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Thank you for checking out our website/blog. By journaling and updating this website we will attempt to keep friends and family up to date on what is going on inside our lives. Living with a terminal illness (ALS) and demonstrating how God is working in our lives to bring Him glory during this trial. We appreciate your gracious prayers and support during this season of our lives! We Love You All So Much!

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Monday, March 22, 2010

Feeling kind of down and weary... confessions of a caregiver

It has been a while since our last post. Things have actually been going pretty well. Eric has been doing pretty well and his spirits have been lifted up. We have had a few visitors and have really enjoyed utilizing the Dynavox for communication. It has really helped us out and we use it daily as even I struggle to understand him now. One thing you hear more often then not with ALS is to get things BEFORE you need them because you don't know when you will lose an ability and suddenly be in need. I think we have done well in mostly staying ahead of the disease in this way. God has been good and gracious to us and provided our needs so abundantly. It is so clear when we look back over the span of this disease. It can only be explained by God. There are no coincidences with God.
Sometimes, however, I let the moment suck me in or even worse the uncertain future. We always have rough nights. Last night was justEric is quite uncomfortable most of the night and is unable to sleep continuously for a night. I don't even remember when the last full night sleep was. Each night varies some, but usually consists of getting up 2-3 times every 1-3 hours and each time we are up it is usually for about half an hour. At this point, we both have a hard time falling back to sleep. We have varied the medications for Eric and some help and some do not. It is so frustrating to me that I can't make him comfortable. Last night, I just started crying uncontrollably for a long time. I felt like I was beyond myself and I know that made Eric sad for me too. When I am beyond myself, I can only rely on God and others he puts in our lives to help us. I am trying to focus on some verses to keep me strong as I sometimes feel like I can't do this on my own. Here are some that have encouraged me and I am trying to commit them to memory for when Satan shoots his fiery darts at me and tells me I can't.

Matthew 11:28-30
"Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."

Philippians 4:13
I can do everything through him who gives me strength

Ephesians 3:16-21
I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Isaiah 40:31

but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Psalm 46:1

God is our refuge and strength, an ever-present help in trouble.

I could go on with so many more that come to my mind, but these are a few of my favorites. I have learned to treasure God's word and it's promises for me. I know they are true and that is why I know we can get through each day with His help.
I have read a few books for caregivers or care for the terminally ill. Most of them I skim as I feel they are more geared for taking care of your elderly parents and it is not relative to me. I have found one I can relate some too and that encouraged me called Precious Lord, take my hand by Shellie Beach and the second one she wrote called Ambushed by Grace had a quote I just loved by Robertson McQuilken. It says "Love takes the sting out of duty." This sums it up for me. I made a commitment to Eric and a covanant to God in our wedding vows, "for better,for worse, in sickness and in health, til death do us part." I intend to honor that because I love Eric with all of my heart. I want to encourage all caregivers in whatever role you play as I have walked in your shoes and I know it can be hard. Keep focused on God's promises and not on your opposition. I am reminded again of Joshua and Caleb and their ability to see the promised land and go forward rather than the other 10 who only saw opposition and obstacles ahead of them. Can you imagine what they would have missed out on? I know God has good things in store for me, Eric and all of his children. I already feel better reminding myself of what I already know. When you are in it, some days it's just easy to have a pity party for yourself.
Please pray for Eric for comfort and encouragement in his battle with ALS and for me for strength for each day and a gentle spirit at night. We will be trying some new caregivers at night this week I hope. Please pray that it goes well and we find a suitable fit for care for Eric at night so I can get some sleep one night a week.
Have a good week. Spring is here! ( I think )


Sheila said...

I look forward to your posts so i know more specifically how to pray. Hoping I will get a chance to see you this wk sometime.

Karen said...

Dear Lori,
Your post brought me to tears. I so often have been brought to my own knees of sorrow and then lifted up by that strong hand of God who promises never, never to drop us or give us more than His grace will handle. I hold your precious family close in thought and prayer. Karen

Nicole said...

We pray for your strength and patience. Love, Nicole

trisha said...

Thank you for your post. It got me crying, too, and praying more today. Can you imagine what it is like for those who do not have the hope you have or the firm belief in the promises of God that you are clinging to. Keep sharing your story (the REAL battle that you are facing continually) and bringing God glory. Tony may share some of what you wrote in His lecture tonight because it fits so well with what we are studying this week in John.

LOVE you guys,
Trish and Tony

Clarkers said...

I'm so glad you posted... I was praying and wondering how you guys were doing. Nothing brings more comfort than God's promises. After reading your post it reminded me of this "Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand." Is. 41:10 You are such a great example of looking to God... It's amazing the peace that only he is able to give. I'll be praying for you guys.. God Bless, Leslie

Amy Marschner said...

Dear Lori...

Praying for all of you. So thankful to a wonderful God who promises that He'll be there for us always as He is with you ,Eric and the kids.

Anonymous said...

Praying for you, especially, today Lori. You are an amazing, God-filled example of a woman and wife of faith. Neither you nor Eric know me, but I've checked in on your blog for the last several months and finally wanted to post a comment. Both of you, and your children, are tremendous witnesses of God's love and devotion to his people. Thank you for being examples of His light.

Anonymous said...

I grew up with a daughter of Robertson McQuilken; we still keep in touch. Do you know his story?

Family is FOREVER

Family is FOREVER