The Joy of Christmas

Dear Friends and Family: 

It is two years to the day when I got three disturbing phone calls in a row from Joy's cellphone.  She had left earlier in the morning to go to the Pitney Bowes facility in Corona about 45 minutes north of us. It was to be her last day of work for ten days. She had been working very hard, both at her job and at preparing for Christmas and was looking forward to some time off.  A few hours after she left, my cell phone rang and I answered it but there was no voice at the other end.   All I could hear was the sound of a vehicle moving through rainy weather.  No one spoke.  I spoke Joy's name, but there was no answer.  My initial thought was that she had perhaps been kidnapped and had speed dialed my number to let me know she was in trouble, but couldn't speak to me.  So I hung up.  I was going to call her back, but I thought, that if she had been kidnapped and the kidnappers didn't know she had a phone, that a call from me would alert them.

The phone rang again and I heard the same noise: the sound of driving in the rain.  After few moments I hung up again.  I was trying to figure out what to do.  Should I call the police?  A few minutes later it rang again.  This time Joy's friend Cyndy was on the phone.  I asked what was going on, that I had had these two strange calls and was very worried.  She said she was trying to use Joy's phone to call me, but couldn't figure out how to use it.  She said Joy had showed up in Corona with a terrible headache, a headache like none she had ever experienced.  She had laid down on the carpet in her office.  She was frightened.  Cyndy had called an ambulance, which had arrived and they were on the way to the emergency room.

And so began our terrible ordeal.  I drove up to the hospital where it had been determined that she needed to go to another hospital that was  better able to handle serious neurological problems.  That was Loma Linda University Medical Center.  The next day we learned from her scans and tests that she had two aneurysms; that one was rather large and needed to be clipped in a craniotomy procedure and that the second one could wait because it was small and in a difficult place to treat deep within the back of her brain.  We were later to learn that the second aneurysm was small because it had burst that day.  The blood on her brain from that aneurysm would cause severe vaso-spasms, which eventually led to her stroke ten days later.

It doesn't seem like two years ago. It seems like last week. The time has apparently flown by as we've spent so much of our time caring for Joy.  The horror of the next four or five months after that rainy day just before Christmas will live with me forever. She actually stopped breathing early in the morning on January 3rd, 2011, but the doctors and nurses brought her back by installing a breathing tube.  She spent two months in intensive care at two hospitals.  And then 9 weeks at a rehabilitation facility which was itself a difficult experience for Susan and me, having to witness not only Joy in such a helpless condition on a daily basis, but also the scores of broken people who were fast approaching the end of their lives.    

This Christmas I will miss the old Joy, who would work herself into exhaustion preparing for Christmas--shopping, making jams, jellies, toffee and cookies, cooking and pre-assembling the Beef Wellingtons to be served at Christmas dinner, wrapping presents and mailing them off, and decorating the house.  She loved Christmas, and was intent on making it special for everyone.  I tried to help reduce the load on her by volunteering to do those things I could do, but it always seemed she would add another task to the list of things to do to replace the one she could strike from the list because I was doing it.  It seemed she could never do enough for those she loved.  

We will have a happy Christmas this year.  We have much to be grateful for.   Sister Susan came through her chemotherapy treatment for lymphoma successfully and is now in remission.  (Joy had learned of Susan's cancer a month before her own health crisis and it was something that was worrying her terribly in the run-up to that Christmas.)  Joy is progressing in small steps as she grows stronger and more confident. She is getting better at doing tasks.  She frequently comes into the kitchen while I'm cooking and tries to do things to tidy up.  She checks the pots on the stove to see if everything is being prepared properly.  And she's enthusiastically helping with the dishes after dinner, as the picture of her and her nurse Wendy below shows:   

I also think Joy is tiring of having everything done for her.  She wants to help do everything, but still doesn't quite have the understanding or dexterity to perform more complicated tasks.  She will become more able as her health and awareness improve and as she re-learns basic skills for living.

Sister Susan came over to help decorate the tree last weekend and here is a picture of the two of them having fun together hanging ornaments:   

Our plans are to go to Sue Thomas, John Kilker and Mary Anne Schetter's house down the street for Christmas Eve dinner. Susan and Paul will be there.  The following day, Susan's son Jonathan will arrive with his wife Jen and we will spend the late afternoon and the following days visiting with them.  I've made sure that Joy has lots of presents to open on Christmas morning. 

Christmas celebrates the birth of our Savior and it is my favorite holiday of them all.  It is an event that has inspired men and women down through the ages.  In the kitchen these days I listen to classical Christmas music that His birth inspired and it lifts me like no other music.  The birth of Jesus, the most influential and consequential man who ever lived, also marked the birth of the religion He gave to the world, the true religion of peace. I am grateful to God for the gift of his Creation and for blessing us with the gift of his Son.  Joy to the World! The Lord has come!

Christmas has always been a holiday that honors and celebrates children. Joy, in many ways, is a child now and does everything at a child's pace. For example, it takes here nearly an hour to eat her dinner. She's been relieved of all the stress and anxiety of her former life and lives in a simple, calm and happy world where every object that catches her gaze is cause for wonderment.  It's as if she is seeing everything for the first time.  When Sue or Natalie  take her shopping they come back and always say, "She has to touch and handle everything in the store!"  I look forward to seeing Joy open her presents and enjoy the festivities of Christmas day. 

