Process #3: I never had a conversation about sex with my sons — Reposted

The following is my post from May 22nd.  It was going to be my last because I       was on my way to finding my voice.  Yeah!  My confidence and purpose would keep me writing without the “views” and “likes” of  wordpress.  After having it up for several days though, being embarrassed by revealing secrets, I took it down in order to censor it.  I also wanted to rewrite it in four separate pieces, as there was much to add to make the story complete.  So far I’ve done nothing, and am putting the post back up just as it was.  

As I push the publish button tonight there are 713 comments on the Times article.

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AshleyB/BrooklynPaperCo

AshleyB/BrooklynPaperCo

Today’s Times article Unexcited?  There May Be a Pill for That by Daniel Bergner about the research to find a “desire” pill for the many, many women who are unable for whatever reason to enjoy lovemaking although they so badly want to, has me laughing.  Do not quote me out of context.

Laughing because just recently I read another article that hopefully has put an end to my pain as I tried to understand, appreciate and accept my own struggle with my sexuality, and if I had written this last week, perhaps my article would be on the first page of www.nytimes.com.  Probably not!

Laughing because women have been saying “please no, I have a headache” for a very long time.  Others try, others pretend.  What has sparked this current research?  Is there a woman behind it?  We know money is behind it.

Laughing because this article does not mention marijuana, the natural wonder drug, an herb, if that makes any difference.  Marijuana happily is not yet, and hopefully never will be in the hands of big pharma.  One of the more unusual messages to pass through my inbox recently was a proposal that the post office become the sole distributor of marijuana.  Could that be possible?  Just keep it simple, keep it home-grown, keep its quality and diversity, add a tax but keep the price low, and keep it organic and away from agri-business.  No one needs to inhale Monsanto’s poisons.  

Laughing because I wonder if this pill will be available only to women who are married and of childbearing age, do not work for religious organizations, and have sworn to their congressmen that they will only use it if they are trying desperately to have a child.  Making it necessary for husbands to sign these agreements would help keep us women in line.  Filthy rich men could also have signing privileges and receive tax breaks for their purchases. Women who use the pill illegally would be reviled on national television and would be sent to private prisons where they would be sexually harassed and humiliated as part of their rehabilitation. 

Laughing because all we women need is another runaround with religion, superstition, Republicans, the men and unbelievably even some women who think of us as “s—ts” (gosh, I can’t even write the word without shuddering) if we should equate any sort of feminine pleasure with sex.  

Laughing because if there really is an interest in finding a way for women to enjoy lovemaking or just plain sex, why has no drug company jumped on the manufacture of a generic Estring, which makes sex so much more pleasant for post-menopausal women and their partner/s.

Laughing because so many of us women have come to believe through experience and indoctrination that men think sex is dirty, a means of subjugation, a boy’s club prerogative, and then, so do we – think it is dirty, a means of subjugation — and therefore are conflicted about it.

We’ve been brought up to believe some things are good or bad, natural or abhorrent, blessings or sins.  Some of us have had good experiences, good touches, and seen loving relationships to emulate.  Others of us haven’t.  Our introductions and experiences with our sexuality vary immensely.  Our minds and bodies very often don’t work in unison.

I was very happily married for twenty-five years to a man who shared a similar mindset about love and lovemaking.  It was not very liberated.  I was never unfaithful, never even thought about it.  Life was good.  Know though, that I married in my late thirties and didn’t believe in waiting.

Eventually, some time after my husband passed away, I started to think about how nice it would be to be with another good man.   

My first date told me over coffee that he didn’t like women to arch.  It took me a little longer to realize he did not like women at all.  I’m not exactly sure what he liked, except perhaps himself.  That’s not right.  He may have thought himself more important, smarter and better than any one else, and that the world revolved around him, but I can’t believe he actually liked himself.  He also asked me repeatedly what I meant by “a good man.”

Another told me that he did not want to be part of my research — crazy experimentation was what he called it.  He thought everybody else was crazy.  Trying to get along with him could drive anyone to that point.  He taught me not to share all of my ideas about life and to run at the first sign of inconsistency.

And a third wanted me to be a cure for his sexual dysfunction.  No legal or illegal drug helped him, and I wasn’t going to try.

