Caretaking 101

Just back from spending 10 days with Mom and Dad, and I feel like I have come through the fire (of hell? of pottery firing? where does that saying come from, anyway?) and am relatively unscathed. I found I could face some of my worst fears in helping care for my mom, namely a public incident of incontinence -- o.k., it was in a park, but still -- and helping her with personal care like clipping nails and hair washing.

It's ridiculous, but I have a phobia about nails. Long nails. They're dangerous, they are unattractive (to my eyes) and they harbor bacteria and dead skin, and they turn an ugly yellow when dirty. But the real trigger was helping my own mom, about a decade ago, clip my grandmother's ails. By then, Grandmother was frail and querulous from various ailments and driving Mom crazy. I tried to help, but everything about my Grandmother's surroundings, from the dusty, rickety family pictures, cluttered pill bottles, bobby pins and other ephemera under her sink, and especially her long, horned nails, was frightening and utterly depressing. (I also have a phobia about clutter, perhaps also due to those years, but we'll get to that later.)

Anyway. I was trying to clip those nails, and they were so brittle, I ended up tearing one and making Grandmother's finger bleed. Can't remember much more except the guilt and revulsion of that moment.

I did my mom's, though, and it wasn't that bad. And let me tell you, I felt a great relief after doing it, seeing her clean hands. The incontinence episode wasn't pleasant, but it was strangely a little funny; we were on a nature walk, and I ducked behind a fallen palm tree, having to pee urgently. About 1/2 mile later, Mom tries the same thing -- but this time we were at a busier juncture on the path, next to a smaller palm tree and with about a half-dozen people not far behind us. I quickly hustled her away as I saw her unbuckling her pants, but whoops! too late. Luckily Dad keeps a change of clothes in the car.

Home for the holidays

I have been dreading this post, but then, I'm also dreading the holidays. I'm not sure what I'll find when we get to my parents' -- I haven't seen mom in four months, and my dad says she's sinking quickly. I also feel pressure to make this a nice holiday, possibly our last together, and I don't think my parents have been able to prepare, understandably. I'll have about five days to throw a Christmas together.

Part of me says screw it. I'll never be able to replicate the over-the-top hols of my youth. We started early Christmas Eve with candlelight mass, then on to my Meemom's house (Dad's mom), then Grandmother's house. The next morning, after opening gifts in my own elaborately decorated home and choosing from literally dozens of homemade cookies for breakfast, on to my Aunt June's house for a huge Roast Beast Feast. The number of gifts I received was obscene.

My kids are actually much more in tune with the big family scene for Chinese New Year than Christmas -- I've lost touch with many of my cousins, and grandparents are gone. I'm not religious, though am tempted to slide into Christmas Eve mass this year. (This would probably induce a public meltdown, though.) As we're leaving in a few days, I didn't even bother with a tree, which distressed my kids somewhat. Compensated by laying out extra bucks for gifts, which is just wrong, I know.

Feeling wrenched also because DeeDee, who writes the other "Mom's Dementia" blog, lost her mother a week ago. She was 63.

Diagnosis confusion, continued

So, to continue -- because Mom was so unresponsive to the various drugs her doctor tried, she now thinks she may have PSD. At least, that's what I'm getting via my Dad. I can't manage to actually talk to the doctor, so I don't completely understand this potential diagnosis.

Either way, the existing neurologist is shifting my mom's case -- without giving us a referral other than "find a Mayo Clinic or metro-area doc who sees these kinds of things" so we were left scrambling to find a new doc. With the help of Lord Google and a neurologist friend, I located a specialist in PSP who is only about an hour or so of a drive from me. So Mom will come back with me in February, and then see this doctor, and then have whatever else test may come along, and stay with me for a while, to give my dad a break.

How I will cope with her and my two primary-school-age kids, I do not know. I certainly can't leave her alone. I'm concerned about her going up or down stairs to sleep and bathe. Plus according to my dad, she is deteriorating further mentally -- he found her standing in the shower, just waiting there, not knowing quite what to do.

What if it's not FLD?

This just in: My mom's doctor now thinks she may have PSP - progressive supranuclear palsy. She simply hasn't responded well to any of the drugs she has been on, particularly Namenda and Exelon. In fact, they made her far more befuddled. I wonder, particularly as so many of the other symptoms, like aphasia and incontinence, are very much FLD.

