What If and If Only

Caregiver burdens we must stop carrying

what if

What if we let God handle our doubts and fears

As I stood under the spray of my shower yesterday morning, the what if moments of our cancer journey replayed through my mind.

The remonstrating hospital staff telling me that I shouldn’t do that repeated in my head as well.  But my son bleeding in his tears haunts me and I’ve always wondered how I let him get that sick.  The bruises spreading like wildfire as I drove the hour to the hospital have sent their own bruises into my mind, leaving black holes of self-doubt.  The wondering voices of nurses who came back to see us our third and fourth week in the hospital, speaking in awe that Andrew was “still with us” as they hadn’t “thought he would survive the first few days” have sounded like a gong of “bad mother” through my head.

No matter how many times the doctors said not to, I always wondered, “What if…”

Andrew on his way to chemo

What if I had brought Andrew into the doctor earlier.  If only I had known the bruises wouldn’t make doctors think of abuse, but of cancer.  If only we hadn’t all caught that flu bug.  What if I had taken Andrew to the doctor when he first began throwing up?

Gianmarco

This week is a sad, confusing and rejoicing week for our family.  It was thirteen years ago this week that my four-year-old Andrew was diagnosed with leukemia – a terrible day, an awful week, a horrible month and a terrifying time.  Also, a friend (found through this website) had her oldest son (Gianmarco) diagnosed with leukemia this week two years ago.  Sadly, he didn’t survive the fight.  Another little girl (Julianna)  I’ve been praying for many times a day (click here to read a post), passed away on Friday, the valiant victim of DIPG.

Julianna

The difference for this caregiving mom is that my son is a survivor.  He didn’t survive because of anything I did or didn’t do, nor did those others pass away because of anything done or not done.  It’s the ugliness of cancer. Our battle wasn’t easy, and at times it still isn’t – but we’re out the other side of that cancer fight.  For the two moms mentioned above?  My heart aches for theirs as they mourn the loss of their beautiful children.

I couldn’t help myself this weekend, I’ve been thinking about the what if and if only thoughts that have plagued me.

I wondered about Gianmarco’s mom and Julianna’s mom and I know that these thoughts hound them too and I prayed for peace.

After thirteen years of beating on myself (logic says not to, but emotion often doesn’t agree), I heard something different yesterday.

Several doctors told me (all through the three and a half years of treatment) that if I had brought Andrew in earlier, they would have said the same thing I did.  “Oh, your family has had the flu?  Get this boy some juice and let’s deal with the anemia brought on by all the throwing up.  He’s a healthy kid, he’ll be fine.”

Suddenly I actually HEARD that.  As that memory popped into my head, so did the distinct realization that had I taken Andrew into the doctor earlier, that doctor would have told me the above lines.  After which, I would have gone home and proceeded to treat my boy as I was: juice, water, rest, anti-nausea medication and lots of cuddles.  I would not have gone in again very soon – not wanting to over-react to throwing up, paleness, and listlessness.

What if I had gone in earlier to a doctor, like I’ve been kicking myself for not doing?

I would be, right now, so ANGRY at that doctor for not catching the leukemia.  They all assured me it was acute and extremely fast and hard to predict until it was almost too late.

Immediately my what if and if only mantra that I’ve clung to for years changed tune.  First, catching leukemia early doesn’t mean you don’t have leukemia.  Second, What if my waiting saved his life because he was diagnosed and received help just barely in time.  Literally one day later and he might not have made it.

Oh.my.word.

If I had gone in earlier, I might have gone in the second time too late.

The Bible tells us that to EVERYTHING there is a season.  Not my timetable – His.  God says that He’s got the whole world in His hands.  Not mine – His.  Jesus said that He holds the keys to the grave.  Not my keys – His.

I know that.  Logically.  But I too often forget and try to place things on my own shoulders that are designed for Jesus to carry for me.

Caregivers, moms and dads, loved ones – let go of those what if and if only moments.  We can’t go back and change them anyway, and maybe things worked the way they were supposed to in spite of our limited understanding.  Our lives don’t always feel good (please keep Gianmarco and Julianna’s families in your prayers) but God ALWAYS has our best interest in His plans.

What if we let Him keep control?