Interesting facts:  all three of these men were divorced at least twice.  None of them could remember marriage ever being happy.  And all three are still looking for the perfect woman, the figment of their imaginations who speak and act on cue to their needs and wishes.

Out of respect for my constant companion (& friend in old age) and my sons and his, I don’t want to comment on our more private moments.  He does however make me smile and giggle.

And how did I finally come to get my head around my struggles with my sexuality?  A great part of my success is due to my cc&fioa.  The ah hah moment however came just a week or two ago when reading The Desires of Margaret Fuller by Judith Thurman in The New Yorker on the publication of Margaret Fuller:  A New American Life, by Megan Marshall:

Her inchoate feelings for [James] Nathan were not merely virginal.  As she herself acknowledged, in forgiving him, they were ‘childish.’  But perhaps they suggest why her writing was never as great as her ambitions for it.  She could love and desire intensely, but rarely at the same moment, and she could think and feel deeply, but not often in the same sentence. . . 

Fuller inevitably fell in love with [Adam] Mickiewicz, and it seems, for once, to have been mutual.  ‘He affected me like music,’ she told Rebecca Spring.  But it also appears, from their letters, that he had recognized what vital element – not only sex but honesty about desire – was missing from Margaret’s life.  ‘The first step in your deliverance,’ he told her,’ ‘is to know if it is permitted to you to remain a virgin.’

Reading more about Margaret Fuller I discovered that in 1845 she wrote in her book Woman in the Nineteenth Century:

There exists in the mind of men a tone of feeling towards women as slaves.

I must read more.

When I first read this morning Times article there were no comments.  As I push the publish button there are 279.  I’m not reading them.

Musings on Mom and Shredded Wheat

This evening I bought three boxes of bite size Post Shredded Whole Wheat and two curtain rods in Walmart and I feel sullied.

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It was on my way home from visiting my mom in her assisted living in New Jersey – a two-hour trip one-way.  She was at the table napping in front of a magazine when I arrived, but one of the caretakers who likes to make me feel that my trip hasn’t been in vain, badgered her (but in a gentle way) until she lifted her head from her chin, opened her eyes, and together they sang a few bars of My Bonnie Lies over the Ocean and Cielto Lindo in Spanish.  My mom never knew Cielto Lindo or any Spanish when she was who she was.  I find it interesting that she has learned something new.  She said hi to me and gave me a smile, and went back to sleep.  

Mom and Me at the BeachWhen my mom isn’t too deep into her own thoughts or too sleepy, she recognizes me and that makes me feel good, but I would have been okay going home without connecting with her.  She’s 96 and she is tired.  I have no idea what goes on in her mind.  She has started to mumble when she is half-asleep.  She might mention her oldest grandchild by name, or my father, but there is usually no context to her mumblings, and I miss most of the words if they are words.

Often when I visit the house is full of chatter. Her housemates talk to themselves, one speaks on an imaginary phone she holds to her ear, some talk to baby dolls.   They are important conversations but only one-sided.  They have their own languages and sometimes they talk to me, expecting an answer.  I comprehend nothing except their desire to communicate.  I try to respond but feel very inadequate.  There is one man with the most beautiful smile and brightest eyes who speaks bubbly words of nothingness.  What was he like when he was whole, and what makes him so happy now?

Why should my mom wake up to smile at me?   I lowered my expectations a long time ago.  My visits are opportunities for me to see how she is, which means is her color good, has she slipped further into her illness, is she in pain, is she miserable, does she look comfortable and peaceful, does she need anything, and we hold hands.  If we talk, it is for a few minutes and then she drifts off.

When I left, I was already in my “why?” state of mind. 

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My plan was to stop at the bank and Lowe’s and to pick up cereal.  Lowe’s had the paint but not the curtain rods. I don’t usually shop at Walmart.  It’s too big, too much a bully, too destructive, but it was on my way out of the big box complex, and it would have everything I still needed.  Just one stop on the way home instead of two stops in the other direction was a good idea.

The parking lot was very crowded.  I cringed looking for a space and once again entering the store.  Memories of my husband who would come home from errands excited by the tattooed ladies in the Walmart in Plymouth, New Hampshire made me smile.  I stood on tiptoes and stretched to reach the three boxes of shredded wheat that were on the top shelf — so far back and high that I had to coax the last two forward by knocking them down with the first.  Obviously PSWW is not a big seller.  The price was nice, but it made me even more uncomfortable with my lack of resolve.  It is so easy to slip into abetting the enemy.

