Tell Your Story

[Shelby]

There's POWER in sharing your story -- both for yourself and for those who read it.  I've gotta run do an errand but I'll be back to share mine a bit later this morning.

 

Short version: 15 years of increasing caregiving to a diabetic husband whose complications had complications. The last several years I was 24/7 caregiving. He died March 8, 2010, so I just hit my 5-year yesterday and I can tell you with certainty that there IS recovery, there IS learning to sleep again, there IS a letting go of needing to control things based on fear of what will happen if you don't.

 

I want to hear your story.

[robunknown]

My wife passed in October after 5.5 year fight with Stage 4 cancer. She was diagnosed (Age 29) 5 months after having our son and buying our first house. We met in October of 1999. She died 15 years and 1 day after she first walked up to me at college and asked if I wanted to have breakfast with her.

 

She changed after her diagnosis. Anyone told they are going to die so young would change too. Her chemos, hormone treatments, and forced menopause changed her as well. One of her big mental struggles was not being able to relate to anyone in her shoes. There just wasn't anyone else her age dying of cancer with a young son. 

 

The first few months after she passd I was mostly comforted she wasn't in pain anymore. But I find I am grieving two pieces of her now, the happy, excited, youthful person she was before she was diagnosed and the stoic, strong, wise person she became. Looking back there is clearly a deliniation. In the last week or so I find I am in the beginning process of grieving who she was before the diagnosis.

 

I find helping others who are dealing with similiar situations has helped me. I am open, and tell them they can ask me any uncomfortable, personal question they want, and I will give them the answer, straight up. Its what my wife did and its what I will do.

[RobFTC]

I posted a general intro about Michelle's ovarian cancer elsewhere.  Let me add a brief timeline:

 

Dec 2008 - new, steady abdominal pain felt

Jan 2009 - ovarian cancer diagnosis likely stage 4, chose and started a chemo-surgery-chemo regime

April 2009 - the Big Surgery, including a mastectomy due to a metastasis

July 2009 - second part of first round of chemo

Sept 2009 - party to celebrate great number after chemo

late 2009 - another lesser chemo

early 2010 - yet another chemo

mid-July 2010 - symptoms return: blocked ureters lead to nephrostomy tubes

August 2010 - blocked small intestines stopped her from drinking and landed her in hospital

Sept 2010 - she was back home, with serious IV drug and TPN feeding regimes

Oct 19, 2010 - she hoped to restart chemo, but got "there's nothing more to do for you"

Nov 10, 2010, 5am - I awoke just after her final breath

 

This stuff sucks, what can anyone say?

 

Take care,

Rob T

[lcoxwell]

I posted this elsewhere, but I will post it again here, in case anyone has not read it.

 

My husband, Kenneth, died on March 10, 2014 from complications of diabetes, congestive heart failure, end stage renal failure, and a ton of other medical conditions, too many of which to list here. Thirteen years before he died, doctors were saying he likely would not live through another year, but he kept beating the odds and managed to hold on long enough to give me a good life and to raise our combined household of kids, six in all (though his oldest was actually grown and out on his own, before I came along, so really it was five kids that we raised).  The youngest one turned 18 two days before Kenneth died.

 

When I married him, I knew full well I would end up being widowed at a young age, but I did not care. I loved him enough to marry him anyway, wanting to have every possible minute I could with him. For thirteen years, I took care of him. I sat by his side through one hospitalization, after another, and I watched him suffer more than anyone should ever have to suffer. On March 3, 2014, he came home from the hospital for the last time. Two days later, we met with home hospice and made arrangements to end all life-saving treatment. A week later, he was gone.

 

Even after thirteen years of extreme caregiving, I would do it all again. At just a few days shy of the one year anniversary of his death, I still think of him each and every day, I still miss him so very much, and I still love him very deeply.

[anniegirl]

He was 29 when he was finally diagnosed. A very rare metabolic disorder that resulted in his immune system attacking his adrenal function and stripping the myelin covering the nerve endings in his spine and the dura matter around his brain.

 

His initial symptoms mimicked mental illness and he was mis-dignosed (when the DRs even believed there was anything wrong with him) for nearly a year and a half before he had a complete collapse and I forced a very dismissive ER doctor to do a complete medical work up.

 

By the time we were referred to a neurologist, all the man could do was apologize profusely because it was too late to do anything.

 

His company had fired him when his illness began to progress. They had no choice, I know, because his behavior was scary, but it left us with just half our income. I came very close to losing our home but for my wonderful auntie who paid our mortgage for the 10 months it took to convince Social Security that he was dying and to put him on disability. Fighting with Social Security and the state social workers was nearly a second job for me during that time.

 

He was nearly blind. He had dementia. He lost the ability to control his limbs. Was incontinent.

 

You haven't lived until you've changed your baby's diaper and your husband's every morning before taking each one to their respective day cares and going face school full of junior high kids, teaching all day long and then heading back to the day cares to pick up them again.

 

That was my life for a year and a half before I was forced to put my husband into a nursing home because the doctor told me it simply wasn't good for him or I to continue keeping him at home.

 

Aside from my best friend and her husband, I had no help. My own family lived hours away and his family was useless (when they weren't interfering or complaining to anyone who would listen what a terrible wife I was).

 

The second year was me alone. Still barely making ends meet. I borrowed money from my parents to go back to school to get my masters because I needed to replace the income we'd lost and advancing my degree was the only way to do it.

 

I worked. I parented. I took weekend classes. I visited my husband in the home. Watched as he forgot how to walk, talk, eat. Become this inert mass that was once the man who I loved and who could love me back. Who changed my life in ways I really had given up on believing in. All slipping so slowly away.

