Category Archives: caregiving

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.

other person’s words

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I am struck tonight by the power of other persons’ words.

Oh, I know, this web is a world of words. I spend too many hours meandering among miles of words that escape my head and ignore my heart.

Ronni Bennett’s Time Goes By is the one blog I read every day because what she has to say always has relevance for me. And so I don’t know how I managed NOT to read an incredibly moving section of her blog until tonight. And it is a section that has deep meaning for me because it’s about her time being her dying mother’s caregiver.


“A Mother’s Last Best Lesson” is presented in 12 poignantly honest pieces that hold the mind and touch the heart.

It’s not that I identify with Ronni’s experience; my attempts to take care of my mother have been very different. But she tells a powerful story, and there is something in me that is jarred by her revealing words.

There is something in me that resents not being able to do for my mother what Ronni did for hers. Oh yes, our circumstances are very different. Dementia makes it so. As does, in my case, situations of brutal familial disputes over how my mother’s care should be handled. I couldn’t win, so I abdicated because I have no legal power to make her struggle any easier, and I couldn’t bear to just stand by.

Ronni’s story made me realize that, after 8 years of caregiving being the intense focal point of my existence, I now find I don’t have a point, a purpose. I can get up in the morning, or not. I can eat, or not. Bathe or not. Go out or not.

I am finally “retired” from employment and living with a loving family and an almost-7-year old engaging grandson who is a joy. But I have forgotten how to be engaged in my own so-called life.

I am feeling like a work in progress that has had no progress for 8 years. In my past life I raised a family; held various challenging and rewarding jobs; was an vocal activist on behalf of various political and educational issues; and found power in the poetry of women’s spirituality. And I wrote. And I wrote. I was passionate about everything I did; if I didn’t feel passionate about it, I didn’t do it.

I have found myself in a “dark night of the soul” before and have labored, successfully, to find my way out, one step at a time.

Next week I am going on a week’s vacation to Maine with two of my closest friends. We will play Boggle and drink wine and laugh a lot. We will walk on the beach and read and contemplate and talk and laugh a lot.

And when I come back home, I will begin yet another journey to find the parts of myself that I have lost, to regenerate the parts of myself that have lost passion and purpose. I think I have found a new counselor who might be able to help me with that process.

Over the course of some 20 years of my previous life, I had the good fortune to have had as a friend and counselor someone who has moved on to assisting veterans and their families as they reconnect and readjust into full, productive civilian life.

He was a poet before he was a therapist, and his work and his words, now, still hold a great deal of healing power.

The word psychotherapist comes directly from the Asclepiad tradition. It means “soul attendant.” Psychology literally means “the order and meaning of the soul.” It didn’t become a science until Freud and his followers arrived out of the medical tradition. Modern psychology left the soul far behind and has not yet reconnected with its spiritual roots, though it needs to, because psychological healing occurs at a spiritual level.

The above is from an interview in The Sun magazine on helping veterans with PTSD, entitled Like Wandering Ghosts: Edward Tick On How The U.S. Fails Its Returning Soldiers. It’s worth a read.

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.

slowing down

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I saw a snippet on tv news the other day about a group of Londoners who are holding a “Slow Down London” festival to encourage the people of the fastest paced city in the world to slow down.

As I napped on and off all day today, I realized just how tired I am after several years of always having to be ready to take care of my mother’s needs. That meant that if I wanted to do anything for myself, I had to do it in a hurry. I was always either hurrying to finish what I was doing or hurrying to do what she needed me to do. I’m just beginning to realize what a toll it took on my energy.

From the “Art of Slow Living:”

To stay for all your life a free thinker: this is the meaning of Slow living; to have the courage to stop, ponder and made your own choices before external events and trends will sweep you away.

I am at a place in my life at which I should be able to do that. I am surprised by how hard it’s being for me to downshift.

I think it’s going to take a lot of naps.

the letting-go dilemma

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Stories begin somewhere in the bowels of truth. Do these things happen or do they not? Who is to know what is true? I only know my truth. And so I tell my story.