PSWW is the only “just cereal” that I have found, even on health food shelves.  It has nothing added – no sugar, no honey, no nuts, salt, dried fruit, cinnamon, additives. The back of the box proudly shouts out that Post shredded wheat has “an ingredient list that is so good, we have nothing to hide.”  Why does this statement madden me instead of making me happy? I’ve  researched it and it seems to be true.  It’s not organic, but I want a “NO GMO INGREDIENTS” label, and no BHT, and more choices.

My body was quickly moving to rant mode, and eventually my thoughts caught up and settled on frankenfish; over-processed flour; chemical-laden apples ripening in boxcars; aspartame in milk; misuse of antibiotics; chicken breasts with no bodies, heads or feet lined up on shelves in a dark warehouse, hooked up to feeding tubes.  I just don’t understand an agricultural-industrial complex that arrogantly tries to convince consumers they have no right to know what they are putting into their bodies.  Individuals run agribusiness.  Their families eat food, drink water, and breathe air.  How can they  greedily produce foods that negatively effect their children’s bodies and their children’s environment?  How do they and the politicians who support them twist the reality which is that they are destroying the agricultural diversity and sustainability of our planet and the integrity of our food supply into the fantasy that they are graciously feeding the world?

My son, the one who works with food and public health, and I talk a lot about the world’s food supply.  He has convinced me that a new round of make-millions-while-crippling-life-as-we-know-it will belong to the medical-industrial complex.  They will discover ways to alter our bodies so that we can adapt to our unnatural diets, and of course we will pay with our health and our money to fix their “mistakes.”  Maybe we already are on this path; there certainly are enough pills and medical procedures that help us cope with our debilitated digestive systems and allergies and ballooning numbers of ill. 

One neighbor always tells me that we have choices.  We can shop at natural food stores, grow our own vegetables, buy at local farms, prepare from scratch. These choices are still very limited and they take research and energy, commitment and time.  They are luxuries not available to those who are struggling.  They are not concerns of the hungry.

There is more to life than shopping for food.  

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Something new to think about:

http://www.businessweek.com/articles/2013-05-30/genetically-modified-wheat-isnt-supposed-to-exist-dot-so-what-is-it-doing-in-oregon

So let me tell you about my tower #5: It’s not on an island

Mom might like it better if I wore my pearls —

It’s been hard to write about the tower these few weeks. For one, I’m actually working on the house – painting, not very well but hoping to improve with time.  Yesterday I was up on scaffolding – and I was moving it around and pouring paint out of a five-gallon can.  My mother wouldn’t approve and the way my back hurts right now, I might agree.

Two, I feel guilty every time I sit down at the computer knowing Lee is hard at work. Third, my mind is focused more on the present stage of the tower than on a year ago when we were studying drawings.

I have also been totally distracted by the ugliness in the air:  the blatant disregard of truth, equality, ethics, science and suffering by so many of those in control in our country.   It didn’t seem right that I should write about my happiness.  It seemed disrespectful to those without a place to live, without food on the table, a job, health, without hope.

But Michelle made it okay.  She said it all last night at the Convention.  Rather than read my rant, hear her speak of the America I know and I want for my children.    Michelle said it better than I could and it is okay for me to think and write of other things.

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We still held some hope to get the addition up and closed in before the winter.  Actually only 36 days passed between the “please rethink” email and the “love the tower” email of August 21, 2011, but it was a long 36 days.

From the south

Duke came to visit with the new model (which now looks a bit battered in the photos) and a set of drawings.  It looked fantastic and had “wow” appeal.  He incorporated many of my wants into the tower.  It had a greenhouse bridge over the doors to the two structures and the entrance to the house was not visible from the street.  He angled the house so that we captured the best view from the observation deck and maximized the footprint while taking into consideration the 10 foot-septic tank setback.

Street side

He topped off an 11 x 11 observation floor with a wide shallow roof that would enable me to keep windows open at least on the third floor during the rain, and provide shade (although not enough shade I discovered and grumbled about for a few miserable days after it actually was up).   And he lined up the first floor windows so that you could see green grass and sky through the addition from the living room.  It wasn’t the angle I had envisioned, but it worked just as well.

