her assistant passed by and was lovely, though.

So 45 minutes went quickly by, and then Mom was asking for me in the recovery room. Her procedure reportedly went well. She was reclining next to a pile of snack wrappers. She’d eaten all the Lorna Doones and half the Ritz peanut butter crackers and was struggling to unwrap the Fig Newtons. This was not a procedure she’d had to fast for, by the way. She asked me, “do you drive to an office somewhere for the program you’re on?” I had no idea what she meant. “For losing weight,” she said. “No Mom. I’m not on a program. I just quit eating bagels and muffins and cookies, and got serious about walking more often.” “Oh. Did you read about that in a magazine?” and so on, for the duration of the Fig Newtons. My 200 pound mother in a recliner shoving junk food in her face asking me how I lost 10 pounds.

I brought the car around, she was helped into it, and we headed home. I’d told Dad to expect us at about 11:00. When we got in, he was asleep, but he jumped up, shouting “IT’S ONLY 10:26!” “Hi, Dad. 10:56 I think.” Dad checks his talking watch. “Oh, 10:56. All right. Hello.” By this time Mom’s tired enough to assure him all went well and then go right to bed for a nap.

With Mom asleep, I have the opportunity to assess the status of the fridge and freezer. Peapod delivered groceries yesterday so they’re in good supply. Excellent supply, you could say. Mom had ordered four gallons of milk and 36 yogurts and 8 bags of croutons, among other things. Dad was concerned that he couldn’t distinguish the individual rice pudding cups from the individual yogurt cups. We determined that the rice pudding cups have a unique dimple on the bottom, solving that difficulty. One less thing. I don’t tell him about the rotten food that I’m hauling away. There’s nothing he can do about that.

Thus concluded today’s adventure. What I took away: 3 gallons of milk, 3 lbs chicken breast (Mom doesn’t cook but hasn’t stopped shopping as if she does), 3 bags frozen peas, 1 bag frozen corn, 1 loaf of raisin bread, 1 salad bowl. All this I can use. In other bags: 2 dozen frozen bananas that are too far gone even to use for banana bread, 4 bags of rotting baby carrots, one open can of pecan pieces, one open box of 5-year-old Fibre One cereal, one plastic container of an ancient unidentified granular substance, and 1 gray withered slice of pizza in a Ziploc bag that, thank God, stays closed. All this I throw away in public trash cans before I get home.

When I finally do get home, it’s 12:30, and I sit down to work. The summer lull is over and I have actual writing to do for actual money. I’d be in better shape to do that if it didn’t feel like I’ve done a full day’s work already.

A breakthrough, thanks to Starbucks.

Recently, Mom and I had some time to kill waiting for a prescription to be filled, so went to Stop & Shop to pick up something for dinner. Mom has her groceries delivered (hooray for PeaPod–though she does not love recent changes to your website, yo), and hadn’t been inside the grocery store for years. She was gobsmacked at how big the place is, and couldn’t manage walking the aisles. Happily, there is a Starbucks there as well, so we got coffee and sat down for a bit.

People familiar with LBD will know what I mean when I say that you never know who your loved one is going to be on any given day. On this day, I had Nice Mom. People walked by as we sat, and she smiled at them, and they smiled back. This struck her as amazing, that people seem so nice, and so happy to be smiled at. It was as if she’d never noticed that before.

Over the years I’ve learned not to talk about myself with her, nor about Aaron or any of my friends. We talk about Robin and Josie. About her granddaughters, she doesn’t twist things around, or criticize, or inject snobbish or haughty opinions. She just delights in their growth and accomplishments, or their humor, or any of their stories. So, as we sipped our coffees, I babbled on about how this or that recent event revealed some aspect of their personalities.

Last fall’s kitchen incident showcased Robin at her best. I told Mom the story from our perspective, as we came to her house thinking we were there for dinner and to fix the answering machine, but found a pretty impressive mess on arrival. I told her how scared we were, and how Josie was upset to the point of tears, and how Robin had taken care of her and handled things beautifully while I pieced together what had happened. Mom hadn’t known any of this.

