Category Archives: dementia

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.

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.

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.

an open letter to pharmacology professionals

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I need your help. Or rather my mother does. She is 94 and living in a personal demented hell where she is constantly besieged by overwhelming fears and anxieties. She lives with my brother, and their local family doctor is not very knowledgeable about dementia issues like my mother’s. None of the meds that he has prescribed have helped at all.

An acquaintance who trains nursing home staff told me that nursing homes bring in a pharmacologist to do an assessment and suggest a pharmacological treatment plan for dementia patients. Often it is a combination of drugs, and the process is carefully monitored and the drugs adjusted as needed.

Where can I find a pharmacologist who will come into a home and do a similar assessment??

After this weekend I will begin calling local nursing homes to see if they can recommend a pharmacologist that they use. I also have emailed national pharmacological organizations and associations to see if there might be a list somewhere of pharmacologists who specialize in doing those kinds of assessments.

No one should have to spend her last days in the kind of agony that my mother is in. I don’t know where else to go for help. Please leave a comment if you have any advice.

when sleep won’t come

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I’ve tried just about everything herbal and homeopathic and over-the-counter. I’ve tried relaxation CDs and guided imagery. The only thing that works is a sleeping pill, and I will have to convince my doctor to prescribe some more. But I wish I didn’t have to.

I can’t fall asleep for one night, and my mom can’t fall asleep for good. And I think it’s all tied together.

I am helpless to help her, and her distress surrounds me even long distance, follows me into my own darkness.

I can’t bear to be with her and helpless to ease her distress.

Although yesterday, before I left to return home after five days trying, I sang to her, and she stopped her constant moaning long enough to try to sing with me.

“You are my sunshine,” I sang, and her straining voice joined me, mostly wordless, but struggling to carry the tune.

Down the street from where I live now, a teenage boy with some sort of autism sometimes sits outside and “sings” along with his audio player. The sound is haunting.

“Somewhere over the rainbow,” my mother sings with me, hauntingly, and for a few minutes, perhaps whatever mental and physical pain she’s feeling fades into the background of her distressed mind. We take the best cbd oil for anxiety to be able to feel better because we have tried many pill and none of them work as well when i go to sleep.

But not for long.

mom

I wish you could slip into that long sleep of peace, mom.

We both need some rest.

look for me at TGB

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I’m Ronni’s guest blogger today at Time Goes By, as she spends a couple of weeks in NYC at work and play, including participating in the Age Boom Academy.

From an 04/02/09 Time magazine editorial:

For the past several years, I’ve been harboring a fantasy, a last political crusade for the baby-boom generation. We, who started on the path of righteousness, marching for civil rights and against the war in Vietnam, need to find an appropriately high-minded approach to life’s exit ramp. In this case, I mean the high-minded part literally. And so, a deal: give us drugs, after a certain age – say, 80 – all drugs, any drugs we want. In return, we will give you our driver’s licenses. (I mean, can you imagine how terrifying a nation of decrepit, solipsistic 90-year-old boomers behind the wheel would be?) We’ll let you proceed with your lives – much of which will be spent paying for our retirement, in any case – without having to hear us complain about our every ache and reflux. We’ll be too busy exploring altered states of consciousness. I even have a slogan for the campaign: “Tune in, turn on, drop dead.”

Read the whole piece here. and go over the TGB to get my take on it.

straddling worlds

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I keep wondering how long it will take for me to feel really settled in this next stage of my life — to adjust to a new physical state and a new mental state.

Massachusetts is very different from where I was living in New York. Needless to say, I was financially shocked to receive a $348 bill from the town for the “excise tax” for my car. Everyone in Massachusetts who owns a car pays an annual excise tax. Well, since there’s no sales tax on clothing and shoes, I suppose that’s only fair.

On a more positive note, it seems that I don’t have a co-pay for doctor’s appointments through Medicare. I guess it all balances out, especially since I’m in the middle of a round of doctor’s appointment to get my health stabilized — including starting physical therapy for my arthritic back.

Parts of my old life are still with me, though, and that’s not necessarily a bad thing. I will be traveling to visit my mother this weekend, although I’m not even sure that she will remember me. The live-in aide will be able to visit her family, and my brother will be able to have a few nights to himself. And then I will travel half-way back home and spend some time with my women friends, whom I have seen in months and months.

When I get back next week, I wonder if the Cardinal eggs in the bushes not too far from my back door will be hatched. Every day, we go out and check to see how mom and babies are doing (not too close, though; the dad scolds us insistently if we get too close). My grandson is excited about perhaps being able to see the babies still tucked into the nest. Of course, he gets excited about a lot things — spotting a Monarch butterfly, adding a model Brachiosaurus to his dinosaur collection, driving by a construction site while a grapple is working, watching an air force plane flying overhead, going fishing with his dad.

I used to get excited about all sorts of things. I seem to have forgotten how. Maybe I need some mental therapy as well as the physical.

Now I’ll go pack my car.