At first, we were thrilled, thinking that, perhaps, here was a diagnosis far more bearable, treatable and easier than FLD. But no...PSP actually may result in a total loss of speech and mobility far earlier, though she will never have a total dementia, which is good. On the other hand, if she's immobile, wouldn't that be, to her, far worse? To completely realize the situation?

The upshot is her doctor wants someone more familiar with PSP to look at her, and that means somebody at a place like the Mayo Clinic or at least in a major metropolitan area. And guess who lives in a metro area? Me. So mom may be moving in with me for a while.

Details to come as I digest them. Meanwhile, has anyone else come to FLD after a misdiagnosis? Something I'm beginning to understand is that there may not be a black-and-white diagnosis -- it may in fact be a little of this, a little of that.

Another dietary factor study

Same conclusion. HMMMMM.

Dietary patterns and Alzheimer's

I'm still researching the possible link between consuming animal products and dementia. I did find this recent study about Alzheimer's. It supports other info I have come across suggesting that consuming large amounts of protein could contribute to dementia. I don't know how rigorous these studies are, however -- I haven't gone over the methods and numbers carefully. I'm definitely going to keep pursuing; there's enough here to give me pause.

To dream, perchance to live

I just woke up from a dream in which Mom was the old Mom, the pre-FLD Mom who was the most capable person on the planet. In the dream, I was moving into a home that I had pre-inherited from my parents -- or maybe they were moving lots of their stuff after downsizing into my home, which has already happened -- and the rooms were crowded and cluttered.

Typically ridiculously hard-working, Mom helped me clean them all out, then swiped on a coat of paint for good measure.

To say that it was hard to wake up is an understatement. Not that I need the cleaning help, because as everyone knows, I just keep my house basically empty so I don't have to clean much. It's just that I was complaining about the mess, and she was rolling her eyes, and then she jumped to make me feel better. My Dad does that often, and my husband sometimes, too (unless the demand is completely unreasonable, and it often is, I'll admit) -- but nobody to such a degree as Mom.

One episode comes to mind. Mood rings were cool in my fifth-grade class. One day, everyone had them -- except for me. Mom took me to the drugstore after a minimum of whining on my part -- no rings. She went one further and took me to the mall, where we successfully purchased the meaningful piece of junk. She was also famous for buying, at the last minute, something I was coveting on a shopping trip. Or I couldn't decide between two things, and she'd buy me both. "Your mom is a sucker," she'd say. Or, "It's a treat from your mommy. I love you, sweetheart."

I can see this legacy in the way I spoil my own kids, and I'm not altogether sure it's a bad thing.

Coping, continued

I'm sorry my posts have been so sporadic. I have literally been physically sick since September 11 (I remember the date exactly, for many obvious reasons) with bronchitis, a soupcon of flu, a sprinkling of gastroenteritis, and now a bad sinus infection. I think the emotional issues that I wrote about last week are feuling the fire, so to speak, as feeling generally run-down makes me weepy, which makes me feel sicker, and so on. I am trying with all my might to finish up a huge work project, and help my kids cope with the changes in their lives.

Not to mention that I still shamefully feel a good deal of self-pity; as my mom once said, no matter how old you are, when you're sick you want your mother. And that's not an option; I'm completely on my own. My dad couldn't help right now, either.

Anyway, at my most recent doctor's visit for yet another course of antiobiotics, I mentioned all this to her, and then burst into tears for the second time that week (the first was at a parent-teacher conference). Scary things happened; I couldn't breathe, and my focus went in and out, if you know what I mean.

The doctor was properly alarmed, and I said I had been thinking about taking an SSRI for the short-term. She suggested Lexapro. Oh, the irony -- my mother is the one who needs and somehow hasn't been prescribed SSRIs, and here I am, getting a free sample.

I do think I'll try it when I'm feeling better overall, because I need to get over this hump and find a way to cope with the rigors of daily life, because the months ahead will only get tougher. And I will seek out that local caregivers support group. Thanks to all of you who have e-mailed and commented. I feel like I already have a support group. Plus my friends call; the neighbor brought chicken soup; three women have offered to pick up my kids from school, if needed. These nice things make all the difference, don't they?

If anyone has had any positive or negative experiences with SSRIs for yourself, as you go through this, I'd love to hear more.

And how are *you* doing?

