Back on the Roller Coaster Again

This post marks the end of another hiatus.  There were many reasons for not having the words to bring clarity to our recent events, but the time seemed right to begin again.  And because a lot can happen in a years’ time, I will have to backtrack a little.  I do appreciate your patience as I briefly go back in time.

It is funny how certain things will remind you of something, whether happy or sad, and the way you are reminded is so strange or out of the norm that you just know it was meant to weasel its way back into your consciousness.  For instance, last week I received an email survey to evaluate our “recent” visit to UAB Hospital.  In actuality, our visit was over a year ago.  Then today a woman approached my husband in a store and while pointing to his oxygen tank, asked if he had ever gone to UAB to see if they could help him.  Two separate events, two reminders of a most difficult time.

We began 2016 with preparations to have my husband evaluated for a heart/lung transplant at University of Alabama Hospital at Birmingham (UAB).  We arrived with great hope and a little trepidation…our first ride on the transplant roller coaster hadn’t gone so well with Oschner in New Orleans because they don’t do multiple organ transplants.  However after this first disappointing experience, his supportive doctors were quick to regroup and request to have him evaluated at UAB.

So in January of 2016 we arrived at UAB with our suitcases, medications and two large Manila envelopes full of paperwork.  And lots of hope and prayers.  The next several days would be spent getting labs, an echo, ekg, pulmonary function tests and appointments with the cardiac and pulmonary transplant doctors.  At the end of our stay, we would know if he had a shot at transplant.  I knew that there would eventually be classes for both of us to attend, and psychological testing as well.  A lot of evaluation goes in to the solemn task of being caretaker of another person’s donated organs.  The implications are enormous:  weighing the cost of giving a 51 year old man a heart and lungs versus a much younger man with two children yet to raise…it really did come down to who would have more:  more potential of survival, more to give, essentially, more left to do in this life.  With my husband’s underlying blood disorder, things would be complicated and we knew it.

After all the testing and all the consultations, we were told that he was not a viable candidate.  As one of his doctors stated, if the surgery itself didn’t kill him, the recovery would.  It’s one thing to know something in your mind, but to hear the words still sends a shock to the system.  Through our tears, we gathered paperwork and medicine bottles and quickly left, with that familiar sick feeling in the pit of our stomachs.  The knowledge that all the mental anguish and time invested, all the exhaustion and all our strength had made no difference was very discouraging.

But we had one last encounter to make and it would be the most bittersweet.  The final punctuation in an emotional chapter in our Book of Days.  On that last trip to the car with our luggage we were met in the elevator by a lung transplant recipient who gleefully showed us his surgical scars, without our even having to ask.  Rightfully so, transplant recipients are very proud to show their war wounds.  They have faced their mortality and are positively giddy at the chance to live again, and they don’t care who knows it.  I can imagine that would be our attitude as well, and it would have been charming if we hadn’t already been so devastated.  I’m guessing that Mr. Transplant was so thrilled at his second chance that maybe he assumed everyone would be willing participants in his joy.  And we were….we just had to swallow our own disappointment and tears in order to find the words to congratulate him and wish him well.  I’m sure it didn’t even occur to him that our presence there didn’t necessarily mean that we were to be members of his wonderful club.

On the long drive back home we discussed the pros and cons of trying again at another hospital.  Do we spend the good days chasing another chance at life, or do we spend those same days making the most of this life as we know it?

When his cardiologist first suggested transplant, I told my husband that I would state my feelings only once, and those feelings would not change, but that he needed to make his decision based on what feels right to him.  He didn’t need my input to cloud his judgement every single time.  He has not talked anymore about looking elsewhere.  I mention it from time to time, but it can only be his decision.  He knows that all he has to do is say the word and we will jump on that roller coaster once again.

The Path to Understanding

Well, I certainly didn’t plan to be on hiatus this long.  We have been a busy family since my last post.  We gained a Daughter-in-Love in October and took a little road trip in December to bring our Sailor back home for Christmas.  Medically, things have been relatively quiet for my husband, for which I am very thankful.  Aside from a small procedure right before Christmas, he stayed out of the hospital the entire Holiday season, breaking a three year streak.

