Friday, March 25, 2011

Am I Too Old to Say OMG?!!!

I'm reading a novel which features a pair of "Elderly Oxford Dons".  I was startled to realize that they are the same age as Charley!  Which means, parenthetically, (or should I say Grandparenthetically) they are a year YOUNGER than myself!  The novel I read before this one was "Gaudy Night" by Dorothy Sayers and I'm realizing for the first time that the Dean of Shrewsbury College could be about 30 years younger than I am!  Well, she has been in her thirties since before I was born, so the first time I read "Gaudy Night" she was much older than me.  Does that make me feel better or worse?

I'm ELDERLY for crying out loud!

I told a friend of mine that I will turn 60 in August and she was shocked.  She said, "I had no idea you were so old.  I thought you were in your 40's!"  

"So did I!"  I responded.  I am totally surprised to suddenly find myself in this situation.  If "50 is the new 30", then I am about to turn 40 a second time and perhaps that's not so bad...

I'm fortunate to have a group of close friends who make "Elderly" look fabulous.  One of them hikes around Australia and muses about moving closer to her children at some distant future point when she gets old.  All of them live full and interesting lives.  Then there's my mother, who moved into a retirement community 6 years ago but hasn't allowed that to slow her down.  Well, maybe just a little.  I remember when my great Aunt Ruth was her age.  My mom would call me and say, "I'm so worried about Aunt Ruth.  She's slowing down."  And then tell a story about Aunt Ruth getting a speeding ticket.  When Aunt Ruth moved into a retirement community she was 90 and she wrote me a letter about the attractive men there!  So I imagine I have quite a few active elderly years ahead of me.

On the other hand, here's a limit to how far you can travel with the old saw about "You are only as old as you feel."  I mean there are things which, no matter how young I FEEL, it would be ludicrous for me to do.  Surfing comes to mind.  And coloring my hair platinum blond.  At my age, platinum blond would look more like Grandma Moses than Marilyn Monroe.  I notice my skin is getting drier and my hands are more wrinkly, but beyond that and some "creakiness" about my joints, I'm not deteriorating physically too much.  I still need to lose weight and exercise more, but that's the story of my life and has nothing to do with being elderly.  

So what's the big deal about "elderly"?  I think it is the fact that I'm much closer to the end of my story than the beginning.  It's been a really good story, all in all, and it's probably got some great chapters ahead of it, but I can see that the bookmark is moving much closer to the back cover and I don't want it to end just yet.  

I like to read my favorite books over and over again.  But I only get to go through MY story once.  This is probably the reason people write memoirs - or blogs.  

Enough, if something from our hands have power
To live and act and serve the future hour;
And if, as towards the silent tomb we go,
Through love, through hope, and faith's transcendent dower
We feel that we are greater than we know.
- William Wordsworth The River Duddon, 1820

Tuesday, March 22, 2011


Charley's car needs some rather costly repairs and it's about 15 years old.  So before we fix it, we're trying to see how it would be to have only one car.  Cheaper for us, better for the environment and, when Sam doesn't have pneumonia, we'll benefit from doing our errands by foot in the neighborhood.  On nice days, Charley can take public transportation or ride his bike and I can have the car if I need it.  Now, if I can remember to make all doctor appointments on nice days...

This means yet another very large change (I refuse to say sacrifice) on my part.  I am a bird who has volunteered to have her wings clipped!  So for Lent, I guess I'm giving up one more freedom.  This time it is partly to benefit the planet (and the pocket book).  For the last year or so, I've been slowly surrendering all my freedom to Sam's health needs.  We now let him sleep whenever he wants which means he no longer goes to school and he is more than ever my constant companion.  His health is always precarious, so I am his devoted slave and nurse.  The lung doctor says that if it weren't for my care, Sam's story would have ended long ago.  When he smiles, I can't regret a single moment and I choose this life all over again.  

But I miss the world outside my living room window.  Especially now that it's spring.

Second Tuesday of Lent.  Readings for today are Isaiah 1:10, 16-20  Part of which goes:
Wash yourselves clean!  Put away your misdeeds from before my eyes; cease doing evil; learn to do good.  Make justice your aim: redress the wronged, hear the orphan's plea, defend the widow.

And Ezekiel 18:31

Cast away from you all the crimes you have committed, says the Lord, and make for yourselves a new heart and a new spirit.

And Matthew 23: 1-12 which includes:

The greatest among you must be your servant.  Whoever exalts himself will be humbled; but whoever humbles himself will be exalted.

These verses encapsulate a large part of my personal understanding of what it means to live as a person of faith.  Seek justice, care for the disadvantaged, try to do what is right, maintain a realistic picture of yourself and your place in the world (humility) and no matter how badly you messed up yesterday, remember you can always start over again every morning.