The other day we received another beautiful hand-made card from Linda and Colin Carr who live in Spain.  Across the bottom of the front of the card were silhouettes of figures in a winter scene.  At breakfast the other morning, Joy was touching the figures on the card and smiling at it for a period of several minutes.  It was as if she was in the scene and enjoying the winter wonderland with the silhouettes.  It appears that Linda used a painting by Thomas Kinkade and added the silhouettes herself on a fold out section to create another three-dimensional card. The photo below doesn't do it justice:

     

Have yourself a merry little Christmas 

Let your heart be light

From now on, our troubles will be out of sight

Have yourself a merry little Christmas  

Make the Yuletide gay 

From now on, our troubles will be miles away

  

Here were are as in olden days

happy golden days of yore 

Faithful friends who are dear to us

gather near to us once more

  

Through the years we all will be together

If the fates allow

Hang a shining star upon the highest bough

And have yourself a merry little Christmas now.

Merry Christmas to you all and best wishes for a happy and prosperous New Year.

Love, 

Joy and Doug

Dear Friends and Family: 

We are plodding along here.  Joy seems to have fully recovered from her surgery.  She hit a plateau there for a while, but now seems to be gradually returning to the slight upward curve we've observed since the beginning. The other day when we were driving down to see Dr. Sanchez, she was holding a bottle of water and was having trouble getting the cap off. (Her right hand lacks some dexterity.)  So I took the bottle and unscrewed the cap for her.  Because I was driving, she reached over to hold the wheel while I did the task for her.  This was something she used to do frequently before her stroke because I tend to succumb to all manner of distractions while driving.  She saved us from running off the road at least once that I can recall and probably more times than that. Just another little sign of her slowly increasing awareness. 

Last week we had another visit from Joy's Pitney Bowes co-workers and friends, Cyndy Smith and Georgia Schweitzer.  They are overwhelmed by work and the general struggle for survival, but always manage to take time for a visit when they can.  Cyndy lost her father this year, and Georgia has burdens of her own.  They miss Joy and her amazing abilities on the job.  This time they brought her a belated birthday gift, a blanket with the words, "joy,"  "happiness," and "peace" printed all over.  Very cute and appropriate.  I think she is happy most of the time, although there are not the soaring highs (and accompanying lows) that she once experienced.  Certainly she is at peace and of course she is still JOY.  Here are pictures of the visit:

Cyndy arrived before Georgia did, and Joy's reaction when she saw Cyndy come into the house was more energetic and aware than any I've seen since before her stroke.  She immediately tried to rise to her feet and with a little help succeeded.  She was very aware of who Cyndy was and clearly overjoyed to see her.  It was heart-warming to see her so in-the-moment again. 

On Halloween night, Joy's nurse Wendy Ward took her to a church Halloween celebration that was attended by hundreds of adults and children.  Wendy and Natalie Kinsley, also a nurse for Joy, met up at the church function, where Natalie was manning the pizza stand.  Here are some pictures from that evening:

Natalie, Joy, Wendy and a caramel apple 

A penguin befriends Joy 

Thanks to Wendy for sending the photos.  Wendy is the newest addition to our team and works in the evenings five days a week.  It would not be possible for me to care for Joy alone.  Sue, Natalie and Wendy are an indispensable part of our family life now.  I'm eternally grateful to all of them. We are truly blessed.

Tomorrow is election day and I will vote for a change.  I will vote for Mitt Romney because, as Clint Eastwood says, "when they don't do the job, you got to let them go."  Some of my very best, dearest and oldest friends who read this blog are liberals and/or Democrats.  I try to make this blog all sweetness and light, but today Joy, who slowly evolved from a liberal into a conservative in our twenty years together, and I have a warning for them:  TOMORROW WE ATTACK AT DAWN!

Just kidding, I love you all dearly and want the best for our country.  If Obama wins again, he will have my respect and cooperation.  

God Bless America. 

Surgery

Dear Friends and Family of Joy:

Saturday, September 1st:  Joy has come through her reconstructive surgery in fine form.  Doctor Sanchez was pleased with the result.  In the early morning before the surgery, he told me that he had been viewing 3D models of Joy's cranium the previous day and noticed that the clip that had been installed to isolate one of her aneurysms was dangerously close to the inside surface of her skin that covered the void at her temple.  He was concerned that when he peeled back her skin in that area in order to install the Titanium mesh, that he might disturb the deformed artery that had been clipped.  That did not happen as it turned out, thanks to his careful efforts and expertise as a neurosurgeon. 