 

I wondered if he was still in there. Did he understand? Did he hate me? There was no way to know. No way to communicate.

 

He spent his last three months in a hospice. He couldn't swallow normally anymore. I wouldn't let them put a feeding tube in him. He wouldn't have wanted to be kept past his time. He had a horror of this kind of lingering death and had made me promise - long before when we still thought we were invincible - that should something happen to him, I wouldn't let them "keep him alive" if there was no hope.

 

There was never hope. There was only what happened waiting for us.

 

The night he died, it was just he and I alone in his hospice room. I could hear the woman in the room next door. Death rattles are loud. They fill a room. Spill into the hallway. We'd been at the hospice so long that even my then three year old daughter could recognize it and would say. "That person won't be here tomorrow, will they Mama?"

 

I never shared my story - not much anyway -  at the YWBB. It was too soon. Even typing this has reduced me to a puddle of regret and pain. Even after nine years, I can't tell this story and not feel it. Which is why I don't tell it. Because you can't live in the past and you can't settle in the sorrow and hope to move on to where you are supposed to go.

 

And because telling it honestly makes it feel like a contest. It's not. It's just what happened to me. To us. It's our story. Like your story is yours.

 

My life has changed a lot over the past nine years. I've married again. I moved to another country. Life is better than I ever dreamed it could be again. Mostly the scars don't show and mostly, I am the only one who can see them when they do.

 

I worry a bit that if I had to do this again, I wouldn't be able to. I don't know that you can know ahead of time how you will fare. Even now. Even after having done it, I can only hope that I am stronger than I think should lightening strike twice.

 

My first husband died twice. First dementia and then pneumonia. I think the first death was the hardest for me. The death of his body was freeing. For us both.

 

If you've gone through a long illness before losing your spouse, I know you know how exhausting it is emotionally and physically and that recovering from that is just as much work as grieving the death is.

 

Those of you who are new to all of this widowhood stuff? Whatever you are feeling, it's normal. It's not just you. You are not alone. And someday, when is different for us all, things will be okay again. It will never not hurt. But it won't hurt constantly. It gets better. Really.

 

 

 

 

[Shelby]

Oh, @anniegirl.  My heart broke reading this. Very different and yet so very similar.  Thank you so much for sharing your heart and your experience. It's my hope that those who follow behind us will read these posts from all of us and know that it can get better. It does get better.

 

There was never hope. There was only what happened waiting for us.

 

The death of his body was freeing. For us both.

 

If you've gone through a long illness before losing your spouse, I know you know how exhausting it is emotionally and physically and that recovering from that is just as much work as grieving the death is.

 

Those of you who are new to all of this widowhood stuff? Whatever you are feeling, it's normal. It's not just you. You are not alone. And someday, when is different for us all, things will be okay again. It will never not hurt. But it won't hurt constantly. It gets better. Really.

[Wheelerswife]

I was an extreme caregiver for 18 years.  My first husband was disabled from birth with a genetic and progressive neuromuscular disease that made his skeletal muscles extremely weak.  The nerve cells that are affected in his disease are the same as those affected by polio and ALS.  I met him when I was working as a physical therapist and he was assigned to me for a new wheelchair prescription.  He already knew what he wanted and needed and so did his wheelchair vendor, so in many respects I was just the piece that was required by the insurance company to verify what he needed.  When he was getting this chair, he was also in the process of getting a van he could finally drive himself with high tech controls.  He drove with his fingers on small levers for the gas and brake and with a zero-effort steering wheel that had a diameter of about 6 inches.  I ran into him a couple of years later, in January of 1991, in a shopping mall.  He immediately recognized me, as often my former patients would.  I stopped and had a polite conversation, asking him about his wheelchair and his van.  I had developed a specialization is assistive technology and was interested in high tech equipment for people with physical disabilities, particularly as they interfaced with wheelchairs I was prescribing.  He offered to show me his van the next time he came to clinic at the hospital where I worked.  I gave him my business card so he could call me when he was going to attend clinic.

 

He called me the next morning.  I sat at my desk trying to figure out how to handle the situation...he wanted to get together and show me his van.  I squirmed, trying to figure out how I was going to get out of this one politely.  I ended up agreeing to meet him...and then he wanted to go to dinner, too.  I decided I just had to get it over with.  So 5 nights later, I met him for a drive and dinner.  That turned into our first date.  The next night was our second date.  We had 14 days in a row of dating before I finally insisted I needed a break.  I was falling in love with this man, who I knew was destined to die young...and there were no guarantees that he would live beyond tomorrow.  Long story short, we were engaged in June of 1991, bought a house and had it modified a few months later and we were married in June of 1992.

 

Barry always needed complete assistance to get up, showered and dressed in the morning.  In our early years, he could do things like brush his teeth and comb his hair with the right set-up.  From the beginning, in order to try to maintain some semblance of balance in our marriage, we had a personal assistant who lived in a basement apartment in our house who got him up every day.  I took care of getting him on the toilet at night and putting him to bed, but that didn't take as much time or effort and it preserved our nighttime privacy.  Barry was too weak to turn himself in bed, so every night for 18 years, I woke up and turned him every couple of hours when he would wake up in pain.  By day, Barry was pretty independent in what he needed to do from his wheelchair and he could remain alone or get out of our house using power door openers.  We would leave him simple finger foods that he could feed himself.  He worked via computer and speaker phone part-time after being laid off from full-time work two days before our wedding.