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Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

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The Cost of Caregiving: Losing Your Place

placeCaregivers Lose Their Place

When Pedro received a non-Hodgkin’s Lymphoma diagnosis in the Spring of 2002, I had no idea that I’d joined a community that had no place to call home. Hundreds of thousands of family caregivers—from teenagers to octogenarians—belong to the community, but we often feel as if we don’t fit in.place

In the hospital, we don’t speak the vocabulary that the medical professionals sling around as if we understand. At church, we become “So-and-so’s unfortunate mother/father/wife/husband/sister/brother/child.” People stop asking us how our loved one fairs, because, well, who wants to hear bad news all the time?

Some caregivers give up their place and their jobs to move home to take care of aging parents. Others relocate their family or add extra travel to their already busy lives.

Worst of all, we focus all of our energy on the one we care for—forgetting that we must take care of ourselves first, or we will have nothing left to give.

A Place for Caregivers

Whether you currently care for someone, or consider yourself a ‘recovering caregiver,’ this place is for you! We’d like to invite you to poke around the blog and see if any of the stories resonate with you. Even though caregiving feels lonely, you are NOT alone.

If you prefer a more interactive community, join us on Facebook at our secret Blessed (but Stressed) caregiver’s group. The community is small right now, but we’d like to create a space for current and recovering caregivers to support each other.

If you know a #caregiver that could use some #community, send them our way! Click To Tweet

If you’re not a caregiver, you might know one who would enjoy the community—send them our way! Together, we can share our stories and learn how to take care of ourselves so that we can better serve the ones we love.

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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The Tricky Part of Psalm 91

How Caregivers Can Apply the Promises

trickyGetting to the Tricky Part of Psalm 91

In the final part of this series on Psalm 91 and the caregiver, we arrive at the tricky part of the psalm. Why do I call it tricky? Well, a simple perusal might cause someone to say, “Hey, I believe in God but bad stuff happens to me. How can I really believe in God?” It’s all about the context. The author of this psalm wrote it for a specific reason and to a specific audience (some scholars believe King David was the intended audience). Nevertheless, we can take the principles of the psalm and apply them to our own lives.

First, the Condition

Verse nine starts with a condition.

9 If you say, “The Lord is my refuge,”
and you make the Most High your dwelling,

In other words, we have to do two things. We must claim God as our refuge and we must make the Most High our dwelling. But what exactly does that mean?

The first condition means that we have to acknowledge a higher power (and we won’t find it in ourselves or another person). We have to choose to let God do what he wants to provide refuge, or recourse for our difficulties, for us.
And once we make that choice, we have to continue to make the choice to let God handle things. If we don’t commit over and over again, then we fail to ‘make the Most High our dwelling.’

Next, the Promises

10 no harm will overtake you,
no disaster will come near your tent.

Verse ten sounds wonderful, doesn’t it? Harm will not overtake us—that’s another way of saying ‘overwhelm.’ So, harm might accost us, but when we take refuge in God and dwell in him, it won’t drown us.

I have a different take on disaster than some people might. The dictionary defines ‘disaster’ as “complete or terrible failure.” So even though bad things have happened to me and to the ones I love, I can say with assurance that God has kept disaster at bay.

11 For he will command his angels concerning you
to guard you in all your ways;
12 they will lift you up in their hands,
so that you will not strike your foot against a stone.
13 You will tread on the lion and the cobra;
you will trample the great lion and the serpent.

I love this part of the promise—God will surround us with the kind of protection that he knows we need the most. Back in David’s day, he had to worry about things like lions, cobras, and stubbing his sandaled feet on sharp rocks. Or maybe those three things represent petty annoyances, powerful people, and the devil.

At different times in our lives, any one of the three could overwhelm us—and God has instructed his angels to protect us from whatever will weaken our faith.

God has instructed his angels to protect us from whatever will weaken our #faith. Click To Tweet

More Conditions and Promises

trickyThe psalm ends with two more conditions—we must love the Lord, and we must acknowledge his name. If we do that, God will answer us when we call on him, he will walk with us through trouble, and he’ll deliver us in an honorable way. In addition, he’ll satisfy us with a long life—because salvation means no matter how soon we leave our mortal bodies, we’ll still have heaven.

14 “Because he loves me,” says the Lord, “I will rescue him;
I will protect him, for he acknowledges my name.
15 He will call on me, and I will answer him;
I will be with him in trouble,
I will deliver him and honor him.
16 With long life I will satisfy him
and show him my salvation.”