The surgery lasted only two hours and fifteen minutes although Dr. Sanchez had reserved four hours in the event he encountered problems. It went well and Joy was placed in Intensive Care for the rest of the day and night.  She was mostly unresponsive during the rest of the day, but this morning she was  awake and alert although she seemed annoyed at having gone through surgery once more.  Here's a picture of her this morning in the ICU, twenty-four hours after coming out of surgery:

For me this morning she didn't smile at all, but this afternoon after coming home, I got a call from our friend Dr. Chuck Smith, who had stopped by after work to see Joy.  She'd been moved out of the ICU and was in the secondary neuro-unit.   He said she was smiling broadly and that she looked great.  We are hoping to bring her home tomorrow.
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Update, Tuesday September 4th:  "Tomorrow" was Sunday and she did not make it home.  Speech therapists were concerned that she was not eating and that she pocketed some apple sauce they gave her. She failed what is called a  "swallow test."  This was not an unusual occurrence for those of us who have been caring for Joy at home for the last 16 months, but it alarmed the specialists at Scripps Green sufficiently for them to advise against her release.  The neurosurgeon on duty, Dr Uchiyama, considered their opinion and decided to keep her one more night.  The following day, the same thing happened with the speech therapist, Joy didn't eat and pocketed some liquid, but after a long consultation with Dr. Uchiyama, who asked all the right questions (Dr. Sanchez was off-duty all weekend), she was allowed to come home on Labor Day.

I was somewhat concerned myself about bringing her home because she appeared to have weakened overnight, but once home she responded as we thought she might and started eating and drinking as we hoped she would.  My sense is that the constant attention she got in the hospital-- the turning and changing of position every two hours, the regular checking of vital signs-- combined with the noise of the equipment and its seemingly endless variety of beeps and buzzers, had deprived her of sleep and sapped her energy.   Once home, she seemed to return to normal within a couple of hours, although she is understandably still weak.

Here's a picture of Joy just before she was released on Monday afternoon:

 She's managing a little smile, probably because she knew she was going home.  She looks a little flushed because she had a slight fever, which stayed with her throughout the day, but now, on Tuesday morning, is nearly gone.

And here's a photo taken just before noon today.  Nurse Sue Thomas had cleaned Joy up and fixed her hair so that it covered her incision pretty well.  The incision is far longer and higher up on her head than I thought it would be.  I thought Dr. Sanchez might use the original incision line but I was in error.  I'm not sure why, but he cut an entirely new line that ran up near the center line of her head and then down to her ear.  I'm sure he had his reasons.  She's tired and cranky, but who wouldn't be under the circumstances?

 

Joy's 60th birthday party on August 12th was a happy occasion and Joy thoroughly enjoyed herself.  We had upwards of 15 guests and Joy received too many presents and cards to list here.  Special thanks from Joy and me to all those who contributed to the celebration, including sister Susan, who did much of the cooking.  I could tell she didn't quite get the concept of blowing out the candles on the birthday pie so I blew them out for her with the hope she will receive the blessing of the deeply-held wish of everyone in attendance that she will continue to recover and improve in the years to come. We are in this for the long haul. 

Below a special gift given to Joy by our neighbors and dear friends Donna and David Wilbur.  It's  metal sculpture cut out of sheet steel and we love it, since it evokes a scene those of us who live in Rancho Heights see on a daily basis: coveys of California quail running across our meadows, hillsides and roads:

Thank you, David and Donna, and thanks to you all who continue to pray for Joy and keep her in your thoughts.

Love,

Doug and Joy 

A Busy Month Coming Up

Dear friends and family of Joy:  Joy has had a good month after overcoming a urinary tract infection.  She's eating well, walking more and seemingly more aware of her environment.  She still has problems with her vision and coordination on her right side, but is improving, although slowly.  Nurses Sue Thomas, Natalie Kinsley, Misty Kent and Wendy Ward are taking good care of her day and night.  She frequently goes into town with Sue and Natalie to shop, get her hair done, or for lunch and a manicure. Before her ordeal, Joy was what might euphemistically be called an "enthusiastic shopper" but more realistically described as a "cutthroat deal-hunter."  She has lost none of her zeal in that regard for being in the stores and viewing the merchandise.  She always loved to shop for apparel, fabrics, knick knacks, gourmet food and shoes.  Sue and Joy's sister Susan frequently take her to Kohls, Ross, Trader Joe's, Walmart and the shoe stores.  They are at Costco as I write this. 

Brother-in-law Paul has helped me obtain an email address for Joy.  It is

joy@eatonbuilding.com 

If you'd like to send Joy an email, we would welcome it and will read them to her.  We are not sure how much she absorbs from our reading such things to her, but the view around here is that she is more cognizant than she may appear.  The other day, with my mother Dorothy on the phone, I put the phone in Joy's ear,  and Mom spoke directly to Joy for about a minute.  A big smile spread across Joy's face.  

I also have a new email address to use on our Ipad when I travel.  It is 

dpeatebc@me.com

I will be back in New Jersey, Pennsylvania and Delaware visiting my family and friends from August 15th through August 23rd.  Joy will be in good hands in my absence thanks to Sister Susan, Sue Thomas and the other nurses. 

When I return, Joy will have pre-op exams and tests on August 28th.  On August 31st, she will undergo re-constructive surgery to repair the voids in her skull resulting from uneven healing of the bone after her craniotomy in December of 2010.  She will spend at least two nights in Scripps Green Hospital at La Jolla and then hopefully be well enough to come home.  We hope that the surgery doesn't cause too long a pause in her recovery.  Based on previous experience, we have reason to believe that it won't.  That said, this will be a long and somewhat complicated procedure with Dr. Sanchez patching three areas of her skull and a cosmetic surgeon in attendance to make sure the her skin is repaired in such a way as to produce the best possible outcome.  At least it's not brain surgery . . .  

