too soon old, too late smart?

Under his white cassock, the good-looking young priest is wearing sneakers and jeans. I can see them peeking out from underneath the garment’s neat hem. The inside of the 110 year-old ornate church of my childhood is colder than this winter morning in the urban outside. The seat of the wooden pew is freezing my butt.

The church’s boiler has stopped working, and all through the service periodic clangings continue to irreverently punctuate the “words of the Lord.”

I am sitting in the exact spot in which I sat almost exactly a month ago. That was for my mother’s funeral service. This time it’s for my aunt’s (the wife of my father’s brother). They say that death comes in threes. I wonder if my 87 year-old aunt sitting to my left will be the third. I hope, instead, what will count is my dead desktop computer, which, at the moment is awaiting a possible resurrection on the repair desk of my most trusted geek. These are things over which I have no control.

I only go back to my home town for weddings and funerals, all of which include rituals celebrated in this spectacularly vaulted nave that is bordered by detailed mosaic depictions of the Stations of the Cross, above which large elaborate stained glass windows tell the rest of the story. The aesthetics of the church inspires awe, even without the faith that sustains it.

Neither my cousin nor I join in the line to receive Holy Communion. It has been decades since either one of us believed and practiced what we had been so carefully taught during our 13 years of Catholic schooling. When we sit around the table hours after her mother’s burial, my cousin and I and dredge up shared memories of some of our more innocent times — the May processions in which we tossed rose petals as we walked down the aisle (“one, two, three, this is for you, Baby Jesus…”) My mind slips away to the less innocent scenes from the movie “The Polish Wedding.”

We spend hours sitting around that table — my cousin and I and our remaining paternal aunt and uncle — sharing family stories and attitudes that had somehow eluded me during the 17 years I lived in the bosom of a clan that had, apparently, quickly separated into two camps — the “laws” and the “in-laws,” although which was which depended on whose perspective one adopted.

The story that surprises me most is one associated with the version my mother told of a seminal event in my life about which I once wrote a poem. In my mother’s version, her mother saved my young life; in the “in-law” version, my other grandmother believed that my mother was withholding medical treatment for me in favor of “leeches.” I see now that it became a stand-off between two matriarchs, and family relationships through the generations suffered as a result.

While it was my mother’s side of the family that I came to know best, it was an aunt on my father’s side who most impressed me, even though I only knew her for a very short while in my pre-teens.

Eleanor married my Uncle John, to the chagrin of my paternal grandmother. Eleanor was a free spirit, odd and artsy and strikingly beautiful. She had her kitchen ceiling painted red, she started to teach me how to sketch faces, and she sewed me a lavish ruffled robe that I wore until I could no longer button it across my chest. Suddenly (or so it seemed to me) she and my uncle were gone — moved out of state, out of touch.

And, in our post-funeral table conversation with my relatives from that side of the family, I learn just how strict my paternal grandmother was, refusing to accept her non-conformist daughter-in-law and leaving the couple with little alternative but to create a life for themselves apart from family expectations. I begin to understand the difficulties that my mother had in fulfilling her daughter-in-law role.

Eleanor and John had children — five, I think. I have never met them or been in touch with them. My cousin has but lost track of their lives long ago.

We have been a family burdened with expectations, and both my cousin and I acknowledge (with some private pride) that we opted not to meet a select number of them.

We are the matriarchs, now — much different in attitudes and expectations from our foremothers.

At least we hope so.

happy belated blogaversary to me:
9 years and counting

I started blogging on November 29, 2001, and the old bloghome is still here, reminding me why I started and how I grew as a “personal blogger.” I still keep in touch with many of the bloggers who were around at that early time in blogging history, only now it’s mainly through Facebook.

In reading some of my old posts, I realize that I still write about the same things: politics, injustice, being a woman, ordinary magic, getting older, being me. Things change. Things stay the same.

Let’s see if I can make it to year 10.

the chalice of pain

This is my response to Magpie Tales’ visual writing prompt #42. You can find the responses of others by going here.

The Chalice of Pain

Father, if it is possible, let this chalice pass from me! Father, all things are possible to thee, remove this chalice from me!

Pain. We all feel pain. We all would rather not feel pain, and those in pain usually can let you know where it hurts and how badly it hurts.

Except if they have dementia.

There is a false assumption that those with dementia don’t feel pain because they often can’t articulate that fact in ways that are obvious — especially with words.

From “Pain and Dementia,” referenced above:

Over time your family member may lose the ability to speak or may not make sense when they do. Therefore, it is very important to be able to recognize behaviours or actions that indicate pain. Some of these pain-related behaviours include the following:
* frowning, grimacing, crying
* swearing, moaning, calling out, noisy breathing
* fidgeting, pacing, rigid posture
* guarding an area of their body, not wanting to move
* hitting or striking out
* withdrawing or resisting when someone is helping with personal care
* refusing food
* change in appetite, rest periods, or sleep patterns
* increased confusion, crankiness, or distress

From “Behavioural Changes”:

* Sudden changes in behaviour are important to recognize as these are often the only clue that an older person is sick, getting worse in their dementia, becoming depressed, or having a side effect from a new medication.
* Attention to your family member’s behavioural and psychological symptoms are key to improving and maintaining their quality of life.