We talked a lot about the window walls that framed the spiral staircase corner.  They were visually striking and would allow lots of light into the space.

View during today’s morning coffee

Duke left and we played with the design.  Lee didn’t say much but I knew what he was thinking.  It was an expensive little addition compared with our original idea.  We had started simply:  one story plus a loft in a square shed roof structure with a balcony for morning coffee overlooking the river.

My thoughts were along the same line as Lee’s.  All those angles and windows and that large deck were going to bump the costs up, but we started calling the addition our tower.

First I cut windows.  It was easy to take away the transoms.   It was also easy to eliminate the two picture windows on the third floor.  One faced a brutal winter north wind, the other side faced neighbors, and we also wanted wall space to hang our art.

North side

We didn’t need five little windows in the second floor landing of the cottage.   Three more deleted.

We knew we didn’t need or want all that outdoor deck, which actually grew even bigger in subsequent drawings.  The tower is to be our private space, not for entertaining.  We decided to limit the deck to the area adjacent to the tower.  I don’t know what we will do with all that deck we still have.  The roomiest side looks over our neighbors’ yards and outbuildings – not the nicest view and definitely none of my business.  We may eventually put up a trellis and perhaps a clothesline or make a container garden in that area.  We’re thinking of getting IPE decking tiles for the deck, and we’ll add them a section at a time.

River side

The window walls around the spiral were the biggest problem.  Everyone – including me – loved the look.  However these windows didn’t face the water, they faced the street and our neighbors.  Lee and I sometimes thought of our tower as our cozy nest in a tree house.  Living with those windows would be like living in a fishbowl.

I obsessed for months on how to preserve the excitement of the window walls yet add privacy.  What was the point of all those windows if they had to be covered up?   The spiral stair made it troublesome, if not impossible, to reach to open and close curtains, let alone windows.  I didn’t want windows I couldn’t open or clean.   Even so, I checked into shades and blinds and tinted glazes and sheets.

My visit to Hunter Douglas was surreal.  Anything the saleswoman showed me that might work cost as much as the windows, if not more.   Lowe’s and Home Depot weren’t much better, nor was the web.

Dave, our builder, said we could wait to order windows until after the building was up.  That helped and I eventually settled on four large square fixed windows, letting the privacy issue rest.  I have used my mom’s old tablecloths, flat bed sheets, and rolls of woven toweling from Lowell National Historical Park for curtains.   Certainly I will find the right piece of material squirreled away amongst my treasures and hang it strategically.

We actually were able to place one awning window in the spiral wall and get some air circulating in that corner.  I didn’t have to compromise totally on the “no-windows-that-don’t-open” rule.

It wasn’t until we were actually ready to start building that I discovered a major omission in the drawings.  The original cottage had a dormer riverside, but not to the front.  If you were short to average size you could stand tall at the top of the stairs, but it was still a bit precarious to cross the second floor landing to get from one room to the other.  If you were tall, you bumped your head.  Even before planning this addition, I would fantasize popping out the roof and making that landing a livable space.  That was on my original wish list.

From the top before the dormer went in and oops, the roof is on crooked —

Somehow we all overlooked it.  When the architect added it back in I thought we were making it easier to put the pieces together.   Dave told me otherwise!  All of a sudden the original cottage had to support not only the bridge but also an entire new room.

Dave had another surprise.   Because Lee and I had told Duke numerous times that there were very strong winds coming down the Hudson which often blew for days with gusts of 40 – 60 plus miles per hour, he passed the plans to an engineer to make sure that the tower and especially its roof would be able to withstand this abuse.  The engineer added LVLs and Simpson ties and lots more lumber and. . .   We’ll get to that later.

The tower is standing.  It’s wonderful.  There have been frustrations and compromises, but in the grand scheme of things they are minor.  Lee reminds me each time that I will come up with a solution and that we will be very happy.  I pout, but he is right.

