What is a Caregiver?

There is this issue that has been bugging me for awhile. It is that I feel I am not seen as a caregiver to my husband.

It seems that people think of caregivers as those who tend to the elderly or children.

I get a newsletter from the chain of clinics my family sees doctors at. In it I've seen a blurb about a support group for caregivers. Looking closer, I see that it is specifically for those who care for someone who has Alzheimer's.

In the waiting room of my husband's cardiologist he picked up a copy of the American Diabetes Association magazine. Looking through it on our way home, I noticed in the table of contents an article "for caregivers". I flipped to the page number and read the words "caregivers of children with diabetes".

And I thought, "What about me?"

Is a wife who is there for her husband through all of his health problems not also a caregiver?

Because let me tell you, I am indeed a caregiver to Mark.

Each time he needs me to run upstairs to get something because his legs are too tired.

When he needs help redressing his surgery incisions.

If his blood sugar is low and he needs something to eat.

When he had bypass surgery and they discovered infection surrounding his heart, I had to be taught how to give him IV antibiotics through a port in his arm.

Back in 1996 when he got a kidney and pancreas, his transplant coordinator turned to me and said, after hearing that we lived together, "Congratulations, you just received a transplant too."

And when we very first moved in together in 1994, I learned how to give Mark insulin injections in his arms, so he could sometimes not have to give them to himself in his abdomen.

Through surgeries, infections and hospital stays, for nearly 20 years, I have been helping my husband manage his health problems.

If that's not a caregiver, I don't know what is.

Would I not benefit from a support group or helpful information in a magazine article?

Or is it that the vows "in sickness and in health" mean a spouse is merely obligated?

These are the things I felt until I recently turned to Google to investigate. I found:

• Apparently there is a Well Spouse Association.
• Medicare.gov has a page about caregiving.
• There is what looks like an online magazine called Today's Caregiver.
• And CareGiving.com, "caring for you as you care for family and friends".

So OK, there are some resources out there. I feel relieved by this, but on the other hand, I wonder why I had to go searching for them. Why has no one with Mark's dialysis clinic or his endocrinologist or cardiologist or, or....ever pointed us in any of these directions?

I feel it just goes to show that taking care of the WHOLE person/family is NOT happening.

Like, no one seems to think my children will need any counseling until it falls under the umbrella of bereavement.

Why does their dad have to be dead before the situation looks like something that might need attention?

These are obviously open-ended questions. I don't expect anyone reading this to have the answers.

I just wonder if this is yet another healthcare hurdle, you know? I wonder why I had to seek out counseling for myself. Why, when my primary care physician prescribed an anti-anxiety medication for me, did he not also insist I get into counseling?

Why do I even have to wonder?

Did You Know? Paying it Forward

Do you know how incredible "paying it forward" is?

Everyone knows what this is, right? It's the concept that when someone does something nice for you, you "pay it forward" by doing something nice for someone else.

It looks like this:

Paying it forward can mean many different things. It can be big or small, grand or subtle. We don't all have to be Oprah or Bill Gates to do good.

Something as simple as paying the toll for the person in the car behind you can start a chain reaction of kind acts. The person you paid for may go on later in the day to pay for someone else's mocha. The person who got the free mocha may let the person behind them in line at the grocery store who has only 1 item go ahead of them and their full cart. The person who got to cut in line may decide to help their elderly neighbor pull their garbage can to the curb. And so on and so forth.

What has inspired me to write about paying it forward is what I saw transpire during my husband's recent health crisis. He and I needed help, both logistically and emotionally, and sometimes at very inopportune times. My closest friends were there for me at the first phone call. Their husbands helped them to help me. When their husbands couldn't, other friends stepped up to support my close friends as they supported me.

When Mark's parents decided to come, they needed support from friends and neighbors at home, to drive them to the airport, take care of their pets, get their mail, etc. A good friend of my dad's stopped by and pushed to find out how he was doing because my dad has had a heart attack and his friend was worried about the stress.

Mark is the kind of guy who can make friends with anyone, and he wants everyone to be happy. He has wormed his way into the hearts of his co-workers who decided to pitch in to provide our family with needed food and household items. I suspect they needed support from their loved ones in order to take the time, energy and money to do this.

While spending time at the hospital, I watched as friends and family members were always polite and courteous enough to ask others if they wanted anything when they made a trip to the cafeteria. I cannot count how many times I was asked, "Do you need anything?".

Everyone around me has been paying it forward....and back and forth. It is an amazing and inspiring thing to see! I can only hope that I will be able to pay it forward somehow too. I have a little, by sharing the homemade food and watching a friend's kids. But that's not nearly enough.

Did you know that paying it forward with kindness can make someone's day, and make YOU feel good too? And, that it can have a ripple effect that stretches far beyond just you?

G'head, write up a Did You Know? post, grab the button and link it up with me and motherhood: TRUTH today through Friday!

TGIF: The BIG Gratitude Edition

Wow. Just wow.

And here I thought I wouldn't be feeling happy today, that writing a TGIF post would be a challenge.