I guess there’s nothing really tricky about the Bible. But we do need to study it, the context in which it was written, and ask the Holy Spirit to help us apply the principles to our lives today.

Takeaways for Caregivers:

1. We have to do four things: claim God as our refuge, dwell in him, love God, and acknowledge his name.
2. God desires for us to trust him and let him work out our problems (what a relief!).
3. Worry and stress can take years off your life. Let God handle the seemingly insurmountable problems.

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Take Care of Yourself: Six Ways to Avoid Caregiver Burnout

While still caring for your patient

In the middle of taking care of our loved one, we often don’t take care of ourselves.

Cancer Caregiving 101: Take Care of Yourself and Prevent Caregiver Burnout

When others offer to entertain your loved one, take time to go for a walk or relax by yourself–DON’T do housework!

“Now you must realize,” the doctor straightened the papers into the already thick folder as he finished summarizing the diagnosis, treatment protocol and prognosis, “with a best-case scenario, we’re in for a long haul. You two must take care of yourselves, too. This is not easy on parents, either, and you can’t let yourselves get run down.”

The nurse bustled into the room, loaded with scary looking objects which she unloaded in the room’s small bathroom. “So, you cannot touch this hat in the toilet, we can’t have his samples contaminated. Also, be sure you don’t let any urine touch you when you help your little guy go – because it will burn a hole in your skin.” There followed some more directions of what not to touch in the room and what not to do and what I needed to help Andrew with and what I needed to remember. As she breezed back out the door, having set these little traps all over the room, she paused in the doorway, “Mrs. Bovee, you need to remember to take care of yourself through this…this will be a long, tough road.”

After a two-week stint in the hospital with a feverish and neutropenic boy, I was home, frantically trying to

recuperate the family from separation, restore the house from chaos and prevent the laundry piles from taking over the world. As I sorted and started a load, a neighbor followed me from washing machine to dryer, not helping, but faithfully entreating me that I needed to “take care of yourself! Carol, you are just working too hard! You need to let go!”

I stumbled along beside the gurney as we returned from the spinal tap, wiping my tired eyes and unsuccessfully hiding a yawn behind my hand. The nurse, pushing a dopey Andrew, smiled sympathetically at me. “Carol, I hope you’re taking care of yourself. We see so many parents pushing so hard. You’ve got to take time out. Don’t forget you’ll need to recharge your batteries too.”

We received that advice throughout Andrew’s treatment. “You parents need to take care of yourselves too.” “Remember that you can help your boy best if you’re taking care of yourself too.” “Take some time for you!”

Great advice.
Perfect!
Ideal.
Laudable recommendations from caring souls.

“Don’t lift that boy – he’s too heavy for your back!” – OK, but he’s four, sick to his stomach, neutropenic, tired…I’m supposed to tell him he’s on his own?

“Don’t worry about the housework, take care of yourself.” – OK, but I cannot have a sick boy around dirt…is someone going to clean it for me?

“Make sure you eat regular and healthy meals!” – Ok. But the procedures are always during breakfast time, recuperation through lunch, driving through supper and falling into bed. When was I supposed to eat? And what in the world is a ‘regular time’?

The job needs to be kept, the house needs to be clean, the kids need to be loved, the meals need to be fixed, the sick one needs to be cared for – when, exactly, was I supposed to “take care of me”?

Truly, all I could concentrate on, throughout my son’s illness, was him! It wasn’t until it was too late, and I was in trouble, that I realized what I had done to myself. So the question I hear, from so many caregivers, is this:

HOW do I take care of myself, when my primary job is to take care of him/her? (tweet this)
I’m probably the last person to take advice from, as I did not necessarily do it right. On the other hand, maybe I’m a good person to listen to—I can honestly look back over my journey and say that there are things I would do no differently even if I could have known exactly what I know now. I would still give 150% to my child and my family.

However, there are some things that I wish I could go back and change, or do better:

1. Delegate the little things as much as you can: you cannot delegate the worry, no one else can carry your pain and your patient might not want you to delegate personal care. So delegate the windows being washed, the lawn getting mown, handing someone your money and your shopping list, etc. Delegate as much as you can. Sometimes that means swallowing your pride, but it might help you avoid swallowing medication later! ☺

2. Make lists. If someone offers to help – have a list ready of things they might be able to help with. If you have nothing you can think of right that moment (I remember someone offering to help while we were waiting for Andrew to come out of a procedure – nice, but not where my brain was right that moment), then write their offer down and get contact information and ask if you could call on them sometimes.