How do I do that as a stay at home - stuck at home - mother of a young man with profound disabilities?  

Well, step one: stop feeling sorry for myself.  

Step two: remember how much the world is inside my living room.  Internet, tv, phones; I am in touch with the world in countless miraculous ways.

Step three: gratitude for my many blessings.  I actually do get to choose how I will live my life. Every morning.  I don't get much choice about what happens to me, but I do get a lot of choice about how I will respond.  And a lot of beautiful things happen to me every day, every moment, every breath I take - and every breath Sam breathes.

Step four: don't be stupid or naive.  I'm stuck at home, I don't have my head stuck in the sand.  I'm not blind.  I can take action and reach out.  Actually, I do a lot of reaching out.  These verses and this personal credo are not new to me.  I've been passionate about justice for most of my life.  I may be finally forced to accept that "charity begins at home" and forced to put most of my energy into self care and Sam care, but I can still impact the larger world in small ways.  "Think globally, act locally" takes on a deeper meaning when you don't leave the house more than two or three times a month!

In fact, if I had been able to construct the events of my life and not just my reaction to them, I probably would have become a bright star that burnt out long ago.  I would have thrown myself into some form of activism aimed at saving the world without counting the personal cost.  Being a wife and mother, being Sam's mother, has forced me to slow down, recognize my impotence and that I too have needs.  I am responsible for such a very little and incredibly precious and fragile fragment of the universe: Me and my family and a couple of birds.  At the same time I am part of the human race, and a resident of this planet.  Caring for myself and my family must take that into account.  My focus remains on the small world inside my living room and my awareness includes the larger world beyond it.  I buy plant based laundry detergent and sponsor children in Africa and welcome whomever comes to my door and sign petitions to end DOMA and donate to relief for tsunami victims.  But mostly I check Sam's oxygen levels and pay bills and fix meals.

Maybe all the events of my life are carefully aimed at bringing this co-dependent, Eneagram 2, earth mother with PTSD toward balance and perhaps someday enlightenment. 

Friday, March 18, 2011

Oh Darn

Sam has aspiration pneumonia again and worse than it's been for several years.  I've got him on oxygen most of the time and he's taking antibiotics.  The doctor said to wait 48 hours and if he didn't turn around, I'd have to admit him for IV antibiotics.  The 48 hours is almost up and I think he's improved - slightly.  I really want to make the right decision here.  Going to the hospital might be an important step to saving his life.  We don't want to increase the already extensive scarring of his lungs.  There are so many parts of his lungs that no longer work.

On the other hand, we both hate going to the hospital.  He can't move because of the iv in his arm and I have to sleep on a very cold, hard window seat!  A smaller consideration is the fact that the State of Illinois will not pay me for the days he is in hospital because they think of it as time I don't work.  Hah!  This is a small consideration because they only pay me for 4 hours a day anyway!

It's Lent.  You would think this would give me time to reflect and be mindful of my life.  But frankly, I'm too sleepy.  MY body has never really accepted Sam's habit of sleeping from 4 am to 11 am.  I still like to sleep from about 10 pm to 6 am.  So when he's sick I only get a couple of hours sleep.  Then we both nap in the afternoon on the couch.  But the rest of the day I'm giving him medicine and wandering around the house like a zombie and groggily trying to think of all the things that need doing.

Oh and watching tsunami videos.

I heard from my friends in Japan and they are okay but in shock.  They are still experiencing several after shocks daily.  Tsunami and nuclear explosions are the terror at the core of every Japanese soul and they are suddenly facing both at once.  My heart weeps for them. 

Want to do something?  You can donate to people who seem to be doing a good job with the relief efforts:
American Red Cross
Salvation Army
Crash Japan

Wednesday, March 02, 2011

Sam's Condition (just the bad stuff)

I had to write this for a social worker.  It was hard.  So I thought I'd post it, because it felt like a challenge like this should be memorialized - or something.  Either I'm just feeling sorry for myself or else I'm really proud of my ability to spell arcane medical words.

Sam Forsberg is a 29 year old boy with the mental capacity of about an 18 month old.  He is about 4 1/2 feet tall and, on a good day, weighs 80 pounds.  If he goes too much below 75 pounds he gets sick from being too thin.  He has aphasia (which means he can't figure out how to talk) and dysphasia (difficulty swallowing).  He also has a very high arched palate which may be part of his swallowing difficulties.  He has bi-lateral choroidal coloboma (which means a hole in the back of both of his eyes) and strabismus and nystagmus (which means his eyes wobble up, down and sideways).  The last time we took him to the eye doctor, she said he also has some astigmatism.  He has a certain degree of ataxia (which means he shakes or trembles a lot especially when tired.)

