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.

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.

Baselines

A friend joked with her forgetful mother on Facebook. She said, “how will we know it’s Alzheimer’s, Mom, if this is the baseline? LOL!” Good-natured family banter ensued.

I thought about my own mother, and her diagnosis of Lewy Body Dementia. Mom’s diagnosis was an aha! moment. A lot of things made sense in retrospect. Now I know why she was so extraordinarily hostile and disoriented after surgeries. Now I understand why she insists she hears neighbors talking about her, and says such hateful things about them.

But what about the behaviors that have always been? Rick and I shake our heads over this sometimes. How could we know it’s dementia, if this is the baseline? Our mother has always been kind of dopey when it comes to anything managerial. She’s always been self-centered and lazy. She’s never been great with the truth. She’s oddly dismissive of Rick to this day — he doesn’t even take it personally anymore. She’s always said mean things about neighbors, and been critical of our friends to the point of embarrassing rudeness. (These days I just tell people ahead of time to be prepared. When it happens, they sort of blink in astonishment, then remember I’d warned them, and don’t experience it as a direct hit. Later I say, “told ya.”)

Maybe — especially if you can’t imagine saying such things about your own mother, or if your mother has passed on and you’d give anything for more time together — you’re thinking I’m being too hard on her. Maybe you’ve met Mom and think she’s a lovely person, which she can certainly be. There are people she doesn’t cut down behind their backs. I might even be one of them. (When people say to her “you’re lucky to have such a great daughter so close by,” she says “It’s not luck. It’s management.”)

I try not to be hard on my mother for the hollow satisfaction of it, but I don’t feel inclined to make excuses for her, either. She’s got that part covered. A very indulgent therapist in the 1980s encouraged her to “set aside feelings of inadequacy and guilt.” At the time, I would have preferred she focus on being less inadequate and guilty, but what did I know. I was a child, and some of her inadequacy and guilt affected me in ways I am just beginning to understand, as a mother of daughters myself.

My daughters’ childhoods are several orders of magnitude happier than mine was. Maybe mine was several orders of magnitude happier than my mother’s, and maybe with more insight, I’d achieve a gentler mindset. As truth-challenged as she is, there’s no point in asking for it. I piece together clues as they come.

Sometimes, when the clues make me realize, deduce or remember things about my childhood, I am furious anew. I am nowhere near being able to write about what these things are. But what do people do, with anger at their mothers? When they realize, as parents themselves, how much power there is in that role? When they look back on parts of their childhoods and think, how could you. How could you?

Probably, they see therapists.

I am always heartened to see women hanging out with their moms, each enjoying the other’s company. It shows that it’s possible. It means everything to me that my daughters and I should have that when they are grown women as well. I tell them I’m not perfect and try to own and improve on my shortcomings (except for swearing. I can’t seem to clear that particular hurdle). I include in our “prayers” every night a request to the Universe for help being a good mother to them, because they deserve the best mother I can be. They deserve it.

Only my mother knows whether she was the best mother she could be. I seem to have turned out all right, even if sometimes I feel broken (and I don’t imagine many people get through this life without feeling that way sometimes). I don’t hate her for her limitations, but I don’t have to respect her for how she’s addressed them, either.

And now, it’s hard to know where her personality leaves off and Lewy Body Dementia begins, which is both funny and sad.

Visiting Mom and Dad

I spend a few hours each week at my parents’ house, usually on Mondays. (For someone with a memory disorder, routine is key.) This week I went on Tuesday, because Mom and Dad had back-to-back dentist appointments on Monday. All I can say about that, folks, is FLOSS. FLOSS WHILE YOU’RE YOUNG. The more you “hate the dentist,” the more you should care about flossing. Go floss. I’ll wait.

OK? OK.

When I visit, I bring my parents lunch, pick up prescriptions, pay the bills, change light bulbs and batteries, and fix whatever random things needs fixing. (It’s a mystery to me why there is almost always at least one light bulb or battery that needs replacing. In decades of home ownership, I don’t think I’ve replaced as many bulbs and batteries as I have since I started doing it at my parents’ house.) And, of course, I hear what’s been going on with them, and help where I can.