Which brings me to this day.  Today I have been busy with my quarterly (actually, every four months, which really means twice a year) clean the dust off everything, top to bottom,”event”.  A woman systematically vacuuming the dust off everything that doesn’t move is a thinking woman.  Just me and my thoughts. I began on my husband’s side of the room, carefully lifting and dusting things:  the boxes of blood thinners, defibrillator monitoring device, blood pressure machine….objects of a life spent fighting a chronic illness.  I began to think of how our circumstances has slowly changed my overall attitude.  That is not to say that some days I don’t have a crappy attitude…I do.  I feel sorry for myself, sometimes even a little bitter that the prime of our lives is spent mostly in doctor’s offices and hospitals.  But my attitude has been undergoing some subtle changes.  For instance, cleaning my husband’s side of the room just 2 or 3 years ago would have made me resentful and angry.  The alcohol pads on the floor near the garbage can, the syringes also there would have made me angry that he doesn’t care enough to throw things away properly.  Now I see those items as a by-product of his vision limitations.  I pick them up and throw them away.  I just do it.  Other chores that I do are done without comment.  Taking out the garbage, even doing home maintenance, is just second nature now.

I began to wonder then, during all the years before the diagnosis, just how long he had been feeling unwell.  What I could easily mistake for laziness could have actually been fatigue… of the symptoms of his illness.  This made me incredibly sad to think of the years of misplaced resentment.  Of course everything we have learned has been hindsight…this entire experience has been learning by trial and error.  Unfortunately, trial and error blurs everything, making it hard to keep track of symptoms, etc.  The puzzle pieces do not fall into place.  There are too many missing pieces to get the clear picture.

I will use my mom as another example.  I lost her just over a year ago.  Although she died as a result of heart issues, she battled Lupus, another autoimmune disorder, for over 30 years.  In later years of talking about her illness, she mentioned she thinks she battled it much, much longer, saying that in her teen years she felt sick pretty much all the time, and no one could figure out why.  Now her hindsight tells us that it likely was Lupus, a disease that was ultimately “discovered” in the 1980’s.

Two examples of years where the blessing of good health eluded two very important people in my life.  Two examples of being misunderstood.  It would have been so much easier if I had just taken his efforts for what they were, and given him the benefit of the doubt.  He did what he could….he was not one of those dads who played catch until sundown every day, but he certainly signed up to be Cub Scout Den Leader.  He was there for our boys and  me in his own way.  If I had it to do all over again, I would have lost the resentment.  My days would have been spent living in our own very real way, not in the picture perfect ways of my imagination.  Letting go of something that is unattainable is the best, most liberated feeling in the world.  Now, take a deep breath, figure out what is realistic to accomplish in your own life, then let the rest go.  Most importantly:  talk about expectations, or goals….whatever you would call it.  Just get on the same page with your “other half” so that, together, you can write a new chapter of understanding.  Focus on what works for you.  Let go of the rest.  And breathe.

In Their Eyes

In the past several months, our experiences with Home Health, Physical Therapy and Occupational Therapy have seen a nearly endless parade of people we have never met visiting in our home.  Usually there are just the thoughts that my OCD personality brings, ie., did I wipe up the spaghetti sauce from in front of the stove, is the dust very visible, are there threads all over the carpet from my last sewing project, etc. However, there was one visit in particular that got me thinking about those around us, from those we have known forever, to those we have known just a short while.

One of the nurses that came in to fit my husband for a back brace took note of the shadowbox display of my husband’s Air Force medals.  He began to tell her just a few things:  places we lived, people he had the pleasure of meeting.  It dawned on me and I mentioned to her, as I waved my arms to encompass my husband and I, that “this, this right now, is not who we are.”  What I meant by this is that, while someone may come into our home and spend time with a sweet man who has had his share of medical challenges, along with his frazzled wife who tries to appear organized, this is NOT who we are.  Well, in the literal sense it is, but it is only part of our life experience.

If I could tell our new acquaintances what I REALLY wanted to say, it would be this:  spending just an hour a week with us doesn’t articulate the fact that we were once young.  We were vibrant.  The kind, quiet man that you take vital signs on once traveled the world with three United States Presidents.  This man once worked on Air Force Jets, and jumped into action one day to subdue a piece of flight line equipment…liquid oxygen, ironically, before it could explode and seriously hurt or kill he and his co-workers.  This man worked in the bowels of Cheyenne Mountain, doing his part in protecting our Nation’s Defense.  This man worked in Combat Camera, and once came under sniper fire as he and his co-workers transported equipment during a Presidential trip.

