Category Archives: caregiving

The Deathwatch Diary (One)

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My mother’s room looks out over a roof with the HVAC and other protuberances. But over the left corner of it all, I can see the Hudson River and the Palisades. I can see it, but my 94 year-old mother can’t.

Day by day, she grows smaller in the hospital bed on the oncology floor with the patients who are at the point at which “Comfort Care” is their last best option. My mother doesn’t have cancer, but, with advanced dementia (can’t swallow) and renal failure, “Comfort Care” is her last option as well, and this is the best place for her in this hospital. (At least I think so; my brother doesn’t agree.)

I have blogged about my mother’s condition before, and you can read those posts by searching this blog for “dementia” and/or “caregiving.”

For the past ten years (which, not coincidentally, is when I began this blog) my brother and I have disagreed about the effects on my mother of her journey into dementia. What he insisted was her usual stubbornness and feistiness, I believed, from my own research, was that insidious deterioration that had begun in her brain and would end just where it is ending. I had read The 36-Hour Day, I logged onto online forums on the subject of symptoms and care. I subscribed to Care ADvantage magazine to get tips on what to look for and how to help her manage the changes I could see in her behavior and her perceptions of what was going on around her.

My brother and I brought our mother to the emergency room last Sunday, after she had refused to eat or drink for several days, was obviously dehydrated, and had begun to tune out the world. In retrospect, perhaps we should have let nature take its course, and she might have simply gone to sleep at some point and never woke up. But she seemed in severe distress — couldn’t find a comfortable position to lie or sit in, and finally, unsuccessfully, tried to sleep sitting up. She had stopped communicating and kept rubbing her legs. We couldn’t tell if she were suffering, and so we took her to the hospital,

She is sedated, now, as “comfortable” as possible during this time when her body is shutting down. Her awareness already has, except for brief and seldom moments when she is physically disturbed and then responds with wide-open, red-rimmed eyes and an unearthly howl that resonates with a primal fear.

I have slept in her hospital room every night since she was admitted last Monday, listening to her labored breaths and getting up to check her when her breathing stops for several seconds at a time. When my brother comes to stay with her during the day, I take some time and slip away to shower, change my clothes, eat something other than hospital cafeteria food, walk in the crisp fall sunshine. The time drags while I am sitting in that room with a partial view, and so I knit, read, play games on my iphone, check in with FaceBook and my son’s Twitter, check my email.

But this isn’t about me.

Or is it?

I am a victim of elder abuse

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from “Elder Abuse and Neglect”:

In emotional or psychological senior abuse, people speak to or treat elderly persons in ways that cause emotional pain or distress.

Verbal forms of emotional elder abuse include

* intimidation through yelling or threats
* humiliation and ridicule
* habitual blaming or scapegoating

Nonverbal psychological elder abuse can take the form of

* ignoring the elderly person
* isolating an elder from friends or activities
* terrorizing or menacing the elderly person

OMG. There it is. That’s why I moved out from living with my brother and trying to take care of my mom who still lives there. I kept trying to tell him to stop, but he just kept on. I’m an elder, and that’s abuse.

And now I have to figure out how to get my mom away from him because, at 94 and with dementia and a slate of physical problems, she can’t just move out the way I did.

Boy, did I make a series of bad choices as I tried to be my mom’s caregiver. I’ve been trying to remedy my situation since, and now I have to figure out how to remedy hers.

What I find really interesting is that, while I was on an anti-depressant, I never got mad enough to fight back no-holds-barred. Now I’m off the drug and I’m really mad. And I’m fighting back.

day 3 of dementia immersion

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She tries to comb her hair with her toothbrush and brush her teeth with her comb. That’s pretty much a metaphor for where my mom’s mind is. And this is my 3rd day here with her and my brother, trying to ignore his rants against my caregiving “techniques” while keeping my spirits up so that I can be of best use to my mom.

Every once in a while she does have a lucid moment. Soon after I arrived, she looked at me, smiled, and then started to cry “I’m so happy happy to see you!!” Several minutes later she asked me “What is your name?”

Sometimes she calls me “Pani,” which is the Polish equivalent of “Mrs.” In those cases she knows I’m someone who helps to take care of her but forgets who I am. Sometimes she calls me “ciocia,” which means “aunt” in Polish, and she thinks I am one of her many aunts (all long gone) whom she knew as a child. Sometimes she hugs me and says “You are my mother.”

But mostly she vocalizes quick pants of “a ah, a ah, a ah….” for hours on end, refusing to take even a tylenol.

I am only here for a while once a month. My brother, who has CONTROL but no real self-control, keeps her with him and does the best he can by himself. They both need more help, but he won’t bring any in.

