Friday, March 11, 2011

Not What I Had in Mind

When my mother was diagnosed with Alzheimer's disease almost exactly seven years ago, my first response was an overwhelming sense of empathetic love for her.  I spent a lot of time researching the latest treatments for dementia.  I gladly adjusted my schedule to accommodate her escalating need for my presence.  I treated her with teary-eyed solicitousness.  No need of hers was too inconsequential to warrant my attention and concern.  I gave no thought for myself. 

That was a

We are told that Alzheimer's is a terminal disease and also that it is a long goodbye. As caregivers, we don't fully understand either of those concepts when we are at the beginning of our journey through Alzheimer's. The shock of the diagnosis itself along with  forced acceptance of the fact that a loved one is going to require escalating levels of care is overwhelming.  However, once the ho hum day-to-day routine of taking care of the loved one is established, it is inevitable that at some point a thought such as the following occurs: 

"This is not what I had in mind!" 

As a Christian I've tried to squelch such thoughts.  Although taking care of my mother for seven years and counting is certainly not what I'd have planned for myself, it is obviously the Lord's will for me.  There came a point at which I had to choose to give up my ineffective faunching at the bit of my circumstances. This was not an entirely selfless decision; I was uncomfortable, and I was making those around me uncomfortable.  There is peace in submission, not to the circumstances themselves, but to the Lord who authored the circumstances.  Being able to trust that God is in control is far superior to waking up at 3:00 a.m., trembling with fear of what is going to happen during the next few years.

Unfortunately, this exchange of fear for trust has not been a one time transaction for me.  I am sorry to say that even when I am doing my best to abide in the Lord, I am prone to fear.  It's not for nothing that Isaiah 41:10 is my life verse:  "So do not fear for I am with you, do not be dismayed, for I am your God.  I will strengthen you and help you, I will uphold you with my righteous right hand." 

Another favorite is "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways submit to him, and he will make your path straight"  (Proverbs 3:5-6 NIV 2011). 

If, as a caregiver, you are sometimes overwhelmed by the thought that "This is not how I thought these years of my life would be spent," I pray you can find peace and comfort in the fact of the Lord's authorship of your caregiving journey.

 Scripture: "They submitted Sarah, who obeyed...You are her daughters if you do what is right and do not give way to fear (italics mine)" 1 Peter 3:5b-7.

"Not that I have already obtained all this, or have already arrived at my goal, but I press on to take hold of that for which Christ Jesus took hold of me" (Philippians 3:12).  


  1. Even though I don't have a loved one with Alzheimer's, I am a caregiver to two others and I could relate to what you wrote. I, too, have fought the same thoughts. I, too, have appreciated more and more knowing that God is sovereign and first cause. As someone once said.. the sovereignty of God is like a pillow to rest my soul.

  2. That quote is a keeper, thank you SO much for sharing it. I've found it attributed to George Spurgeon several places online as follows: "When you go through a trial, the sovereignty of God is the pillow upon which you lay your head."

  3. Good morning Linda..... Oh boy, your post touched my heart and hit home for me.
    When David retired in 2003, never in my wildest dreams would I have thought that 2 years later I'd be his care taker, nope....that wasn't what I had in mind.

    There are days when I feel I feel so dismayed, sad and frustrated, but thank God for new days and life seems better.

    The scriptures you've mentioned are some of my favorite and such a comfort.

  4. Wonderful post, Linda, and quote, Living on Less.

    Recently I have seen the value of surrender of worry to His control, His sovereignty, while keeping the obedience of concern for our loved ones. Celebrate the moment. "What if?" and "what will be in the "future" is soooo nonproductive.


  5. Ahh.. I thought it was the puritans. Love Spurgeon.

    Hubby and I have been listening to a sermon series on Suffering from the book of Job. The pastor quoted it and so it's been on my mind.

    Here is the link to the page. It's called, The Gospel of Suffering. I think there are 12 sermons in the series so you have to scroll to find them all. They were SO encouraging to my husband (the sufferer) and me (the caregiver).

  6. Thank you for this beautiful post with scripture references.

    Forgiving ourselves can be one of the most challenging parts of caregiving. When weary it's hard to think clearly.

    While my mother did not have Alzheimers, we also had a long sometimes painful goodbye. As her caregiver, I regularly soaked her feet to trim her toenails. While gently drying them I often felt His Presence comforting my heart. It never ceased to amaze me how in those quiet times I found His Peace.

  7. I just found your blog and haven't read much yet, but wanted to ask a question. I am a seminary student who's grandmother was just diagnosed with Alzheimer's. I am interested in creating some sort of ritual or service for those who have been diagnosed and their families. Do you have any input as to what sort of ritual or service would have been meaningful at the onset of the long journey?

  8. Derek, for me, a service that focuses on praise and worship would be appropriate, followed by a message affirming the sovereignty of God over every circumstance of our lives. In the comment section on this post, you'll note that "Living on Less Money" provided a wonderful George Spurgeon quote: "When you go through a trial, the sovereignty of God is the pillow upon which you lay your head." God is in our past, our present, and our future; He is love, and He has made provision for us; we can trust Him. Remind them that although Alzheimer's can rob memories, it does not take away the ability to give and receive love. A nurse who deals with end of life issues with her patients told me that the ability to give and receive love lasts until the end of life. "Faith, hope, and love, these three, but the greatest of these is love!" Faith, hope, and love go with us into eternity, but of these three, it is God's love that brings us the most comfort and strength through our Lord and Savior Jesus Christ. At a time when there is so much fear over what might be lost, focusing on what will cannot be lost is comforting.

  9. I know this is what God wants me to do. But I worry now about after. I don't think I will be able to start over.

  10. To Derek. When my mom just started this long journey We used to say or morning prayings. And evening prayers. And she would resite them with me. To make it easy on her we did The lords prayer in the morning and Now I lay me down to sleep at night. That way she would not be confused with a random prayer. Don't change things up. Keep doing the same church things you always did at the same time and days for as long as you can. This a long term memory and they will be used to it. It is the short term stuff my mom has trouble with. Good luck .

  11. Thanks so much for your help with this. I have been doing some reading and will get a chance to sit down with my grandparents this weekend. I can imagine it will be very hard for Grandma to talk about the uncertainty of the future. I hope to get some input from her about her favorite songs, scriptures, poems, etc. I appreciate the focus on God being God despite other things leaving us. Thanks again.