We will also be having a birthday party for Joy on August 12th, the day before she turns 60 years old on August 13th.  Several of our friends and neighbors have been invited.  The food will be great, since there are so many great cooks in our development. I'm looking forward to it.  

Yesterday, our brother-in-law Paul came by to take some pictures of Joy and me so that I might have some to post here.  At first he shot pictures of the both of us and then he shot a couple of me alone because I also wanted a photo to paste into to my seldom-used Facebook page.  After a few photos of me were shot, Paul and I looked around to find that Joy had disappeared, which caused momentary panic.  Turns out she had simply walked up the steps and back into the house by herself, which is the first time she has ever ascended steps without assistance.  We were obviously relieved that she had succeeded without falling, but her balance and vision are such that we can't let it happen again for the  foreseeable future.  There are only three steps in the back but the treads are 30 inches wide and require you to adjust your stride as you ascend.  But she made it!  Nurse Sue was surprised to see her walk into the house by herself.

And then today she again asserted her independence.  Sue took her to her house, which is just down the street, and left Joy in the car to drop off some things.  When she came back, Joy had gotten out of the car on her own, had walked over to the chain link gate that keeps the dogs in, and was trying to figure out how to open it.  It was only a matter of time before she struck out on her own.  I view it as a significant step forward in her recovery, but it does present some dangers and we will now have to be more vigilant. 

Here are some of the pictures that Paul took.  In the first, Joy was being playful and put her sunglasses on me: 

In this one, we are talking with our fingers.  Joy tends to communicate by pointing or waving her finger sometimes.  In this picture I think she was saying, "you better be careful," and I replied "no, you better be careful" (or something like that):

And here's another next to the pool with the breeze blowing Joy's hair:

And here's one of my favorite photos from the past called "shooting the rainbow," taken in March of 2009 down on St Croix by my good friend Charlie Simpson.  Joy loved the photo when she first saw it-- or she did until she noticed she had a cigarette in her hand.  I still love it:

Love and good health to you all,

Doug and Joy

Spring

Dear friends and family of Joy:

We've had a lovely spring here in Southern California.  Temperatures have been mild and the blooms of wild flowers plentiful and long-lasting.  Historically we usually have had some hot days by mid-June, but not this year. Rainfall this past winter was plentiful enough and temperatures this spring have ranged in the high 70s to the low 80s.  The ceanothus, sage, chamise, monkeypod, yucca, and poppies are blooming profusely every where.  It's been the most colorful spring we've seen since we moved down here in 2004.

Cyndy Smith and Georgia Schweitzer, Joy's friends and former co-workers at Pitney Bowes came for a visit on May 25th and, after a lunch of sandwiches, we had a little dance party.  Joy had lots of fun and showed off a few dance moves I hadn't seen for a while.  Here are some pictures of Joy, Cindy, Georgia and Joy's nurse Natalie Kinsley dancing up a storm to Michael McDonald on the ipod player:

In the picture below, Joy is in the middle of doing a little spin:

I want to thank Cyndy and Georgia for staying in touch and continuing to show their love and support for Joy.

We did have some sad news this month.  Emelda Beltran, who joined us as Joy's night nurse in January, became ill in mid-May and passed away on May 31st.  Emelda was the mother of one of our neighbors, Josie Pfaff.  She was an elegant Filipino lady who did not speak much English, but who connected with Joy immediately upon meeting her and communicated with her in an intuitive way.  She will be missed.  Joy, our nurses Susan and Natalie, and I attended the memorial service Josie and her husband Dave held for Emelda at their house down the street from us.  It was very moving.  Our prayers and heartfelt condolences go out to Josie, Dave and their children. 

Joy and Natalie took a spa and a swim one warm day and I shot a few photos.  It was gratifying to see Joy enjoying the water.  Last July we put her in the spa and the pool and she didn't seem to like it.  She was anxious and couldn't relax. (Joy is a New York City girl  with a healthy fear of water.  I remember trying to teach her how to dive at the association pool in Rancho Palos Verdes when we first met.  Over the years, whenever we swam in the ocean she made sure not to venture out in water over her head.)  This time she was completely at ease as the pictures show:

 We had an appointment with Dr. Sanchez on Thursday.  He was pleased with Joy's progress and encouraged us to increase the amount of exercise she takes.  He said that while her progress had been slow, he believes she will always continue to improve and learn new things.  Unfortunately, Joy will require one more major surgical procedure, which we discussed with the doctor.  Her skull did not heal properly after her craniotomy in late 2010; she has two large indentations at her temple and above her ear and a small crease indented on her forhead.  Doctor Sanchez will use a patching procedure that requires mesh and synthetic materials to fill these voids.  It will not only improve how she looks but it will improve the structural strength of her skull and reduce the possibility of serious injury should she ever fall again and hit her head.  He will also use the services of a plastic surgeon to make sure her skin correctly covers the patches and heals properly.  The procedure is tentatively scheduled for early September.  I would like to thank Dr. Sanchez for his caring and professional manner.  He is a fine doctor. 