That's what I get for thinkin'!

How is it that the older I get, the less I seem to know?

What are you talking about, Jennifer??

Okay, okay. Like Mark says, "Hold your pantyhose!"

So this has been the month from Hell and I'm very glad it ends tomorrow. But thankfully, we get to leave March with some good news in our back pockets.

Here's what I posted on our family Facebook page:

My cousin keeps teasing that Mark is a big faker. His step-sister says he has about 98 lives. My dad and I joked that he's just an attention seeker. It's all out of love. Truly, deep and abiding love.

I am so grateful.

I believe Mark's recovery from this is a true testament to the power of prayer and positive energy. And yet another example of my husband's fighting spirit. I believe he DECIDED he wasn't gonna die yet.

I know it's not like Mark is cured of Diabetes or kidney failure, or like this little episode never happened or his heart is none the worse for wear. But by God, I think we are allowed to breath a sigh of relief at this news. We do still have some time. Mark isn't done yet.

If this doesn't give us perspective, nothing will. We will not take this good news for granted. There will be no "guess that's over with" mentality. We will go ahead with our vow renewal in May and Mark will go ahead with his plan to make videos for the kids. I want to start helping Mark to cross some things off his bucket list.

We will keep squeezing those drops out of life, and never forget what we have to lose.

Not only am I extremely grateful to know Mark is doing much better, but I have been overwhelmed by the outpouring of love and support from all around. From our loyal and steadfast family and friends, to Mark's uber generous co-workers and prayer chains from far and wide. Every single last bit of it was noticed, felt and appreciated. And I don't even mean to say that in the past tense, as I'm sure it won't just end here. It's just.... A-MA-ZING!

Where will the next twist of the roller coaster take us?

Write up some HAPPY, grab the button, link it up!

(Linky open all weekend.)

What can I say?

What's that I've got up there as my tagline? My life is a roller coaster? Yeah. That.

Not only that, but there are roller coasters WITHIN the roller coaster of life. The past two weeks have taken me on one helluva ride.

And it's not even over.

I'm not even going to be coy with placing links within my sentences. Here is a list of what I've written since the first of the month:

• My Husband is in Critical Care
• A Critical Listcle
• Still Critical
• TGIF - 3/9
• A Sick Heart

Today I am trying to process everything. After thinking my husband was about to die, I got to bring Mark home yesterday. I am amazed, overwhelmed, happy, stunned....and thinking WTF??

WTF because, WTF just happened? HOW-TF did he survive what he went through? And, WHERE-TF is this going to take us from here?

I need to be clear. It is amazing, and quite possibly another freaking miracle, that Mark is home with us right now. But he is still sick. He is currently stable, but that could change at any moment. Today, tomorrow, next week, next month, or next year. His heart is seriously compromised by heart attacks, Atrial Fibrillation and CHF (Congestive Heart Failure), not to mention STOPPING several times now. He is on some strong ass drugs to try to prevent A-Fib and blood clots. Pile that all on top of his Diabetes and dialysis and my husband is indeed sicker than he was on February 29th. He will not be returning to work and legally he is not allowed to drive for at least 6 months after coding. Our lives are changed.

But Mark is STILL ALIVE, for crying out loud! His mother was convinced this was it. I was almost convinced.

I feel so many things that I don't know if I can adequately articulate right now. Some people have felt anger over what is happening to Mark. I refuse to waste this time I have with him on anger. I'm also trying not to be sad over what almost happened, or even that it could still happen. I don't need to feel sad until it DOES happen. I feel blessed and awed and happy that I got to bring him home. Home to his kids. This was honestly the best possible outcome, and we got it.

What I need to work through right now is stress and fear. Stress over the changes (financial, logistical, medical). And fear of the "what ifs". What if he codes here at home? What if he dies in his sleep right next to me? What if something scary happens in front of the children? Can I ever leave him alone? And what if I lose him forever?

Another thing I feel is immense GRATITUDE. Yes, grateful that Mark came through this. But the outpouring of love, support and help has overwhelmed me! "Thank you" doesn't feel like enough. I keep saying it, and it's just not doing it for me.

All of our parents came. Mark's sister and nieces came. My aunt was at the hospital every day. My uncle and a couple of cousins came. Mark's co-workers at Home Depot have been so generous. And my best girlfriends, who spent more than one night at the hospital with me, who made sure my kids were well taken care of and who cried with me. To have people in your life who are YOUR advocates while you're busy advocating for your spouse, is a tremendous gift.

Lest I forget, all the comments and tweets from those of you who read me have truly helped to bouy me and make me smile in the midst of some scary shit. Sorry, but swearing about this feels kinda good.

See? This stuff I'm saying sounds totally inadequate. Maybe I can do better expressing my feelings as time goes on.

A Critical Listicle

Yes, Mark is still in the hospital and I am still doing a Listicle.

It won't be about this week's topic, however.

1. Thursday - Saturday were really hard. I left Mark at the hospital Thursday afternoon thinking he'd only be in for a night of observation.

