Specific Situations > Extreme Caregiving

Tell Your Story

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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.

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.

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

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.

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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