Tag Archives: Mom

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

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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.

*

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.

Afterword to Then Again

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Reading Diane Keaton’s cleverly constructed and unapologetically revealing memoir Then Again I’ve spent more time reflecting on my life and feelings than her actual story.  Friends regularly accuse me of going off on tangents.  To me, my rambles all are on track.  Some books are favorites because of where they take my thoughts. It is a surprise and often a disappointment to reread one of these favorites and discover it isn’t what I remembered.

*

I feel validated when an author states my obvious.  It’s disappointing when we’ve used the same words.

I feel pleasure when the author articulates emotions and feelings that are in my stomach and in my heart but haven’t yet been put into words by my head.

I also enjoy being struck by an opposing view when it causes me to pause and rethink.  I can handle seeing the black and white turn grey

Diane Keaton has done all three.

*

Then Again, like the Jacqueline Kennedy interviews that I wrote about in an earlier post, was a gift.  This was a gift from my older son’s girlfriend.  They just recently decided to go their separate ways.  It’s a difficult thing for a couple to do, especially a couple that worked so well together.  I’ll never know why.  Hopefully they both know why.  But that is part of the baggage this book carries for me.  Bittersweet baggage, because she is a delightful woman (and he a wonderful young man).

My other son has a new girlfriend who, and I’m not sure if this is because I just read Diane Keaton, reminds me of Diane Keaton.  I don’t know her well enough to say that their personalities are similar, but she seems to have the same presence.  She’s delightful too.

*

Diane Keaton’s mother kept 85 separate journals, and scrapbooks.  Her writing started with letters to her husband while they were separated after the war.  He was in Boston in the Navy. She was 24, in California, and had just given birth to Diane.

I kept an on-and off diary starting in high school, wrote copious letters in college, and influenced by Anaias Nin in the seventies, began years of a passionate outpouring of what I remember as drivel, whining, and moaning about the lack of exciting boys/men in my life, or their rejection of me, and my utter alone-ness.  Finally I stopped writing.  Things must have improved.

During one visit to my parents’ home, my mom brought me up to the attic and presented me with a box of things that I had left there while I spent a year in France.  Included in that box were the journals.  Oh my god, I thought.  Did my mom read these?  What would she have thought?  I didn’t open them, but brought them home.

As my children grew, however, so did my anxieties about what was actually in those journals.  If I didn’t want to read them for fear of what they contained, how would my children or my husband, react to them   One day they went out with the trash.

As an archivist by profession – this was total heresy.

Sometimes I wonder what was in those journals and if I wrote well – but never enough to regret not keeping them, even after reading about Diane Keaton’s mother’s scrapbooks.  The future has always been more important than the past to me.

*

The last chapter of Then Again is Diane Keaton’s reflection on the final chapter of her mother’s life – her death.  Like my mom, Diane Keaton’s mother had Alzheimers Disease.  We believe my father did also.  But neither of my parents have been as debilitated by the disease – at least not yet.  I can’t bear the thought of my mom curling up and shrinking away.  It could happen. Maybe we’ll be lucky and one day she will just lie down to rest on the couch as she always does in the afternoon, but not wake up.  The disease shows very little mercy.   I have not yet been able to put my emotions and feelings stirred up by this chapter into words.  Diane’s story with her mother has been no help to me.

*

I was supposed to read this book.  Diane Keaton’s mom would cut out photos and headlines from magazines and she would copy quotes from everywhere.  One day she had a cover from a New Yorker thumb tacked to her kitchen bulletin board.  It read “ Is it possible to go backwards and forwards at the same time?”  Yes it is – just as it is possible to grow younger and older at the same time.

Brothers-in-Law

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My dad David and Uncles Eddie and Elliot home on leave, 9/5/1943

Several years ago my basement flooded and many of the family treasures were lost or damaged.  The days of sifting through papers were bittersweet.  My twenty-something boys came up for a long weekend to go through the boxes I had marked as “Morgan’s Life” and “Alex’s Life.” They contained drawings, writings, school papers, letters, whatever I thought precious enough to save for them when they grew up.  It was a sad and joyful weekend of hard work — emotionally and physically. My sons were amazed at how clever they were as little boys!  They told me they would love to go through the papers again, but not until the next flood.

Here’s a gem I found among my father’s papers.  It’s an undated letter from my mother’s sister’s boyfriend to my father during the war.  My mom and dad are Mil and David.  Her sisters and their beaus are Thelma and Eddie and Shirley and Elliot.  The little girl is my older sister.

______________________________________________________

Hi ya fella,

I hope this finds you well.  I am alive.

Hey, don’t call me those names.  I’m lucky if I can write a note home now and then, beside the fact that we are now not allowed to say anything.  We are busy — to make a terrific understatement.

I guess you must have heard of my good fortune – the thirty day leave.   It was like water to an old desert cat in a sand storm or land to a sailor in any kind of storm.  In short and to put it mildly, it was great.

A picture for daddy, 1943

Now comes the flattery. Dave, you are the luckiest guy in the world, that kid of yours is just a dream, she’s beautiful.  She’s got more sense than I have (maybe an insult but considering her age).  She’s so sweet you could just eat her up.  I spent half my time with her.  I just can’t put into words what I thought of her.  For the first time in my life I can truthfully say that I love a child. She’s not like the run of the mill.  She doesn’t cry and pout all the time or make a pest of herself.  In a nutshell, she’s wonderful.

I came home fully intending marriage in a year of receiving 20% sea duty pay and all I only saved about $250.  As you can see, that is nothing to boast of.  In the past few mos. in the Pac. I have saved easily that much.  I got 2nd class giving me $96 base pay & 20% plus $10 for extra service (running motion picture equip).  I save about $86 per month, I could do worse.  So we got engaged.  All of which leaves me very unhappy, because I have been kicking myself ever since for not getting married when I was home or not saving dough when I could, well no use crying over spilled perfume.

Elliot, Thelma, David, Shirley, Eddie, Mildred

Getting back to an interesting subject, everything at home is as well as could be.  I saw your family a few times and Doris quite a few, all fine.

Getting home to serenity and peacefulness is quite a shock though pleasant. I hope you can experience it soon.  I know that whenever Mil or Shirl looked at me they saw you & El, but it was beyond my control, though I wish it weren’t.  I probably caused them more grief than happiness by my very presence.  If so I’m sorry, but I just hope you get home first this time just to square things.

If possible let me know where you are now.  Take care of yourself,

Ed

Elliot, Eddie and David with the parents of the sisters, their loves, 9/5/1943

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

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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.