I’m doing my best to keep my reflux and back spasms under control. How long I last here depends….

I keep reminding myself that she won’t live forever, even if right now it sure feels like it.

While she’s napping, I’m going to wash my hair.

independence

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There is a lingering scent of bug spray throughout the house this July 4, left over from yesterday’s cook-out and trek down the street to watch the fireworks. I had the option of not hanging out in the 90 degree heat with the forty-something-aged parents and their young kids and not standing around in the mosquito and Japanese beetle invested night with the hundreds of others, necks craned to the sky. I chose to hang out in my own cool space, making periodic appearances to gather up my food and drink and interact a bit with the guests.

Such is the privilege of age — especially in my situation, where I have few responsibilities to anyone but myself. (Except, of course, my 94-year-old demented mother, whom I will visit in a few days to help with her care.)

It is Independence Day in another way for me. For the first time in some 25 years, I am off an anti-depressant. It served it’s purpose, and I was done with the lack of depth of feeling that is the both the benefit and the curse of those meds. It took three months to wean myself off, and I am seeing a counselor to help with the transition, but it’s worth it.

I’m writing more, feeling more, doing more. I’m almost done with the three-dimensional wall hanging that I’m creating for this virtual exhibit. I’m quite pleased with the result, and I have ideas for more such projects. And I’ve begun a sweater for my daughter like the one below I made for myself, but in another color.

I’m even feeling more sympathy for my poor mother, and, in a new strange way, I’m looking forward to spending some time with her, trying to ease her weary mind.

I am thinking a lot about being the age I am (70) and what I want for myself, which is seeming to be so very different from what I wanted even a dozen years ago. I am trying out some alternative ways to relieve the pains of joint and spine problems, and they seem to be working.

Today is Independence Day, and despite the turmoil and despair in so many other parts of this world, in this small space that my life takes up, it’s a good day.

Yes, it’s a good day for singing a song,
and it’s a good day for moving along
Yes, it’s a good day, how could anything go wrong,
A good day from morning’ till night

Yes, it’s a good day for shining your shoes,
and it’s a good day for losing the blues;
Everything go gain and nothing’ to lose,
`Cause it’s a good day from morning’ till night

I said to the Sun, ” Good morning sun
Rise and shine today”
You know you’ve gotta get going
If you’re gonna make a showin’
And you know you’ve got the right of way.

`Cause it’s a good day for paying your bills;
And it’s a good day for curing your ills,
So take a deep breath and throw away your pills;
`Cause it’s a good day from morning’ till night

Delayed Gratification

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We were supposed to leave for Maine today, but my grandson had a stomach bug and fever yesterday. He seems fine today, but we gave him another day home just to make sure.

It’s been a while since any of us have been able to go away for a whole week, and we are all looking forward to the ocean and the nature preserves and the deck on our cottage that looks out over an estuary. My grandson and his dad will fish, and my daughter and I will just veg out.

Time is passing too quickly for my liking and taking with it too much of the physical capacities I’ve always taken for granted. Degenerative disc disease is not uncommon for people my age, but mine is worse than normal. There’s not much I can do at this point — eat healthy, stretch….

I remember that my mother had a chinning bar attached near the top of an open doorway, and she would hang from it by her hands several times a day. I think it helped a lot with her spinal problems, and now I have one here. When I hang from it, I often can hear the pops of my spine decompressing.

I spent a little time online last night searching for ways to decompress the spine. Hanging by your hands from a bar is one of them — one of the least expensive and easy to use.

I am lazy and things I wanted and/or wanted to do always came easy to me. Notice I said “things I wanted.” Maybe I didn’t want the things I didn’t want because they didn’t come easy to me.

I was never one to delay gratification — whether it was eating chocolate or buying a new pair of jeans. This is something I am learning to tolerate now in my elder years.

I think of my dementia-plagued mom, who seems to be able to be gratified by so little — a globular gourmet lollipop that she can suck on for hours, a simple song that I make up as I go along.

Tomorrow, Maine, and some gratification for me. In another few weeks, I make the journey to try to give my mother some little gratification. (I wish I could take another vacation after that!)

Meanwhile, I am continuing to see a chiropractor for thoracic spine therapy, since the muscles are still pretty sore and in spasm from my fall off the bed at my mother’s a little over a month ago.

I will probably never delight in Salsa dancing again. And that’s too bad, because I always found the movements and the music very gratifying.

singing mom to sleep

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My mom lives more than 160 miles from me. She is 94 with severe dementia.

