The truth is, Alzheimer’s fools you. It’s a sneaky bastard of a disease. You just get your head around the basic idea that your family member or friend (my mother, in my case) is going to lose all memory of her life, and then they plateau.
For awhile there, Mom declined rapidly. We all thought, “Wow, this is going fast!” and (in a way) were glad of it for her sake as well as ours. She would fade…fade…fade…and we would be spared the chore of having to watch a long, slow, agonizing (at least to us) descent into anonymity.
(Imagine for a moment what it must be like inside the head of someone with Alzheimer’s. I get a glimpse every now and then because Mom is all too aware that there’s “something wrong” (her words) with her memory, although no one has told her the dreaded “A” word. What would be the point? She’d only forget or, worse, remember and obsess on it. But imagine the later progression of the disease. Do memories pop to the surface of the brain and as quickly vanish? Are they a moving montage of blurred images that make no sense, not clear and present long enough for the brain to fasten on to any one? Is it all white noise?)
Now she’s leveled off, which is both a blessing and a curse.
On her good days, it’s easy to forget that she’s sick at all. Oh, she’s lost weight (down to 98 pounds) and walks with a pronounced stoop, but she gets around pretty well and does what housework she can, loathe (as only a starch-backed New Englander can be) to let anyone else “control” her home. This week, in the aftermath of a blizzard, she dressed warmly and went outdoors to sweep off the stoop and path for the mailman, enraging my 92 year old father who seems to think she should do nothing all day but sit in her chair in front of the TV (like him). He threatened to send her to a nursing home if she does it again (he won’t), which sparked a huge argument between them. My mother has never been one to be sedentary. She likes to do things, but since she can no longer drive (and taking her anywhere only confuses her), she’s stuck.
On her good days, you get drawn into conversation as if it were old times — people, places, things. Then a remark is made (“I saw Mum yesterday…”) and you drop THUMP! back into reality. If you listen and observe closely, it’s easier to see — the little motions, the fretfulness, the wandering, looking for…what? (Often one of us, and just as often one of us who is there at the time.) She naps during the day, something she rarely did in the past (although if you ask she swears that she doesn’t).
On bad days…it’s bad. It’s hard on all of us, but hardest on my dad who lives with it 24/7 and is not the sort of man to share his feelings with anyone, let alone a counselor or therapist who might be able to shed some light and guide him along this awful road. Offers of support are repulsed. He wants us when he wants us, to do the things he wants us to do (usually immediately or sooner) and that’s about it. So he lives in an isolation of his own making.
Worse of all, I see how Alzheimer’s and time have colluded to steal what I thought was a re-emergence of the affection my parents must have felt at one time for each other. (At least I hope they did. I can easily imagine the marriage being one of convenience — he got a housekeeper and bed partner, she got financial support.) Lapsing into armchair psychology here, Dad is angry — angry at Mom for getting sick, angry at the disease, angry that there’s no cure. He picks at her, finding fault, follows her like a watchdog, harangues her to take her medicine (for all the good it does). Mom is angry — angry at her failing memory, yes, but mostly angry at him for not being patient with her, for being mean and miserable (something at which he has always excelled). On the phone the other day, she told me she was sick of him. I suggested she move out, find an apartment on her own in an assisted-living facility where someone would be nearby. “Maybe I will,” she said, but I know she won’t. I could hear it in her voice, the fear that underlies her days, the fear that keeps her prisoner. Personally, I think there’s something in Mom that knows precisely what’s going on. But she — like Dad — is not one to talk about things or, if she does, not for long.
There are other indications of disease progression. A tendency to whine. The constant movements of her hands, plucking at blankets or the front of her clothes, unconsciously folding and unfolding the material. Mom has always been opinionated and not afraid to share her views on things. She could be mean, but not outright vicious. That’s changed. Knowing that she referred to someone as “that skinny bitch” near about rocked my world. That’s not my mom. I don’t know who it is (and for a while I actually preferred the vague little lady who had come to live her body), but it’s not her. Or maybe it is. Maybe Alzheimer’s strips away all semblance of decorum, lowers every inhibition, and lets it all hang out. If so, it’s not a pretty sight.