Thursday, November 14, 2013

The Damage Type 2 Diabetes Can Do ~ The story I haven't written before

Two years ago today, I kissed my mother, told her that I loved her, then sat in a waiting room alone and cried.

On that day, so very coincidentally on World Diabetes Awareness Day, her life was changing irreversibly. All of our lives changed that day.

They'd already changed so much in such a short period of time.

I thought I had lost her the month prior, though that time for a different reason.

On November 14, 2011, I told her I loved her, not knowing if it would be the last time.

The afternoon before, I had called a dear friend of mine who is a pastor. She came without asking any questions and sat with us as we bowed our heads, held hands, wished for guidance and peace.

She did just that. She brought us peace. I can never repay her for that kindness.

By then, the choice had been made. It had to be made or a certain ending would rapidly come. The word choice is a bit misleading when the only choice is to choose or die.

It was gangrene. There was no question anymore.  The tips of her toes had blackened, and the telltale signs were spreading upward too fast. We'd waited and hoped, she'd gone through several prior surgeries to try and save the blood vessels. Days when she was sedated in the ICU with gigantic metal wires in her femoral arteries trying to pump medications directly to the blocked arteries. None of it worked. We'd exhausted every other option.

Weeks had gone by like this. Trying to save the leg, her in excruciating pain when she was conscious enough to feel it, knocked out most of the rest of the time. I can't tell you how many hours I spent sitting in hospital chairs, waiting for her to wake up, hoping to catch the doctor, asking questions that never had the answers we wanted to hear.

Then it was time.

The surgeons were called.

For all the time spent waiting, we knew that time was rapidly speeding up. We had to do it now, or risk needing to go higher. The higher the amputation, the more disabling it would be, the harder the recovery, the more life altering.

It was all going to be hard no matter what.

It had already been hard.

My mother had been diagnosed with type 2 diabetes about two years before that day, though she didn't want to accept her diagnosis. In reality, she had probably been walking around with it for a long time before then. She lived in denial of it, refused to accept it. She didn't want to hear doctors say that smoking was especially dangerous with diabetes, that her clotting disorder put her at an exceptionally high risk for circulatory problems, that she could lose her legs, that any number of other things could happen...so she didn't. She willfully ignored it all, even though she had already had a DVT many years prior. We tried all we could think of to help her come to a place of acceptance. We all tried.

Every so often, she would try. A little. For a little while. Until it got hard.

It always got too hard.

She didn't want help. She didn't want anyone going to the doctor with her. She didn't want anyone helping her figure out what to eat. She didn't want anyone asking how her numbers were. She worked pretty hard to keep us in the dark about it all. She changed doctors frequently, she refused to let us talk to them. All we ever knew was what she wanted to tell us, except for when she was in the hospital and we'd find out the hard way.

After my father died, she spiraled downward very rapidly. Her diabetes, never well controlled, got worse in a hurry. She moved closer to us, but still refused to allow any involvement with her medical care. On a day that she had no choice but to ask for help, I took her to a podiatrist. The pulses in her feet were both weak. Severe peripheral artery disease. He was concerned, she just wanted it to get better. His face told me how serious it was, but she never saw it. She just wanted to go out to lunch.

She labored under the delusion that modern medicine could fix anything.

Not long after that, she ended up at the emergency room with a foot that kept changing colors. The blood supply was slowly being cut-off, and I watched as her foot slowly died a little more every day.

Once the first amputation was done, we lived in fear of the next. We knew the statistics, and they weren't good. An uncontrolled diabetic was far more likely to require a revision of the first amputation or to require amputation of another limb within a year. Only four months later she was being taken in a helicopter to another hospital where a vascular surgeon would try to save her remaining leg. Her life leg, they called it.

Her life leg.

They put her in a helicopter that morning because it was her only chance to live and everyone knew it. I stood in a parking lot alone as I watched her fly away, sobbing uncontrollably. The doctors at the hospital they took her to managed to save that leg, that time. She was in the hospital for weeks, a rehab facility for months.

I drove back and forth to that far away hospital almost every day, just to sit in a chair for hours again waiting for her to wake up, waiting to catch the doctor. I dropped everything else in my life, again, only to find out that she wanted to leave as soon as she was able. I couldn't stop her.

She decided to move back home, a thousand miles from here. She didn't want to stay in a facility, and I couldn't take care of her. Her needs were too many, our resources too few, she still refused to accept her condition, there was too much else to the story and I just couldn't do it. I couldn't. It had nothing to do with what I wanted to be able to do. I couldn't do it.

With the oldest a few weeks before she left.
She never forgave me.

She lost that leg almost exactly a year after the helicopter flight, in March of this year.

I had no clue it had even happened until weeks later when she threw a clot and had a pulmonary embolism. It scared her enough that she called me.  It took her two more days to tell me she lost the other leg. She didn't want me to know. I only knew what happened here because of physical proximity, because I could lay eyes on her, because when she was asleep at the hospital the nurses would talk to me.

Once she left, there was nothing I could do to try and help her. I couldn't even find her half the time. I called and called. I never knew if she was alive or dead. We checked obituaries habitually, reluctantly, just in case. When I could find her, sometimes she would talk to me. Sometimes she wouldn't. More than once, she forbade the nurses from talking to me on the phone.

I was a thousand miles away and no one would tell me anything. It never stopped me from trying.

She didn't want help. She never did. She wanted someone to tell her that she could eat whatever she wanted, that soda was safe, that smoking wouldn't hurt her. She wanted someone to tell her that it would all be okay, that it could be fixed, that she could be better. She wanted a magic cure. I couldn't tell her those things, I wouldn't tell her those things.

I couldn't enable her.

Choosing not to was the single hardest decision of my life, even if no one else ever understands that.