 

Life was pretty good for a long time, although lifting him and waking up to turn him at night were challenging sometimes.  He was prone to respiratory infections and had no effective cough for years and easily could choke.  When he was sick, I was on duty 24 hours a day, trying to keep his chest clear with postural drainage.  Somehow, I managed to keep this 90 pound weak man out of hospitals.  His pulmonologist would make house calls when he was sick and knew that when I called him, it was pretty serious.  In early 2008, he came down with bronchitis and I managed him at home, but he didn't bounce back like he had previously.  I knew his risks were going up.  We decided to visit a neuromuscular disease specialist in New Jersey who specialized in respiratory management of people like Barry.  Barry never wanted to be trached or be dependent on skilled care or be institutionalized for high level health management.  This doctor specialized in non-invasive ventilation for people with severe muscle weakness.  His assessment was that Barry did not yet need a ventilator, but we at least had this resource in our tool bag now.

 

Two weeks after that appointment, Barry crashed on me at home because of a rapidly progressing acute bronchitis.  I had to call 911 and I just made them scoop and run him to the hospital because I knew they wouldn't be able to intubate him in the field.  He developed a severe stress cardiomyopathy (Takotsubo cardiomyopathy or broken heart syndrome) from the adrenaline rush from a plugged lung and respiratory distress.  He was extremely critically ill and not expected to survive.  A couple days later, they reduced his sedation and I made him wake up and listen to me.  He could only communicate by looking upward with his eyes.  I explained what had happened to him and what he was going to have to do if he had a chance of surviving, which meant being intubated for at least a couple weeks and then hopefully extubating to a non-invasive ventilator.  I asked him if he wanted to live and he adamantly said, "YES!"  I vowed to fight for him, and I did.  It took some time, but his heart recovered to it's normal function and antibiotics and intensive care support cleared his bronchitis.  The doctors, nurses and respiratory therapists were completely unfamiliar with non-invasive ventilation and kept pressuring me to trach him.  I refused.  They wouldn't talk to the doctor in New Jersey.  They made a couple of unsuccessful attempts to extubate him to prove to me that I was wrong.  I finally put my foot down and insisted that they airlift him to New Jersey.  It took 10 more hellish days, but it finally happened.  After the helicopter took off, I drove there myself. After one false start and some cardiac stunts, they successfully extubated him to a non-invasive ventilator.  He breathed completely on his own the second day for about 6 hours.  On the 6th day after extubation, I drove him home, along with enough medical equipment to fill an ICU.  It had been a long 6 weeks in the ICU and I basically lived there with him.  I spent the next few months with him 24/7, working to get him strong enough to leave with someone else while I went back to work.  At first, it took me 4 hours a day to get enough food and liquid into a 90 pound man to keep him from losing weight. We enjoyed the opportunity to roll back into the original ICU 10 days after he got home and the ICU team was shocked to see him breathing on his own, talking and not trached.  He never regained his previous strength and was essentially functioning like a 90 pound infant that had bowel, bladder and sexual function.  He needed 24/7 care the rest of his life and never felt safe if left alone in a room.  My bathroom door never closed during that time.  His last 16 months were very precious to us.  We had incredible intimacy on many levels.  He developed pneumonia a year after his bronchitis but we managed to get him through it in the ICU without intubation, but with a lot of respiratory therapy and my consistent demands for him to get the kind of treatment he needed. (I got so tired of hearing that it was above what was standard!  He wasn't a "standard" patient!)  Three months after that hospitalization, he developed a simple cold, then high fevers and I knew I needed to get him back to the hospital.  I had to insist that they admit him and admit him to a step-down ICU.  A few hours later, he redeveloped high fevers and cardiac arrhythmias (I knew it would happen) and a short time later, he was again critical.  He needed intubation to survive, and he declined. He had had enough and I believe he knew that IF he survived, he probably would have lost his ability to speak and swallow, neither of which were acceptable.  He was tired of suffering.  I remember the last time I asked for meds that I knew might put him to sleep for the last time.  He was confused at that point and uncomfortable and I knew he needed the relief.  He died on 9/22/09 after about 7 or 8 hours in a coma.  I stayed strong for him until the end.  His biggest fear wasn't dying, but of having a bad death.  Fortunately, I was able to fulfill a promise to stay with him and advocate for his comfort in the end.

 

If you have read this whole post, thank you.  I don't tell this story much anymore.  I needed to do it today.

[anniegirl]

If you have read this whole post, thank you.  I don't tell this story much anymore.  I needed to do it today.

 

You are welcome.

 

I rarely tell my story either and certainly couldn't in such detail. It's too hard. I don't think I have enough words anyway.

 

I understand the need to tell it.

 

Thanks for sharing.

[Shelby]

I love you all.

[anniegirl]

Thanks, Shelby.

 

And thank you for manning this section. A rough one and probably not overly trafficked  in comments but so necessary.

[lcoxwell]

Maureen, I just want you to know I read your entire story, and I completely understand the need to tell it, from time to time.  Thank you for sharing with us.

[Wheelerswife]

Thank you, anniegirl and lcoxwell. 

 

I've been reading a lot...well, everything, but I don't always have what it takes in the moment to respond to people, even in simple ways.  It makes a difference when people respond...even just in acknowledgement that they read what you had to say.

 

This whole board change has set me backwards and into places that had healed fairly well.  I feel like some of my scars have broken open.  Reliving this story...one I've told many times, but not recently, was one of those things I didn't intend to do at this point.  I have enough on my plate and some things have resurfaced and I had no say in that how it happened.  I really wish I hadn't been forced into thinking about things I'd already worked through.  There are things that few people here really ever knew about, too.  I had a separate screen name that I had used only a short time when issues surfaced after my first husband's death.  I've also relived my second husband's grief in reading some of his posts and then recalling some of our early conversations.  I didn't need this.  I need to focus back on my school work and get some research and another project done, but instead of just skimming the old board quickly, I find myself back to reading everything and feeling old pain all over again.  Sigh.