This man raised up two boys into fine young men…in doing that, he camped, coached t-ball and baseball, was a Cub Scout Den Leader, and an Assistant Scoutmaster in our son’s Boy Scout Troop.  This man taught multiplication tables, helped solve Algebra problems, and passed along his love of music and guitar to our boys.  This man fished, played paintball, and shot fireworks with his sons.  Took them to the circus and to the zoo.

It is true, the ones who kept us young and busy have now moved on to launch their own independent lives.  But even before our lives became full of blood pressure checks, water weight gains, O2 Sats, etc., we were whole.  We were a part of things.  We went to dinner, to the beach, to the park.  So many times I long for us to wake up and be those people again.  So many times I long to just jump up and go, and do.  It has been a long road to acceptance that those days are gone.  I just desperately want to remember, and for the world to know, that we aren’t just a jumble of vital signs.  It is true that we are a couple who are old before our time.  Yet, inside each of us resides a part of our former selves that longs to soldier on and make the best of things.  I’d like to think that when this little inkling of who we once were appears, it once again puts us back into the viable, regular world.  If only for a few moments we can be us again, in their eyes.


A few weeks ago, around the time of my birthday, I received a phone call from one of my cousins.  We don’t get the opportunity of seeing one another nearly as often as we’d like, so a telephone visit was a real treat.  During our conversation, she mentioned that she wished her mother were still here, so I would have someone to talk to about my issues and concerns as a caregiver.  Sadly, she passed away right after my husband’s heart bypass surgery, so I was unable to come to her funeral.  The irony struck me:  she left this earth just as my caregiving journey was beginning.  I was stunned when my cousin mentioned how long she had taken care of my uncle.  She was a caregiver for 20 years….two decades!  I never took all that in….possibly because I was a child through most of it, and possibly because being a caregiver was not on my radar at the time, but the fact that she cared for my uncle for so long really spoke to her strength, loyalty and stamina.  I wondered what it was like for her:  who did she confide in?  Where did she draw her strength?  My uncle was a doctor, so I would hope his collleagues helped her find resources.  This was in the 60’s – 80’s, so I’m not sure if there were any support groups she could join.  Where did she find her fortitude?  Perhaps she was able to turn to another caregiver in my family…her own mother.

In October, 2013, we had the pleasure and honor to attend a reception for the opening of a Museum at the old hospital that my grandfather founded back in the 20’s.  As we toured the old building, many memories came back:  the little room where I had gotten all my immunizations, the offices that my grandfather and uncle occupied, the old kitchen where we got our ice cream after our immunizations.  It was a great tour down memory lane.  There was one room, though, that I didn’t recognize, yet my cousins lingered there.  An older cousin noticed my confusion and told me that it was the room where my grandfather had stayed once he had gotten too sick for my grandmother to care for at home.  I knew my grandfather had died of Hodgkin’s Lymphoma when I was just one year old, but I had never thought about his struggle with cancer:  how long had he been sick?  Did he receive Chemo?  He had also been a doctor, so I would think he had access to the treatments he needed.  The home movies I had seen showed a man who loved to hunt and fish, who treated patients whether they could pay him in money or chickens.  I could not picture him bedridden, nor could I picture the grandmother that I knew spending her days caring for him in that way.

The common thread between these two wonderful men, who were so instrumental in my life, in both memory and actuality, were these two strong women.  The side of them that were caregivers were not clearly visible to me in my growing up years, but their strength, gentle patience, tolerance, faith and sweet humor were still in my memories.  I am sure those same traits served them well when they had to care for the men in their lives.  Now that I take my place in this dynasty as a 3rd generation caregiver, I hope I have inherited some of those traits.

I’ll bet that if each of us stopped to think about it, we could think of someone in our life, be it a friend or a family member who was (or still is) a caregiver.  Someone we can draw strength from and get and share information with.  I do wish I could have known this side of my aunt and grandmother, as it now puts them into an entirely different light.  I am very thankful to have been able to record our experiences, so that questions can be answered, and hope and support can be found for future generations.  Maybe it will be a lasting legacy….a legacy of hope.

Blurred Lines

“It’s time to take your medicine.”  “Have you done your injection yet?”  “Let’s take your blood pressure before you take that medicine, in case it is already low.”  “Let’s take your O2 Sat reading before you leave your canula off for a bit…I know the tops of your ears need a rest from the oxygen tubing”.

