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 

Merry Christmas

To all who love Joy as I do, we wish you all the best in the New Year. May you be blessed with good health and prosperity. 

Here's a picture of Joy using a mirror to check out her new hat (a gift from sister Susan) and her scarf that was knitted by our dear friend Jackie Hill:

A very 1960s hat, to be sure.  But having lived through the 60s, 70s, 80s, 90s and the aughts, we are comfortable in any decade.  

Love to you all . . .

A Christmas Blessing

Joy and I got up at 3 a.m, this morning (12/22) to go to the hospital for her angiogram procedure scheduled for 7 a.m.  But before I tell you about that I want to tell you about other events this week.

Joy had a fall yesterday.  She was in the bathroom being dressed by nurse Susan.  Sue had bent down to help put her shoes on when Joy lost her balance and fell between the toilet and the wall.  The right side of her face bumped against the toilet.  Because of this,  she has a bit of swelling and blackeye-ness around the edge of her right eye socket.  She had a small abrasion on the top of her head and another on her cheek plus a scratch on her hand.  I got there a minute after it happened and she looked bewildered but not noticeably in pain.  Sue was very upset, but accidents will happen and we were probably due for one.  It's difficult to be alert to such possibilities every second of every minute of every day.  Joy has fallen twice before, both times outside the house and both times was rescued before she could hurt herself.  We will be more attentive now.

Sister Susan's son (and Joy's nephew) Jonathan Fowler came for a three day visit this week with his wife Jennifer.  They were here for the holidays last year when Joy was first in the hospital, but couldn't visit because Jon had the flu.  But they had spoken to Joy on the phone in her room before the stroke felled her.  Joy and I went over to Susan and Paul's for dinner on Monday night so that Joy could see Jon and Jen.  Joy was cognizant of who they were and the love between them flowed.  You could tell she knew they were family.  Here's a picture of the gathering:

Jon and Jen are both graduates of UC Berkeley.  Jen has a doctorate in physics and astronomy and is a professor at the University of Denver.  Jon also is an instructor in physics there and teaches physics for the Princeton Review.


Now the really good news:  Joy's procedure went so well it has further convinced me that some one up there is indeed looking out for us.  All of you who are praying regularly for Joy have my gratitude.  A couple of months ago, Dr. Sanchez told us he thought that Joy's aneurysm, the one that had bled and caused her stroke, was growing again and that the growth was "not insignificant."  He based that on viewing CT scans, MRI and MRA images.  He thought he might have to install a stent of some kind, that Joy might have to take blood thinning drugs for several months and that her recovery might be set back for a while.

This morning when I spoke to him, he was also very concerned about Joy's head injury due to her fall and ordered another CT scan before the angiogram procedure.  I was dreading the outcome of the procedure and what the next few months might bring when he called a very short hour after she went into surgery and said that the angiogram had shown that all her arteries and both the clipped and the coiled  aneurysms were in very good shape, that there was no sign of internal injury from her fall,  and that nothing needed to be done.  Wonderful news!  He further explained that the scans and images really don't give them a very good view and that you really can't see what's going on until you get inside to get a closer look.  He suggested we do another procedure in a year, just to keep an eye on things. 

I could not have asked for a better Christmas present.  I said last winter in emails that Joy always tried to give presents that were more than the recipient was expecting and she did it again this year with the gift of her stable angioplasty diagnosis and improving health. Now it's back to facilitating her recovery as best we can.

Merry Christmas and a happy and prosperous New Year to all friends and family of Joy.

Love,

Doug and Joy

Waiting For The Procedure

Dear family and friends of Joy:  

We had a great Thanksgiving with enormous amounts of food and too much  football on tv. Sister Susan perfectly roasted yet another holiday turkey and the side dishes were all delicious.  Below a picture of the celebration:

 
Lots of smiles all around.  From left:  John, Mary Anne, Joy, Sue, Susan and Paul.

On December 4th, Joy and I went by ourselves to a Christmas party down the street at the house of our good friends Jackie and Craig Hill.  At first Joy saw all the cars outside the house and didn't want to get out of our car, but I persuaded her otherwise and as we got inside she was enveloped in the warmth of all her old friends in the community.  Of the 25 people or so who were there, half had not seen Joy since her stroke and all were overjoyed to see her out and about.   We ate heartily of the Christmas Chili and casserole and later from a dining room table filled with every conceivable kind of dessert.  It was our first night out together in a long time. 

Sue Thomas regularly takes Joy into town now for shopping trips and an occasional lunch.  Her constant interaction with (and devotion to) Joy is the reason that Joy is continuing to recover at a slow but steady rate.  One day we took Joy upstairs to our second floor master suite for the first time in a year and Joy got to visit her walk-in closet which contains clothes and accessories she had gathered over the past 40 years.  This was a thrill for her and her smile indicates how pleased she was to be there: 

 
It was wonderful to see her go up the stairs.  She did it fairly easily and surprised us.  We were hoping she would carefully take one step at a time and put both feet on each step, but she insisted on taking each step with one foot. She had a little problem with balance, but compared to the first time we tried climbing the stairs, she was very adept.  Two months ago she struggled terribly to get up the stairs to the landing halfway up.  When she got to the landing, she became afraid and decided she didn't want to continue on.  So we sat her down and slid her back down the steps on her rear. This time she was much more sure of herself, intrepid and determined.  It was yet another sign that she is improving, often in ways that we don't see until something dramatic like this happens.

