Being a caretaker is a little like being one of those moving targets  in a sideshow arcade. You’re in motion, you keep dancing, you think “If I can just keep all these plates in the air, everything will be fine,” and then some cosmic marksman comes along and — POW!

It doesn’t take much, particularly if you’re having one of those “off” days, where your bio-rhythms seem out of kilter and EVERY LITTLE FUCKING THING THAT COULD POSSIBLY IRRITATE YOU has occurred.

My day started with cat puke. Not a big deal as a stand-alone thing, but it was only the beginning.  And nothing major, really. Just one thing after another.  And then I went to see Mom.

She was sitting with a bunch of residents listening to a guy play accordion. In fairness, he was an excellent musician, but it isn’t easy trying to carry on a conversation with a woman who’s a) deaf and not wearing her hearing aids, b) has Alzheimer’s, and c) is sitting in a room with a really loud accordionist.

It’s actually pretty funny, writing it out like that. What wasn’t funny, what gave me an emotional bruise, was when I put my hand around my mother’s upper arm, index finger to thumb and could almost reach.

She is now less than 80 lbs. They assume that it’s the occasional water she takes in that is keeping her alive, because it certainly isn’t the amount of food. She’s hardly eating at all. And yet here she is. I’ve asked if she’s scared. No. I don’t think there’s work left to do; we went over that months ago. It just isn’t her time. It’s not that impatient for her to go — hardly — but it’s difficult to see her like this. So reduced.

Which isn’t anything I haven’t ranted on about before.


While I’m venting, let me tell you about my trip to the PT.

I’m having issues with an ankle, so my doctor–the wonderful Susan Buchek–wrote me a script for physical therapy. I chose the facility closest to her office. Guy seemed okay. A little rough around the edges, but I cut him some slack because he’s going through what is apparently a nasty divorce. (Something I did NOT need to hear and SHOULDN’T have – what happened to professional boundaries?)

Second visit, I’m sitting on the bench waiting for him and he says, “I need your sneaker off.” I said, “I was waiting to see what you wanted to do.” He says, “Oh, you do whatever I say?” and BEFORE I CAN SAY WORD, he adds, “Take off your pants.” He had to have seen by my face how shocked I was. He quickly said, “You know I’m kidding, right?”

Yeah, right. I know you’re kidding, asshole. But I worked as a massage therapist and I’ve been trained and I believe in those boundaries. I found him unprofessional and offensive. By the time I got home, I’d found my tongue. I called the office, but they’d already closed for the day, so I left a message that I won’t be back. I’ll find someone else.

Really, I didn’t need that, too.

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Standing In Place While The World Swims By

My mother weighs less than 80 pounds.


The first thing the nurse said to me at last week’s Patient Care Conference was that she doesn’t know what’s keeping Mom alive. She barely eats–except when she does. That’s a merry-go-round I’ve chosen to put from my mind. There’s no telling what she’ll do on any given day, and I cannot afford to expend energy worrying about it. For weeks at a time, she won’t eat at all and then suddenly she cleans her plate three meals in a row. Or she’ll eat about 25% of her meals … or 50% … or 5% … or not at all. She drinks … or doesn’t. If there’s muscle tone anywhere on her body, it must all be hidden in her heart, because there’s certainly none to see in her flesh. Another nurse told me that she can’t understand why Mom doesn’t have enormous bed sores because there is literally nothing on her rear-end anymore except fragile elderly skin over bone.

Hospice reports that her oxygen level is great (97-98%), her lungs clear, her heart strong, her Bp good (120/70 last time). They now do only bed or chair baths because getting her in and out of the shower caused so much discomfort, she needed additional morphine.  She remains in relatively good spirits. There’s an occasional day when she’s feisty, but in a way that’s comforting — it’s a bother to the staff, but it’s more like her old personality. She usually recognizes me and my husband, although it may take a moment or two. She recognizes the women who care for her, even though she can’t remember their names. I think she gets tired of just sitting, but there’s nothing else she can do, physically speaking, and she’s usually too tired to try. She participates in activities, talks with others, sits and talks to herself.

But, my God, what is she waiting for?

No, I’m not anxious for my mother to die. I’m not standing in the wings rubbing my hands together in avaricious anticipation of my inheritance. (There won’t be one.) I’m just … tired. So is she. I can’t imagine what’s keeping her going.

One of the Hospice nurses, who’s into what my friends and I affectionately call “whoo-whoo” stuff, asked if there was anyone who might find her passing particularly difficult. She suggested that it was that energy holding her back. “Could they be convinced to send her a mental message that it’s all right to leave?” she wondered.

I thought about that, rather than poo-poo it. I’ve had too many unusual things happen in my life to poo-poo much. Of the family remaining, there are only two I can think of who will be particularly devastated when my mother dies. One is my eldest niece, Michelle, who shares a close relationship with Mom that the rest of us have envied. They were (are) “soul mates,” in Michelle’s words, but I know she would do nothing to hamper Mom’s passage out of this world.

The other is my Uncle Paul, my mom’s younger brother, the baby she raised while my grandmother struggled to support the family as a single mother during the Depression. I know her decline has taken its toll on him. He’s in his 80s, not a young man by any means, with health issues of his own. He misses seeing her (he lives seven hours away, does not travel well, and doesn’t like to leave home). He misses talking with her on the phone, touching base for a few minutes, bantering each other about baseball (he loves the Red Sox and she the Yankees). But I can’t ask him to let her go. Even if he were to believe in such a notion (and I don’t think he does), I’m not sure he could take that step. If, by some chance, she were to die right after that, he’d feel guilty. I wouldn’t wish that on him, on anyone.