3. Ask. Don’t be afraid to call your pastor or a neighbor or a co-worker and let him/her know of a need. A lot of people think we caregivers have it all under control and don’t think to even ask if there’s a need. But many would help if they knew of a need. One person said to me, “It’s OK to allow someone else to have the blessing of helping you.” I had never thought about it that way before, and that was releasing to me.

4. Be willing to let go: sometimes, we caregivers think we need to be superman and wonder woman all rolled into one. We can’t. Or maybe, like in my case, I could for a while, but sustaining that after a while becomes impossible. Take the help that’s offered. And also let go of how that help is done. It might not measure up to your standards – but it will probably work!

5. Search out quiet moments. The days of caregiving are often busy and hectic, and when they are quiet, they can be scary. Grab moments of quiet to journal or to process some of what’s been going on. Take those moments to evaluate how you’re doing and how you’re feeling. Is it time to get some help? Do you need to find someone to talk to?

6. Expect less of yourself. This one has nothing to do with others’ helping, and everything to do with you deciding that it might be OK if you don’t get things done. Maybe you need to say no to some things you used to do. A caregiver has to re-examine priorities; and in that re-examination, one of those priorities has to be you. Your sanity, your health, your ability to keep on going.

It IS possible to take care of yourself, even while taking care of your loved one!… Click To Tweet

What ways have you found to take care of yourself?

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Can Caregivers Find Comfort in Psalm 91?

comfortIt’s been a few weeks since I last wrote about Psalm 91 and the caregiver. In the intervening time, I’ve run a marathon, taken a marathon car trip (from Holbrook, to San Diego, to Holbrook, and then Tulsa, and finally to Palmer, Alaska). I have also taken on a different kind of caregiver role—this time as granny to my sweet grandson and helper to my daughter and son-in-law.

In the first two installments, I shared what I’ve learned about God’s protection from the evil one’s lies and attempts to draw us into the pit of despair. I’ve come to understand that Psalm 91 doesn’t promise to keep us from bad things—it promises to protect us from our human reaction to bad things.

Psalm 91 promises to protect us from our human, knee-jerk reaction to bad things. Click To Tweet

What About Those Thousands?

A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.

You will only observe with your eyes
and see the punishment of the wicked.

The ‘it’ in the third line refers to the plague in verse 6. God has me covered in mind-protection—even if I get sick, or the ones I love go through disasters. All around me, those who reject God will stumble and fall (and I will join them if I keep my eyes focused on myself and not on God).

The world has plenty of examples of what happens when an individual rejects God’s sovereignty—people suffer from the consequences of their sinful actions all the time. But because I chose to accept God’s protection and right to rule my life, I’d like to think that I make better choices in the here and now and therefore don’t have to suffer so many consequences.

Don’t get me wrong. I don’t stand above anyone gloating and puffing myself up (God never asks us to do that). Practicing God’s sovereignty in my life takes a constant turning of my self over to God and a humble spirit (I tend to think I know it all).

But Do We Get to Skip the Bad Stuff?

God doesn't promise us a charmed life, he promises us comfort FOR life. http://wp.me/p2UZoK-1GdI have seen Christians go through difficult times and react one of two ways. They might believe that God wants to punish them for something that they did. When Pedro received his cancer diagnosis, a local pastor insinuated that if Pedro just confessed, the cancer would go away. God doesn’t work that way (and the pastor’s words brought no comfort).

The other reaction involves anger at God for not keeping his word because in Psalm 91 it appears that God promises a ‘Get out of Trials Free Card.’ I don’t think that God promises that we get to skip the trials of life.

After all, Jesus said in John 16:33

I have told you all this so that you may have peace in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world.”

I Still Get Comfort from Psalm 91

I believe that when we study the Bible, we should not just read the words, but that we should look for the context and the application as well. In the Amplified version, a footnote for Psalm 91 refers the reader to Exodus 15:26, and states that the “wonderful promises of this chapter are dependent upon one’s meeting the conditions stated in these first two verses.”