 

Maureen

[SimiRed]

@anniegirl  {{{HUGS}}} No words, as I can relate to some of what you wrote.  I've changed diapers on both husband and son.  At the end, my husband lost the ability to walk or even move, was incontinent too.  I bathed him every day.  I fed him and used a dropper to put fluids in his mouth when his mouth was dry.

 

The In-laws, yea, no help, they never showed up until one week before he died and I never seen them four years prior to his death. They lived out of state too. I remember telling his sister on the phone that you have to tell him, "It's okay to let go".  She didn't, she said she didn't want him to go.  His Dad... told him on the phone, "FIGHT, you have a family, you can beat this.".  The day before he died, he was home on hospice, he was screaming at his Dad for never being proud of him.    He screamed at me to hurry up and kill him.  He couldn't remember who I was, he thought I was just his nurse administering his meds.  He had glimpses or "clarity", I treasured those. 

 

My story is on the "Cancer Wids" thread....

 

I hate the death rattle noise... it is something that will never be erased from my mind.

 

I am also remarried, and I do have a fear of having to do deal with death again. Maybe we will grow old together. 

 

I still struggle with letting go of this fear, I don't think it will ever go away. 

 

@Wheelerswife, Maureen.  I love you, friend.  You are an amazing person, a heart of gold.  I can never thank you enough for taking the time to come visit me in NC.  I knew, just knew from chatting with you, that my home was and is always open to you.  Someday, I hope to bring Josef to Kansas and have you give us the tour!  {{HUGS}}

 

I read everyone's story, Hugs to all. It's a comfort that others understand, those in my life now do not understand at all.  I have my moments of quiet, where I remember and I cry, and I miss it all.  I would do it all over again, I wouldn't change a thing, I loved my best friend, my husband of 19 years, I still love him.  I miss him for me and I miss him for the Daddy my son didn't really get to know.

[robunknown]

SimiRed: I remember about a month before DW passed her sister was on the phone, and my DW said flat out, "I hear you say you want to visit me, spend time with me, but I don't trust it. You've been a bitch to me my whole life. I don't forgive you for what you said to me (she told my DW to "just go die of cancer" a year or so after she was diagnosed, a few years prior to his conversation). I'm not going to sit on the phone while you cry. I Love You. Goodbye." At first I was in complete shock, but then I was happy my DW got to say what she needed to say.

 

I have the same hatred of the "death rattle", and I have the same fear of having to do it again with someone else.

[ATJ]

Deleted!

[lcoxwell]

Thank you so much for sharing your story.  I know that the sharing of our stories can be so incredibly hard and take us back to some vey dark places in our lives, but speaking as another extreme caregiver, it is important for me to read others' stories and to see that I am not alone.

[Guest TooSoon]

ATJ, your post is so beautiful.  I walked a similar path with my husband, Scott.  I realized on Friday it was the four year anniversary of his diagnosis and that prompted the predictable period of thinking through it all. I honestly don't think I'd let myself go back mentally to those early days until just this weekend.  Or maybe I did in the fog of grief and simply no longer remember.

 

Here is my story. 

 

My husband and I were/are both educators.  We had a child "late-ish" in life and had just bought a house across the street from the school we intended for her to attend through 8th grade.  We weren't completely moved in yet, but I was on my first sabbatical from teaching in 9 years and we agreed that I'd go to Europe to do research for three weeks over the end of January and beginning of February.  When I got back, Scott hadn't opened any of the mail.  Mail was all over the counters.  I just thought he had been overwhelmed with work and our daughter.  But things continued to get still more strange.

 

My four year old daughter was telling me her Daddy (who grew up in this town) was having trouble finding the route to our new house, always heading back to our old house.  Then Scott started to have "visions."  Disturbing dreams of a cat who was trying to kill him.  He spoke of little else.  We visited the family doctor twice and an urgent care center and both sent him home saying it was a virus, and not to worry.  One night he was reading to M and just out of nowhere passed out on the living room floor.  More visions.  The next day he woke up and said, "Something is seriously wrong.  I am going to the ER."  It was a Sunday. In March.  A Sunday very much like today, in fact.

 

About 5 hours later I got a call from the hospital.  They said, "You need to come in right away.  Your husband is in the neuro-ICU."  I had no idea what was happening but I knew it was not good.  I dropped my daughter off at my parents (a phenomenon with which she would sadly become very familiar) and went to the hospital (with which sadly I would become very familiar).  The neurosurgeon said that his guess was that the mass in my husband's brain was Glioblastoma Multiforme IV - words I had never heard before and the weight of which wouldn't sink in for another 48 hours - but that surgery was required to confirm it and that it had to happen fast.  In the interim, they said we had two days to get our affairs in order.  So we hired an attorney, made decisions and drew up the paperwork necessary in the event he didn't survive the surgery.  Scott had a ten hour craniotomy. I was at my parents' house when the doctor called and confirmed it was GBM.  I said, "What does that mean?"  He said, "Six months to a year."  My mother said, "Don't worry, you'll meet someone else."  (really, she really said that).

 

They brought him back to his ICU bed.  All I remember was one of the nurses telling me that she had taken my art history class a few years back and I think I just stared at her, speechless.  I spent days by the bed.  I listened to a lot of angry music.  And then they sent him home.  Half of his head was shaved and he had a giant stapled wound.  M and I got him a cake that said "May the Force be With You."  and the two of them demolished it in bed.  She loved getting to eat cake in bed. 