Neighbors and Fences — a Second Subtler Approach

       My old New Hampshire home, painting by Marguerite Tanner, 2004
 

Perhaps it is because I lived for four years by myself in a 5000 square foot 1790 house on 12 acres in rural New Hampshire, but whatever the reason, I have come to believe that neighbors are there for you when you need them, and you are there for them in return. You may not socialize together, you may have totally different philosophies of life, vote for the other man, have more or less money, and pray to a different god or not at all. In most circumstances you stay out of each other’s lives, you do no harm, and you are there when four hands are needed when there are only two.

Like when your tractor breaks down and the fellow who lives behind you sees you struggling to start it walks over and says let me look at that. Or when some pipe in your basement cracks and it’s nine o’clock on Friday night.  The woman down the street from whom you buy your eggs calls you up to tell you that she just bought some new hens, hears of you dilemma and then starts calling her friends who might be able to help. A great guy appears at your door tools in hand and fixes everything and asks for nothing. Or when your husband is in hospice and the underground spring that forms a duck pond every year in your orchard during snow melt changes its course and you’ve got two feet of water in your basement.

Neighborliness comes in many forms.   Robert Frost, who lived many years in the state, wrote how he and a neighbor “beyond the hill” would meet one day every spring ‘to walk the line and set the wall between us once again.”

Stone Walls at my old New Hampshire home

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Like Frost, I now have a neighbor beyond the hill.

He is all pine, and I am apple-orchard.                                              My apple trees will never get across                                                 And eat the cones under his pines, I tell him.                                    He only says “Good fences make good neighbors.”

. . . Before I built a wall I’d ask to know
What I was walling in or walling out,
And to whom I was like to give offence.
Something there is that doesn’t love a wall

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Fence erected by my neighbor next to the addition going up

A Contest, a New Hampshire Travel Log, and My Own Little Facebook Policy

Recently Sunset Hill House, a very special inn in Sugar Hill, New Hampshire announced a contest.  The innkeepers would select ten of the entrants to spend five nights at their inn sometime during 2012.  The winners would have free range in the inn, including spying in the kitchen and attending staff meetings.  They could spend their days and nights doing what they liked best – hiking, skiing, antiquing, cuddling, reading, enjoying the good life in the White Mountains, the Green Mountains, and along the Connecticut River.  All the contestants had to do was write a letter to the innkeepers, Nancy and Lon, and tell them why they were qualified to do this reporting, and Nancy and Lon and their staff would pick the winners.

Sunset Hill House!   What warm and powerful memories I have of my one night stay there.  It was two years ago this spring.  I was still in the gloriously high days of getting to know someone new.  I planned a trip to New Hampshire to retrieve my Miata. I had left my Miata at a neighbor’s house in January until the weather warmed so I could drive it with the top down to my new home in New York.

We rented a car and drove up to the Lake Winnipesaukee area and stayed at The Maria Atwood Inn in Franklin.  I knew the innkeepers, Fred and Sandi, from when my husband and I owned a b&b in Moultonborough.  A bunch of b&b’s belonged to the Lakes Region Bed & Breakfast Association and we would meet monthly during the off season for networking and morale boosting.  Even tho we always met at one of the b&b’s I guess I had never been to Fred and Sandi’s.  It was great – it was Lee’s first b&b, and he couldn’t have had a more positive first experience.  The home had been rebuilt after a fire, and it had been very authentically recreated (and of course modernized).  Post and beam construction, vaulted wood ceilings, stained glass, wide pine floors, and fireplaces.  Breakfast table conversation I remember as being exceptionally interesting.  Sandi cooked up moose sausage – Fred had shot the moose – I believe it was legal.  You’ve got to see their website.  It’s a hoot!

The second day we picked up the car, dropped off the rental, and visited my favorite Center Sandwich hotspots – the Creamery and the Corner House Inn, and then drove down to Concord.  We stayed at The Centennial Hotel.  I used to have lunch there in the Granite Restaurant & Bar with my mom.  She lived down the street, at Birches at Concord, an assisted living dedicated to those with memory loss. The hotel and restaurant were over the top for Concord, and may still be.  Their website calls it a “welcome alternative to both traditional franchised hotels and local inns . . urban contemporary flair . . . in a beautiful Queen Anne landmark.”  Sophisticated, yet not too much so that Lee, who wears only painters pants (with shirts, socks and shoes of course) and I were not uncomfortable.  The waitresses recognized us when we came in – my mom always had a shrimp cocktail and a rich dessert.   Lee and I had dinner and then went to see “Lunch” at Red River Theatres, Concord’s independent film venue.   It was a beautiful day.

