One foot in Paris and one foot in…..

Christmas time is a season I love….for all the wrong reasons!  I love the fading light as the days get shorter, especially walking in Paris when the sky is a pinkish grey turning to dark purple then to nighttime black.  I love the lights around the Champs Elysees and the Ave. Montaigne.  Many arrondissements have also decked themselves out near the Mairie in an array of colours and blinking tiny little lights that tell you that FairyLand is around the corner.  The windows in the Department Stores are a delight for everyone of all ages.  There are tables set for Christmas Eve dinner with animals prancing around, chasing each other and having wonderful fun.  Mama Bears are serving up a meal and Papa Bears are cutting a turkey.  In another window, there are trapezes with more animals and dolls all sporting the the bags and clothes of the Designer who is sponsoring the window.  I don’t care.  It’s a treat!  In front of the window are families.  The adults in the back and the children up at the windows with their hands out wishing they could touch what is inside. My gardienne put up a large tree with wrapped presents under it.  The lights twinkle day and night.  I’ve never seen an apartment building like that before.  I think I have a very special gardienne.

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I’m not religious so I don’t need all the icons that go along with Christmas.  I don’t go to the Christmas concerts unless it’s Sing Along Carols.  Those I love.  My friend, Meg, is taking me to a Festival of Nine Lessons and Carols at Westminster Abbey when I’m in London.  This is quite religious but at least this year, I’ll hear it in English!  I can be talked in to most kinds of music with the codicil that I can leave early if I’m not happy.

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I even love giving presents.  I’m not the person who shops at the last minute which probably makes a huge difference in how much I enjoy gift giving.  I shop all year long looking at things and thinking “my sister would love that”.   I buy it and put it on my gift shelf to be wrapped at a later date for a birthday or Christmas.  So unless someone tells me that their house is bursting at the seams and not one more thing can come inside, they will get a gift from me no matter how old they are.

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Last summer, when winter and Christmas seemed light years away, a family in London asked if I wanted to do a Home Exchange.  They would spend the month of December at my home in Oakland, California and I would spend at least two weeks at their home in London.  I’ve always heard that London really knows how to throw a Christmas party.   Each time I mention to someone that I’m going to London, I hear “You have to go see the windows at Harrods/Fortnum and Mason/John Lewis, etc”  So more windows to appreciate.IMG_0062.jpg

Yet, while all this beautiful and festive time of year surrounds me, my mind and heart are partly in Princeton, NJ where my uncle Stan still lies in a hospital bed in the Skilled Nursing floor of his Retirement Home.  Very little has changed.  I’m told his appetite is coming back and the hope of everyone that loves him is that this will make him stronger.    And being stronger, his Physical Therapy will go better.  Which means he will become more mobile.  Being mobile is critical as Medicare, the great American social insurance plan for adults over 65, will assess him soon and tell us and him what his future will look like as far as living conditions go.  I feel strongly and passionately that I don’t want Medicare being the boss.  I want to be there and with his family and friends, tell Medicare this is what we can do for him.  We will make it happen.  Stan needs to stay in his apartment, there is no doubt in my mind.  Enid, his wife of 61 years, lived there with him and her presence is everywhere.  His computer, which is his lifeline to the men who are still living and flew with him in WWII, is there.  All his Princeton Basketball paraphernalia is there.  He has tapes of games going back for years.  He still watches them.  His freedom is there.  On every phone call with him he says “I am so helpless.  I can’t stand it”

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Cousin Joan and I are determined to create a bedroom for him that can have a hospital bed and a bedroom for a live-in aide–hopefully a strong male aide.  Joan wrote a letter to Stan’s lawyer asking for some kind of contract that Stan could sign saying he won’t hold Stonebridge responsible if anything should happen to him.  Even if Stan lives less months that he would if he were moved, the months would be as “good as it gets” months for him.  That is what is important.  That he leave this world with the things he loves and the people he loves surrounding him.

Those of you who have read Being Mortal recognise that some of my strength is coming from reading this book, this text for how to humanise the end of life.  And I’m not foolish enough to think that reading is doing.  I think it is going to be quite hard to talk about this stuff with the doctors, with Stonebridge, maybe even friends and family.  We Princetonites are supposed to be intelligent and educated.  So we’ll see.  I have planned a trip back there in January.