Exodus and Psalm 91, both written by Old Testament authors, were written for specific people during specific circumstances. The words of Exodus record God’s instructions for the Children of Israel (and it’s no coincidence that they are called ‘children’). The NIV translation implies in a footnote that the ‘he’ refers to the king. Therefore, we have some idea as to the specific audience.

The application comes when we realize two things as well. First, we need to dwell with God and give control to him. Second, we serve a powerful God who has proved faithful in the past and will continue to provide for us in the future. Once again, we don’t get to choose what that looks like.

I find comfort in the fact that my powerful and mighty God can prevent me from harm—if the situation calls for that. If harm befalls me, well, I know that God loves me and will help me through.

Applications for Caregivers

  1. Find comfort in reading about the power of God.
  2. Don’t blame God when disaster befalls you—we live in a sinful world.
  3. God doesn’t make people sick in order to punish them (punishment comes at the final judgment—things that happen now just happen because of sin).

Are there any promises in the Bible that make YOU mad?

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Unconditional Love – Trisomy 13

A Mother's Letter of Love to her Unborn Child

When the joy of pregnancy becomes mixed with a Trisomy 13 diagnosis for your unborn child, a mother’s love doesn’t quit.  It grows stronger each day that little one grows inside, even when she knows that his birth might also mean his end.  I was blessed to teach Hannah, her senior year in high school, and we’ve kept in touch over the years.  When I saw this letter, I knew it needed to be shared on a site dedicated to caregiving of all kinds.  May you be blessed by this mom’s beautiful love for her baby:

One Mommy’s letter of love to her unborn baby with Trisomy 13

Dear Jedediah,

I love you. I am so thankful you are mine.

The doctors say you have a severe chromosome abnormality called Trisomy 13. They say you aren’t going to live.

But you are living now.

And every moment with you is precious.

So kick me, punch me, roll, and turn. Remind me that you are alive right now. Remind me how lucky I am to be your mommy.

You are so precious. You are so loved.

Your name, Jedediah, means “Beloved of the Lord.” Every time I hear your name I will be reminded that God loves you even more than I ever could. It is comforting to think of how much God loves you.

There are so many people who love you too, Jedediah. Daddy and I love you. Your family and friends love you. You have many friends who are praying for you and hope to meet you someday. I hope that somehow, in some way, you can know that we love you.

I can’t wait to hold you in my arms, yet at the same time I dread that day approaching because I know what it will likely mean.

So take your time dear one. If you are comfortable in mommy’s tummy, stay for a while. And kick me, punch me, roll, and turn.

And let me love you.

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Read This Before You Sign Up to Race for a Cause

Is it worth it to run a marathon for a cause?

causeRun (or Bike, or Hike, or Walk) for a Cause

Back in January I decided that if I wanted to actually run a marathon in my fiftieth year, I would need accountability. For this reason, I joined the Leukemia and Lymphoma Society’s (LLS) Team in Training (TNT) program. The LLS marries endurance sports with charity using the concept from elementary school participants finding sponsors in order to raise money for a cause.

In the case of the LLS, the cause involves research for blood cancers. You can find out more information on their website about the strides in blood cancer treatment and how they use the monies.

Fourteen years ago, Pedro benefitted from that research and development when he had non-Hodgkin’s Lymphoma, which went into remission and then quickly relapsed in a worse form (the lymphoma cells entered his central nervous system—we joke about his cancer going to his head).

The LLS assists the TNT members by providing local volunteer coaches and support in fundraising. ‘Local’ is a relative term, though. I live in a very small community and my local coach and the rest of my team members lived in Phoenix—a three-hour drive from home.

The Nitty Gritty of What Happens Next

When participants register, they can make different commitments—the larger commitments include a shared hotel room (with another TNT participant). Since Pedro wanted to go with me, I decided to pay for my own hotel room.

I spent perhaps ten hours working on fundraising, and through the generosity of friends and family I raised my commitment amount ($1,200) before the deadline (typically a week before the event takes place). TNT made it easy by providing a fundraising page online and mailing out letters for me (they provided the stamped envelopes, I wrote the letter and addressed the envelopes).

Training for the marathon took about five months—when I started, the longest distance I had run in the previous six months was about five miles. I used the Nike Run Club app on my phone as my primary trainer, and did most of my running on a treadmill until the weather warmed up.A perk of running a marathon--the plethora of quirky signs along the route. http://wp.me/p2UZoK-1G7

I ran a half marathon in February as part of my training program (those long runs get a little boring). But by May, I felt the need for company during the long runs, so I drove down to Phoenix for two of the team trainings. I enjoyed meeting some of my other teammates and the coach—and the change of scenery made the run interesting.