I have been noticing some significant changes in my persona since this horror began. At first, I thought it was for the better, strangely. I felt calmer and began living more in the moment -- when the almost-worst-thing in the world happens, you start to wake up a bit. I did shift my priorities, too. Family first, and health. And oh, yeah, since I may get dementia, too, FLD having some hereditary link, I'd better figure out fast what I wanted to do with the rest of my life. This gave me more focus and determination.

Now things are starting to fray. I feel very, very close to the edge many days. Say the wrong thing and I'm likely to shout or break into tears, as my kids have discovered (and quite a few rude drivers). There are other stressors on top of Mom, including my daughter's hearing problem, my own month-long bout with bad bronchitis, and my husband having to go out of state to work, there being no suitable job around here at the moment.

To some extent, I feel entitled to a breakdown. I'm thinking perhaps I should start some kind of therapy, or a help group at the least, and I'm considering some kind of medical intervention, too. It's beyond yoga. I"m starting to worry that it's affecting my work, too -- I'm more careless, and I worry constantly that I'll snap and, say, tell someone off, or just walk out.

As a matter of fact, I'm having difficulty typing this. Going to take a break. And I"m not even the main caretaker for my mom! How are you all doing? How do you cope?

Studies linking nutrition and FLD?

Does anyone know of any studies involving nutrition and FLD? I read The China Study, a book about the benefits of going vegan, and while it sounds extreme, the results are undeniable. There has been some link between diet and Alzheimers, so I'm curious, and will investigate and report back.

When it rains, it pours

We just found out last week that one of my girls has significant hearing loss in both ears -- bad enough to require hearing aids. I know there is so much worse my kid could be going through, but why this, and why now? We all deserve a break, not more sorrow. Sorry to whine, but enough already. As bad as it all is with my mom, this has now taken first place on the worry list, as the kid is fairly traumatized about getting the aids (even in pink). My other daughter has also been acting out a bit in school; nothing really bad, but her attention wanders just a bit too much. I don't think it has anything to do with Mom's illness, even though they were as close as it's possible to be when my daughter was younger. I mean, she knows about Nana's illness, but I don't think it's weighing on her. I guess I'd better have a talk with her, though, right?

Birthday blues

It was my birthday a few days ago, and I'm pretty sure my Mom forgot about it. I called her the day before to let her know we would be out of town and that I probably would not have my cell, and though she chimed in quickly with a "happy birthday," I doubt she would have called. I remember this summer on the twins' birthday, which she used to live for (see elaborate homemade cupcakes she made just a year prior), I finally called her in the afternoon to see if she wanted to talk to the kids. It's shocking, in a way, because family holidays were everything to her. At the same time, it's personally a little hurtful. Irrational, I know. But still hurtful.

One step forward, twelve back

Things were upbeat at the end of August -- Mom was actually doing quite a bit better after stopping the Exelon patch. The patch somehow made some of her symptoms worse, particularly social withdrawal and some of the compulsive behavior (staring, cleaning). Her doctor was talking about starting her on an SSRI, for which I'm eager; I've heard many FLD patients do much better on these drugs, and I'm not sure why they haven't put her on one yet.

Anyway. Saturday she fell and broke her arm. It's her second bad fall; the first, about a year and a half ago, broke her wrist in three places and brought on her major FLD symptoms. (Maybe the anesthesia - ? I hear plenty of folks are diagnosed after a trauma. Did anyone else have this experience?). She's depressed now, and upset, and so is Dad, of course. Both times she fell off her bike. Why she was again on a bike this time, I do not know. Perhaps she seemed so much more like her old self that she and Dad wanted to get out and enjoy life again as they used too. It's just too damn hard to admit to ourselves that those days are gone.

Dementia toll climbs

On MSNBC.com today: Dementia toll climbs to 35 million worldwide; number is some 10 percent higher than predictions. Hopefully this will spur on some more research into causes of dementia diseases. I have my own suspicions, upon which I will elaborate soon. Article did say obesity and diabetes are contributing factors. We are in big trouble in this country as the population ages, that's for sure.

The mourning starts early

My parents finally succeeded in selling our ancestral home, which used to be their primary residence in the Northeast. This was wrenching when it happened -- another piece of my youth gone -- but financially necessary, and quite a load off Dad's mind.

They collapsed their stuff into my house, which was just as wrenching, as there are now bits of pieces of their lives spilling into all my empty spaces. (I despise clutter. I don't like stuff; I keep very, very few things for sentimental reasons; I don't do storage. More on this draconian and, I realize, bizarre policy later.)