Joy is beginning to recover her ability to perform simple tasks.  She loves to tidy up the small messes she finds (the ones I have a habit of leaving around the house--some things never change), and occasionally walks into the kitchen and attempts to help with the chores there.  Her ability to execute tasks is limited--she cannot, for example, remember where to put the dishes when they are clean--but she is trying and most importantly, interested in helping.  It's a long-term process, but we see small incremental improvements occurring every week.

But she is still very much Joy.  Her generosity, one of her more endearing traits, still shines through.  Whenever she is eating something she never fails to offer a bite or a spoonful, whether it be a sandwich or ice cream,  to whomever she is with.  

More birds: we have a second clutch of bluebird eggs in one of the bird houses, but also ash-throated flycatchers nesting in another.  An interesting characteristic of the latter is that they build their nests almost entirely of animal hair.  Below a picture of the female and then the male as he views me warily taking his picture:

  

And then a picture of a male with a very pronounced crest that I took last year:

I hope you all have a fun and relaxing summer.  I am planning a trip back home to New Jersey sometime in August before Joy's surgery.  I look forward to seeing friends and family spread out in three states. (Good thing they are small states. Out here we have counties that are bigger than eastern states-- for example, San Bernadino County, which is larger than Massachusetts.) It's been a while since I've been back east and I always enjoy it in summer because it feels so tropical compared to our hot, arid climate here in California.  If any of you would like to come visit us, please feel free to call and let us known your plans.

Love to you all and thank you for thinking of us,

Doug  

One Year At Home

Joy returned home from the rehab facility at Carmel Mountain one year ago, April 29th, 2011.  This year, that date also marks the 20th anniversary of the day that Joy moved up from Los Angeles to Oakland in 1992 to live with me in a house that we rented together on Morgan Ave.  Pre-marital bliss, you might call it.  It was, coincidentally, the same day that the riots began raging in Los Angeles over the Rodney King verdicts in favor of the two policeman who had beaten him.  I remember Joy and her sister Susan drove up together in Joy's old Mercedes with a two caged birds and a cat named the Motor City Kitty in the back seat.  When they arrived, they had no idea that Los Angeles had exploded and been burning the entire day.  They had been listening to music on the cassette player (remember those?) and singing along to pass time during the 7 hour drive. 

The riots in Los Angeles turned out to be a problem for Joy.  She had just purchased a condo in Rancho Palos Verdes and had intended to sell it because of the move to Oakland.  The riots made that very difficult by depressing property values and after several months of trying to rent it, she finally sold it at a loss.  After six months of renting on Morgan Avenue, we decided to buy our own house on Davenport Avenue in Redwood Heights and that turned out to not only be a wonderful house to live in, but one that rewarded our investment handsomely when we sold it twelve years later.  I'm sure many of you remember that house.  I have many joyous memories of our time there. It was difficult for us to leave when we finally sold it in 2004. 

Although I sometimes despair at Joy's condition and the slowness of her recovery, when I think back on her condition in late April 2011, I see how far she's come.  She couldn't walk or move her right arm or right leg.  She couldn't get out of bed without our deploying a Hoyer lift.  We all wondered how she would interact with the dogs when she arrived home, but at first, she didn't even see them, since they were in constant motion and her eyes couldn't follow fast enough.  She couldn't eat or drink and got her food and water through a j-tube.  She was severely disabled. 

She's come a long way.  In the past two months she has had some problems with urinary tract infections (UTIs), and the antibiotics they prescribe for that cause her intestinal problems which we are dealing with, but in general her condition is good and improving.  Her performance in physical and occupational therapy is good most days but not always.  Therapy will come to an end soon, since we are beginning to run out of visits paid for by the insurance company, and because the therapists feel she needs to make more progress at home before they can continue to work with her.  She was discharged from the rehab hospital for the same reason a year ago and I feel that it was actually better for her to come home than it would have been if she had stayed at the rehab facility.  The nurses and I provided far more personal attention than she was getting at Carmel Mountain. We will continue to work with her at home with an instructional sheet provided by the therapists at the Scripps Rehab facility.  Once she achieves the goals they have set out for her, we will resume her sessions there.

Here's a picture of Joy taken a few days ago:

We've had to take her to a urologist to treat her UTI.  We have also scheduled her for a mammogram and a visit to a gastroenterologist.  Tests revealed some potential issues with her intestinal tract, but nothing serious so far.  We want her to be as healthy as she can be.  UTIs tend to effect concentration and can set back progress made in therapy.  They are a common problem in stroke victims and are often difficult to treat.  We are doing our best. 

This week we took her back for a visit to her primary care physician, who hadn't seen her in six months.  The doctor's nurse was genuinely surprised at how much better she looked than she had in her previous visits.  Dr. Christina Bailey gave Joy a check up and at one point during the exam she began to ask Joy questions to see if Joy would respond.  Joy did not respond to three questions so Dr. Bailey said to her, "I see.  You can't talk.  That's all right.  But do you understand what I am saying to you?"  Joy's eyes lit up and she immediately nodded her head.  The nurses and I were aware that Joy frequently understands what we are saying to her, but it was still nice to see her confirm it so enthusiastically. 