Mom’s been having auditory hallucinations again — she is convinced that the next door neighbor’s son is watching her every move, and she hears him narrate everything she does. She says he killed his “gay lover” in the backyard, and now he’s going to kill her and my Dad. She says he watches her with stolen binoculars. In real life, this is a nice kid who just graduated from college and wants to be a priest. Mom has, on occasion, called the police to report his evil plans. The police check in with the neighbor. The neighbor calls me, understandably beside herself. I try to calm everyone down.

The hallucinations are so real to Mom that she does not feel safe on that side of the house. She relates them as if they are real: “he said,” not “I heard him say.” When I point out that he can’t see through walls, and there’s no way she would be able to hear him speak, she can perceive that it’s her brain doing this to her. But, it still does it to her. Her psychiatrist has instructed her to double her dose of the medicine that’s supposed to keep the hallucinations at bay.

In the meantime, she said, she came to the kitchen this morning and saw a skillet in the sink that had obviously been used to cook scrambled eggs. She said she had no memory of having cooked or eaten the eggs — the whole experience was a blank. “Well,” said Dad,”you should probably add that last night also included you drinking an entire bottle of Kendall Jackson Chardonnay and singing along to Burt Bacharach’s Best during the PBS on-air fundraiser.”

So, yeah. There’s that. I hadn’t the heart to tell them that based on the empty carton in the trash, the sell-by date on those eggs was in February. The damage, if there was any, had been done.

Most weeks, I end up bringing something home from my parents’ house. This has become kind of the fun part — you never know what it might be (especially if I’m making progress cleaning out the kitchen). For a long time, it was garden hose. My Dad had an astonishing amount of garden hose stored who knows where, which he parceled out to me in 25′ lengths over a period of about 6 months. Aaron and I were pleased at first, because our own hoses were wearing out, and Dad’s arrived just in time to save us buying new ones. As more hose appeared week after week after week, we went from delighted to baffled to mildly inconvenienced to actively trying to pawn it off on our lovely neighbors, who are enthusiastic gardeners who know other enthusiastic gardeners and seem to find homes for such things.

There have also been countless little cardboard boxes filled with tiny things about which Dad says, hopefully, “maybe Aaron can use these?” Fittings and connectors and adapters and washers and bearings and screws… the detritus of a lifetime’s puttering around a workbench. Aaron, fortunately, is just the guy to sort through all this stuff and put a lot of it to use. To say he’s handy is the understatement of the century. To say he’s frugal is also inadequate. Best, though, and what makes me proudest to be married to him, is that he understands. He makes a point to tell Dad when one of the little thingamajigs has served some critical function without which we would all have been lost for sure. This makes my Dad very, very happy. We are making those moments happen whenever we can.

Today’s haul included a Canon printer/scanner/fax machine, which Mom says was “broken.” As near as I can tell, whenever Mom’s computer stuff doesn’t work for any reason, her “computer guy” advises her to buy new stuff, and she does. All I ask is that she not give her computer guy the old stuff, because often there is nothing whatsoever wrong with it. I fully expect the Canon to be humming away productively in our home office as soon as I plug it in. That would be cool.

I also brought home open containers of All Bran cereal from the year 2000, instant coffee from 2009, and Quaker oats from 2003. It was Josie’s turn to take out the compost, and she was not thrilled.

Orange you glad I didn’t say banana?

(I’m not going to do a “hello, world” post. Best to just jump in. I am picking up a few years after my first blog left off. Check that out if you like.)

Sunday night at 8:30, I got a call from my mother. “Would you bring me some orange juice when you come tomorrow?” “Sure,” I said, “see you then.”

I did the usual evening things, and went to bed about 10:30. At 11:05, my phone buzzed on my nightstand: call from Mom and Dad. It’s not like them to phone so late, so I was instantly apprehensive. “Hello?” “Leslie, it’s Mum. I’m calling to see if you would bring some orange juice when you come tomorrow?” “Sure,” I said, “see you then.”

Mom has Lewy Body Dementia (LBD). It’s the second most prevalent type of dementia, after Alzheimer’s, and before Parkinson’s (with which it is often confused, because the symptoms overlap quite a bit). She was diagnosed last summer, and is in very early stages, with medicine holding off most symptoms for the time being. But things are going to get a lot worse, and we’re just starting to get used to the idea.

I’ll take a late, repeat call for orange juice cheerfully, any night of the week… because I’ve come to realize that the “new normal” includes a constant low-level dread of what a late night call will someday entail.