When the really long training runs came along, I often questioned my sanity in choosing to run a marathon. After all, I don’t consider myself particularly athletic. I have enthusiasm about some activities, but I don’t have any athletic talent or coordination—I can’t walk upstairs and drink water at the same time.

When the training blues hit, I knew that I needed to power through because people had already donated money and I couldn’t back out.

TNT Race Weekend

When the weekend finally arrived, Pedro and I drove to San Diego (with a stop along the way for him to ride his favorite mountain bike trail in California).

After checking in to our hotel, I picked up my race packet and then we spent several hours visiting friends in the area. The LLS holds a gala the night before the race at the sponsoring hotel. Team Arizona sat together, and we enjoyed chatting about our training and race-day strategies during the meal. The event emcee introduced the top fundraisers for the race (one of them, a 94-year-old woman, had raised an incredible amount of money).

Several fundraisers and survivors shared their stories of why they raise money and run for the cause. Their inspirational stories dispelled any doubts I had about my sanity. Joining together with other people to raise money for a cause forms a community that allows each member to do more than they could do on their own.

The organizers invited the guests to show up at mile 8 for a free t-shirt and a chance to join the TNT cheering section. I thought it was a great way to include family members. They also provided cheer signs, cow bells and clappers.

Sunday morning the team met in the hotel lobby at an absurdly early hour (4:45), so that we could walk to the shuttle bus together and ride to the race start. The coaches warned us about the port-a-potty lines (get in line as soon as you get off the shuttle), and told us where to leave our race bags.

Racing for the Cause

In order to provide a safe and organized start, the San Diego Rock-n-Roll Marathon has staging areas for participants based on the participant’s expected finish time. DJs played music to keep everyone entertained during the wait, and a new wave of runners started about every two minutes.

It took me about 35 minutes from the official start of the race to actually cross the starting line. During that time, other TNT participants came by to say hello and encourage me—not that I knew any of them. But, since we all wore the same purple shirts with our local team names emblazoned on the back, we could easily spot TNT members.Should you run for a cause? http://wp.me/p2UZoK-1G7

Once we started running, TNT coaches could easily identify us as well, and at least three times along the course a coach joined me to chat and encourage me through a difficult stretch. As other TNT members passed me, they would shout an encouraging, “Go, Team!” Bystanders who knew about TNT would do the same.

When I finished the race, I checked in at the TNT booth to let them know I’d finished. Unfortunately, Pedro and I had to hurry back home. Otherwise, it would have been fun to hang out with my new friends.

Would I Do it again?

Yes! Ok, maybe I won’t go the full marathon distance again. But I could sign up for a TNT bike ride, half-marathon, or other endurance event—anyone want to do a triathlon? Just kidding (maybe). The combination of team support, accountability from donors, and camaraderie made my marathon experience worth the effort.

If I lived in a bigger city, I could have joined in some group fundraising projects as well. Team Arizona members hosted a luau and a silent auction, but I lived too far away to participate. The weekly coaching emails from the coach and the offers of fundraising assistance from the TNT office helped me a lot.

So, if you have thought about signing up to support a cause on your next (or first) endurance event, I would highly recommend that you give it a try.

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Autopilot – the mode of operation for long-term caregivers

And the God who gets us through

In times of trial, when it feels like we’re flying alone – God provides better than “autopilot” and becomes the pilot of our journey

Autopilot becomes the way we handle things flung at us as new caregivers.  Actually, who am I kidding?  It didn’t get easier just because it became longer – in fact, the longer I lived on emergency-ready, life-and-death mode, the grayer my world became.  My son was four-years-0ld when we started his cancer journey, and I was 39.  When we finished chemotherapy, he was 7 1/2  and I was 93.  My always-learning brain had turned to mush (Anita calls it chemo brain by proxy) and I literally saw through a gray haze. I functioned on autopilot – but it worked, because of Who my pilot is:  this is a poem I wrote shortly after finishing chemo and realizing I was in deep-struggle-mode.