 

Then came the steroids.  Steroids that made my soft, sweet husband into a horrific creature.  Anger, blame, paranoia, extreme religiosity.  Anytime steroids were part of the equation I knew to expect the worst.  But then it got worse.  He started radiation.  He lost his hair.  My child was completely traumatized by this hair loss.  He slept all of the time.  I was like a ship cast out to see with no ability to chart a course to shore.

 

We decided to seek a second opinion at NIH.  This was the bright spot of it all because say what you will about tax funded health care, everyone there was amazing.  They not only helped monitor his situation but they gave a damn about our well being.  They listened when we said we wanted a balance between quality and quantity of life.  Anyway, for about a year things were seriously intense and topsy turvy but we were managing to live pretty well.  But I was so lonely.  So alone knowing we were fighting an unwinable war, so lonely with living a life with a man who looked like my husband but who morphed and morphed again into being a complete stranger and trying to imagine what life was going to be like when he inevitably died. 

 

By the second summer, he was pretty consistently demented and not himself.  The doctors left it to me to take away his driver's license.  How do you tell a 49 year old man cranked up on steroids that he is unfit to drive?  Anyway, by that October his back started hurting.  On our regular visit to NIH, this time the MRI showed spinal metastasis and I knew, even if he denied it and would in fact go on denying it until the end, that was the end game.  The first thing that happened was that his growing brain tumor rendered him blind in one eye and then the other.  Then his mobility weakened and ultimately failed him.  We had a completely incompetent hospice service whose nurses took hours to get to our house in a crisis and often gave the wrong prescriptions.  I was on hyper-alert 24/7 and working full time.

 

Then came the cane and then the morphine drip and then the hospital bed with an alarm on it.  One day my college roommate was here helping me.  Scott made his way to the kitchen but then couldn't get up.  The two of us, with tears just pouring down our faces, carried is dead weight down our long corridor from the kitchen to his bedroom.  We were in and out of the hospital and hospice - no one would keep him.  He wasn't dying fast enough.  One morning he tried to get himself into the bathroom but fell, hit his head on the foot of the bed and was wailing in pain.  I called my father.  Turns out his brain had stopped telling his body how to eliminate.  Back to the hospital.  They catheterized him.  He was in a fog and he hated that catheter.  I spent the better part of two weeks doing nothing but making sure he didn't pull it out.  Those were the last days I had with my husband.  Trying to keep him from pulling out his catheter.  I sincerely hope he was not conscious of any of that.  We then got kicked out of the hospital because insurance wouldn't pay.

 

After the hospital kicked him out, there was another fall and we went back to hospice. They kept trying to kick him out.  Even with a DNR and no food, he stayed alive.  I watched him slip slowly away into a coma.  At that point I had to tell hospice that I was going to the newspaper and other prominent people in our community if they wouldn't keep him.  I kept saying, "It is not his fault that he is young and healthy!"  But it was battle worthy of Homer.  In the end they let him stay and confirmed he could stay until he died but only because they were afraid of bad publicity or a law suit.  For another 3 weeks I laid next to him, leaving only to teach my courses and put my daughter to bed at night.  He was gone but I still laid next to him.  I read Robert Hughes' Rome to him and I told him everything I'd ever wanted to say.  My goodbye was as long and wordy as this post. 

 

On February 3, right in the middle of the Superbowl, he died.  I sort of love that.  He hated football.  Unbeknownst to me, my daughter had turned down the volume on my phone to zero so even though it rang I could not hear it.  I learned that my husband died when my parents rang my doorbell at 11 something that night.  They said, "He's gone."  I said, "OK."  And I curled up beside my daughter and went back to sleep. 

 

Even this post, long as it is, does not do justice to what I witnessed and its aftermath.  For nearly two years, I lived on pins and needles.  I was accused of affairs, berated for being the atheist I have always been, and I was whittled down to nothing by watching a hugely vibrant man be reduced to a humiliating and degrading death. 

 

But I have made a lot of progress.  Slowly and ungracefully and consciously, I have put the pieces back together.  Whatever shred of naivete or innocence I had is gone but I have learned more than I ever did getting my PhD and I now see a lot of hope.  I am starting to see a new life sprouting and budding in front of us, a life of our own making.  It is an uneasy and messy life but it is ours.  And two years since he died, I think he would be ok with what we've done with the lemons.  Above all else, I have learned that this is it.  This moment is all we've got.  Having always been a planner, that's been a hard pill to swallow.  But in embracing "Be.Here.Now" there has been a lot of liberation.  Scott would also approve of that. 

[canadiangirl]

((((TooSoon))))

 

This, this, for us too, as with much of what you wrote:

 

The doctors left it to me to take away his driver's license.  How do you tell a 49 year old man cranked up on steroids that he is unfit to drive? 

 

 

 

[ATJ]

 

Deleted!

 

[Guest TooSoon]

Thank you, CG.  you know I am here for you always. 

 

I've had to make some hard choices about what to do with everything that happened to us.  Where do you put it?  Who do you become after such trauma?  Can you put faith in a future?  I am trying but it is not easy.  I'm just now working that out at 2 years.  I am humbled by how profound this process is.  For me - and I am just one person - I had to face it all head on; it was the only way through for me.  I have hurt and been hurt many times and I have, most unsettlingly, hurt a lot of people along the way.  I still hurt.  But harnessing the strength to repair the damage I wrought has been an eye opener.  This race is not yet run.  I am changed and a work in progress but I still stand.  No one else needs to know why we do what we do or why we live the way we live.  My daughter and I are two girls facing the world.  We get to write our future.  And sometimes that is scary but sometimes is means great adventures and a sort of liberation and self-awareness I've never been able to embrace before. 