I told her that Dad had been beside himself and fixated on getting her medicine adjusted as a “solution.” I reminded her that when she was diagnosed, I read everything I could find about LBD, but that there is no way for Dad to do that. I’ve told him things, but he can’t do his own research. Blindness has him quite literally in the dark. He seized on medication as the problem, but hadn’t quite come to terms yet with the progressiveness and incurability of her illness. Medicine is great at keeping some of the symptoms at bay. It won’t work forever.

I got a lot across in a very short time. Didn’t lecture, didn’t preach, didn’t rub her nose in it… just told her how it is for us, through this one incident.

She listened. Such a simple thing, but it almost never happens. She really listened. She didn’t get hostile, paranoid, defensive, or mean. She seemed, for the first time, to consider what the changes happening to her feel like for all of us. That they terrify her husband. That her grandchildren are not just aware, but coping, in their own ways. And–maybe–she came to appreciate a small fraction of what it means for me, too. That there is a real emotional cost to the increasingly managerial role I have taken in their lives. That I keep my phone within reach at all times. That there is never a day I pull into her driveway without a little nugget of fear in my gut. And, importantly, that I need her help, while she still can, to figure out the next step.

Then I listened. She told me what it feels like to have a malevolent voice in your head threatening gruesome violence and belittling your every attempt to overcome the fear of it. She told me how every day, the voice tells her it will kill her on the way to the mailbox, and every day, she tells it “fuck you” and goes to the mailbox anyway. She said that she doesn’t tell my Dad that it’s become a triumph of will just to get to the mailbox and back, but that she asks him to wait at the head of the driveway while she goes and to hug her when she gets back, and he does, and he doesn’t ask why, and doesn’t make her feel stupid for needing it. He just does it, because it’s what he can do.

It was good. Good to talk, good to hear, good to have coffee with my mother as if we were friends sharing parts of our lives. I’m going to need that Starbucks again.

Dementia update: hallucinations and loss of license.

Life would be a lot easier if Lewy Body Dementia were just a memory disorder. Unfortunately, it’s that and a whole lot more.

My mother suffers from auditory hallucinations. It is no use explaining to her that the voices she hears can’t possibly be real. They are real to her because she hears them, and she’s lost the ability to distinguish what makes sense from what doesn’t.

The voices are evil. They taunt her while she’s undressing, and when she’s using the bathroom. They threaten gruesome violence to her and my Dad. They threaten to kill me and my children. They tell her in detail how they’ll do these things. I’ve read most of Stephen King’s stories over the years, and the voices would give him a run for his money. And that’s just the stuff she tells me about.

I wonder where the horror comes from, and I imagine how different things would be for her if the voices were kind, positive and fun.

The inability to distinguish hallucination from reality is a problem. Even if she does sometimes grasp that the voices are just in her head, she still thinks her neighbors are bad people. One’s been in jail for years, another’s a drunk whose husband has left her, etc., etc., none of it true. She thinks one neighbor’s son “killed his gay lover in their backyard.” In reality, he’s studying to be a priest. Not that those things are mutually exclusive, but near as I can tell, her neighbors are just people.

Sometimes, she calls the police about the things the voices say. This has consequences. One morning recently, she “heard” a federal agent driving around with a megaphone, calling all law-abiding residents to a meeting at the police station to discuss what to do about people from the Black Lives Matter movement who have been terrorizing the neighborhood. She told my Dad, who said “it isn’t real! Stay home! Don’t go to the police station!”

So she went to the police station. Naturally none of her neighbors was there. Still, she went in and told an officer that “Black Lives Matter people are threatening to teach the neighborhood a lesson.” When the officer later called me to discuss her visit, he said that she then left in a paranoid hurry because “they probably know I’m here.” He followed her home to see that she was all right.