Some spaces were just too full, and my dad asked me to help my mom weed out about a third of her clothing, much of which was faded, stained, or out of date.

Now. While I enjoy cleaning out a closet as much as just about anything else in life (out with the old, in with the new!), this time, it felt uncomfortably like the post-funeral dispensing of the deceased's items that my family ritually endures. I don't know how your family does it, but in mine, almost everything is handed over to someone else, even shoes -- my Aunt June had about a dozen spectacular leather stilletos in every color of a peacock's tail.

First, the thought of pudgy Aunt June, whom I remember as perenially wearing polyester shorts and stretchy cotton houseslippers, squeezing her feet into these roach-crushers was rather bizarre. That fox stole over there, the veiled pillbox hat -- are we talking about the same person? Plus, I was too freaked out by her death, the careful display of a dead person's shoes -- "Take what you want!" -- and too young, at 12, to appreciate their beauty. But I regret to this day not taking the robin's-egg blue pair.

My mother didn't like the sorting and purging, either; not one bit. To her, I imagine it represented yet more intrusion into her choices and her life. We're her family and she loves us, but let's face it -- she's now basically under our control. And there really wasn't enough room in the closet for 20 years of accumulated clothing.

Plus, many of the clothes were too small due to her illness-related sugar addiction. We're vain ladies who are into clothes, so this stung. I tried to inject some humor by laughing at the padded shoulders we wore in the '80s -- nothing doing. She was particularly mute and withdrawn that day.

At the end of the ordeal, I suggested that we go upstairs to clip and paint her nails, as she's been having difficulty handling this herself . She snapped, "Leave me alone." I was actually glad to see her show some emotion, any emotion; while sad at the same time to be the instrument of her despair, and to be anticipating doing this again, alone, maybe in as soon as a few years.

I imagine this scenario isn't much different for others who have loved ones with a terminal diagnosis, but for FLD patients it just seems to start much earlier. They're still with us, and yet, not.

Making the most of the time we have left

I was talking with my mom's cousin last week, when she mentioned she'd be visiting my parents (in Florida, where they live, regretfully, now far from me) this fall. I'd be going down there for a long visit at Christmas, I said.

"We have to visit as much as we can, don't we," she said, sympathetically.

It hit me, then, that we really do need to do that. Faced with the decline we saw this summer, it's become painfully clear that there may not be many days left when Mom can enjoy herself, say, on a family outing. My folks already cancelled their yearly road trip to Maine because my dad just couldn't handle the driving and related caretaking himself, and I couldn't accompany them. Mom's already started to suffer from incontinence, and forgets to get herself ready before a trip, so there are accidents and so forth.

So today I told my boss at my biggest client (an international non-profit) that I would probably need to scale back my workload come December. I'll visit again during school break in spring, I and whenever else I can fit in some time. The out-of-state factor adds a difficult twist, because my kids are still in primary school.

This episode was painful both professionally and financially -- not least because I started sobbing in the middle of relating the situation. It's just too hard talking about it, still. What will life hold in six months for us all?

Temper, temper

Returned from a month's hiatus -- a blissfully dementia-free trip to a land far, far away -- to find things in a terrible state. Mom has declined, which is no surprise, but is a disappointment; I'd heard that patients plateaued for a while, and was hoping her symptoms would not change this summer. And my dad is back to some kind of frenetic controlling state, in which he tries to right everything that's wrong with the world, with me, and with Mom. This takes the form of constant reminding, haranguing or criticizing. The world remains mute and unaffected, but I'm pissed off royally and so is Mom.

Thing is, it's hard to keep quiet and not criticize her about this and that, and I imagine it's hard if you're living with the patient 24/7, as he is. Her habits are maddening. There's the staring, hanging over your shoulder when you're, say, making a sandwich or a phone call. There's the mad rush to eat, often starting while standing up. (What is it with the craving for food, by the way? Does anyone know? Must ask the doc.) There's doing the dishes, cup by cup, with a paper towel, or picking up crumbs from the floor, one by one, rather than fetching the broom.

I think we're also just enraged that this is happened, and we have no outlet for the anger. It just makes no sense. Obviously. But we are the careful kind, our family. Insured to the hilt, getting flu shots and regular dental checkups. We never saw this coming.

