Author Topic: Tell Your Story  (Read 8726 times)

Shelby

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Tell Your Story
« on: March 09, 2015, 07:30:28 AM »
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

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Re: Tell Your Story
« Reply #1 on: March 09, 2015, 09:58:31 AM »
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

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Re: Tell Your Story
« Reply #2 on: March 09, 2015, 06:22:18 PM »
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
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lcoxwell

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Re: Tell Your Story
« Reply #3 on: March 09, 2015, 08:04:22 PM »
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.
"The highest tribute to the dead is not grief but gratitude." - Thornton Wilder

Thank you, my dearest Kenneth, for loving me and for giving me the best 13 years of my life.

anniegirl

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Re: Tell Your Story
« Reply #4 on: March 10, 2015, 11:47:26 AM »
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.



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Shelby

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Re: Tell Your Story
« Reply #5 on: March 10, 2015, 01:03:15 PM »
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

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Re: Tell Your Story
« Reply #6 on: March 11, 2015, 05:09:47 PM »
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.
« Last Edit: March 11, 2015, 06:04:58 PM by Wheelerswife »
Life is short.  Love with all you've got. 

Barry 11/29/55-9/22/09       John  1/16/57-1/11/14

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anniegirl

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Re: Tell Your Story
« Reply #7 on: March 11, 2015, 05:42:48 PM »
Quote
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.
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Shelby

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Re: Tell Your Story
« Reply #8 on: March 11, 2015, 05:53:56 PM »
I love you all.

anniegirl

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Re: Tell Your Story
« Reply #9 on: March 12, 2015, 08:32:05 PM »
Thanks, Shelby.

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

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Re: Tell Your Story
« Reply #10 on: March 12, 2015, 09:11:57 PM »
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.
"The highest tribute to the dead is not grief but gratitude." - Thornton Wilder

Thank you, my dearest Kenneth, for loving me and for giving me the best 13 years of my life.

Wheelerswife

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Re: Tell Your Story
« Reply #11 on: March 12, 2015, 10:23:33 PM »
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
Life is short.  Love with all you've got. 

Barry 11/29/55-9/22/09       John  1/16/57-1/11/14

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SimiRed

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Re: Tell Your Story
« Reply #12 on: March 16, 2015, 09:04:21 AM »
@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.
~Tracey~
My wonderful husband Rick of 19 years, 12/11/67 - 9/20/09 Neuroendocrine cancer.
I still miss you everyday, I go forward, but my mind stands still.

robunknown

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Re: Tell Your Story
« Reply #13 on: March 16, 2015, 12:31:49 PM »
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.

A Tout Jamais

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Re: Tell Your Story
« Reply #14 on: March 22, 2015, 02:29:51 PM »
Deleted!
« Last Edit: July 21, 2015, 08:17:32 PM by A Tout Jamais »
"Tu n'es plus là où tu étais, mais tu es partout là où je suis."
~~ Victor Hugo

"Je me souviens de toi ... Je me souviens de nous  - Il était une fois -  Je me souviens de tout!"