One of the most difficult things caretakers of Alzheimer’s patients have to deal with is their hatred of the job. I’m fairly open regarding my feelings, but even so I’m often bowed by guilt over the depth of my negative emotions.
It doesn’t help that we’re so frequently praised for being good daughters/sons/husbands/wives/parents. (Yes, there are parents caretaking their children through Alzheimer’s. Did you know there’s an early onset variety of the disease? Yet another lovely surprise from the Alzheimer’s Gods.) Praise means you’re doing something right, something good. Seems logical you ought to feel good about doing it, too, right? When we don’t, that’s when the guilt comes.
Admittedly, I haven’t met a great number of people in the same position as I am, but those I have met, those dealing with a full-time caretaking gig (and it doesn’t necessarily have to be Alzheimer’s that’s causing the problem), aren’t exactly ebullient in their delight over the job. Oh, they may have moments when they think, “I’m doing the right thing,” but that’s not the same thing as being happy about it. No one could be happy about serving time this way. If there are those sorts of people out there, I doff my hat and bow to them, in awe of their patience and fortitude and, yes, love toward another that they can willingly and happily subsume themselves to that other individual’s constant and unrelenting needs.
That ain’t me. I’m not proud to admit it, but it’s the truth. I can do it…but it’s hard to not be resentful, at least some of the time.
What I’m discovering, in talking to people in my support group and elsewhere, is that most of us get by putting one foot in front of the other any way we can. We’re doing the job because we feel we ought, or because there’s no one else in the family willing or able, or because there’s no money to put our patient in a care facility or bring someone in, or because we’re hedging our bets, doing the work ourselves hoping that if a time comes when our loved one must go into care, there’ll be just enough money to keep them there until they die.
There’s no gold at the end of this rainbow. It isn’t only misplaced keys and forgetfulness. It’s the inexorable erasure of the person you knew, the spirit and personality who made them who they are. It’s easy to say, “Oh, but it’s still Mom,” except it isn’t. It’s having to lay out clothing (and hoping she puts it on), because if you leave her to her own devices, God knows what she’ll wear because she’s losing the concept of what goes where and time of year to dress appropriately. It’s tensing up every time she coughs, because you know the day is coming when she won’t be able to swallow anymore and what happens then? Oh, yeah, you get to decide about feeding tubes. That should be fun! You begin to experience her little bouts of incontinence, the announcements of “I shit myself this morning.” Fortunately, she’s still able to clean up after herself, but what happens when she can’t? I don’t know if I’m willing or able to toilet my mother. I’m not talking just diapers (which she already wears, thank God), I’m talking about changing her, wiping her ass. I just don’t know if I have it in me.
And (warning: gonna get a little raw here) frankly FUCK the person who says to me, “But your mother wiped your ass and changed your diapers when you were a baby,” because although I can’t make you understand, this is different! I’m sorry, but it is. I can’t explain it, but it’s true. And those parents who have done this for their severely handicapped sons and daughters through infancy and teenage years and into adulthood — I salute you with all the respect in my heart. I’m sure you must love your child to the moon and back.
But I bet you hate the job. I bet you hate having to do it, and you hate yourself for hating it because we’re not supposed to feel that way, are we? We’re supposed to throw ourselves on whatever grenade comes our way and so what if it rips us apart.
And you know one of the very worst parts of all this? One of the very worst parts is when Mom is so obviously grateful to be here, so thankful for the meals we make her and our patience with her. (I scream only in the depths of my head.) That’s when I feel like a total schlub, a fucking what’s-wrong-with-me-that-I-don’t-enjoy-this psychotic.
And I wait for the next grenade.