I’m on autopilot

Feet float

From place to place

Unaware of where they’re going

Lost from where they’ve been

 

Eyes drift

Across words on a page

Reading and rereading a passage

Unable to soak it in

 

Ears buzz

Around conversations flying by

Desperately trying to pick out information

Confused by threads of thought

 

Mouth stumbles

Over pieces of a conversation

Tripping over thoughts refusing to be expressed

Incapable of coherence

 

Hands flutter

From task to task

Forgetting how to accomplish anything outside of an emergency

Helpless to proceed

 

I’m on autopilot again Lord,

Lost,

drifting,

buzzing,

stumbling,

fluttering

Autopilot

The only way I can do anything at all

Is to have You

Be my pilot

Caregiver coping - #autopilot. Let God be your pilot! #caregiving Click To Tweet

Put God in the pilot seat!

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Shadowing in Alzheimer’s: Two Sides of a Coin

National Alzheimer's Disease Awareness Month

Alzheimer's
The Problem With Alzheimer’s

When a beloved family member receives an Alzheimer’s diagnosis, long-term care is a big issue in the United States. This is especially true when the recipients and their family members have to contend with a condition as devastating as Alzheimer’s disease. Although caregivers have unlimited access to resources, such as long-term care consumer guides and various studies, no one can truly be prepared for the toll that Alzheimer’s disease and other types of dementia can take.

Currently, more than five million Americans are living with Alzheimer’s. And while this number may be already considered too many, research shows that the number could rise to 16 million by 2050. It is the sixth leading cause of death with 1 out of 3 seniors reported to die from the disease. In fact, it kills more than breast cancer and prostate cancer combined.

Alzheimer’s disease gets worse over time, and it affects the family caregivers and the diagnosed alike. Relationships may change, and roles may be reversed. It can take a lot from both sides, and truthfully, it often does. After all, the symptoms and impacts vary that it is easy for anyone to be overwhelmed by the whole situation. One such part of Alzheimer’s is Shadowing.

Shadowing in Alzheimer’s is when the people with the disease constantly trail their caregivers. This is when they mimic their caregivers, go wherever the caregivers go, or become very anxious when their caregivers are not in sight.

From the Perspective of the Person with Alzheimer’s Disease

Often the root of shadowing is confusion and fear. Individuals with Alzheimer’s disease or other types of dementia are going through drastic changes. What used to be familiar to them becomes completely alien. And when they cannot make sense out of their surroundings, it can be quite terrifying. They may easily become fearful and anxious about their environment. And to feel safe and calm themselves, they tend to follow their primary caregivers around.

They become their caregiver’s perpetual shadow. Many relate this to the relationship of a small child and a parent. The child is completely dependent on the parent, and the latter’s presence enforces a sense of security.

Through the Eyes of the CaregiverCaring for someone with Alzheimer's can be discouraging and frustrating--especially when you need a break. Try these two simple solutions to help your loved one through transition times.

Caregiving can take its toll on an individual in various ways. It can affect a person physically, emotionally, financially, and mentally, which is why taking breaks are often a must. However, for caregivers to individuals with Alzheimer’s, taking time off may be difficult to achieve. When their care recipients are shadowing them constantly, it is easy to feel overwhelmed and frustrated. And when this happens, their feelings of guilt can multiply.

It is important to note that when these feelings arise, caregivers must remember that their feelings are valid. They can feel frustrated or overwhelmed by the whole scenario. They must acknowledge their limitations and take active measures to address the situation.

#Shadowing in Alzheimer's is a manifestation of fear and anxiety. #caregivers #alzheimers Click To TweetBear in mind that shadowing is a manifestation of fear and anxiety. The root of these two emotions must be the one that caregivers ought to address and not the behavior itself. Caregivers can encourage feelings of safety and security through activities that work best for the specific individual.

They could record their own voice conveying reassuring messages for playback to the patient during the caregiver’s absence. In addition, caregivers can identify therapeutic music that their loved one with Alzheimer’s enjoys listening to. No two cases are the same, so the caregivers must be creative in finding a way to ease the stress of their loved ones with Alzheimer’s disease.

Guest Bio

Samantha Stein is an online content manager for ALTCP.org. Her works focus on key information on long-term care insurance, financial planning, elder care, and retirement. In line with the organization’s goal, Samantha’s work highlights the importance of having a good long-term care plan, which includes requesting a long-term care insurance quote to securing comprehensive coverage.