So we wait.

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An Unexpected Gift

Since the weather is supposed to be awful beginning this evening and lasting through the weekend, I made a point of getting over to the nursing home.

Mom, as always, was seated in her wheelchair with a pillow behind her head.  We said hello and then I wheeled her down to the so-called lounge so I could park her wheelchair in the sun.  We spoke about inconsequentialities (the beautiful day, the weather in general, whatever thoughts slipped through her mind).  At one point, I leaned over from my chair and put my head on her shoulder.  She tipped her head against mine and her hand beat a gentle rhythm against my arm, a cadence familiar from childhood:  tap-tap, tap-tap-tap, over and over.

Then, all at once she began to softly sing “Happy Birthday.”  I held very still, listening, because you see, my birthday is tomorrow. I hadn’t said anything, yet in the ravaged waste of her mind something nudged her, prompting her to sing that particular song at this particular time.

It’s not over, ’til it’s over.

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My sense is that we are weeks away from the end.  According to the staff at the nursing home, Mom refuses all food and almost all drink.  She is further way mentally than she’s ever been.  She laughs unexpectedly, at things I cannot see or hear.  Yesterday, she kept saying, “Come here, baby, come here, baby.”  I finally asked who she was talking to.  “Isn’t there a dog here?” she said.  “Yes,” I said.  “There’s a dog.”  “Well, then.”

She drank two-thirds of a glass of cold water while I was there, but complained that “everything tastes salty.”  (I tried the water; it wasn’t.)  She is beginning to have trouble swallow, a sure sign that the Alzheimer’s is gaining ground.

As I was leaving, I bent down to kiss her.  “I love you, Mom,” I said.

“I love you, too,  honey.”

“Love you billions and billions and billions.”

“Oh, don’t do that,” she says.  “You’ll hurt yourself.”

Hard not to both laugh and cry over that one.

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One Step Further

What a weird experience the whole end-of-life thing is for those who will remain behind.

Mom continues her gradual decline.  In a phone conversation on Monday, her Hospice nurse told me that we’re looking at weeks now, perhaps as much as a month or two, but it’s unlikely it’ll be more than that.  (Never say never where my Mom is concerned, though.  She’ll go in her own damn time.)  Of course, she could surprise us and go at any time, so …   Let’s just say I’m not placing any bets.

Yesterday and today I’ve talked with the funeral home back in Saratoga that will handle her service, and I’ve spoken to the funeral home here in CT who will take possession of her remains and hold them until the folks from Saratoga arrive.  I’ve filled out some preliminary paperwork and written an obituary.  All that remains is the moment when.

I can’t describe the feeling inside…writing those words “take possession of her remains.”  This is my mother I’m writing about!  I’m astonished at the cool calm inside, the … what?  It’s not a sense of peace, not quite that.  Maybe it’s that I know there’s a job to do and I need to keep my wits about me in order to do it.  But the end … her end … will be hard.  I can feel it.

I’m satisfied with the work I’ve done.  It wasn’t always perfect.  I didn’t always act or behave as my better nature would have it, but what’s past is past and what’s ahead is ahead.  One step at a time, one day at a time.  I will accompany her as far as she will let me and then I will kiss her and let her go.  When it happens, I hope it’s a good trip, and easy transition.  She has a lot of people who love her waiting for her on the other side.

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Not Much To Say

And for that, I should probably be grateful.


Mom continues to heal from her last fall.  The laceration on her right brow has closed and I assume the fracture to the bony orbit of her eye is stabilizing.  The bruise on the right side of her face has faded, but is still obvious in certain light, all purpley-green.  The cast is off and she’s using her hand, albeit gingerly.


Mentally, of course, she continues to decline.  She knows me, knows my husband, but I don’t know how many others she might recognize.  (She’s much better face to face, obviously, than trying to recall someone to mind.)  Her ability to comprehend what is said to her is fading.  It may seem as though she understands, but if you delve a little deeper, it’s easy to see that she doesn’t.  (As an example, today she was waiting for the aide to take her to the toilet.  She kept saying, “I really need to go!” and I kept telling her, “Then go ahead and go.  You’re wearing a diaper.”  “Oh, really?  That’s good.”  A pause.  “I really have to go!”  And around and around.  Finally, I said, “You don’t understand do you?”  Without looking at me, she replied, “Not much.”  And that, of course, is when the tears came.


I’ve relinquished the chore/duty of Mom’s laundry to the nursing home.  I never had to do it.  It was just something I wanted to do for her and, maybe, something I needed to do for myself, to not relinquish control of everything, to have a bit of something beyond visiting that I could do for her.  But it was time to give it up, time to pull away a little more.


Every time I pack up an article of her clothing that she doesn’t need anymore (boots, coats, slippers, bathrobe) I feel like she’s taken another step away from this world.  Or maybe it’s that I’m stepping back?  I don’t know.  But it’s a threshold to something, a pivotal moment, a little ominous, a bit of the old (if you’ll excuse me waxing melodramatic) tolling of the bell.  Every time I visit, she is smaller, physically and mentally.  Some day, she’ll wink out altogether.

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Left Behind

Watching Mom succumb to Alzheimer’s is like running toward a bus stop where someone I love has just gotten on the bus and is riding away and I have all these things I want to say and maybe find a way to make her stay, but she’s on the bus and it begins to move and I’m running toward it as it pulls away and both of us, me and the bus, are moving and I can see the blue exhaust at it begins to accelerate and move into traffic and I run harder and harder trying to catch it … and then sooner or later I realize my folly and my gait slows … and slows … and slows … until eventually I stop and just stand there watching the bus fade into the distance, taking her away and out of my life forever.

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