It is two days ago, and an April morning the likes of which we had been waiting for. I am sitting in a sun beam, leisurely eating a corn muffin, sipping a cup of green tea, and waiting for my mom to wake up. I am supposed to be in Albany, attending my friend’s quilt show and then getting together for mine and my women friends’ combined annual birthday celebration. But my mother is catching a cold and is feeling more miserable than usual.

He walks in, waving two different socks of hers, angrily accusing me of losing their mates in the wash. Later, I find the mates to those socks stuffed into the pocket of one of her jackets, along with balls of Kleenex and a comb. It doesn’t matter. As far as he’s concerned, anything that’s “missing” or “broken” is my fault. He will not let go of needing to blame me.

The newly hired live-in aide arrives the next day. She is a perfect “Mary Poppins” to my mom’s now childlike persona. She speaks Polish. She is kind and gentle and understanding. I wonder if he will wind up letting her go. Or, perhaps, like me, she will finally do the going.

My mother is more upset and upsetting than usual. Her nose is running. We think she has a fever. I catch her trying to bite into a paper plate and later find a wad of Kleenex in her mouth. She goes through boxes and boxes of the stuff — folding, shredding, tearing, and, apparently, trying to eat. She lashes out in frustration, smacking her hand against the wall, causing a wash of blue skin — just one more place on her body that will now hurt. Sometimes, when she’s quiet, when the air around her is quiet and we sit side by side on the edge of her bed, rocking and humming, she asks “What is happening to me?” “You just got old, mom,” I say, and start singing “Pack up all your cares and woes, here we go, singing low. Bye, bye Blackbird.”

And so I finally go, tired of the blaming, realizing that now he will have to find a way to coexist with the aide. She and I have similar approaches to caring for a frail, usually demented old woman, although she has a lot more practical experience than I. How will she deal with his enforcefullness (yes, I made that word up, but it says it all)? Will he let her do what she is there to do? He will need to let go of his need to control. I wonder if that is even possible.

My grandson’s cat Cuddles has not come home. It’s been two weeks since he escaped out the back door. They know he shows up in their yard at night because they have set up outdoor cameras. They leave food out for him. They bait traps with his food and their smelly clothes. So far they’ve caught a possum, a raccoon, and two tabby cats. But no Cuddles. My daughter goes out in the middle of the night and sits in the shadows, waiting to see if he might venture near. She said today that she just might have to let go of the idea of catching him. He will either come home or he won’t.

And my mother will either let go or she won’t.

And all I can do is tell my story.

broken bonds, broken hearts

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Somehow, I always thought that family blood bonds could not be broken, no matter what. Every family has its dysfunctions; I figured ours were no worse than most.

Wrong.

My mother is with my brother, and I have left. Chances are that I will never go back there. I didn’t want to leave my mother, who has late-stage dementia:

Common signs displayed by people with late-stage dementia who experience physical or emotional discomfort include: increased agitation, fidgeting, or repetitive movements; tense muscles, body bracing; increased calling out or repetitive verbalizations; decreased cognition, decreased functional ability or withdrawal; changes in sleep pattern; falling; increase in pulse, blood pressure, and sweating. A good deal of emotional discomfort in dementia patients comes from difficulty sorting out and negotiating everyday life activities.

But as my brother’s rage against me escalated, I realized that harassing me was more important to him than taking care of my mother, even if the resulting vocalized tension increased her agitation and anxiety.

So I left. I broke my heart and I probably broke hers. But my presence in my brother’s house seemed to be a constant source of irritation to him — irritation that slowly built into outright rage.

Because I fought back, finally refusing the burden of the last bullying straw.

And so I left. I left my mother in pain and bewilderment. I left my brother in a rage at me for something that had nothing to do with my care of our mother.

Tomorrow, a live-in home health aide is supposed to arrive. I hope that she is kind to my mother. I hope that my brother is kind to her.

I might never know.

a day in purgatory

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Eight hours in the emergency room and12 in a hospital room with my mother. And brother.