 

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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Are You Willing to Let God be Sovereign in the Situation?

A Caregiver Looks at Psalm 91: Part II

sovereign

A Caregiver Looks at Psalm 91: Part II

In part one of this series we looked at the first four verses of Psalm 91—a well-loved Psalm that I have a problem with. Join me as I work through the next two verses and try to figure out what they mean for the caregiver.

We left off at verse four, with the understanding that if we stay close to God, he will shield us from the lies of the devil. During my caregiving journeys, I often found myself worn down, worn out, and unable to cope in private. I thought I needed to take on the care of my very ill husband and shoulder all the other daily burdens as well. I forgot that God is sovereign.

Coping in public seems like a given. Caregivers don’t want to draw attention to themselves and their needs because they seem petty (even if they aren’t) in light of the bigger needs of the one they care for.

#Caregivers don't want to draw attention to themselves and their needs because they seem petty… Click To Tweet

What Does Fear Really Mean?

5 You will not fear the terror of night,
nor the arrow that flies by day,

In verse five, God doesn’t promise that terrors won’t lurk. He promises that we won’t FEAR them. The dictionary tells us that ‘fear’ as a noun is “an unpleasant often strong emotion caused by anticipation or awareness of danger.” As a verb, ‘fear’ is “to be afraid of: expect with alarm.”

In other words, when we trust in God and stay close to him, we don’t let the devil’s suggestions of the worst-case scenario take over our imaginations and cause us extra agony.

During my first caregiver journey, I often let worries about the future drag me down. In those quiet moments late at night, the lies of the evil one nibbled and scampered inside my head like rodents in the walls. I had to make a conscious effort to allow God’s light into my mind to chase away the mice of despair.

Gradually, I learned that I didn’t fear the terrors of night, nor the arrows of circumstance and progression of disease that assaulted me by day. This knowledge armed me for my second caregiver journey.

The devil loves to point out our shortcomings and failures through the behaviors and actions of… Click To Tweet

What’s With Pestilence and Plagues?

6 nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.

My second caregiver journey provided the perfect opportunity for falling for the devil’s lines: “If only you would have been a better parent.” and “She’s acting like this because you failed.”Life is short. Pray hard. A caregiver looks at Psalm 91 http://wp.me/p2UZoK-1FY

After all, when one’s offspring implodes on a public forum (Facebook and YouTube), pretty much the entire known world knows. Our children’s actions highlight all that we did (or didn’t) do as parents. All too often we measure ourselves by our children’s actions—even if our children have reached adulthood.

I like to think that the ‘pestilence’ and ‘plague’ that the psalmist uses here have more to do with those lies of the evil one. It would have been easy (and natural) for me to roll up into a ball of dejected depression as I watched Sarah make a series of horrible choices.

I could have rejected God’s sovereignty because he didn’t provide protection for Sarah on my terms. He COULD have saved her from her bad choices and helped us figure out her diagnosis much earlier. But he didn’t.

I had a choice—either accept God as the sovereign in the situation and daily affirm his right to allow things that I didn’t like to happen, or reject God.

We have a choice: accept God as sovereign & affirm his right to allow things that we don't… Click To Tweet

Choosing God’s sovereignty kept me sane. Sure, I spent a lot of time in tears and on my knees. My relationship with God got stronger as I relied on him to help me avoid the pestilence and plague of the devil’s recriminations.

The devil keeps plugging away, trying to undermine our relationship with God. We have a choice—call out to God in the darkest night or in the light of day, or let the devil sink us with his lies.

Caregiver Applications

1. With God as our sovereign, we don’t have to fear the terrors.
2. We don’t need to work out the worst-case scenarios and stew about them.
3. The devil likes to jab at our weak spots and make us blame ourselves for other people’s actions. Just say, “No!”

Inspire Me Monday Instructions

What’s your inspirational story? Link up below, and don’t forget the 1-2-3s of building community:

1. Link up your favorite posts from last week!

2. Visit TWO other contributors (especially the person who linked up right before you) and leave an encouraging comment.

3. Spread the cheer THREE ways! Tweet something from a post you read, share a post on your Facebook page, stumble upon it, pin it or whatever social media outlet you prefer—just do it!

Don’t forget to visit the other #InspireMeMonday host site: www.anitaojeda.com

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