We drove up to the eastern entrance to the White Mountains, stopped off at the Mt. Washington Hotel to look out the window, enjoyed a few waterfalls, and then drove to Sugar Hill, where Sunset Hill House is located.  I had heard that Sugar Hill was pretty, and I think I had actually been there when my husband and I were scouting out b&b’s for purchase, but nothing prepared me for the incredible views from this inn.  You could see way into the White Mountains to the east, the Green Mountains to the west.  We  were able to book a room on a “last minute” deal – I believe it was $80 a night with breakfast, and a gourmet 3-course dinner for $20 a person. We were the ONLY people at the inn that night.  We were the ONLY people at dinner that night.  The staff did not shirk from their duties.  It was perfection.  We were invited  to pick our room from the 30 available.   I cannot remember what the meal was, but I will always remember the meal.  After just one more glass of wine and a goodnight from the staff, we were left alone in the inn for the night.  The cat slept in our room.

We woke up to see another little red Miata parked next to ours.  It belonged to Nancy who greeted us at breakfast.  There was a table filled with young workers who were going to do some work in the gardens.  Breakfast was tops!

We left for home keeping close to the Connecticut River.  We crossed the river several times, stopped here and there, but mostly enjoyed the wind in our hair, the sun dabbling through the new leaves on the trees.  We agreed we would be back.

Unfortunately like many of the promises we all make to ourselves, we still haven’t followed through, but when I saw this contest opportunity I wrote my letter and sent it off with hopes.  Having just started my blog, having run a b&b for 7 years, and having had such a memorable visit to the inn once before, I felt I had great credentials for the job.

There was one little pinch in my enthusiasm.  At the end of the invitation to enter the contest was a request that applicants “like” or “fan” the inn on Facebook.

I had already dropped my Facebook membership.  I used to be a Facebook-er or whatever the nomenclature is that I used to be.  But I was very put out when Facebook chose 5 or 6 photos of me and pasted them across my home page.  I changed those to something more representative of my style and me and proceeded along.  Facebook gave me the chance to get a glimpse into my son’s lives, to find out what was going on with my friends socially and what they were thinking politically.  I caught up with one old high schoolmate who wasn’t actually one of my friends back then, and we regret that loss.

Then however Facebook started digging up my past and posting quotes from years before.  This was too much.  If I wanted to repeat those posts I would choose them and do that myself.

Websites I visit for shopping or for news started referring me to their pages on Facebook.  What at first I thought was just an inexpensive way for start-ups to advertise on the web was actually  a new marketing trend practiced by commercial enterprises and non-profit organizations. Facebook was now capable of keeping track of my shopping, travel, browsing activities, as well as my communications with friends.  My sons had already dropped out because they didn’t like the new all-encompassing world of Facebook.  It was time for me to take action also.

Before I closed my account I deleted all the posts and comments that I could and defriended all my friends.  I soon learned that I wasted my time.  That information is with Facebook in perpetuity.

Soon after I had sent my contest entry to Sunset Hill House I received a broadcast email from the innkeepers.  They were overwhelmed with entries.  They had decided to automatically award the first three “vacations” to those entries that received the most votes on Facebook.   Get your friends to vote for your entry, they wrote, and vote yourself.  Another way to influence the judging was to interact with the inn on Facebook.

I certainly wasn’t going to pick up my membership.  I asked Lee, who wasn’t using Facebook anymore but hadn’t closed his account, to “like” Sunset Hill House.  He did.

Then today I received another broadcast email from the innkeepers, again stressing the importance of the Facebook aspect of the contest.  I felt like it was written to me personally but I’m sure it wasn’t.  I won’t rejoin Facebook just to win a contest.  I responded:


I’m sorry to have to drop out of the contest, and I want you to know why.  Not everyone is a Facebook fan.

While I would be very happy to write on your Facebook page, I am not willing to have my own Facebook presence. I used to be an active Facebook-er but dropped out when it was no longer possible to ignore how invasive and powerful it had become.  I certainly understand your eagerness to market through this giant social network, and it will not keep me from visiting you again in the future.