He interviewed neighbors, reviewed previous incident reports, drew some conclusions. Then he went back and filed a report with the Department of Motor Vehicles that resulted in my mother’s driver’s license having to be surrendered. She got a letter from the DMV saying she should send it in voluntarily within 20 days, or the police would take it.

I have no quarrel whatsoever with the outcome, but mixed feelings about how it came about. The letter was a complete surprise to my parents, and to my mind, it would have been more respectful of the officer not to have done it behind their backs. I asked Officer Vigilant how her driving was as he followed her home, and he said “Fine. Quite good, actually,” so his decision was entirely based on her mental state, which is interesting.

She was mostly a bad driver, though. Dementia just meant that in addition to pulling out in front of people and doing 50 mph in the passing lane, she’d forget where she was going or where she’d been, and maybe get lost. It’s a good idea all round to have her off the road.

She did call her attorney, outraged, to see if anything could be done. The attorney called her dementia doctor, who said no, he was not willing to object in any way to the revocation of her license. Patients do get angry with him for that, he told us at her next visit, but stopping driving is the right thing to do. Then he increased her dosage of quetiapine again, which should keep her racist, paranoid hallucinations away a while longer. I hope it works.

Mom’s not being able to drive changes her life less than you might imagine. She uses a grocery delivery service and rarely went out anymore, anyway. For me, it means more frequent visits, which were already happening for various reasons, and driving her and Dad to their doctors’ appointments, which I was mostly doing anyway.

Hopefully, it is also fueling motivation to look into assisted living. That’s becoming a battle, of which more later.

In which I confirm my existence

Well, six months went by in a flash.

All is mostly well.

I’d been writing here to document my “sandwich generation” experience, sharing the humor as well as the trials and tribulations that come with having a parent with dementia. While things are still humorous (it’s life!) we did have some more on the trials and tribulations end of the scale this fall.

For one thing, there was a mishap in Mom’s kitchen. For reasons unknown, she got up at 4:30 one Thursday morning and put a plastic tray on the stove. Dad awoke to the smoke detector half an hour later. They got the stove turned off and the smoke aired out. Mom went back to bed.

Dad called her neurologist’s office, thinking that surely her medication could be adjusted, or there would be something else the doctor could do that would prevent this ever happening again. (I don’t think he’s quite come to terms with the fact that things are going to get worse.) They played phone tag that day and the next, and he became increasingly frustrated. Friday evening he called me in a total fit because he couldn’t get the answering machine to work. I said I’d bring the girls over for dinner and fix it.

We arrived with pizza in hand to find the kitchen and some of the rest of the house coated with greasy black soot. He’d told me nothing about the kitchen incident — I thought I was going to solve the answering machine problem. I would never have brought the girls, let alone food, into that setting had I known.

Josie’s eyes got huge and filled with tears. “I don’t like this, Mommy. There is something wrong here and I’m scared.” Robin went instantly into “cope” mode, in which she is totally amazing. She comforted her sister, found a relatively clean place for us to eat, loaded and ran the dishwasher.

Meanwhile I pieced together the story from Dad, and went in to the bedroom to talk to Mom about it. “Mom,” I said. “You had a lot of smoke in the kitchen, I see.”

Her response? “Really? Wow!” And, later, “am I supposed to be feeling somehow responsible for this?” (Days later, to me, “you know, your father hasn’t been himself lately. I think he had something to do with what happened in the kitchen.” If by that you mean saving things from being much worse, Mom, then yes. Yes, he did.)

Long, long story short: the house was cleaned by specially trained professionals in a process that took two weeks. The stove could not be salvaged. Insurance company hassles were minimal, but not zero.

Also: my mother has been admonished by her doctor not to consume a bottle of Chardonnay along with her medication in the evenings. This falls in the category of “things you don’t think you’d have to say out loud,” but evidently it was necessary. She’s been pretty good about it since, as far as I know.

Rick and I are doing our utmost to convince them to sell their house and move to an assisted living community. Stay tuned.