Category Archives: caregiving

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.

family values

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No, this is not some kind of rant about that political football.

This is about my family (of origin) and how we deal with each other, the value we place on each other and on ourselves.

As I was growing up, “love” was equated with money. My parents showed they loved us by buying us things. I never refused any of their “love.” It’s all I knew, and I grew to love “things.” Until I immersed by self in therapy — years after a lot of damage was done.

I have a sibling. We have become about as opposite as two offspring from the same parents could be. Maybe because he never dealt with those warped family values.

And now I find that I am going to have to battle him for control of my mother’s assets and for her guardianship. She (93 years old with dementia) is in his care, and he doesn’t know how to care. I can’t bring her to live with me here at my daughter’s, and after the last eight years taking care of her, I need to take care of my own health and well-being.

I have avoided visiting my mother and brother for almost a month because he treats me so awfully. And I can’t stand watching how he treats her. When I go there, I wash her up so that she doesn’t smell, I change her sheets, her clothes, wash her hair. I dance with her each night before she goes to sleep. I make sure she takes her meds and eats nourishing food. I am tired, but she is being treated abusively when I’m not there.

He can use her assets to bring in professional help to take care of her. He won’t.

I feel angry and stupid and tired. I wonder where that “Kali” part of me went. I need to find that part of me to help me win the battle ahead.

I am going to be 69 in a few days. I think I need some Geritol.

a good day for a poem

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It’s snowing outside, and I’m marooned here with my mother and brother for another day. Mom is sleeping, exhausted just by getting up to eat. My sciatica is acting up and I have a pimple blooming on my chin. (That’s such a perfect metaphor for who I am!)

Several weeks ago, I waded through my stacks of poems and picked out a bunch of short ones to blog once a week. Of course, they are waiting for me in my new home, but I won’t be back there until tomorrow.

But today seems like a good day for a poem, especially after reading my daughter’s poignant post of yesterday.

So, instead of one of my poems, here’s one of Jim Culleny‘s — because it seems like a good day for this particular poem.

DUST
by Jim Culleny

A restoration of faith
(if only for moment)
makes that moment great
and raises dust.

Dust? Don’t wait.

Dust drifts and settles but can be shaken off.
We do ourselves a justice when we shake our dust.
Once it’s shaken off, work we must
to raise more dust.

Change raises dust.

In our metier (before we return to it)
dust is a must.

Well, mom’s up. So much for engaging with the world of the internet.

sleeping in the bed you made

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“Jak sie lozko poscieli, tak na nim wyspacz,” was what the old women in my family said when we youngsters complained. “The way you make your bed, that’s how you have to sleep in it.”
I was thinking of this phrase as I drove from Massachusetts, via Albany, to my mother’s/brother’s. I was in Albany for an overnight so that I could get together with my long-time women friends for our annual holiday dinner.
When I got online today and read Ronni Bennett’s two most recent posts (Are You Satisfied With Your Life and The Real Economic Story), the admonitions of my female elders came to mind again. (Ronni always seems to be two steps ahead of me.)
While in Albany, I stayed with one of my friends whose home looks like the pages of a decorating magazine. I stayed in a guestroom bed, which was, well, lets just say, well made. It was a pleasure to lie on it and to wake up in it.

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This friend, now retired, is not wealthy, but she is certainly is better off than I. She can afford a twice a month cleaning lady and someone to take care of her lawn and shrubs in the summer. If her driveway needs paving, she pays to have it done. She spends time where it’s warm when it’s cold here in the Northeast, and she pays an enormous amount for long-term care insurance. I think she diversified where she put her capital enough so that she wasn’t terribly affected by the Wall Street fiasco. She’s a few years younger than I, more than a few pounds lighter, and she’s always been more attractive. While there are times that I envy her lifestyle, ultimately and finally, I have to sleep in the bed that I made.
Am I satisfied with my life, as Ronni asks? I made my choices and took my chances, and things could be a lot worse. My only DISsatisfaction is that I’m not totally moved yet. Will I be satisfied then? I don’t know, but the last three years living in my brother’s house while I take care of my mother have been pretty miserable. So I guess it’s all relative.
Reading the Huffington Post links that Ronnie provided (here, here, and here) certainly makes me grateful for what I do have.
My bed might not be of designer quality, but at least I have one.