We are having a gorgeous spring here, one that suggests to me that our move from Oakland eight years ago was the right decision.  The wild flowers are blooming every where, the birds are nesting in the three bird houses I've built and the temperatures are balmy.  Bluebirds have nested for the fourth year in a row in one of the houses and I've taken some pretty good photographs of them:

I just love bluebirds.  They are such acrobatic flyers.  We generally have two nestings in our boxes per year.  We also get ash-throated flycatchers and house wrens, who are ferocious little creatures.

I will try and post more frequently in the future.  Love to you all and thanks for thinking about us.

Doug  

Joy Is Doing Just Fine

Dear Friends and Family:

My apologies for not posting for a while.  

All things considered, Joy is healthy and progressing.  She is happy and relaxed.  We regularly see little indications that her awareness is increasing and her physical abilities are improving.  As I have said, the pace will be slow toward some kind of self-sufficiency, but the timing is mostly beyond our control and we will never cease striving to help Joy improve the quality of her life. 

Visits to the physical and speech therapists at Scripps Encinitas are producing results.  Joy now understands the concept of therapy and is actively trying to improve the skills she will need to live a full life.  She is concentrating on the exercises they are teaching her and improving, although there are times when her concentration lags a bit.  Our speech therapist, Kelly, thinks that because of the atmosphere we have provided for Joy at home, her ability to achieve a significant recovery is enhanced.  By that she meant that many stroke victims are not provided with an active, challenging life and consequently spend much of their time sitting alone without stimulation.  We are lucky to still be able to provide Joy with full-time nursing.  The nurses constantly interact with her and challenge her to achieve the goals we have set for her.

I owe these nurses a lot.  Sue Thomas, Natalie Kinsley and Emelda Beltran are presently manning (womaning?) the shifts and are all excellent caregivers.  Before them we had help from Misty Kent, Angela Rudolph, Crystal Valdez and Teresa Demarco.  I wish to thank them all, and especially Sue Thomas who has been here from the beginning and tirelessly managed the whole affair.  Thanks, Sue!  Natalie also is a very fine and caring nurse, and Emelda works tirelessly on the night shift.  I thank them both.

We had one of those little episodes the other day that inspire us to carry on.  Joy was in speech therapy with Kelly and going through her swallowing exercises.  She still has a problem with pocketing liquids, a problem that originated with her stroke, but was compounded by the fact that most of her liquid intake was through her j-tube for nearly a year.  Kelly is dealing with the problem by feeding her liquids and sweet ices for much of the hour we spend with her twice a week.  She uses different kinds of drinks--milk, juice, water, to try and get Joy to identify and choose one she wants.  She uses a small laryngeal mirror to stimulate the back of Joy's throat when she decides not to swallow.

The other day she had Joy swallowing regularly and at one point asked Joy if she could open her mouth and say "AAHHHH."  Joy thought about this for a moment an attempted it.  We watched her struggle to open her mouth wide and make the sound for several seconds.  Finally she gave up and said, "I can't."  This was a revelation for us.  She had understood the command, tried hard to execute it and then spoke to us to tell us she couldn't.  There are usually several unique episodes like this every month.  Each of them reveals to us that she is progressing and re-invigorate us in our mission. 

Here's a picture of Kelly using the laryngeal mirror:

    Joy is also doing well in physical therapy with her therapist Rebecca, who concentrates on teaching Joy how to get in and out of bed safely, how to sit and rise from a chair, and how to use stairs.  It's amazing how complex a simple act like sitting in a chair is.  It involves perfect balance, peripheral vision, precise bending of the body at certain points, balance, hand coordination, and then strong muscle control.  Joy is getting better at it all the time, but has difficulty utilizing her right hand to assist in the process.  When ascending and descending stairs, she tends to grip the rail and neglect to slide it up (or down as the case may be) with her as she goes.  This indicates that her fear of falling is strong, but we want to develop her confidence to overcome the challenge.  It's helpful that the stairs at our house are less of a challenge than the ones at the hospital. They are narrower with handrails on both sides.  (I'm reminded that when I was designing our house, Joy asked why I wasn't designing a single-story house in the event we were still in it when we got old.  I told her that the site was so difficult we needed to build a two-story to get the floor space we needed and that we had lots of time before we would find stairs challenging.  Little did I know . . .)

Here are pictures of  Joy and Rebecca ascending and descending a long commercial stairway at the hospital:

Joy also made her first trip to the dentist in over a year last week.  Photo below.  I apologize for the haziness of the picture, but I'm using three cameras, my regular  Panasonic, our ipad, and my iphone.  I used the latter in our dentist Dr. Walker's office and didn't realize that the lens was dirty. I still haven't fully mastered the Panasonic and I've only started using the two others recently.  We've created instructional videos with the ipad in order to record procedures that the therapists use so that we might study them at home.  We recorded Kelly instructing us in swallowing exercises.  Also, Joy recently had to have her orthopedic boot re-inforced because she was finding her way out of it.  We recorded Jennifer, the sales technician, showing us how to fit and secure the boot properly on Joy.