Meanwhile, it’s off to London.  It has been a long time since I spent any time in London.   More to come in these pages……!

A bientôt,

Sara

Quality of Life

A number of people responded to my blog about my Uncle Stan.  My friend, Darcy, has been caring for her mom who lives in the same place as Stan.  Her mom has dementia and has a small studio in the Assisted Living side of the Retirement Community.  She wrote this in response to another of her friend’s whose mother is just entering the dementia stage: “that you don’t know who you are when you are taking care of your mom. This made my whole world make sense, finally. Those simple words I don’t know who I am brought everything into perspective for me. Not that I understand all the emotions I went through here in Princeton and all of the emotions I continue to feel now that I have left. This will take years. But coming back, returning to Stonebridge, threw me into the old feelings of emotional chaos and I didn’t expect this. I was quite floored by it all. I felt guilty not spending more time with my mom and yet my body simply gave out on Friday. All I wanted to do was sleep.

I think it’s impossible to know who I am when I’m taking care of her because there are so many different people involved. Internally, there is my little girl, my childhood, adulthood. I am my mother’s daughter, friend, care taker. Added to this is the great unknown, the day to day step to step into aging, the uncertainties that come with this. How will my mother be today? How and where will her mind be? When will she fall again? This alone creates a myriad of emotions. Then throw in siblings and all of their emotions, their uncertainties, the family dynamic surfacing over and over again making us all crazy at times because there isn’t one truth yet we must be looking for that one stability. But it doesn’t exist because we never know what is coming next. The same way we don’t know what our siblings will do next. It’s a constant confrontation of the complexities of the past, present and whatever may be in the future.

It’s not like when we were growing up and we had parental guidelines already established for us. Friendships had their own boundaries, too, ones we navigated on our own. When it came to those friends and the twists and turns in life, we felt we knew what mattered most, even if only at that moment in time. Now there are no guidelines, only the heart. I wonder if peoples’ best and worst qualities come out when caring for an elderly parent.”

Darcy also recommended I read a book which another friend had already suggested I read.  BEING MORTAL by Atul Gawande. Gawande is a surgeon at Brigham and Women’s Hospital in Boston, a staff writer for The New Yorker and teaches at Harvard Medical School and the Harvard School of Public Health.  In his free time!! he writes books.  Gawande poses a question that I’ve never heard said by a doctor–“Do we try to do too much?  Are we just trying to fix the next thing or are we thinking about the ill person in what may be their last years and asking them what they want?”  He calls these the Hard Questions or the Hard Talk.  It is a very provocative and thoughtful book.  He even gives the example of his own father who developed a cancer in his spine.  It is a book all of us should read, to prepare ourselves for the future and to help our elders get what they really want–which may contradict what a specialist doctor wants for them.  We are all going to die but we have choices, up to a point,  where that will be and how it will happen.

I’ve thought of Stan ever since I returned to Paris.  He did not want to be in that bed up on the Skilled Nursing floor.  He didn’t want to be poked and prodded all day long having his blood drawn, helping him sit up or lie down.  What he wanted was to be sitting in front of his computer and doing whatever he enjoys doing.  He doesn’t have to walk to do that.  He has now got an aid 24/7 to help him get his breakfast, shower etc.  But I don’t know if he is back in his apartment or still up in Skilled Nursing.  Being Mortal has given me a whole new way to think about what happens next, what to ask Stan and then to listen.  It’s allowed me to be really honest and say that this fall is probably the beginning of the end.  Gawande says that if he can live the way he’d like to live, in his apartment, surrounded by photos of Enid and all his Princeton Basketball paraphernalia, the end may be further away.  But the Stan that is up in Skilled Nursing doesn’t want to live the way he is living up there.  Neither would I.  A specimen under the light of nurses and doctors and aides none of whom knew him until about 2 1/2 weeks ago.

I recommend this book.  Darcy calls it The bible for caregivers.  Yup, it is the only one I know of that has the questions that we should be addressing now.

And in Paris….Life is cold but at the same time full of activities.  I’m feeling grateful to be here right now, with good friends and activities I love.  Christmas Parties bringing a lot of people all together in the same room maybe the only time all year!!  And the lights!!!! The Champs Elysees is lit up and the Ave Montaigne looks absolutely elegant with lights in all the trees and little tiny blue sparkly lights flashing on and off inside the the white lights.  It’s a wonder to behold.

