Category Archives: dementia

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.

chicken soup as catalyst

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I made a big pot of chicken soup the other day (see previous post).

Except for echinacea and goldenseal, I have never found any concoction that does battle with a sore throat and cold better than chicken soup. Of course, you have to add lots of garlic and onions. I also add a tablespoon of apple cider vinegar to leech the calcium from the chicken bones into the broth. And I load it with all kinds of other vegetables, which I discard after I have strained them out of the soup.

I picked out the wishbone to take home to my grandson so that we can both wish that his run-away cat would come home. That darned cat has been gone for almost a week — gone from the house (he’s been an indoor cat) but not from the property. He shows up every night on the outdoor camera that has been set up near the dish that’s left outside for him. I’m betting that he’s having the time of his life, and that even my outstanding chicken soup would not lure him back into captivity. On the other hand, he might come back for the love that awaits him behind that door that he now just ignores.

As I was ladling the hearty broth into freezer containers, I had flashes of some lines from an August Strinberg play that my once-husband once directed. (He was a big Strindberg fan.) It had something to do with servants discussing the fact that even though their employers got to eat the meat, the servants got the broth, and that’s where all the nutrition really is.

After my broth has cooled in the containers, I skim off the chicken fat accumulated at the top of each. I pick some up on my finger and taste it. Yum. Tasty cholesterol. When I was a kid, my mother would save the chicken fat from the soup and use it to brown chicken pieces for chicken fricasee. (Does anyone make chicken fricasee any more?)

My mother made chicken soup a staple in our house when I was a kid. Back then, in the 1940s, she used chicken necks and wings because they were cheap. (That was before chicken wings became so popular, of course.) I would help her pick out the meat from among the tiny boiled bones so that she could make chicken salad.

These days my mother doesn’t seem to like the watery consistency of chicken soup, so I thicken the broth into gravy, add the boiled chicken and freshly cooked vegetables, and turn it all into a hearty stew.

These days it’s hard to find food stuffs that mom really likes Something she devours one day she will refuse the next time it’s offered.

That’s the one thing you can count on regarding dementia — you can’t count on anything working more than once.

As it should be, there are all sorts of experiments going on to find ways to prevent and stall the progress of Alzheimer’s and other forms of dementia. What I wish is there was a better understanding of how to “make comfortable” people like my mother, who are at the far end of the journey and for whom there doesn’t seem to be any medications that are able to give her the peace of mind and pain-free body that she deserves.

I’ve already warned b!X that, before I get that bad, I will move in with him in Oregon, where they have a Death with Dignity law.

Or maybe I’ll just OD myself on chicken soup.

old remedies, old bones

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I’m back in the place I left. Blood sometimes takes away the choice.

Plans hardly ever go as planned around here. New roofs sag, ceilings get cracks, seeds planted and nurtured succumb to frost, walls never get painted.

My plan for this trip to visit my mother was to help a new live-in aide acclimate to my mother and to this forsaken place. But, after an on-site interview, the aide changed her plans and is not coming after all. I can’t say I blame her. It would take a kind of frontierswoman personality to take on the situation here.

So, I’m here, instead to nurse my mother through some kind of sore throat. Or cold. The doctor said it is not strep.

She can’t seem to swallow pills any more, so I’m giving her liquid Tylenol. There are two bottles here, one is labeled “sore throat relief” and the other is “rapid blast.” The ingredients of both are identical. I guess the marketing ploy works, because here I am with two separate bottles when one would do When she wakes up at night, I make her tea with lemon and honey..

I am making a big pot of chicken soup. A whole chicken. Five cloves of garlic. Lots of carrots and celery. A parsnip and a turnip and onions. I wanted to put fresh parsley in the for Vitamin C, but the grocery store was out of parsley. Something to do with Easter and eggs, I’m supposing. I will cook the soup for hours and, hopefully, she will drink the broth.

She hurts all over. Our bones are tired.

I miss my grandson, he of the wall of hats, one of which belonged to my dad and is over a half-century old. Here he is, wearing it, acting out scenes for Mr. Magorium’s Wonder Emporium

From my daughter’s post on Facebook: Mr. Magorium: “You don’t have to be happy that I am leaving. All I ask is that you turn the page, keep reading, and let the next story begin. And when someone asks, tell them my story, with all its wonder, and end it, simply, ‘he died’.”

Ditto.

April reveries

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We are all remembering that it was a year ago today. I see people smoking and I want to tell them. I want to tell them that they should have been there to see where it leads, what it leaves behind in those who feel his absence as much as they felt his presence.

I took a Valium this morning before my spinal MRI. I am still relaxed in reverie.

April is such a neither month — not yet really spring, still capable of the few flurries I spotted yesterday on my way from the mountains to the valley.

A wedding in April is a weather-chancy thing. My cousin’s daughter’s this past weekend took place in a venue that featured a panoramic view of the Hudson River and the foothills of the Catskills. If it had been a sunny day, the view would have been breathtaking.

The cousins of my generation sat together, recognizing that we were now the “elders” of the family, as our younger relatives stopped by every once in a while to chat with us. On that dreary April evening, the music and dancing and revelry reminded us that warmer vistas are just beyond sight. Youth and hope and love ruled for those several hours as a muted sun slipped behind the hilltops.

One of my cousins, who married into a family that, for generations, maintained a 24 room house in what is a nicer part of the city, hosted some of us from out of town. The house is theirs now, her and her husband, who spend part of the year in Florida. It’s a house filled with generations of ghosts, all of those who lived and died here, family and extended family. For generations. They might sell it if they could; but who wants a 24 room house in a one-family residential neighborhood. For now, it works as a home-base for a number of the clan, including their daughter and future son-in-law.