Here's the hazy picture of Joy with Dr. Walker and hygienist Tiffany: 

 Joy had difficulty opening her mouth wide enough for the Doctor to examine her thoroughly and also couldn't tolerate the sonic cleaning procedure, but did have a good overall cleaning.  Doctor Walker said that what he saw looked good and that there was no sign of cavities.  We brush her teeth regularly and, in fact, sometimes take her in for an extra brushing when she pockets some food or drink.  (It's easier that way to get her to spit out what she's holding in her mouth.) Her teeth always looked very white to me, which was surprising because she was a moderate smoker, but she worked hard to keep them that way.  They still look just as white.

I'm building an entertainment center of sorts in the living room, where Joy spends her evenings watching the Hallmark and the Home and Garden channels.  I've got the boxes made of oak plywood installed and will build the cabinet doors of oak sometime in the next month.  Then the boxes get faced with oak around the doors.  The countertops will either be cut from a leftover piece of rose-colored marble given to us by Craig and Jackie Hill or some marble tile that matches the risers on the stairs to the second floor.  Here's a current photo of the work in progress:

I'm sometimes asked how I'm holding up and advised at the same time to make sure I take care of myself and do things I enjoy doing--to "take time for yourself."    I've never had a problem with that, and now that I'm apparently retired, I find I have the time to do some things I like to do and take care of Joy at the same time.  We are limited in our ability to travel right now, but I look forward to the day when we can travel together again and take some long overdue vacations.  In recent years Joy had been to Tahiti, China, and northern  Europe and Russia with her sister Susan, while we had traveled to St. Croix, Costa Rica, and Huatulco Oaxaca Mexico.  Joy loved traveling, and whenever the opportunity to do so avails itself we will come visit you all!

Okay, maybe not all of you, since I estimate there are at least a hundred of you who are following this blog, but as many of you as we can.  

Love from us to you all,

Joy and Doug

Quick Update

We've reached a milestone: Joy had her feeding j-tube removed on Tuesday the 31st.  This is the last of all the tubes and drains that were inserted last year during the holiday season.  At one time it seemed she must have been hooked up to at least ten tubes, drains, or wires.  We've slowly eliminated them over the year. We've also stopped using the wheel chair, the food pump, a walker, and the hoyer lift.  The only medical equipment we have left in the house are the bed with rails and a raised toilet seat with arms.

The tube was removed at Scripps Green in La Jolla.  We went there in the afternoon after Joy had therapy in the morning at Scripps Encinitas.  We had an hour to wait so we took a walk into the ICU wing where Joy spent the entire month of February last year.  We saw at least four of her nurses.  They were thrilled to see her and genuinely surprised she was doing so well.  We also saw one of the floor doctors who was astonished at how much progress she had made.  I was remembered as the husband who played guitar for my wife as she lay there mostly unaware of what was happening to her.  The floor doctor said, "She's gotten so much better because of all that guitar playing you did for her!"  Despite Joy's condition, those were good, hopeful days because she had a good man, Dr. Sanchez, caring for her and doing everything he could to relieve the pressure on her brain.  I felt she was making progress daily.  She had a beautiful room that overlooked the Torrey Pines golf course and the ocean.  I remember watching the hang gliders fly over the ocean during the days when the wind picked up. 

Last week she was fitted with an orthopedic boot to help eliminate some deformation in her right foot, which doesn't show when she walks but spasms and curls under tightly when she is sitting with her feet raised.  Her toes are also tightly curled.  She was fitted for the boot last week.  The technician thinks her foot will resume its normal shape in a few months if we use the boot according to instructions.  She will have to start sleeping with it on next week.  For the time being we put it on her for a few hours a day.

The physical therapist is also going to put in a request for a prescription for  occupational therapy, so now when we make the hour-long drive to Encinitas, Joy will be able to have one hour each of physical, speech, and occupational therapy.  That is where I'm placing my hopes for a significant recovery in the future.   The Scripps Rehab facility at Encinitas specializes in patients suffering from brain injury and, I'm told, is one of the best there is.  I usually go down to the clinic with Joy and either Sue or Natalie.  We watch the therapists work with Joy and learn things we can do with her when we are at home with her.

It was a good week.  

Love from us to you all,

Doug and Joy

A Difficult Year

The New Year brought some sad anniversaries with it and it caused me to reflect on this our most difficult year.  January 2nd was one year to the day since the last time I talked to Joy as she was.  I remember it well.  Joy had been cognizant and responsive for nearly two weeks after her aneurysm burst-- even after her craniotomy--but on New Year's Day her decline began.  On the 2nd, she was mostly non-responsive except for one moment when I asked her, how she was feeling.  She replied, "Ten percent."  That was the last coherent thing she said for at least six months and she has spoken only in fragments since then.  That night, in the early morning hours of January 3rd, I got a call here at home saying that she had stopped breathing and that they had installed a breathing tube.  They said she was stable.  I sometimes wonder now if she thought it was her time to give up.  But knowing Joy, it is far more likely that she would never have wanted to give up. 