 

Just tonight I wrote to my best friends with whom I've been estranged for about a year and I think I made some headway in repairing the relationship.  I don't need them as I once did.  My life is completely different now but I've reached a point of wanting to make amends for the detritus of the uglier moments of my grief.  It is a process.  I remain hopeful.  Thank you for hearing me. 

[anniegirl]

Christine, I know too well the pain of watching someone become someone else. Dementia is an awful thing in the elderly but a tragic and dangerous thing in someone who is young and otherwise healthy. So many arguments I had with my LH. So many friends who dropped us because "he doesn't look sick" and they were sure his behavior was something he (or I) could control.

 

Your hospice experience should never have happened. That is not what hospice should be at all. You should have gone to the media after but I should have should my LH's DR and simply didn't have the energy. So much we have to let go.

 

My sister started nagging me to date at four months out. She was one (of many) in my family, who think that aside from my daughter, LH was the worst thing that ever happened to me. They never mention him anymore. They behave as though I have always been with my second husband.

 

I don't know how we reconcile ourselves. We start to look back less. We pack away the memories of the really bad stuff. We create and recreate new memories. New lives.

 

But, imo, we become who we want to be if we allow ourselves. Give ourselves the space, time and cut ourselves some slack.

 

I don't know what to say about friends. I cut some people loose. Time healed some rifts but not others. People have to meet you half way, imo. There are some things that grief doesn't allow us to get away with but our true friends and those who love us will make more allowances than hold grudges.

[Bluemoon15]

My story begins in 1993; my husband was 29 going on 30.  Up and until that point, he was the healthiest and strongest person I ever met.  He remained the strongest person I have ever known for another 22 years.

 

Yes, this is a 22-year saga.  If you read it to the end, God bless you.

 

It was just a few days before our son?s second birthday and my beloved was a passenger in a vehicle that was rear-ended at a high rate of speed.  He suffered numerous bulging disks in his spine, but over the course of the next few months he began developing bizarre cognitive symptoms that no one at the hospital could explain.

 

One morning he got up for work and appeared intoxicated.  He began hallucinating and I called the paramedics.  As I waited he fell asleep.  When they arrived, he awoke with no memory of the incident and didn?t believe me, even though our neighbor was present and told him otherwise.  The paramedics left, because he was now alert and oriented.  They hadn?t seen what I had.

 

They did give us a referral to a local neuropsychologist, however, who did an extensive evaluation and diagnosed a minor traumatic brain injury.  Because of the position of his body when the car was hit, his brain had literally smacked around inside of his skull.

 

Months of therapy eventually ended most of the cognitive symptoms, but his lifelong chronic pain had begun.  Seven years later, he had a lumbar fusion, arthroscopic surgery and received a diagnosis of non-Hodgkin?s lymphoma.  A lifelong smoker since the age of eight, they also threw in a COPD diagnosis and told him he would be on oxygen in five years unless he quit smoking.

 

For the remaining 15 years of his life, he only ever had oxygen if he was admitted to the hospital.

 

Perhaps feeling falsely empowered by that fact, he refused to quit smoking.  Later, he tried many times, but he just couldn?t get down past eight cigarettes per day.  Having started smoking at such a young age, he hadn?t developed other coping skills.  Combine that with a list as long as Santa?s of subsequent diagnoses, the stress was just too great for him.

 

Six months later, he was finishing chemotherapy, declared cancer-free (his first tumor was encapsulated so it didn?t metastasize) and I was severely anemic, had developed an exacerbation of my childhood heart disease and was diagnosed with fibromyalgia.  Neither of us were working or had an income for six more months.

 

After his disability was approved, he was already feeling stronger and decided he was going to go back to school and earn a degree in Criminal Justice.  He was commuting every day in addition to his studies, but he was doing very well both physically and academically.  At nearly 40, he had never gone back to school since high school.  Our son and I were so proud of him.

 

He had one setback and had to take a leave of absence, but he eventually finished and after working in asset protection and as a youth care worker at a local children?s home, he followed his dream and pursued a career in law enforcement.

 

The job market here was terrible at the time, so we talked it over and agreed he would expand his search to nationwide.  Soon after, he was hired as a Deputy Sheriff for St. Tammany Parish, Louisiana, working in Corrections.

 

The plan was for our son and I to stay in Pennsylvania until he was established.  The training and testing was intense, and he was the oldest one in his class, but he made it through.  Three months later, his blood pressure was so high he had to take a leave of absence and return home.

 

He never went back.

 

Instead, a flood of diagnoses followed for the next eight years that slowly wore him down to a shell of the man he once was.  He remained physically strong until the end, though.  He was not confined to bed rest as others in his position would be.  He defied the odds so many times, I almost got used to it, and I developed a false sense of security that he would always do so.

 

Nevertheless, we went to doctor after doctor, specialist after specialist, but the diagnoses, the surgeries, the therapies continued to almost no avail, because as soon as we had one thing under control, three more cropped up.

 

We started with a visit to his oncologist who ordered a PET scan and my once cancer-free husband lit up like a Christmas tree from his neck through his entire torso.  We were told, however, that all were too small to biopsy for chemotherapy, and since he had developed severe neuropathy in all four of his extremities, the doc wasn?t going to put him through chemo again at that point.

 

Regular check-ups followed for years with no change.  As his other conditions developed, the oncologist went on the back burner.  He had so many doctor appointments that he just couldn?t handle any more.

 

WIthin the first two years he was diagnosed with severe hypertension, diabetes, metabolic syndrome, severely high cholesterol (he was on three medications for that alone), bilateral knee instability (he fell all the time), in addition to the cancer and the COPD.  Then in 2009, we learned that his spleen was grossly enlarged and harboring his platelets.  Surgery was the only option.