If you were to listen in, you might think we are a couple in our 70’s or 80’s, each reminding the other of things to keep track of to stay at optimal health.  Another thing you might notice is that the exchange is very one-sided.  However, this IS a typical conversation at our house.  It becomes more and more one-sided as we overcome each medical hurdle.  And we are far from elderly.  He is 50, I am 49.

This recovery has been the most challenging yet.  I knew it would be, and I thought I was ready.  In fact, most days I AM ready…I wake up ready to do my part as a now full-time caregiver to my husband.  However, it only takes a few nights of fractured sleep to send me back into my own personal downward spiral.  The despair turns to anger, then back to despair.  At some point I will accomplish something that will give me back my sense of control.  Then I am able to finally drag myself out of the pit.  It happens more and more frequently now….usually when I allow myself to stop and think about things.

This time the catalyst that brought me back to myself was the taking down of the Christmas tree.  Although I had planned to leave the tree up longer than usual because I had not been able to enjoy it during the Holidays (see previous post), I had not meant for it to stay up THIS long. To be honest, our days (and nights) have been comparable to what it was like to have a newborn in the house.  By the time I have cooked breakfast, we eat, I clean up, supervise medicine and vitals-taking and help him get ready for the day, it is time to cook lunch.  Repeat for the afternoon.  It is sometimes 4:00 before I can even get my shower….usually while he is napping.   I am barely able to clean up after the immediate details of the day.  Any extensive cleaning is out of the question.  By the time I fall into bed at night, I know it will be brief.  Between helping him to the bathroom and doling out pain meds, I know I will be up several times through the night.  Then we repeat.  Day after day.  After day.

It is hard to articulate what it feels like when you lose your literal sense of stability.   When the unimaginable occurs, the reality of it is always there.  The fear that it could happen again is always present.  With the knowledge that a fall could cause another brain bleed, or a bone fracture, it is very difficult to allow him to flex his wings and gain a little freedom.  Also with bleeding on the brain, memory and balance are affected.  I have to be a part of everything he does, in order to make sure he remembers to put on his nasal canula after showering and remembers to take his medicine.  I have to be with him when he walks around, travels up and down the stairs, and goes to the bathroom.    It is paralyzing for us both.

I recently took one of those Facebook quizzes in order to find out what kind of wife I am.  It said that I am a Caring Wife.  Ironic.  I look at other couples our age.  They are enjoying quality time doing fun activities together, now that the kids are on their own.  Taking day trips and vacations, working on home-improvement projects together, or just sitting by the fireplace together.  Our days are filled with doctor’s appointments, medicine, supplemental oxygen, restricted diets and physical therapy.  I have gone from being a wife to a nurse.  An old nurse:  I feel like a 49 year old woman in a 79 year old body.  Each day precious time ticks away and we are powerless to stop it, to make it freeze and wait for us to get back to normal. All these days of togetherness and carefree time that we will never get back.  How do we ever make sense of it?  We feel cheated.

Then I think back to a sunny day in August, 1983.  The day that I said I would stand by him through sickness and health.  I never imagined that part of our vows would be challenged so soon.  Some days I don’t think I can do it anymore.  Then I remember them.  The vows.  Whatever the reason that God decided we needed this challenge, and whether my tasks blur my job description and I morph from a wife into a nurse, the bottom line is:  I said I would.

Derailed (Again)

I can’t believe that I almost did it:  I almost released a petty, self-serving, pity-party post that would have revealed how impossibly human I really am.  Then one brief talk with a nurse changed everything.  First, a little background:

I love Christmas.  I love the feelings of comfort and goodwill that accompanies The Most Wonderful Time of the Year. And my friend and next-door neighbor is the same way.  The difference between our experiences is that she has an extremely energetic, kind husband who is willing to do all kinds of light-hanging, decoration building projects that has her sitting by her fireside cozily sipping her hot chocolate while watching Christmas movies by December 1.

I, on the other hand, have a husband who is just as kind and would love to help me with all my Christmas dreams, but:  he is battling issues that most of us take for granted.  Oxygen:  he needs supplemental oxygen 24/7. That is, all the time.  While we grab our keys and dash out the door, he has to get his portable concentrator, and remember to turn off “Big Blue”, our home-use oxygen concentrator.  He has to constantly fight with the hoses, and lug around a 10 pound piece of equipment.  Just to breathe.  He has to take a long list of medications, just to function. He has to watch his diet carefully or he will have to get IV Lasix, requiring a hospital stay.  He has to take daily injections to properly thin his blood.  Just to stay alive.