2. Before Friday could dawn, I got 2 of the worst phone calls a wife can get. My husband's heart had gone into A-Fib, stopped and restarted, shocked again to try to stop the A-Fib, he was intubated and moved to critical care.

3. I rushed to the hospital because he was scary unstable. Really scary unstable. Like, the worst could happen, unstable.

4. Nothing happened on Friday. I left my children with friends and went home with the most nervous stomach I've ever had in my life. Saturday morning I wrote THIS.

5. I was so tired and out of it on Saturday. Often when things like this happen I move in slow motion. It's hard for me to make decisions and I just don't really care about anything besides what's going on with Mark.

6. But Sunday was better. I slept better and got good news when I called his nurse. The next thing I knew, she was calling me back to tell me Mark was fully awake and asking for me. I cannot tell you how amazing hearing that feels!

7. Seeing him awake and talking to him makes the hugest world of difference. I feel so helpless when he's not able to communicate how he feels and what he thinks. Also, his inherent charisma just makes everything better. Even in these dire situations. He was cracking me up with how pissed he was about being shocked!

8. I want to revel in the relief of Sunday's developments, but I'm still guarded. He's not out of the woods yet. There's still plenty to worry about. I have no idea what his prognosis is, how life might change going forward or what we're facing. Those answers will come in the days ahead.

9. YOU GUYS! You guys, whether in real life or here on my computer, have been amazing! You have said the sweetest things, You have HELD me. Honestly, I think blogging came into my life at exactly the right time, when I would need the supportive connections I've made most. The way everyone has rallied around me...it's overwhelming. In a good way!

10. This road we're on, this life of ours with it's sad and scary times, is unpredictable. I never know what will be around the next corner. And it scares the hell out of me! But what I do know is that I am not alone. I know I am loved and cared for and thought of. It really does make a difference. Please, hold your loved ones tight and tell them you love them. Because life can change on a dime. Do it so you have no regrets. Do it for me and Mark.

The Mom (Woman) Pledge

The Mom Pledge

I am proud to be a mom. I will conduct myself with integrity in all my online activities. I can lead by example.

I pledge to treat my fellow moms with respect. I will acknowledge that there is no one, "right" way to be a good Mom. Each woman makes the choices best for her family.

I believe a healthy dialogue on important issues is a good thing. I will welcome differing opinions when offered in a respectful, non-judgmental manner. And will treat those who do so in kind.

I stand up against cyber bullying. My online space reflects who I am and what I believe in. I will not tolerate comments that are rude, condescending or disrespectful.

I refuse to give those who attack a platform. I will remove their remarks with no mention or response. I can take control.

I want to see moms work together to build one another up, not tear each other down. Words can be used as weapons. I will not engage in that behavior.

I affirm that we are a community. As a member, I will strive to foster goodwill among moms. Together, we can make a difference.

* * * * *

"There seems to be no end to the topics that can generate controversy. A recent poll of Mom bloggers revealed 76% had experienced or witnessed cyber bullying between moms on online."

You know, I think this is a great idea, a great pledge to take, a great word to spread.

But it shouldn't even be an issue!

Cyber bullying of moms?

Really, people?

Shame on anyone who picks on a mother.  Extra shame on a mom who picks on a fellow mom.

In my 11 years as a mom I have learned that each and every one of us is doing the best we can with what we've got.  We ALL love our kids.  We ALL want the best for them.

There is no argument about that.

Anything else we could argue about, is all personal choice and opinion.  And you can't tell people how to feel, what to value, what you think they should be doing.  Even if someone asks your advice, still the only thing you can offer is your personal opinion.  The other person doesn't have to agree.

Is that annoying?  I know, right?  But....

We should be kind, caring and compassionate enough to have healthy debates that don't denegrate one another.

I know it's frustrating when you don't agree with something someone's doing.  I get frustrated all the bloody time (hence Fantasy Eff Off Fridays)!  Venting is healthy. Attacking is not.  We are ultimately only responsible for our own actions, our own stuff.

And we are responsible for what we put out there.

"Life is like a boomerang; what you give, you get back."

If we want support, we need to give it.  If we want understanding, we need to give it.

Moms really need these things.

Women in general need these things.

Why do you think there are so many women/mom bloggers?

We should support and try to understand one another EVERY DAY.

No jealousy, spite, conceit or negativity.

I hope, here in my personal Internet space, that I am putting out positive energy more than I'm not.  I hope that my posts make people smile. When I do write about sad or difficult things, my hope is that I will be given support and understanding.  I also hope I am succeeding in giving these things to others.

The last thing any of us needs to do is tear another woman down.  We do enough of that to ourselves.

"There is a special place in hell for women who do not help other women."

~Madeleine K. Albright

We say we want strong female relationships, yet we so often do things to undermine them.  Our busy lives, obligations, assumptions and insecurities all get in the way.  I'm guilty of it.  Perhaps you are too.  We can always try harder.  Just be real, honest, kind and loving, and hopefully the rest will take care of itself.

So here's to you, my fellow moms, fellow women!