 

Given his COPD, general anesthesia was always a tricky bit for him.  There was always the fear that he wouldn?t be able to breathe on his own afterward.

 

We were sent to a highly recommended surgeon who had an excellent reputation.  However, on the day of my husband?s surgery, he nicked the splenic artery and closed him up.  How on earth no one noticed this is beyond me.  Thank God an alert recovery room nurse saw the signs of internal bleeding and managed to call the surgeon back before he left for lunch.

 

Lee had never had general anesthesia twice in a row before, and it didn?t go well.  While the surgeon stopped the bleeding, Lee was now stuck on the ventilator.  The nightmare had become reality.

 

I really thought I was going to lose him that day.  I had been waiting 11 hours when an understanding nurse came and got me, allowing me to slip into the recovery room to see him for the first time since six that morning.  He was already swelling up and looked like he would never return to me, but I talked to him and told him how much I loved him while the silent tears streamed down my face.  I know he heard me.

 

They finally got him off the ventilator the next day and he spent the next two weeks in the hospital, the first week in ICU.  Unbeknownst to me and despite my careful planning and speaking with everyone involved, his fentanyl pain patch had been removed for surgery and not reordered and replaced afterward.

 

I found a man who was writhing in pain and repeatedly saying, ?I?m going to die, I?m going to die.?  The only thing that would soothe him was a cool cloth on his head that I reapplied for hours.  But he just kept getting worse and no one could tell me why.  Finally, I figured it out, checked for the patch and saw it was gone.

 

It took a couple more hours to get it ordered and applied and then several more after that until he had enough medication in his system to ease the pain and withdrawal symptoms.

 

Long story short, he continued with all sorts of digestive symptoms that got progressively worse over the next two years.  After repeated trips back to the surgeon with no answers, we sought out a second opinion and learned that he had two surgical hernias and part of his bowel fused to his stomach.

 

That was the first time we ever considered suing someone, but the surgeon had died suddenly. Lee remembered he didn?t seem like himself on the day of surgery, said he was acting weird right before he was put under.  Apparently, he had been sick for some time.

 

In 2011, Lee underwent corrective surgery and miraculously, the new doc was able to repair everything including the bowel resection without the need for a colostomy.  He was feeling better than he had in two years and things were looking up.  But then my next dump of diagnoses fell and I was off my feet for ten months out of that year.  We were like the blind leading the blind.

 

Meanwhile, his chronic pain was getting worse and he was on an astronomical amount of narcotic pain medicine, to the point where he was so high, he was constantly losing his balance and falling, nodding off, and getting increasingly confused and disoriented.  My husband was a pretty big guy, and I am a pretty small woman.  Between that and my own health issues, I found myself unable to care for him as well as I thought I should be at times.

 

I suggested visiting nurse, but he refused repeatedly.  I also began suggesting we return to the oncologist for another check-up.  His pain getting so much worse, and his complaints that his bones felt like they were breaking, cracking all the time with extreme pain, followed by a fractured hand and four disks completely gone, I was concerned that the cancer had spread to his bones.

 

HIs father had died of bone cancer and his sister passed from brain cancer.  Between his history and his family history, I was so afraid.  But he repeatedly refused to see the oncologist, saying he didn?t think he could go through chemo again.  He was even afraid to have his back operated on again, opting for a series of day surgery injections instead.

 

The beginning of the end came four months before he died.  He was standing in front of the refrigerator looking for something to eat and suddenly both of his knees gave out.  He fell and  fractured every bone in his right foot; the doctor said it looked like he had been in a car accident.  She had never seen a fracture that severe from a simple fall.

 

He had to go through a series of surgeries and casts to put his foot back together again and was non-weight bearing until the day he died.  We have no bathroom on our first floor so it was a challenge.  Worst of all, his fractured right foot was his ?good foot?; he had lost three toes and a quarter of his left foot in an industrial accident back in 1985.

 

I begged him to go back to the oncologist.  He developed ascites and his abdomen kept growing, but he still refused to go.

 

He died in his sleep during the early morning hours of January 3.  I had sat up with him until 3 a.m. that night.  When I awoke at around 11 a.m., I found him cold and unresponsive.  Oh, how I beat myself up over that!

 

Why didn?t I see that this time was different, that his semi-conscious state was not the effect of the narcotics this time?  Why didn?t I stay up ALL night with him?  Why did he have to die alone, without me by his side to send him off?

 

It wasn?t until today, as I was writing this, that I realized that had I done any of these things, his life may have been saved, but his agony prolonged just so he could go through another round of chemo and endure another lumbar fusion, neither of which he wanted.

 

I was so used to him beating the odds and bouncing back that I really was shocked when he passed.  Hiis physical strength sustained him all the way up to the end.  We had just enjoyed an amazing holiday season, Christmas, our 27th wedding anniversary and New Year?s.  He had a great week, which often happens before someone passes. 

 

As a former nurse, I would have seen it coming, but as a wife and best friend of 38 years, I couldn?t my hand in front of my face.  The very thought of living without him, thrust me into a deep state of denial.

 

Right after I found him, I had an out-of-body experience.  I believe it happened, because I really felt I couldn?t live without him, but it wasn?t my time so I was sent back.  But telling our only child, who at 23 considered his father to be his best friend, was even more arduous.

 

I was still in shock when I woke him and told him.  Oh, the pain of seeing him run downstairs, to hear him screaming, to see him struggle to move his father to the floor to perform CPR.  I knew it was too late, but I had to let him do it.  He needed to do it.