I hope you will continue to have the vibrant website you now have off Facebook.  Otherwise people like me — who struggle to maintain even an illusion of privacy online — will not be able to know what is happening at your inn. 

 We all pick our own battles.  Pity we’ll have to pay for our next visit.

The Best Place for New Yorkers with Alzheimer’s — New Jersey?

Connecticut?

Many of the New York state regulations that apply to residences for people with memory issues have little to do with reality.  They prevent administrators from providing a continuum of practical, cost efficient, safe and sensitive care for Alzheimer sufferers.   My mom is 95 and has been in specialized memory care assisted living for the past 6 years, first in New Hampshire, now in New York.  Soon my mom may have to move, because she no longer will meet the requirements to live where she lives.  New Hampshire and some neighboring states don’t have these restrictions, but New Hampshire is too far away for me to move my mom back. Next stop:  a nursing home, back with family – or New Jersey?

One NY regulation states that no staff member, not even a nurse, may give a resident medication.  The resident has to be able to take that pill or liquid on his or her own.   My mother never could swallow a pill.  Her inability has nothing to do with Alzheimer’s.  However, it is necessary to circumvent the regulation so a staff member may crush her pill and serve it in applesauce or pudding. The rationale is to prevent giving medication to some one against their will.  This reasoning does not make any sense with those afflicted with Alzheimer’s and other dementias since they have lost the capability to make rational decisions.  Can’t take your medication?  Next stop:  a nursing home, back with family – or Connecticut?

On the flip side, an assisted living medication coordinator many not fill a PRN or “when needed” prescription written by a doctor.  The rationale here is that a person with Alzheimer’s or dementia does not know when a pain reliever or even a decongestant would be helpful.  Aides or nurses, especially if they have cared for a resident for several months, can see or hear when a resident is in pain or has a fever and needs medication, but the regulation prohibits their using their common sense.  Yes there will always be some staff members who may abuse the right to provide medication, but there are other ways of providing checks and balances to the process, rather than to outlaw it altogether.

Another regulation states that residents in these homes must be able to stand and ambulate on their own.  No gentle lifts or pushing of wheelchairs by staff are allowed.  If someone has become too weak to stand up without a helping hand, she’s out.  Next stop:  a nursing home, back with family — or New Jersey?

Still another regulation states that residents in these homes must be able to feed themselves.  Finger food is fine, but no help, not even from a volunteer.  Next stop:  a nursing home, back with family – or Connecticut?

A resident who is “uncooperative,” perhaps because she can’t sleep or does not want to eat or take a shower or take her meds can easily, unintentionally be pushed beyond her fragile line of self-control.  What happens when a resident is in pain or yelling in frustration or anger or confusion?  Often it depends upon who is on duty at the time.  If there is an aide present who has a solid relationship with the resident, the aide may be able to calm her.  If not, and there is no one who may take responsibility to assess the situation on-site, it is off to the emergency room, and most likely, off to the emergency room alone, secured to a gurney, with nothing more than paperwork stating that the patient is “uncooperative” and her behavior is not consistent with her norm.  How to avoid unnecessary traumas in the ER?   You must proceed to the Next stop:  a nursing home, back with family – or New Jersey?

The head of my mom’s “neighborhood” is a very compassionate, professional woman, and has gone out of her way even from home on her day off to time the ambulance pick-up so that I can meet my mom at the hospital.  She has warned me that if my mom is “uncooperative” or “combative” she could be sent to a psychiatric unit.

If there is no advocate for an Alzheimer’s patient in the ER, the doctor may have to admit her, start an IV, insert a catheter for a urine sample, take blood, order x-rays  and other tests to verify that there is nothing wrong.   The last time I was at the ER with my mom, the very wise and young head of the room wiggled through procedures and discovered my mom had a urinary tract infection, wrote a script for antibiotics and sent her back.  I was present and could assure him I was in total agreement with his approach; if not, he wouldn’t have been able to doctor as he did.

It gets worse at the hospital.  When it appears that the assisted living is not able to provide for the patient’s needs – why else would it send a cranky but otherwise healthy person to the ER room — the hospital must, according to state regulations, discharge the patient to a nursing home.  This almost happened to my mom on another occasion and for another reason.  I was there and I was able to get that wonderful head of my mom’s neighborhood to come to the hospital to offer her assessment of my mom’s condition and to vouch that the assisted living was capable of meeting her needs.  But what if I weren’t there?  Or think, what if you weren’t there for your mother?