I found this old photo of Joy and me and thought some of you might like to see it.  It was taken a few months after we met in 1991 when Joy was living in Los Angeles and I was in Oakland.  Back when we were courting, you might say.   She'd fly up to see me once a month and I'd fly or drive down to see her once a month.  This photo was taken at her condo at Rancho Palos Verdes which is just below all the beach towns in LA:

 
It was taken just before we went out to dinner at some fancy restaurant.  Joy looked stunningly beautiful that night.

Back to the present:  Joy's angioplasty procedure will take place this coming Thursday the 22nd, precisely a year and a day after she was struck down by her aneurysms last December.  I am feeling the dread I always feel before these procedures, although I feel she is in very good hands with Dr. Sanchez-Mejia.   We have to leave the house at 4 am to check in at 5 am at Scripps Green in La Jolla.   Surgery is scheduled for 7 am.  Please keep her in your thoughts and prayers. 

The landscape around here is often dramatically beautiful this time of year and I have a couple of photos to prove it.  The first shot is looking north out our backdoor at the San Bernadino Mountains at around 7 in the morning.  The sun had not yet risen above the mountain to the east of us.  The day before a moderate-sized Pacific storm had passed through.  The tallest peak in the San Bernadino Mountains is Mount San Gorgonio at around 11,500 feet:

Here's one of our house at sunset with the full moon rising and then another closeup of the full moon above the hills:

We live in a beautiful spot and we are grateful for it.

I will try and update everyone as soon as possible after Joy's surgery.  They think she might be able to come home after a night in the hospital and I hope that is the case.  We are also praying that her recovery is not interrupted in any serious way, that she can quickly regain her equilibrium after general anesthesia, although Dr. Sanchez has warned us that her recovery could be set back.

Merry Christmas to you all and may you have a happy and prosperous New Year. 

Love,

Doug and Joy

We Are Still Here

It's been sometime since the last post, so here's an update.  Joy is slowly progressing and we see countless little indications of that every week that are too numerous to list.  She is responding appropriately more often to verbal queues and doing little things like removing her socks when her feet get too warm.  Purposeful things.  Tonight she opened the door for Heidi after she scratched on it to come in.  In the picture below you will see that she has crossed her right leg over her left and is resting her right hand on a box at the kitchen table.  Six months ago, she could not move either her right leg or right arm. 

Joy with attitude

Tomorrow we go for a series of tests that we hope will assure the doctors that Joy will be ready for her angioplasty procedure that is now tentatively scheduled for December 22nd.  If vacancies in Dr. Sanchez's schedule occur before then, he will move the date up.  December 22nd will mark a year and a day since Joy's aneurysm burst, a sad and frightening day that I will never forget and one which changed our lives forever.  On December 23rd of last year, she had her craniotomy, which she tolerated well.  In fact, Joy was lucid and fully herself for nearly 9 days after her craniotomy, but then the vasospasms from the blood from the other aneurysm that had burst and leaked into the deepest part of her brain caused her stroke on January 3rd.  Later in January, the doctors at Loma Linda seemed to have given up on Joy and were planning to release her to a rest home where she most certainly would have died.  At that point a miraculous rescue occurred that was engineered by Dr. Chuck Smith and Dr. Rene Sanchez-Mejia and, after Joy was moved to Scripps Green Hospital, her recovery began in earnest. 

Yesterday Susan, who had just returned from a business trip to Las Vegas, came over to plan Thanksgiving with Sue and Joy.  Sue's family, which includes her sister Mary Anne and her brother John, will join us for Thanksgiving.  Given that all these ladies are excellent cooks, it should be a day of great food and happy times.  Here's a picture of Susan, Sue and Joy planning the menu:  

Here's another picture of Joy outside after a walk :  

After some problems and delays, we've downloaded selected programs from the apps store on Joy's iPad and she seems to be fascinated with the device.  We hope it will become a useful tool in her journey to recover her ability to speak. 

Finally, a photo of a black phoebe who has taken a liking to our new pool and the dead insects he finds on the surface in the morning.  Although my camera is not the greatest and I don't shoot from a tripod, I'm starting to get some pretty good photos of the wildlife around here.  I will post some on occasion. 

Happy Thanksgiving to you all.  I am profoundly thankful to the Creator to still have my beautiful wife here at home with me.  In the past two years, three men who live within half a mile of me suffered the loss of their wives.   All three of the women who died were younger than Joy.  I am also thankful to my family and friends who have supported us in our difficult time and helped in whatever way they could.  


Our Love to you all,  

Doug