deadly beauty

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The ice storm hit us Thursday night, knocking out electrical power for a while. I didn’t realize how bad the storm had been further north until I set out for Massachusetts this morning with the car radio reporting on the tens of thousands of New Yorkers still without power.
I drove across the swaths that the ice storms devastated, paralyzing the trees along the way with thick crystalline bonds. I wished that I hadn’t packed my camera (somewhere in the back of my car that was loaded to the roof with boxes and bags of my life’s accumulations, including my desktop, printer, and monitor and more cables than I could possibly have use for).
The landscapes I passed looked like stage sets for the Snow Queen or a scene from some alien planet. When I finally stopped at a rest stop, it was closed (no power). The other rest-stoppers were as unwilling as I to use the outdoor port-a-potties in the 15 degree weather. But many of them went back to their cars for their cameras to capture the bushes outside McDonald’s, their thickly iced branches arched over like so many alien tentacles. The sun was out and the ice looked lit from within. I had no idea under which layer my camera was buried, so I passed up the chance for some amazing photos.
The news on the radio reported that some people will be without power until Monday. Several towns had curfews to keep people from driving over icy roads at night
It’s a little chilly here at my daughter’s, even though the heat is on. We have to figure out how to get more heat into my part of the house. I love it cold when I’m sleeping, but at the moment, I’ve got cold feet blogging.
I am worried about my (92 year old) mom — not because of the cold (and my brother has a generator in case of power failure). I’m worried because the dementia is getting a lot worse, and she cries and wails almost all of the time. My brother doesn’t want to sedate her, which seems to be the only thing to do at this point, as far as I and the doctor are concerned. I can’t tell how much pain she’s in, but when she moans, “oh..oh…oh….oh..” and seems to be in great distress, I can’t help wanting to give her something more than Tylenol to relieve whatever it is, to ease her brain as well as her body.
But my brother won’t let me, believing that there is no drug that will make her feel better but not knock her out. There might well not be. But I’d rather knock her out, take the pain and anxiety and fear from her face, give her some peaceful sleep, a respite from the demons of decay.
I can’t stand to have to stand by and watch her suffer. And that’s one of the reasons that I’m here and not there.
Our doctor ordered a nurse to come in once a week and see how’s she’s doing. My brother is objecting, for reasons that are only relevant to him and his demons.
Well, it ain’t over til it’s over, and I might have to get her out of there. But if I do, I will have to put her in a nursing home, and I don’t think that she would survive very long there.
A former colleague — one known for his series of extra-marital affairs — once told me that he could live with guilt.
I don’t live with guilt that easily.

cold comfort

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It’s the first snowfall here in Massachusetts. If I were at the address that I am leaving, I never would have gotten out to enjoy the day. My daughter’s nuclear family went outside to play in the snow (and clear off my car). I just hung out, took some photos, and generally was delighted to be, finally, in the midst of laughter and play.
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I will be driving back to my mom’s/brother’s tomorrow. It’s supposed to be a nicer day — for a drive, that is.
At least I didn’t fall down and break my hip, like fellow elderblogger Darlene of Darlene’s Hodgepodge. It might be cold here, but at least I’m comfortable, unlike Darlene who lives in warmer Arizona but is still in rehab. Mend soon, Darlene.
I feel as though I’m on vacation in my new space. I’m not totally moved in yet, and there will be a lot of organizing once I get everything here. But, for now, it’s slow, relaxed days and evenings — which is good in some ways and not so good in others.
It leaves me time to think. About my life and what kind of person I’ve been.
The truth is, in the past, I was neither a good daughter nor a caring sister. I was not a particularly good spouse or mother, either. I had my own ambitions and my own dreams, and I always managed to fit them in, even at the expense of others. I guess that watching my daughter with my grandson reminds me of all the things I never did for my kids as they were growing up.
Maybe these feelings are prompted, now, by my guilt over leaving my mother in my brother’s care, of forcing my brother into the position of having to figure out how to give/get her the care she needs or face legal consequences. If assume her guardianship, I will have to put her in a nursing home, and that will break all of our hearts.
Cold comfort.
Until I hear my grandson giggle or wake up from a restful night’s sleep. I can live with the cold.