It wasn’t hell, but it sure was as close to purgatory as I can imagine.

At my insistence and her doctor’s recommendation, we took my mother to the emergency room soon after I arrived on Tuesday. She had a minor fall just before the weekend, and the doctor wanted to get her an x-ray and also — as long as she was there — get the blood and urine tests taken for which she was long overdue.

The emergency room only had one doctor on the premises. And then it turned out that the hospital itself didn’t have ANY doctors on the premises when they finally admitted my mother just after midnight.

The nurses, however, were outstanding — except for one. But there’s always one, isn’t there.

While it turned out that my mother hadn’t broken anything, she did have a major urinary tract infection going, and they hooked her up to an intravenous antibiotic.

HOWEVER, they couldn’t hook her up until they could calm her down, since her dementia was in full swing and she kept trying to fight everyone off. Solution? Drugs, of course.

EXCEPT we have yet to find a drug that will calm her down. Stuff like Xanax has the reverse affect. They finally had to resort to morphine. As long as she was totally knocked out, everything was fine. (Well, fine for her. My brother and I got no sleep, and the most we ate in all that time were cheese sandwiches and potato chips from the nearby convenience store. My reflux was starting to protest.)

Recommendations from two neurologists indicated that she needs 24/7 supervised care. With relentless pressure from me, my brother has agreed to interview home health care workers from a private-pay operation that provides aides trained in geriatric caregiving. Taking care of a 93 year old with severe dementia and all sorts of aches and pains is not a one person job. “Just keep her comfortable,” one neurologist advised. (If only!)

When the Social Worker came in to tell us what our options would be for help when she got home, she suggested a place (private pay) that provided home aids that specialize in geriatric care. Being the assertive “bitch” sister that I am, I had her immediately call the head of the outfit, who came right over to give us the information even before we left the hospital.

One or two of the possible aides are supposed to come over tomorrow for interviews.

There is enough money available to pay for help with her care, but it’s not under my control.

My brother believes that I am a lying, controlling, manipulating bitch.

Whatever.

I’m just going to do whatever I have to do to make sure that my mother gets the compassionate care she needs to have at this stage of her life.

Now, at home, she often speaks gibberish, will fall down if she tries to stand up or walk by herself (which she constantly tries) and has a battery of meds that we all hope will make it easier on everybody. Much of the time she cries — one breath in and on the outbreath a two-note loud sigh. Over and over. For hours at a time. This is not new; it started months and months ago.

I can’t wait to get back to my home. And I want to make sure that my brother hires someone good to help him with my mother’s care. I just don’t know how long I can last here. My sciatica is really acting up from having to help her up and down.

There is no perfect solution to all of this. I’m just too ornery to give up trying for a decent one, for my mother’s sake.

ending entropy

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Entropy is a term used to define (among other things), a process of deterioration of a system.

In terms of technology, my life seems to be one big process of entropy. My old desktop died a slow death over the past several months. Last week, I totally fried the new laptop that I inherited from my once husband. (That frakkin’ Vista!) Now I’m on a old little laptop that does not hold the wifi settings that I need to get online. It’s only a matter of time with this machine as well. How do you end entropy?

I think the first thing for me to do is cut my losses. and not spend any more time and money trying to fix messes of machinery that have aready joined the slide into infinite entropy.

I have to start over, with an inexpensive CPU with XP that can keep me online. If I ever have enough money to get a new laptop, it will be a Mac. That’s a big IF.

And then there’s my mother, whom I somehow have to rescue from the entropy of her care by my brother. I’m leaving tomorrow, driving into what I know will be a battleground for what’s left of my 93 year old mother’s demented life. She deserves better than she’s getting.

She fell yesterday, and the doctor wanted her to go to the emergency room, but that didn’t happen. I want to take her there when I arrive tomorrow. It could wind up a fierce and legal battle if things do not change to her benefit.

Took a sleeping pill to calm me dowm.

TOMORROW’S ANOTHER BATTLE FOR FREEDOM AND INTEGRITY AND SELFLESSNESS.