Now, I am a ‘do it in a weekend’ type of Christmas decorator, and I usually shoot for the weekend after Thanksgiving, or the following weekend. I have a time frame for enjoying all my hard work, and if I start early, I can avoid having my decorations up until February.  Four to five weeks is my ideal.  The last three years have seen my best laid plans going up in smoke, and I should not be surprised…it’s been like that for nearly everything.

The last three….count them:  three, years my husband has had some type of medical crisis that has put him in the hospital in late November or early December.  Not little, easily resolvable incidents, but major crises.  Each time they have yanked the rug out from under us.  Again.  You would think that we’d be ready for the next surprise, but, alas, we are either very optimistic or complete knuckleheads.

This year was twice the experience.  We attended his doctor’s appointment at the heart transplant clinic in mid-November ready to discuss what can be done to improve his heart function.  They wound up admitting him due to his congestive heart failure and he was a patient for 8 days, until being released the day before Thanksgiving.

Thanksgiving day found us traveling to my dad’s house for a wonderful dinner:  my Bonus Mom, Betty, had even made him a low-sodium dressing that was just as delicious as the regular version.  I am not kidding.

The day after Thanksgiving we made preparations to enjoy a family weekend celebration at a local resort town.  I looked forward to spending a couple of days browsing in the little shops, attending the flea market and viewing the Christmas parade to kick off the Holidays.  After our hospital stay, I felt we could use a little down-time.

The weekend was perfect:  delicious food and lots of family fun in a beautiful setting…it could not get any better than this.  My husband was still recovering from his hospital stay, so he rested quite a bit during the weekend.  It was sometime during this time that he began complaining of a headache.  It was a dull headache, something that seemed more of an irritant than anything else.  Because his pain management plan is very strict, he took one pain tablet.  It did not help.  I kept a cold washcloth on his forehead.  No relief.  At one point I did worry that it was not getting better, and I told him that if it were not better by Monday, we would go to the doctor.

As is usually the case, the symptoms controlled everything:  at around 3:30 on that Sunday morning, the day we were set to leave, I awoke to the feeling of my husband toppling over onto me.  I thought he had just leaned on my arm so I could pat his head.  When he didn’t respond to my questions, I turned on the lamp and found him in the middle of a seizure.

He had never had a seizure before, but I knew instantly what it was.  I ran downstairs for help.  My sister-in-law called 911 while my brother came upstairs to help me.   In what seemed like forever, the paramedics arrived, and began their work.

At hospital number one, a ct scan revealed 3 subdural hematomas.  The doctor began to discuss airlifting him to another hospital, since they did not have a Neurology department.  When he found out we lived far away, he said he would recommend for the one closest to our home.  After an evaluation at the second hospital, they felt comfortable enough to release him to his regular doctors at our local hospital, and so he was loaded into another ambulance, for the final leg of his journey.

For someone on blood thinners, a bleed is very dangerous.  Especially somewhere that is not easily accessible, such as the brain.  He had three of them.   He was in a very precarious position.  They had to take steps immediately to slow down the effects of his blood thinners.  For the next several days, he had regular EEG’s and CT Scans.  Each day they reported seizure activity, while there was no change in the size of the hematomas.

Just as we settled into the watch and wait mode, on the 5th day, he went into respiratory distress, and was put on a ventilator.  For 10 days he was breathing with the help of a machine, and his post-ventilator tests have been positive.  The latest EEG’s have shown no seizure activity, and his hematomas have begun to shrink.  It seems that this walk on our tightrope has been a success.  He will need physical therapy to re-learn use of the left side of his body, plus I don’t know what else.

I will confess:  I am weary beyond belief.  What is supposed to be ‘The Most Wonderful Time of the Year’ is filled with fear and just a little bit of jealousy.  I would love to spend just a little bit of carefree time preparing for Christmas.  I know now that we WILL celebrate.  Up until last week I was not so sure.  It’s hard to describe the feeling of just going through the motions, staying for hours at the bedside of your loved one, the uncertainty.  All around you are the sounds of Christmas music, the festive decorations, the trees, the poinsettias.  It does nothing to ease your despair.