 

That was a Saturday.  On Sunday, I was hugging family and friends while they cried.  By Monday, I was medicated.  I was having severe panic attacks, which was not good given my heart disease.  The first month was one big, awful, gut-wrenching pain as I walked around like a zombie who periodically burst into tears.  Neither of us ate anything for over two days.  We never even thought about it.

 

I have just weaned off the Lorazepam for that, but remain on an increased dose of Abilify that is going to have to be increased again.  Thankfully, it works with my Cymbalta for my fibromyalgia, so I am not on a high dose.

 

I have surgeries of my own that have been put off for years that cannot wait any longer.  And all I think about is I?ve never had a procedure done without him there to send me off and to be by my side after I return since I was six years old.

 

We were just young teens when we first met.  I can barely remember my life without him in it anymore.

 

Yet, here I am, making little bits of progress three months out and never stopping for more than a few days of active grieving, because I have an 87-year-old mother who depends on me, and I have to fight for my own survival since there was no life insurance.  Ironically, Lee finally agreed to take out policies just days before he died.

 

Looking back, I think he knew he was leaving me soon.  He just didn?t know how soon.  And ever protective to the end, he didn?t tell me.

 

Having been denied my own disability three times over the years for a laundry list of reasons, I?ve had to reapply in order to qualify for a widow?s pension since I am under age 60.  Why?  Why does the age matter, when one loses their sole source of income along with their beloved?  My last denial was due to his income being too high, so they put me in this financial debacle. 

 

Now, I have to wait for months while I continue to work to establish myself as a freelance writer and live on a mere $136 per month from Section 8, which is intended for payment of utilities. 

 

Perhaps, it is a blessing that I have so much on my plate, that falling apart for more than a few minutes is not an option.  The first month I was literally sick with grief and had to stop crying.

 

My best friend, my soul mate, my beloved took a big piece of my already damaged heart with him.  I am forever different:  damaged, yet strengthened, scared, yet empowered, alone, yet feeling him with me at the most important times.

 

He is still protecting me, watching over me, and I will still miss him with every fiber of my being, every single hour of every single day until we see each other again.

 

[Dahlia]

If you have read this whole post, thank you.  I don't tell this story much anymore.  I needed to do it today.

 

You are welcome.

 

I rarely tell my story either and certainly couldn't in such detail. It's too hard. I don't think I have enough words anyway.

 

I understand the need to tell it.

 

Thanks for sharing.

 

Thank you, anniegirl for sharing. It has helped me so much.

 

Last night, I was journaling, and I was thinking about all of the people I love who have either died or are about to die. My father died 18 years ago from cancer, and it was a difficult six months in which I did the bulk of the caregiving.

My husband died in March after 16 years of fighting a brain tumor that robbed him slowly of so much.

My mom has severe Alzheimer's and in the last few weeks has lost everything that made her her.

One of my best friends has stage four colon cancer and the doctors just can't get it under control.

 

Someone said to me, "Everyone has burdens. Maybe your burden is that almost everyone you love will slowly die in front of you."

 

So, I am writing about this last night, but all I can get out is a half a paragraph. Nothing else. I go to my daughter, and we talk about our feelings of Scott's presence in our lives, and she said, "I know he is with me. I am almost exactly like him, and I can just hear him, see him in everything I do."

 

And I thought that maybe I just will never feel that he is still here because he and I were opposites (who attracted like mad). But reading your story made me realize that on one hand, I have already done a lot of grieving as he lay in a facility unable to do anything much. And that maybe it is just too painful for me to feel he is with me just yet. To reflect on our life together and what we actually lost might actually kill me at this point.

 

I wish I could be more clear about what your story meant to me. To know you walked those hallways and had those conversations, worries and shriveled dreams just matters. In a terrible, awful way. 

[anniegirl]

And that maybe it is just too painful for me to feel he is with me just yet. To reflect on our life together and what we actually lost might actually kill me at this point.

 

When you are ready to look back and sort through, you just will.

 

I don't feel my LH around because I am pretty sure he's gone.

 

LH died on a Monday night and by the time, everything was taken care of, it was well past midnight.

 

Surprisingly, I was able to sleep and bit and when I did, I had a dream where I saw him and two other young men (later I realized that they were probably two highschool buddies of his who'd both committed suicide when they were in university - deaths that impacted LH greatly). They were packing up the trunk of LH's old car. The one another friend of his had totaled shortly before we met.

 

LH never looked my way and even from the distance, I could see he was happy and excited about the trip he and his friends where going on and then they climbed into the vehicle and drove away.

 

Occasionally a song will come on the radio when I am vexed or worried or I will hear it and it will remind me that the day is an anniversary of this or that. But otherwise, he is living his destiny and I am living mine. And that's okay.

 

 

[Dahlia]

I really have no words for these stories. I don't even have to tell my story since everyone has told it already. Here's a poem that I think of when I reflect on the caregiving for someone so strong, so intelligent, so lovely who became an empty shell and passed out of my life.

 

I WAKE and feel the fell of dark, not day.

What hours, O what black hours we have spent

This night! what sights you, heart, saw; ways you went!

And more must, in yet longer light?s delay.   

With witness I speak this. But where I say       

Hours I mean years, mean life.

And my lament

Is cries countless, cries like dead letters sent

To dearest him that lives alas! away. 

I am gall, I am heartburn. God?s most deep decree

Bitter would have me taste: my taste was me;       

Bones built in me, flesh filled, blood brimmed the curse. 

Selfyeast of spirit a dull dough sours. I see

The lost are like this, and their scourge to be

As I am mine, their sweating selves; but worse.