I’ve looked at nursing homes in order to be prepared if my mom really did need to move.  Nursing homes provide skilled nursing.  Alzheimer’s and memory loss seniors do not need skilled nursing unless they have some other medical condition.  They need someone to help them transfer from their bed to their wheelchair or to eat or to toilet.   Nursing homes are also very expensive – from $5000 to $8000 more a month than what one pays for assisted living – which is already expensive.  Does it really cost another $5000 a month for someone to help a person into a wheel chair and wheel them down to the dining room?

I asked professionals at the nursing homes and in Alzheimer’s support organizations, how do people pay for this.  And the answer was:  “They don’t.”  Medicaid pays for it. “What if you don’t qualify for Medicaid?”  The answer:  “You will soon.”

Oh.

Something is out of whack here, and I’m not sure I want to try to figure it out.

Instead we will be going to Connecticut – or New Jersey.

Christmas 2011

Christmas is not my holiday.  This is my 64th Christmas.  It is there, every year, whether I’m looking for it or not.

I do not remember individual Christmases.  Some passed by as just another day. Some were filled with happy children and good food.  Mostly however, when I think of Christmas the specifics are blurred, and my body reacts to feelings of jealousy, incompetency, guilt, and confusion.  Christmas is always sooo big that it is hard  not to be caught up in it – trying to find a place to fit in even if you don’t believe.

My experiences are not that unusual I’m sure.  I was a bright Jewish girl in a predominantly Catholic grammar school.  Much to my displeasure my mother would not allow me to participate in the annual Christmas pageant.  I sat alone in the auditorium during rehearsals while my classmates practiced walking down the aisles carrying candles and singing carols.  They played bells and made decorations and chatted about their trees and wish lists.

My next door neighbors would invite me over to help them trim their tree and I would return home to unsympathetic parents with my stories of how I helped stick cloves into oranges and sprinkled sugar on cookies.

My parents caved in finally and one year allowed me to put a wooden shoe by the side of my bed before I fell asleep and they filled it with candy.   I also remember going to see the department store windows on Fifth Avenue – full of teddies and snow, and animals, and lights, and I think we also went to Rockefeller Center one year  I wonder if they did this out of love for me, not wanting me to feel so different.

When I moved out on my own and had my own apartment it took me several years before I got up the nerve to put up my own small Christmas tree.  I bought eggnog and exchanged gifts with friends.  I never told my family because some of them would think of this as treason, not standing up to the Christian takeover of the season, not supporting the Jews who chose to not even acknowledge secular Christmas.

Then of course, I fell in love with Clark, a non-Jew, one who’s mother loved Christmas, decorated her home, shopped with fervor, cooked and baked, and brought out the holiday dishes..  The first year we had them at our house for the holiday I was a bundle of nerves.  Do I leave the menorah up?  Do I buy decorations?  What do I cook?

When we had children it was even harder.  I was happy they loved our sons so much that they showered them outrageously with presents, but at the same time, I never knew how to reciprocate or how to balance one set of grandparents’ Chanukah with the other grandparents’ Christmas.

Our little family created our own Christmas traditions.  We’d set up the tree on Christmas Eve – this started mostly from my not wanting to crowd out Chanukah when the two holidays coincided. It made our Christmas Eve very special.  We’d cuddle in our family chair and read Polar Express; we’d open one present.  After a wild morning opening presents on Christmas day, we’d go to a movie – it often was the newest Star Trek – and then we’d return home for a good dinner.

After my husband’s death in 2006, my sons and I continued to get together for Christmas.  It was his holiday, and it is their holiday too.  This is the first year that I am not with them. I am happy that Morgan, my elder son, has a girlfriend who shares her family Christmas with him.  It is a much better Christmas than I could give him now.  My younger son, Alex, spent Christmas with members of his band.  I think he was looking forward to doing this.

Without my boys Christmas has little fascination to me and I feel out of sorts.  It is there, trying to poke itself into my life, but somehow I can skirt around it a lot easier.  Yes, I brought my sons presents and yes, we will get together sometime in January to celebrate our memories of Christmas with Clark.  We will never let the holiday go because of our love for him.