All of this is because something went wrong about a month before he was born.  Maybe he had a stroke.  He was born with brain damage in the back part of his brain.  He can't walk because he has damage to his vestibular nerve and so he has very little sense of balance.  He isn't very strong, tires easily and has very low muscle tone. He also doesn't have a very good temperature regulator, so I can't take him outside if the weather is too cold or too hot.  He has asthma, so I am not supposed to take him outside on "ozone action days".

He can't chew, which means everything he eats must be pureed or mashed.  According to the dentist, this means his teeth are MORE likely to decay than if he actually chewed, so I have to be very careful to brush his teeth often.  If he swallows something too thin, he chokes and some of it goes into his lungs.  If he swallows liquids that are too thick, he chokes and stuff goes up his nose.  Sometimes things that he has swallowed half way come back up into his nose and then, we think, go back down into his lungs.  He has very extensive nasal polyps because of this nasal regurgitation.

All of his life he has had a lot of congestion.  No one is quite sure why.  He doesn't seem to have any allergies, although he does have asthma because his lungs are so chronically full.  His nose is always running and he often has huge amounts of mucus clogging his nose and throat.  He had almost constant ear infections as a child.  The muscle that is supposed to help his ears drain is either missing or non-functional because of his high palate.  We lost track of how many different ear doctors tried to put tubes in his ears.  (I can think of 5 off the top of my head)  The tubes never lasted long.  But his ear drums have been perforated so many times that he seems to have developed permanent holes in them now, so we don't have as many ear infections.  This is good because he is resistant to some of the antibiotics and allergic to others because he's been on them so often.  Now we try to avoid using antibiotics as much as possible.  He usually gets pneumonia about once a year and we give him antibiotics for that. 

About 6 years ago he had a very bad bout of pneumonia and had to be hospitalized.  At that time we met Dr. Mutlu.  He has been caring for Sam's lungs ever since.  He discovered that Sam also has Central Sleep Apnea  which causes his Co2 levels to rise.  Sam is in compensated respiratory acidosis.  This means his body is working overtime to compensate for the extra Co2 in his blood.  If the Co2 rises too much, he dies.  So bringing down the Co2 has become a central focus of our lives the last 6 years. 

We tried for about a year and a half to get him to wear the bi-pap machine, but finally gave up because I wasn't getting any sleep and started to see snakes in the corner of the room!  Instead, I keep a close watch on his blood oxygen level with a pulse oximeter.  I try to keep it between 87 and 95.  If it gets too low, I have an oxygen condenser at home and I can give him oxygen.  It never gets too high naturally, but sometimes it can get too high with the oxygen condenser.  If it gets too high, the sleep apnea gets worse and his Co2 levels rise.

He has always seemed to sleep best between the hours of about 4 am and 11 am.  I used to dress him in his sleep and take him to the car to get him to school or program.  He was always late.  I would feed him in the car when he woke up.   Dr. Mutlu said this should stop.  It is vital that Sam sleep whenever he can.  When he sleeps deeply, he breathes deeply and this is the best way to bring Co2 levels down.  So we let him sleep.  He often takes a nap in the afternoon as well.  This means that he has been unable to attend Esperanza very often.  When we have a very good day, I bring him to visit for a few hours from about noon to when they close at 2:15. 

In addition to letting him sleep and preparing all his meals carefully so he won't choke or regurgitate, there are also his breathing treatments.  I give him chest PT with a chest vibrator 2 or 3 times a day.  This takes 30-45 minutes each time.  I also give him a nasal irrigation twice a day and nebulizer 4 times a day with medications prescribed by Dr. Mutlu.

I have three recent examples of how necessary all this is.  First: in December my husband had surgery for prostate cancer.   He came home with a catheter and was very weak.  I spent a great deal of time taking care of him.  I skimped on Sam's treatments.  Sam got pneumonia.  Second: whenever I fail to keep all the food and sleep and treatments in balance, Sam is up all night whimpering.  Third: When we went to see Dr. Mutlu on February 22 of this year, Sam's blood gasses were stable!  After 6 years of rising blood levels, and all my efforts to slow the rate of rising, we have finally stabilized him!  His blood levels are still much higher than normal, but this is a great victory.

So, in summary, a brief list of his many diagnoses would include: profound mental retardation, ataxic cerebral palsy, chronic hypercapnic respiratory failure, bronchiectasis, central sleep apnea, asthma, dysphasia and aphasia.  There's probably a several more, but that's all I can think of at the moment.  Dr. Mutlu speculates that he has Joubert's Syndrome.  His small stature is due to failure to thrive in his first year.