I’ve given out, given up, given in

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In a way, it’s a relief. I don’t have to go through all the complex strategizing to get him to compromise — only, each time, to come up against a stone wall. Actually, it’s more like being dumped into a vat full of jello. Either way, I get nowhere.
I’m out of energy and stamina. I give up. He can take care of our mother any way he wants.
He has arranged with a female musician friend of his to come and stay with our mother. Every once in a while. No set schedule. I’ve met her. She’s nice enough, and, as far as I can tell, my mother likes her.
I wanted him to hire someone from an agency who is trained to deal with dementia patients. That is, who knows what kind of patience is necessary to deal with someone who pretty much lives in her own personal reality, which sometimes overlaps with a more objective reality — but even then, with her own emotional twist. But he wouldn’t agree to that.
So, I give up, and I’m intellectually and emotionally distancing myself from the situation. I will come in once a month to visit my mom. I hope that we both can take the emotional stress. It’s almost better if she completely forgets who I am.
I’m hoping to be completely out of here and out of primary caregiving by the end of the year. It seems like forever.

it was only a matter of time

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My mom fell down. I wasn’t here. I was at my daughter’s, when my mother tripped and fell. My brother was with her; he said she lost her balance (which she does occasionally) and fell in his kitchen. She has a big bruise on her bad shoulder. And, she says, everything hurts.
When I got back here the day after she fell, against my brother’s wishes, I called an ambulance take her to the hospital. She couldn’t walk unless we held her up, and she was in a great deal of pain. My brother wanted to take her to a walk-in medical office that has an X-ray machine; we’ve taken her there before. But I didn’t want to take the chance. Suppose she had broken something.
The hospital X-rays showed no broken bones. A CAT scan of her head showed no pathology. It did show “volume loss,” however. (Like that’s a surprise??!!) The attending doctor wanted to keep her at least overnight because she was in danger of falling again. He wanted to hydrate her and give her a sedative (since she was agitated) and some tests, including blood. If she had stayed overnight, she would be been eligible for Medicare in-home help. My brother insisted on taking her home. So, we did.
She slept soundly that night and way into the day. Then she ate and went back to sleep.
And it has all gone downhill since then. She woke up at 3 a.m. this morning, incoherent except for crying that she wanted to go home and that everything hurt. I gave her an arthritis strength Tylenol, which seems to work well on her pain, and eventually, she went back to sleep. She repeated that scenario at 8:30 a.m. She gets up to eat something, and then goes back to sleep. While she’s up, she’s barely communicative.
The attending physician in the hospital gave me a script that says my mom needs one-on-one care 24/7 because there is a great probability that she will fall again unless someone has an eye on her constantly. .A nurse is coming tomorrow from the county’s Adult Protective Services to evaluate her condition and her living situation. That is part of my strategy to put as much pressure on him as I can to hire someone to come in and help with her care while I’m going through my move — and, of course, after.
But it is only a matter of time.

stuff and responsibility

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Today was supposed to be my official move day, but I’m bogged down by stuff and responsibility.
So, instead, the move has become a slow one as I sort and pack and dispose of. At the moment, my car out in the driveway is packed with household stuff that I will take to the Salvation Army tomorrow. And then, next week, I will pack the car with another load that I will drive out to my new space at my daughter’s.
Actually the slow move is working out OK because I just can’t shake my responsibilities to my mother, especially since she has suddenly become very weak and wants to sleep a lot. And so I spend a week here taking care of her and then drive out with my packed car to spend several days setting up my space and playing with my grandson. The drive out is like a mini-vacation in and of itself — I have several hours all to myself to think and surf between NPR and country western music stations. Sometimes, I even sing out loud, moving my shoulders to the steady beat while cruise control takes over.
Stuff and responsibility. I’m carrying a lot of baggage.