The one thing I remember hearing repeatedly in those days from those who knew Joy best was that she would overcome this ordeal because she was a "fighter."  Having lived with Joy for 20 years, no one knew that better than I. It just didn't seem possible that this dynamic, energetic and talented person could be brought so low and then held down for any extended period of time.  I still believe this to be true, but but my definition of an "extended period of time," has by necessity been adjusted.  Joy's injuries were severe and her deficits are significant. I remember that as her ventricles were shrinking back to normal size and her brain was returning to its normal shape our friend the neurologist Chuck Smith expressed disappointment at the amount of brain damage that was revealing itself on the CT scans.  It is going to take a long time for her to regain her ability to take care of herself and we need to face the possibility that it may never happen. Or, as Chuck put it, we should "expect the worst but hope for the best." 

What Joy does have, and what I believe might eventually bring her to a level of recovery she would find acceptable, is her indomitable spirit.  Although this is a quality that is difficult to quantify, it's one that Joy possesses in abundance.  It's what has allowed her to progress and surprise her doctor and others who did not know her before her ordeal.  It's what continues to surprise us all now.  I remember the head physician at the Carmel Mountain facility scoffing dismissively at my statement quoting a therapist who had said Joy might walk again.  Well, she's walking a mile or more a day now.  She still needs assistance with her balance, but she's walking energetically.  As my friend Gary Nagle, who owns an assisted living facility, said, "Don't listen to the doctors." 

She's also becoming more assertive and difficult to handle.  Occasionally she's  disagreeable and uncooperative, especially at night.   My friend Jim Simpson believes this is a good thing and I agree.  A week ago, Joy was not cooperating with our attempts to get her into the bathroom and ready for bed.  (Sometimes she resists for no apparent reason.)  Because both the nurse and I were very tired and wanted to go to bed ourselves, I exerted some gentle force to get her into the bathroom to brush her teeth and dress for bed. After we finally got her in bed, she did what she used to do when she was mad at me:  she refused to look me in the eye and ignored me.  When I apologized and told her I was only doing it for her own good, she said, "Get lost." It shocked me, but I had to smile. She's becoming a bit combative again.  I think it's a good sign.    

On another day recently, she was working with her nurse Natalie on some interactive object-identification program on her Ipad.  I was walking by and stopped to try and encourage her in her efforts.  She wasn't having much success and I said something that in hindsight sounded a little silly and patronizing, although I was trying to be pleasant and encouraging.  She picked up on it.  "Bullshit," she said. 

Most of the time Joy is happy, loving and respectful to me, her nurses and guests.  And she is trying to be helpful with the chores.  One night, when she refused to go into the bathroom to get ready for bed, she chose to wander into the kitchen, where she began to tidy up the place a bit.  I had left a small pot of leftover rice on the stove that I had planned to feed to the dogs in the morning.  She picked up the pot, took it into the pantry and put it in the exact right spot on the shelf with the other pots--rice and all.  (It's the effort that counts.)  She also helps Sue fold the laundry and sometimes wipes the counters when I'm cleaning up the kitchen.

(I'm reminded of a funny story Joy told me when I first met her back in 1991.  While visiting her in Los Angeles, I always offered to do the dishes after she had cooked a meal.  She was impressed by this and told her sister about it.  Susan said, "Encourage him.  Even if you have to wash them again when he's done.") 

Some good news that marks further progress: we have discontinued her j-tube feeding.  She is eating solid foods entirely now.  We hope to have the j-tube removed in the next few weeks.  She's down to three prescription medications which are sometimes difficult to get her to swallow but we are getting more successful at it daily.  She's drinking more and still pockets liquids and food on occasion, but we have come up with some clever ways to get her to spit out what's been in her mouth for too long.

She's re-enrolled in physical therapy and is now also receiving speech therapy for the first time.  Her speech therapist, as is the habit of all therapists, asked at our initial meeting what my goals were for her and I recited the usual litany:  I'd like her to be self-sufficient, to be able to communicate on a basic level, to regain her sense of balance and perhaps to reach a level of dexterity that will allow her to resume doing the things she loves to do: paint, sew, garden and cook.  "I'm not sure those goals are realistic," she replied, "But we will try."  These types of statements tend to deflate me a bit, but then I think that the therapist is just another professional who didn't know Joy before her injury, and that it is a mistake to underestimate her spirit, her drive or her determination to refuse to accept less than what she wants and deserves.  I still have hopes that she will prevail in her struggle, that as she gets stronger and more aware, her ability to contribute to her own recovery will increase. 

Here's a portrait of Joy taken in 2009 while she was on a cruise around Tahiti with her sister Susan.  Susan and Joy customarily took one trip together per year to places like Alaska, New Zealand, Russia and Scandanavia or the Caribbean.  Of all the trips they took, I believe Joy enjoyed this one the most, although she was very impressed with New Zealand.  I love the photo because it captures the essence of her personality when she was relaxed and enjoying herself. 

  

And here's a picture of Joy sipping champagne on New Year's Eve:  

Thank you all for your prayers and best wishes.  2011 was a year that upended our lives.  The love and support of friends and family helped us through it.  To be honest, I had hoped we would be further along on the road to recovery by now, but it was not to be.  I am grateful that Joy is alive and getting healthier.  All we can do is hope, pray and work as hard as we can with her. 

Love from us to you all, 

Doug