A bientôt,

Sara

My Uncle Stan

I just finished writing a blow by blow description of my Uncle Stan, age 94, falling in his apartment and breaking his left hip.  I hate what I wrote.  I don’t have the writing ability to keep your attention while describing all the running around I was doing accompanied by intense wildly vacillating emotions.  Some writers can grab you and put you in their shoes so that you feel the sadness, the anger, the helplessness of being the caretaker of someone who has been vital and in charge his entire life.  I had hoped the writing would push me to sort through a lot of my questions of American versus French medical systems as I’m at the age where I’m asking myself “Where do I want to grow old?”

I’m writing all this from my little desk in Paris.  I returned here over the weekend feeling no small amount of guilt for leaving Stan in the hands of Skilled Nursing. These are the things that have stuck to me and won’t let go.                                                                                                                                       Stan was so miserable, so uncomfortable, so humiliated by his powerlessness that he sank into depression and confessed that he wanted to die.  I couldn’t find any fault with that thinking.  The surgeons couldn’t do a hip surgery on him, he was too old.  They opted for two one-inch incisions at his left hip and placing small rods in to hold the hip together.  Then it was up to him to do Physical Therapy to strengthen himself enough to be able to walk again.  What I saw in front of me was an old man who was so thin, so small that he looked like a little boy lost in his twin size bed.  A man whose lack of any fat on him caused him to slip far down in his wheel chair until he became so unbearably uncomfortable that I’d go looking for aides to help pull him up again.  His hearing is so bad that even with his hearing aids, we had to almost yell to explain to him what was happening.  Due to another syndrome, his hands and feet got little circulation and he was cold most of the time.  I would wrap his Princeton stadium blanket around him as if he was a baby in a casket.  It wasn’t difficult at all to step into his slippers and think “I don’t want to live like this.”  He was completely helpless, dependent on me and the nursing staff.  He stopped eating.  He said he had no appetite, that this was the first symptom that Enid had (his wife who died six years ago) when she was sick with pancreatic cancer.  He convinced one of the nurses to include a blood test for pancreatic cancer in his lab work. I knew that he was saying “I just want to die.”

The Skilled Nursing unit of Stan’s Continuing Care Retirement Community was understaffed and underpaid.  I know they were working hard.  But they couldn’t be everywhere at once.  Sometimes when Stan pushed his call button, it would take 15 to 20 minutes before someone came in.  Stan has a primary doctor in Princeton but none of the staff could take orders from her.  They could consult with her.  After the first day back at Skilled Nursing, I didn’t hear about any consulting.  It seemed the right hand didn’t know what the left hand was doing.  When I mentioned this to any friends, they would nod knowingly as if this was an accepted fact of the American system.  Without an advocate, a person could easily be forgotten.  Especially someone like Stan who doesn’t like to make waves because he’s embarrassed to be seen as he is.  He made it clear he didn’t want any visitors.  We had to cook up a plan to encourage his friends to visit as if they were just passing by but not stay too long as it tired him too much.  No way were we going to leave Stan along with his depression.

By the time I left late Friday, the staff was going to put him on an IV to feed him.  My cousin, Joan, was there expertly taking over the reins to insure that Stan didn’t get lost in the system.  She wrote to say that the visits were cheering him up a bit.  Though it was only mentioned a couple of times to me, I couldn’t help but think that so much of this mess is due to our lousy Insurance system.  It was strongly hinted that he left the hospital too soon because insurance/medicare would pay another night.  When he wanted the extra lab work, a nurse took me aside and said that insurance may not pay for it.  The underpaid overworked staff remain so in order to line the pockets of those at the top of the Insurance Food chain.  I’ve had the experience of having to pay more for a medicine with my Co-Pay than the entire cost is here in Paris.  This is, of course, just my opinion but as I watched the week with Stan unfold, it struck me that this is one of the ways the Insurance men and laws deal with our elders–hide them and maybe they’ll go faster.  I don’t feel polite about my dealings with the health care system last week.  I made myself unlikeable to all the staff, sometimes even to me.  But what would have happened to Stan if I hadn’t been there?  It was Thanksgiving week and people were on vacation.

More on this later.

A bientôt,

Sara