A recent PBS Frontline program, “Facing Death,” documented the pain suffered by both family (emotional pain) and those dying from dementia and other illnesses (both emotional and physical pain.) You can watch the program at the above link. Also of great insight are the comments left by viewers.

From “What happens when elderly people die?”

…fewer than one in five people can have a peaceful end, since ‘dying is a messy business’ for which relatives are unprepared. He continues: ‘Too often, patients and their families cherish expectations that cannot be met, with the result that death is made all the more difficult by frustration and disappointment with a medical community that may be able to do no better.’

Relatives who expect aware deaths may become angry and turn their anger onto doctors and nurses when death takes other forms. Dying people often need psychosocial support, but the potential for introducing this occurs only when the dying phase is identified. This is not always possible in trajectories 2 and 3….. [2) long-term disability with periodic exacerbations and unpredictable timing of death that characterize dying with chronic organ or system failures (some cancers that respond to treatment and then relapse come into this category); (3) self-care deficits and a slowly dwindling course to death from dementia.]

After watching the Frontline program and hearing how the doctors explain the options to the families of dying patients, it seems to me that there needs to be more honesty from the medical profession about the dying process, its inevitability, and the benefits to the dying of making those patients as pain-free as possible.

Maybe, because I grew up above a funeral parlor operated by my father, a funeral director – maybe, because I sat at my father’s bedside while it took days for him to die of cancer (his mind was alert and he chose to die at home with a certain amount of pain) – maybe because I survived the excruciating pain of a breech birth and thought I had died and now I’m not afraid to die – I feel strongly that, when death is close at hand, it should be welcomed as a relief from pain and that pain (for example, of old organs failing, of agitated dementia) should be aided by pain-relief medication.

On my bookshelf is “Final Exit,” which I bought a long time ago out of curiosity about peaceful “self-deliverance” when my time comes, especially if that time comes riddled with pain.

But it becomes a lot more complicated if a form of dementia has stolen my ability to communicate my pain and my wishes. My daughter knows that I’d rather die in peace than die in pain.

In the story of the Garden of Olives, even Jesus pleaded for the chalice of pain to be taken from him. No one wants pain, although we often are willing to bear with a certain amount of it if it’s going to get better. But the pain of dying does not get better.

Somehow we need to be educated about that fact so that we hold the best pain-free interests of our dying relatives in mind.

The Deathwatch Diary (One)

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?

c’mon Congress, give us a needed New Deal

I have plagiarized from Ronni Bennett’s post and have sent the following message to my Congressional legislators. You can do the same, easily, by starting here, a site through which you can identify and email your legislators.

Please support Ohio Democratic Representative Marcy Kaptur’s bill, HR 4318, which would authorize the president to re-establish the CCC, a program that put millions of young men to work during the Great Depression. Those young men were doing mostly physical labor. Kaptur’s bill eliminates the age and gender limits, and keep in mind that for every project involving manual labor, there are related support jobs that older people can do.

To me, this a no brainer. We are in desperate times. Young kids just out school can delay their career dreams a few years (as they did in the Depression) to earn some money while helping rebuild the nation’s infrastructure, and it would be a lifeline for older workers who otherwise have few options.

I can’t think of a better way to spend the next “stimulus” now that the federal government has so munificently helped out Wall Street workers.

the end of summer

My daughter grew several different tomato plants from seeds, and they all came up — pear tomatoes, German striped, persimmon, purple, and others I can’t remember the names of. I have been in tomato heaven. I eat them like fruit.

It’s the end of summer now, and the last batch is ripening on the vine despite attacks from tomato horn worms.

I didn’t do the kind of gardening this year that I used to love to do. Too tired, I guess. It’s getting harder and harder to get down on and up from my knees. And, for some reason, a lot of the herbs and flowers I planted in the spring didn’t make it.

In my early married years, before I cultivated a green thumb, my husband used to joke that I killed even plastic plants. Maybe I’ve come full circle.

I am looking forward to autumn. It’s my favorite season. The weather suits me, as do the colors.

It is the end of summer, and I will miss sitting on the canopied swing in our front yard. It has become my favorite place to hang out.

It is the end of summer, and I wonder just how much longer my mother can go on.

stasis

This is my response to Mag 30 visual prompt at Magpie Tales.

will it rot or not

That’s how I’m feeling about my life right now. I took my bite. So what. I wait for my mother to let go of a life no longer worth living and my son to find a life worth living with passion. And I wonder if my life has been worth living. Will the apple rot or finished being consumed with relish. And does the larger menu matter any more. These are questions that I ask as statements. Maybe the core of this metaphor is that I just don’t know anymore. As Eve found out, sometimes one bite is all you get before being tossed out of Eden.

I am a victim of elder abuse

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.

independence

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

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.