But after a while, I let it go. As long as she's occupied and seemingly content, I don't really care if she wanders around the kitchen for an hour, and if I have to ask her the same question three times before a response. When it's quiet in the house, and we're alone or just with the kids, I find it easier to relate to her. I try to quiet down, to dig down to her level, and to make eye contact, and it helps. But add my father, and it's a recipe for combustion.

Hiatus

I will be on hiatus for about a month -- we are taking a magnificent trip overseas. The decision to go was based in part on mom's diagnosis. Life is short. Seize the day. It sounds trite, or did, until now.

Dumbed down

Mom is on a cocktail of drugs for a variety of symptoms: Aricept, supposedly to help her short-term memory issues; and now Namenda, which is supposed to slow her decline in thinking and behavior, whatever that means.

The docs didn't give her SSRI's (serotonin re-uptake inhibitors), which are commonly prescribe for FLD, because they don't think her disease is related to depression, or that she shows depression symptoms. I'm not sure if I disagree, because her decline seems to follow a progression since the death of my grandmother; at first, she grieved. Then she was at loose ends as to what to do with all her spare time, as my grandmother demanded her every spare second.

Then she was busy establishing her vacation home with my Dad. Once that was finished, and quiet reigned...that's when all of this started. As if the silence opened a door.

I suppose the drugs are working; she has fewer inappropriate verbal outbreaks. But at the same time, they seem to have rendered her catatonic. I used to be able to get some kind of response from her -- maybe with some coaxing, but I could get a response, or a laugh. Now she responds mainly to the kids and to our cats, often with a very strange, hoarse laugh I don't recognize.

When I dropped an open container of salt on the kitchen floor last week, with predictable results, she didn't respond at all to my scream and loud wail of despair. Before, she would have laughed. "You idiot!" and then come over to help. Now, nothing. I do think she was amused, somewhere inside, but she didn't show it. Even when I threw a pinch over my left shoulder for good measure.

Same thing when the kids and I spied a big bug in the bathroom, and exited en masse, screaming like the Devil was nipping at our hindquarters. No verbal response. But I think she chuckled internally. Maybe I'm making it up, projecting my own memories on to this shell of a person. But I don't think so. Not yet.

What do we tell the kids?

A friend said something priceless to me about reading this blog: "Just reading about her made me want to be a better mother, to cherish every minute I have with [my son] and count it as a blessing and to have yet more patience with him."

First, I'm thrilled that these writings have any kind of effect on anyone. But more importantly, it made me realize that this whole mess has actually made me a better mother, too. What if I've inherited this awful disease, and it kicks in soon? I'm 44 already. I've heard stories about folks coming down with it at 48, abominably.

So I've tended more to the little things since getting the awful news about my mom. I'm more patient. I read to the kids, something I was too lazy to do after they gained a certain level of competency. I'm a better daughter, too; I call my mom more often; I try to humor my dad's OCD.


A week or two ago I arrived at the point at which I started considering how to tell my own primary-school-age kids about Mom's illness. My partner wanted to let it ride, as is his common response to many things in life, but I didn't think it quite fair. I'm taking advantage of knowing by getting every last hug in, by showering my mom with treats. Why should my kids be denied any chance to remember Nana as they knew her?


One of my daughters in particular was very attached to Mom, almost bizarrely so -- would coo and smile in her presence and, later, have hysterics when Mom left. It made me think she imprinted to her as an infant, or whatever the heck they call it -- Mom sure held the kid enough. They're not as close now; my parents moved down south and the kids have many pursuits competing for their attention. But still, I wondered how she would react.

In the end, I wimped out a little. "Nana's sick," I said. "Haven't you noticed she's not really herself lately? And you know how she used to steal your candy? That's because her brain isn't working quite right." I stopped short of talking about the death sentence frontal lobe dementia really is. One kid took it quite well; the other, the close one, was upset, but only for a few minutes.

Which made me upset. I know they're too young to appreciate the gravity of what's going down, but I hope they will realize, someday, the preciousness of what they have lost. I don't dwell on it, though. I just nudge them over for one extra hug when Nana comes to visit.

Rising to the occasion

It has been interesting to see how various parties have responded to Mom's illness, which I liken in its impact to a hand grenade thrown into the middle of a church picnic.

Take my father. He is as controlling as it is possible to be. Always has been. Perfectionist, pin-neat, pays his bills the same day he gets them (even in the days before online banking). When he wanted to stop smoking, he threw the pack into the trash can, and that was it. End of story.