And here is the part where the pity was about to take over.  This morning I decided to stay home, to hang a few measly decorations, for the first time this season.   Just as I was muttering to myself about how this stinks, really stinks…..I called to speak to his nurse, to ask about his morning.  He had just finished taking a walk.  A WALK!!  He had help, and the use of a walker, but:  yesterday the man was on a ventilator and today he is WALKING!!

Just when I was about to describe how I have been denied the happiness of relishing the Season…for the third year in a row, I was reminded about how strong the human spirit is.  How hard he is trying.  For us, for himself, for everyone who loves us.  So it really is not about me and our ridiculously compressed season of preparation.  It’s about the people you share it with.

I guess next year, if I want a relaxing preparation for Christmas, I will start in July.  Christmas in July…who knew?




Well, I had a post all ready to share and once again, life got in the way, so I decided to change topics.

Just one short year ago, my husband was hospitalized with Acute Congestive Heart Failure (CHF).   We knew something wasn’t quite right, as he was “weeping” out of the areas where he does his injections, and any place he had cuts, etc.  He was also having shortness of breath and was experiencing extreme swelling.  Needless to say, his Cardiologist was very concerned, thinking that his heart function had worsened.

So after several days of IV diuretics, he began to lose the water weight.  It had to be a delicate balance:  losing the fluids, but not too fast, which would also put a strain on his heart.

Once it seemed that he would rebound somewhat from this episode of CHF, his cardiologist began to discuss the possibility of another stent.  He felt that widening the artery in question would enable his heart to pump more efficiently, lessening the odds of another hospital stay.  Needless to say, we were very reluctant to do this:  it was a stent procedure back in 2011 that caused the clot in his heart, leading to the reduced heart function.  On a cold November Thursday the Cardiologist decided the procedure would take place the following Tuesday.

What followed was a wretched, wretched series of days.  We turned over and over the risks.  Any procedure is life threatening for my husband.  We knew that he could very well die on Tuesday.  It was a low, low feeling.

We began to have heart to heart conversations, sometimes out of the blue.  One evening we were watching tv and my husband said, “you have to get re-married”.  I say, “what in the world are you talking about?”.  “You know,” he says “after this”.  This is something I am not even prepared to talk about, but, as I found out in later months, it is something he needs to hear.  He needs to know that I’ll be okay.

My heart was heavy all weekend, thinking of the grandchildren he might not get to see, the family events missed.  It was more than I could bear that we were agreeing to something that might end his life.   My stomach was perpetually in knots:  it seemed the ticking of the clock was bringing us closer to our personal doomsday. 

The turning point was the day that we realized we could, in fact, say no to this procedure.  We didn’t have to be along for the ride when we felt sure we might crash.  Not this time.  We were both giddy with relief….not only was it empowering, it immediately brought a sense of calm.  For the first time in forever, the sun shone a little brighter, the sky was a bit bluer. Hope put a new lightness on everything.

Fast forward to the present time:  after several suggestions by a couple of his doctors, we are on a fact-finding mission to decide if a heart-lung transplant is doable in his situation.  I have no doubt that we will have a few of those feelings that we experienced last year.  After all, it is a major undertaking.  My husband is very unsure…our sons and I are leaving it entirely up to him, feeling that something of this magnitude needs to be his decision alone.  Perhaps since we will have more time to get used to the idea, things will not be as hard as they were just one short year ago.  Again, time will tell.

Coming to Terms

I apologize for being silent for so long.  I had to take a break in order to find the words I needed to express loss, grief, and how to come to terms with falling short in a relationship when there is no second chance.

If I could see my Mom one more time I would tell her there is not a day that goes by that I don’t miss her.  I see her influences in my life everywhere.  There is the book series she lent to me because it was so charming and funny.  Lately I haven’t had the heart to pick up the current volume.  There is the pair of small beaded tassels we found during a shopping trip:  I had finally figured out how to fashion a necklace for myself and planned to do the same with the other one to give her for her birthday.  A sort of “BFF” matching set for Mature Girls.  The charm bracelet with the little picture frames that I had planned to put the kid’s pictures in….because she liked that kind of thing.  A bookmark she had given me and I found yesterday in my work tote.  I have no idea how it got there.

In the days after her death, reminders of her were startling:  I had both she and my step-dad programmed together in my phone as “Mom”.   Each time he called me and “Mom” popped up on my phone, my heart would skip a beat….then sink.  The day we made the arrangements for her funeral I was running late, so I called to let Robert know.  It went directly to voice mail, where I was greeted by the sound of her voice.  I was a crying, miserable wreck by the time I got to the funeral home.