When I go and stay with her (about once a month) I sing to her, old songs that she might recognize — “Over the Rainbow,” “My Favorite Things,” “Try to Remember,” “When the red red robin comes bob bob bobbin along…..” I have a below average singing voice, but my singing seems to calm her down.

Tonight, 160 miles away, she wouldn’t calm down, and my brother was at his wit’s end. So I started singing to her over the telephone, and it worked. Now I have to figure out how to record some of those songs and burn them on a disk or get them onto an mp3 player so that I can send them to her — a medley of old songs to ease the demented mind.

Hey, whatever works.

a sad shoe story

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Magpie Tales features a weekly visual writing prompt, and this is my response to Magpie #16. Click here for more.

shoes

I sit on the floor and massage her bony feet, carefully avoiding the hammertoe and bunion that distort her right foot, although both bear assorted signs of 94 years of wear. How she once loved her stash of Ferragamo pumps — slim pointy toes, even slimmer curved heels. In high school, as the size of my feet caught up to hers, I would jam my feet into those Cinderella slippers, wondering if the price of pinch and pain was worth it. Decades have gone by since she chose to suffer for style and status, and those Ferragamos have long since gone to Goodwill. She has no choice now but to shuffle in soft slippers, her frivolous fling with vanity long forgotten. I sit cross-legged and barefoot on the floor and massage her hurting feet, delighting in my straight and polished toes and thankful that I had the good sense to choose otherwise.

Dementia at Dawn

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It’s dawn and she’s been up all night. Up and down all night. Her feet are swollen. They hurt, but she isn’t able to articulate the extent of her pain. Her vocalizing is mostly babble now, although she has occasional lucid moments when she says (often in Polish) that she’s afraid, that she wants to go home, that she wants me to take her with me. She often refuses to take even a Tylenol. Her hands are constantly reaching out, clutching, grabbing, holding on hard enough to hurt.

Sometime around 4 AM it all got worse. She is somewhere in her head — terrified. She resists all efforts to help. Tries to bite.

I wake my brother, eventually leave her with him so I can get some sleep. But I can’t sleep.

He doesn’t believe she has dementia. She’s just stubborn, he insists. Ornery. Always has been.

He’s in denial I say. Always has been

I am caught in the middle. Always have been.

The only happiness I ever have had since childhood has been away from them.

Yet, here I am, stuck in this demented dysfunctional day.

The 70s at 70

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My 70th birthday is today. My Face Book profile photo today is one from the 70s as a reminder of the fleetingness of time and body image.

I am here trying to take care of my 94 year old mother , but I am feeling like the sciatica inflicted 70 year old that I am.

And I’m pissed because my laptop wont connect to the net even tho the wifi sig is coming in strong. So I’m doing this late at nite on my iphone because it’s my only time my hands are free of my mother’s ferocious grasp.

Let me tell you, those 70s were a hell of a lot more fun than this one.

But it’s my birthday so I’ll bitch if I want to. Hell, my first birthday card is my jury duty notice.

writings from a workshop #2

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(the writing prompt was an acorn)

She is walking today — short stumbling steps — her chipped cane prodding the gravel choked weeds along the length of driveway.

We are walking today because she can, because it’s a mild early-fall morning, because the pains of her age are not so bad, because I am here to help her if she stumbles.

We walk along the property line, a slow unsteady march through light and shadow. The unkempt ground is littered with the leavings of the season — withered crabgrass and dandelion stalks, weathered leaves, and an early harvest of acorns.

I hold her free arm while she beats the ground with her cane, grunting angry words that I can’t understand.

A sharp white stone catches her attention, and she prods it with her toe, strikes it with her cane, sends it out of her limited sight.

She stops before a scattering of acorns, a barrier to her shuffling gait. Grunting, again, she swings the tip of her cane, stabbing at the offending shells, missing more than she hits, the cane tip knocking aside small stones and sending too few acorns rolling into the underbrush.

She is shaking now, from fear or frustration or just plain tiredness. I can’t tell.

I lead her back inside to her chair by the kitchen table, where a doughnut and coffee will take her mind off the recalcitrant acorns.

She will forget her battle with the acorns in the driveway.

But I can’t.

(the prompt was a memory of a piece a jewelry)

How sweet it is to be sixteen. At least it’s supposed to be. I know that I am not nearly as sweet as my parents want the world to think I am.

So they give ma a heart. A 24 carat solid gold heart, heavy with considerations.

A prominent diamond chip marks the day of my birth on the calendar etched into the center of the heart’s face, and lines like rays of the sun streak from the edges of the month of March to the edges of the shiny heart.

I am sweet sixteen, and my wrist is shackled with a heavy heart on a heavy gold charm bracelet. Look, Look, the clanking metal announces: Look how much my parents love me.