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.