Mom was a long-term Lupus sufferer.  She was sick with it before they had a name for the invisible illness.  Her life was dictated by her symptoms, and they cycled between respiratory issues, osteo-arthritis, seizures, migraines and an on-again-off-again relationship with leukemia.  Her doctor kept careful watch over her white cell count, and in the last two months it had started creeping up.  She had even battled cervical cancer in her 20’s.  So when Robert called me on the morning of August 21, less than two weeks ago, and told me she was being hospitalized with pneumonia, I was worried, yet confident that the right cocktail of antibiotics would have her feeling better in no time.  We were set to leave for vacation on August 23, so I planned to go see her on Friday and be reassured that she would be in good hands while we were on our trip.

Her time in the hospital became complicated when her blood pressure began dropping.  Suddenly, pneumonia was the least of her problems, and she was transported to another hospital for emergency heart bypass surgery.  When a heart catheterization revealed a hole on her heart, she began coding.  And that was it:  the person who had given me life was no longer here.  I could not comprehend it, even as we sat beside her, spending those last precious hours before the funeral home took her away.

I feel that the first stage of grief is a protectant:  It allows you to attend to the many details of saying goodbye, with less likelihood of falling apart.  You do everything on auto-pilot.  However, once those adrenaline-fueled days of planning, calling, crying, writing thank you notes, and ordering the monument are over, the thinking begins.  I started torturing myself with snippets of memories that might give clues to her health.

The doctors determined that she had had a heart attack about a month to six weeks before she died.  She had no chest or back pains.  Just a little nausea, nothing more noticeable than a typical stomach bug.  This caused damage to over half her heart. During the next few weeks the muscle deteriorated to the point of forming the hole.

So essentially, while we were all in the business of living, she was dying.  I think of the last time we saw her…at my youngest son’s graduation in May.  We were going to see her again in July, before he left for the Navy.  We had planned a visit for the last Sunday before he was to ship out.  However,  he was called up to leave 4 days early, and the visit never took place.

In addition, recently my role as a caregiver has given me much guilt.  My focus for the last 3 years has been caring for my husband, to the exclusion of spending more time with other family members.  And because Mom and Robert worked in a nursing home, sometimes our visits had to be postponed because they had been exposed to some illness and were either a carrier, or were sick themselves.  At the time, we laughed at their “Occupational Hazard”.  Now I cry, as I long for all the missed opportunities.

So now I am left to deal with the fact that there will not be a chance to make things better.  In my search for peace in a situation that will not be resolved in this lifetime, one day I had an epiphany.  It is simple:  If we treat EVERY interaction with those we love as if it WILL be our last, we might say all the meaningful things, spend more time, be more in the moment. Then, when we look back and evaluate the actual “last visit” of a loved one, we have no regrets.

Where We Are

We have had a busy few weeks.  The last day of July was to have been the culmination of a dream that was six years in the making.   Our youngest son was entering the Navy.  And, as is usually the case, all of our best laid plans went out the window.

For the last several months, my husband had been having low O2 saturation readings, with no clear explanation.  His primary doctor gently suggested that this may be “where we are” in the progression of his illness:  not the APS itself, but the complications from his earlier pulmonary embolisms, namely the pulmonary hypertension and congestive heart failure.  That was a low point:  although we have always welcomed and appreciated honesty with regard to his prognosis, when the words hang in the air, trying desperately to penetrate our unwilling ears, it is as if we are hearing them for the very first time.

And so we ramped up our strategy:  in addition to the extremely low sodium diet, he was now on oxygen day and night. The cough was ever-present.  When he complained of tiredness and generally not feeling well, we would check his O2.  One Saturday, he was especially tired, and his O2 was in the 70’s, even on oxygen.  So I increased the liters on his oxygen condenser.   Over the next few hours, we steadily increased the liters on his machine…his O2 sats would rise into the 90’s, only to fall again.  I checked his O2 sats at 5 liters, the highest the machine would go, and they seemed stable, so I had fallen into an exhausted sleep.

A couple of hours later he woke me, and told me to listen carefully, because he could not talk for long:  I was to get his ER backpack (yes, we have a backpack in his closet, ready to be stuffed with a couple of pairs of clean underwear, t-shirts, socks, toothbrush and pajama pants), hook him up to his portable oxygen tank, and take him to the emergency room.