My cousins and I, for the most part, are very different — at least our lives meandered down different paths, mine having taken me a long way to the left. But they are tolerant of my politics, my lack of religion. They are probably more tolerant of my viewpoints than I am of theirs. They are able to interact and relate with me and with each other in ways that ignore all of those values that might divide us.

As we sit around the breakfast table over the kinds of food we all seem to like (little things, like corn toasties — which we don’t like to toast — and Polaner All-fruit instead of sugar-ridden jelly or jam) they make me laugh. They do not pressure, they do not manipulate. Together, we are the kids we were who grew up playing “Flies Up” on their front stoop, even through dismal April afternoons.

We relax into the neither-nor of April, a time of its own, of our own.

There is another family wedding coming in June. I will be there again, in the bosom of family.

Closer by, my mom slips inevitably into dementia’s final horror. I stopped her from eating a paper plate the other day. I strain to remember the Polish I used to speak so fluently so that I can understand her.

I am not there now, I am home in Massachusetts, but I will be going to visit her in a few days to help set up space for, and help to acclimate, a live-in helper who speaks Polish.

Perhaps I should take my Valium with me. After all, it will still be April.

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.

lessons from the future

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Mike Brotherton, scientist and SF writer, lists this among the reasons he likes science fiction:

Seeing sides of humanity possible in no other way. How would we react to the discovery of aliens? Or aliens much smarter than us? Aliens with different belief systems and good reasons for having them? Or technology that gives us opportunities and challenges we’ve never had before? Or we will have, but not yet?

As an avid science fiction reader for more than 50 years, I continue reading sci fi novels because they push the boundaries and bonds of my attitudes about societies and beings very different from what I’m used to. They challenge me to examine my beliefs about how to deal with uncompromising adversaries.

Contemplate, for example, the following descriptions of alien cultures whose values clash with those of most of the inhabitants of planet Earth:

Considered within their own ethos, the Aalaag are extremely just masters — mistreatment of their human “cattle” by one of their kind is a serious offense. But they demand obedience and a rigid code of conduct that rankles the human spirit. Actually, the Aalaag are a conquered race themselves, fleeing from some unnamed but awesomely powerful enemy that took their home worlds. They are in essence warriors, tall and proud, each with a collection of personal arms and possessing a Spartan outlook on their condition. Every single Aalaag views duty as the highest virtue, and all duty is directed towards one day regaining their lost worlds. The races they themselves conquer are used to exploit resources in support of this ultimate goal.

The Psychlos don’t just conquer planets. They don’t just conquer galaxies. They conquer universes. Only they have the secret to instantaneous teleportation. And one of their biggest operations is the Intergalactic Mining Company, which knocks natives back to the Stone Age and then systematically strips their planet of all available ore, almost down to the very core. Oh, and the Psychlos find cruelty to be “delicious.” The crooked — even by their standards — Security Head of Earth is named Terl and he is scheming to get rich by “training” native humans to do some illegal mining for him.

As humans are a culture of individuals, as ants are a colony culture, the Fithp are a herd culture. [snip} — and being herd creatures, they do not understand the concept of diplomatic compromise… you either dominate or you submit.

….these tongue-in-cheek tales of derring-do and human ingenuity in the face of human diplomatic incompetence have sold quite well for many years. In most of them, there is an insidious plot behind whatever the current weird aliens are doing that is being masterminded by the Groaci. No slouches at the diplomatic bargaining table, the Groaci are nonetheless almost incapable of dealing squarely.

Although the “worms” are the most visible face of the Chtorr, what we have here is nothing less than the attempt of an entire biosphere to conquer Earth.

Sometimes there is no way to compromise with “alien” beings and cultures, and so the decision is to go to war with them. But is that really the only solution?

A friend of mine from college, a retired CIA polygraph examiner who has written several books on the subject, emailed this article from February 3rds New York Post.

After my post yesterday about wanting to bring back the “banned” movie Song of the South, I hesitate to share my views regarding what the Post piece by Ralph Peters suggests about the way we (America) deal with our “alien” enemies.

But Peters, while beginning his piece with a rather shocking assertion (that motivates you to read the whole article), ends with these statements that contain some common sense:

The point isn’t to argue that Afghans are inferior beings. It’s just that they’re irreconcilably different beings – more divergent from our behavioral norms than the weirdest crew member of the starship Enterprise.

As an analytical exercise, try to understand Afghanistan as a hostile planet to which we have been forced, in self-defense, to deploy military colonies. How do the bizarre creatures on that other planet view us? What do they want? What will they accept? Is killing us business, pleasure – or both?

Are there tribes among these aliens with which we can cooperate? Which actions of ours inflame the alien psyche? What will the alien willingly die for? What does the alien find inexplicable about us? Must we preserve a useful climate of fear?

Do we intend to maintain our military colonies out there in deep space? For how long? Can the angry planet ever be sanitized of threats?

Of course, there’s more in play than images of our “starship troopers” combating those alien life-forms that call themselves “Taliban.” This exercise is just meant to break our mental gridlock, to challenge our crippling assumption that we’re all merry brothers and sisters who just have to work through a few small understandings.

This is a “war of the worlds” in the cultural sense, a head-on collision between civilizations from different galaxies.

And the aliens don’t come in peace.

This is what’s bothering me: America (or rather those in power in America) seem to believe that it is this country’s right to go out and convert those “alien” cultures to our version of capitalistic democracy That missionary zeal (as all missionary zeal does) generates dislike and distrust — and even hatred, in the case of the Taliban — among those we consider “others.”

Sci fi novels present a variety of “what if” scenarios in which the protagonists have to learn to survive — despite, within, or alongside of — disturbingly “alien” cultures.

Maybe someone should suggest to Obama that he assign a sci fi reading list to his international and military advisers.

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.

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.