Perhaps because of his own steely willpower, life's messes, like illness or some of the more unsavory human weaknesses and oddities (addictions; greed; laziness; overweight) have always repulsed him. Particularly the illness part. As a child, I was admonished to "shake off" illness or given some horrible holistic cough syrupy stuff to swallow, which has been proven toxic decades later. He was hard pressed to visit his own mother as she lay, riddled senseless with strokes, for years at a nursing home. When we did go, he would hang back in the room, while I spoke to her, stroking her hand and trying to find out how much of her was left inside.

So when this dementia crap came down the pike, he basically went ballistic. Mom breaks things; she had a spate of leaving her purse at this or that restaurant; her dining habits have deteriorated. At first, he responded by trying to keep it all reigned in, an impossibility. He raged and roamed around, a maniac. At one point, he had us all searching their vacation home for a small plastic shower hook that had gone missing. Stuff like that.

But now, he's somehow stopping fighting it. Not only has he taken on an incredible load, like all of the driving, much of the food prep, and all of the household management -- he's there with the little things. Driving to the bigbox to pick up a pack of Depends. Buttering her bread, and making sure it gets to her mouth.

He's also finally attended to his health; losing weight, eating better. It's all rather staggering, and his behavior has been a big factor in keeping me sane for the past couple of months.

It also shows that people can change, no matter how late in life, and in the most mysterious and wonderful ways.

Adventures in the Big City

I took Mom to New York Saturday for my cousin's baby shower. Yes, it involved a drive through hellish traffic and a 25-minute subway ride each way to a destination fairly foreign to me -- Brooklyn! -- but it was a smallish affair, outdoors, and she wanted to go so badly I decided we would go for it. I mean, I wanted to go, too, but anything to do with babies, she's all over like white on rice.

Though Mom can get confused in crowds, particularly at restaurants, her behavior hasn't crossed over into outlandish or belligerent. She has, however, started to suffer from incontinence, making a city trip particularly challenging. I made sure we peed at every opportunity, from the car park to the porta-potty at the shower's outdoor location. She has trouble affixing her Safety Friends, as I call the pads, so I helped her out with that, which brought back uncomfortable flashbacks to my own puberty.

I did worry now and then about being beat up in the subway. She grinned a little too widely at the half-drunk dudes yukking it up over some lewd joke in a corner, and when a zaftig young lady wended her way across the lurching car, said a little too loudly: "She's a plumper. Fatty!"

Later, she leaned across to me and said, indicating a woman reading in Chinese across the aisle: "Does she understand that?!"

Mom always was a trooper when it came to travelling, though, and this day was no exception. Her gait may be unsteady, but she can run (and push) her way to an open subway door with the best of 'em. Later, inching our way across the George Washington Bridge, we both burst into song spontaneously, simultaneously:

You can't hide your lyin' eyes
And your smile is a thin disguise
I thought by now you'd realize
There ain't no way to hide your lyin eyes

All in all, a grand adventure.

Seeking a cause, any cause

Before Mom had a definite diagnosis of FLD, were looked for all sorts of reasons to explain her increasingly bizarre behavior. I didn't know about FTD, for one, so we wrote off dementia right away; Mom seemed far too young for it.

I had read a while back that many supplements are contamined with substances like lead, as well as having quality issues like not containing promised amount of the promised nutrient. And for a while I was convinced that Mom had gotten manganese poisoning, which has been linked to Parkinson's, from the huge amounts of glucosamine supplements she took to keep her joints healthy -- unecessarily, as it turned out; she didn't have any more or less joint pain after she stopped taking the pills.



Maybe it was some heavy metal in the well water, which my father stubbornly refused to have tested for decades until they put the house on the market and -- surprise! -- arsenic. Weirder things have happened; apparently some poor folks who were happily living near a scenic lake in New Hampshire were sitting ducks for ALS thanks to some innocent-looking bacteria.

For a while I thought it might be all the bisphenol A lining her diet soda cans; she could consume three-four cans a day. It has caused problems with neural development in animal studies, after all.

Then, because so many of her symptoms suggested problems with hearing or loss of balance, we thought it might be a vascular issue. That turned out not to be the case, either. Drinking? She was long known for her hollow leg, but rarely got blind drunk (or even drank regularly, except for the period right after Grandmother died). Heredity? Nope, no other victims in the family, and I sure hope there won't be.