Tests showed that he had more pulmonary embolisms, or blood clots in his lungs.  For some reason, this news shocked us in a way that was much worse than our first experience in 2008.  After all, he had a VC filter that prevented any clots in his legs from traveling to his lungs.  He took his blood thinners daily.  How could this have happened?  There were no clear answers, no way to tell how long he had had them.  Once again, another low point….another moment of feeling helpless in the wake of this mysterious illness.  Not even our regular treatment was status quo right now, and it shook us to the core.

For the first day or so, he felt really bad…so much so that I was afraid to leave him to go home at night.  I think we both thought this was “it”.  It is so hard to describe that sick feeling of sadness and dread.  You don’t take an interest in anything. To be honest, you don’t understand how the rest of the world could dare to go on when your world is imploding.  All we could do was pray that this was just a valley in our journey.

Prayers were answered and he began to feel better.  On the day before he was discharged, our youngest son was visiting.  He suddenly left the room to take a phone call.   When he returned, I knew something was going on.  He told us that he had to be at the recruiter’s office on Sunday, four days earlier than we had expected.

Suddenly, time was of the essence…we only had a couple more days with our baby son.  Thankfully, my husband was discharged in time for us to have some at-home time before he set out on his own.

That Sunday morning when our youngest began his journey as a recruit was bittersweet.  We were excited for him to realize his dream, and at the same time it made us remember our early days in the Service.  With each new move or job, the world and all its potential was open to us.  We embraced each new adventure.

This provided an excellent opportunity for us to revisit our years as a couple, both before kids and during our parenting years.  I don’t know how much time remains for us.  None of us knows what life will send our way.  However, we should not wait until a medical crisis to say what we need to say.  There’s no time like the present to let our loved ones know how much they mean to us.  And that’s “where we are”.


Caregiver, Heal Thyself

In my Southern Methodist upbringing I have been taught that life is full of lessons that we are meant to learn.  Sometimes the lessons elude us, but there are times when the message is crystal clear.   Such was the case at our house a couple of weeks ago when I developed what appeared to be a mild cold.  Days one and two I marveled that this cold would be a piece of cake, which was a relief since I didn’t have time to be sick (is there anyone who does?).  There was a bit of congestion, but not the hit by a bus feeling you get with a typical cold.

Day 3 the hit by a bus feeling started creeping in.  For the next five days it got worse, along with a very raw throat.  By day eight I was on the phone.  When I was told my doctor couldn’t see me for another few days, I assured the receptionist that I would be dead by then.  So I was worked in to see a Physician Assistant, who diagnosed me with allergies complicated by an upper respiratory infection.

After a  few days on antibiotics when I began to feel human again, I began to piece together my lesson.

Of all the symptoms I could have suffered with this illness, the dominant one was a cough.  Not a petite little ‘hide behind a tissue’ cough, but a ‘stab in the throat’ cough that caused me to cough until I saw stars.  One time I coughed so hard I got chest pains, and I had vision  anomalies that lasted several hours.

I began to understand a little more about my husband’s cough.  Many times I had resisted the urge to suggest that he shouldn’t cough so forcefully.  I learned that when you have to cough, there is no real way to temper it.  If you get an irritation in your airway, the goal is to make it go away.  It is not quiet, nor is it delicate.

I also learned that it can be quite irritating to have someone follow you around, asking if you are all right.  I am guilty of that on a daily basis, and my husband has been kind enough not to become impatient with me over the years.

I learned that it really, really stinks to be sick.  My husband feels crappy on a daily basis, yet he powers through to get to the next day.  He does not complain unless I ask him specifically what is wrong.  He has my complete admiration.

My husband learned something as well:  it is extremely stressful to hear your loved one ‘cough up a lung’.   Although he still has me beat in this department:  I never threw up from coughing, nor did I ever pass out, which he does regularly.

Our assessment of why I got sick is that we both needed a tangible reason to put ourselves in the other’s shoes.  It was very effective, and he began to see that he needed to be more proactive about finding the reason for his cough.    Up until now, I have been the one being in touch with the doctor, following up, etc.

Last week he was given a new treatment regimen, requiring oxygen therapy when his O2 goes below 90%, which it has been for the last several weeks.  He has followed it diligently, and the cough is slowly improving.   Once again, we are feeling empowered and grateful.  And empathetic.