I wanted her to live.

It didn't matter what I wanted.

It never did.

My Mom died last month after gangrene set in again, this time in the remnants of both of her legs. She was offered, and refused surgery to revise the amputations. She didn't want to go through it again. I understood. They would have needed to take both legs at the hip.

She went onto hospice and was gone in a few short weeks.

It still doesn't seem real to write that.

It seems like some horrible nightmare, like things like this don't actually happen in real life, shouldn't actually happen in real life. No one should ever be subjected to the pain she was in. I know how awful it was when she was here, when it was only one leg. I can't even begin to imagine how hard it must have been at the end, and I'll never know because I was here and she was there.

It doesn't feel like she is really gone.

It doesn't feel real because I've kissed her and told her I love her so many times before never knowing if it was the last time. I've said goodbye to her before, more than once.

This time it is real.

It seems stranger yet to be writing about any of this here. She didn't want people to know about any of her medical problems. She didn't want people to know about the diabetes or the amputations. As crazy as it sounds, I did my best to honor that. To protect her. I never wrote about any of it. I couldn't enable her, but I needed to protect her. I still am protecting her because I won't write about all the other chapters in this tale. Maybe someday....but today is not that day.

Even if no one believes it, I loved her.

God, I loved her.

Love wasn't enough.

I hadn't seen her in over a year when she died. I would have given anything for it to be different. It wasn't.

My mother taught me a great many lessons in her life, the last of which is this: if someone doesn't want help, there is nothing you can do to help them. Only they can help themselves.

Type 2 diabetes can be managed, if you choose.

These complications can be avoided entirely or delayed or reduced in magnitude.

If you don't control it, it will kill you.

I promise you it will. 

Maybe not this way, but somehow, it will kill you.

My Mom's diabetes was uncontrolled. Now she's gone, and there is nothing I can do except tell this story in the hope that someone out there who needs to read it will.

I miss you, Mom, and I love you.

I wish things were different. I wished it then, I wish it now, but wishing doesn't change anything.

She always struggled with this time of year as it held reminders of too many people she had lost. I struggle now too, and have one more day on the calendar to dread. I can't just be somber though because it's not how I work.

I have to do what I can to help others understand the devastation that can be done by this disease.

Check your sugars.

Please.

16 comments:

  1. I can't think of much to say... you wrote this exactly as you intended.. from the heart, with full disclosure and through a lot of tears. It's truly what makes you one of my favorite writers. I wish I could change these cannots to can dos or fill some of these wishes.... losing parents and feeling helpless when seeing them go just effing sucks.

    Sending you love today
    Munch

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  2. I don't want to be maudlin by saying too much or the wrong thing.

    Hugs and thank you for being so strong to write this.

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  3. I'm so glad that you've written this and published it. It's SUCH an important message. Heartbreaking, because it's so painfully close to you. But T2 needs to have a little sunshine shone on it, and become demystified. People who have it MUST know what it can be like if they get it horribly, consistently wrong - they need that informed choice.

    Bravo.

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  4. I am in awe of your strength. It took a great deal of courage to live this.... and write it. You are truly an exceptional woman. Love to you and yours. Xoxo

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  5. Beautifully done. Full of love and honor.

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  6. Thank you for sharing this. I'm sure there are some people out there who will read it and it will make a difference. My husband has type 1 and I loathe it. Loathe. I've thought he was about to die on more than one occasion now. I have PTSD because of it. He is still here, but I have no idea for how much longer. We take each day as it comes and he tries his best to stay healthy.

    I'm so sorry for your loss.

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  7. Remember when I said to you that one of the reasons I admire you so much is because your writing matters? Well, it does, so very much. So much love to you my friend <3

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  8. I'm sorry. I know that was so hard for you to write. I could actually feel you crying while you typed. xo

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  9. Oh, Kel, I am so terribly sorry. I feel horrible. I've dropped off the face of the blogging world for months, only to come back and learn about this. There is nothing I can say that will make this better, but please know that I am sending love your way.

    You are an amazing person and someone I hugely admire. Your writing is so important, and so beautiful. I'm just sorry you had to write this particular story.

    Hugs.

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  10. My heart hurts for you that you have this story to tell, but I'm glad you chose to share it. It's important as it is painful. All the love to you.

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  11. I feel awful that you went through this, and I am so sorry you lost your mother. That's devastating. As you know, I have been through something similar with my sister before she passed away. It's so hard to find peace…so hard to understand why someone you love so dearly would let themselves just…go like that. It tears at me every day still….I hope you can somehow find peace in all of this. Writing is the best thing you can do right now. Hang onto the good memories and try to forget the bad. I'm hurting for you right now. If there is anything I can do or if you just need to talk, you know where to find me. XO

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  12. Thanks for writing this. Hugs and love to you. My dad was diabetic too and struggled so hard with his diet.. such a tough disease.. and yes so much denial. I work to help my patients deal with it daily in my work.. stop eating junk; stop smoking; start exercising; lose weigh.. may we find a cure and learn how to support and encourage. And you are soo right.. we can not change or make someone do something.. no matter how much we love them.. I am powerless over other people places and things... but I can control myself (sometimes) hang in there Kelly!!!

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  13. I read this post this morning -- and it has been running around in my head all day.

    My mom has Type 2 Diabetes, and I have been treating it like it is the "common cold" and with a little exercise and some meal plan changes she will be right as rain.

    Clearly I am living in Lala Land and have not taken full cognisense of this disease... would you mind if featured your blog post on my blog over at www.reluctantmom.wordpress.com ......?

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    1. Please do. Good luck with everything. xoxo

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  14. just reading this now my friend........

    beautifully written, profoundly felt, changing lives

    Love and light to you my dear friend.

    ~G

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