The illness has been, and remains, a reminder of the complete randomness of life, and how from day to day, from moment to moment, nothing stays the same.

Lost arts

One of the hardest things to take about Mom's illness is the loss of her considerable and varied capabilities. I saw my grandmothers slide into the fogginess of old age, and it was, truthfully, to be expected: They were already rather helpless individuals, relying on their spouses to earn and to fix and to transport.

My mother, though, was as capable as a longshoreman and as sharp as a knife. She was formidable.

She knew everything there was to know about insurance, as an award-winning, high-wage-garnering Prudential salesperson, and was a wizard with numbers. She managed the hectic front desk of my dad's auction business. She could wallpaper a room flawlessly, even if the paper was of an intricate design (to which the seamlessly prancing elephants in my dining room will attest). Need a diorama of the human body the night before the big science fair? She was your go-to girl. She could find her way anywhere; on any conveyance. On her first trip outside the U.S., she made her way around Paris the second day we were there, unassisted and not knowing the language, including a long trip on the Metro to return a train ticket.

But I think of the loss of many of her other capabilities as a collective loss to humanity. And I want you all to know what we're losing. She did the kinds of things people don't know how to do anymore. She could sew; really sew. As in: Make prom dresses. And elaborate costumes, say, for a high school production of Hello, Dolly. Her flower garden was and still is legendary in three towns for its size and exuberance. She was crafty, making stuffed animals for said aged grandmothers. The woman grew and canned her own vegetables, for chrissake. She made, and decorated and transported, a gorgeous, elegant, three-tiered wedding cake for 17-year-old cousin's shotgun wedding.

For my tenth wedding anniversary gift, Mom sewed a queen-size patchwork quilt, a "crazy" style, of exotic fabrics -- silks, velvets, heavy brocades -- that we chose together over a period of six months or so. If you don't know much about quilts, crazy means that no two pieces are alike -- so it's that much harder to fit them all together. Here's the kicker: Each piece of the quilt was embroidered, in a unique pattern entirely of her own design. The thing was jaw-droppingly exotic. Guests trooped up to my bedroom to have a look at it, some of them more than once. It took her six months to make; she worked on it for hours every single day. We joked back then that it had literally driven her crazy to make. Bad joke.

The thing is so heavy, so ungainly and yet delicate, that it sits, folded, in my linen closet. Its seams are already starting to unravel.

Mom's dementia sinks in

We're only about two months in to my mothers diagnosis of dementia (frontal lobe dementia, to be specific), and it already feels like the sickness has taken over our family dynamics like some horrible, insidious monster that glops over and ravages everything it touches. Anybody see the old movie The Blob? That's what I'm talking about.

Her decline has been startlingly rapid. It took us a good six months to even think things were bad enough to see a doctor; we remarked on the behavioural changes for up to a year before that. And now, suddenly, she's unable to drive; to cook; to read a book.

While my mother seems blissfully unaware of her illness, and unembarrassed by her behaviors (like removing and cleaning her bridge of false teeth at a restaurant table), the rest of us are on edge in her presence. (Before we found out what was wrong, we were constantly pissed off by these behaviors, to be honest.) If we're visiting for a few days and have had time to adjust to the new paradigm, it's o.k.; but when we haven't seen her in a while, the air is rife with frantic, unsaid thoughts.

Me: She can't even respond to a simple question. She's worse. Does Dad realize this? Do the kids? Can she be left alone anymore? Even in my kitchen?

Dad: Do the kids realize she's worse? Is she, or is it just my imagination? Does she...[thought interrupted by the need to stop his wife from shoveling an entire bowl of ice cream into her mouth in a few spoonfuls]

Son-in-law: She's really gone.

We used to love to hang out together as a family, particularly at restaurants, and often with alcohol. These things are pretty much out now; she gets very confused by crowds and menus, and alcohol makes her symptoms worse. Next time they do visit, though, I'll have to take over monitoring for a while. My father needs someone else to help him cope, if only for a few hours or days. As an only child, spoiled and self-centered, I have had quite the rude awakening. About time, you're thinking. I agree.

Besides, I found out the penalties for letting down my guard. As I was trying to get the kids in their pj's and at the piano while my parents got ready to leave, Mom put on her son-in-law's sneakers and wore them home.