Tuesday, March 29, 2011


When I was writing My Mom Has Alzheimer's, I prayed almost constantly for guidance.  I worked hard to accurately record messages of comfort and help as I transitioned into the role of being my mother's caregiver.  Now, seven years later, I am facing the major life change of moving into early retirement after a career of teaching.  For the first time in over twenty years, August of this year will find me at home rather than at the school preparing frantically for the imminent arrival of a group of six-year-olds who need to learn to read.  Additionally, my son and his lovely fiancee have planned a July wedding.  Faced with this dual challenge to my emotional equilibrium, I've been revisitng the truths God has given me about making successful life transitions. 

As my son prepares to embark upon his new life, I remember my feelings when his older sister left for college: 
"I came to recognize that if my daughter had difficulties beyond how to cook a pot roast or what cleaner to use on the bathtub, that I was no longer the key designed for that particular lock. She had outgrown me. All mentor/child relationships are temporary—the child grows up. The fact that my daughter no longer required me for sustenance was not a reason for grief, but rather, an indication that I had done my job well. Because of my close emotional tie to her, this was also a gift and a blessing. I was free of my responsibility for her; free to enjoy her" (My Mom Has Alzheimer's: Inspiration and Help for Caregivers, p. 27). 
I wrote the following quote in reference to my changing relationship with Mom, but it holds true for the change I am facing in my relationship with my son as he honors the commitment he has made to his beloved wife-to-be:
 "It is a difficult transition, made easier by the recognition that although the rules of the relationship change, love remains" (introduction, p.xiv). 
And finally, a reminder of the fact that change is a normal part of life:  
"Life is full of transitions, and most of us don’t like this fact. We would prefer to attain a place of comfort and safety and clutch it to our hearts to keep, but we are not allowed to do so. Just as ocean tides ebb and flow, our lives are always in motion" (p.28). 
 Nothing unusual is happening to me.  Children grow up and get married, people retire, and loved ones get Alzheimer's disease.   However, I learned awhile back that simply because many people undergo the same sort of sorrows, that this does not diminish the caliber of compassion our Heavenly Father holds for any beloved one of us.  I know the Lord weeps with me, but I also know He has promised me a future and a hope.  It will be interesting to see what the future holds as I prepare to turn the next page in my life's story. 

Insight:  Anchor your heart to the Lord. Although everything around you may be in a state of upheaval, God does not change.

Scripture:  "I, the Lord, do not change" (Malachi 3:6)." 

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 themselves...like 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).  

Friday, March 4, 2011

Dark Thoughts

A lady from Germany reads my blog occasionally.  Through one of her comments on my posts, I followed her link back to her website.  It was written in German!  I noticed my name and the title of my blog within a string of otherwise incomprehensible-to-me words, and so I copied and pasted a portion of the text into one of those translator sites.  Not thinking I would ever read her words she'd written something like this, "Linda Born has helpful things to say about caregiving, if you can get past her conservative religious perspective."  

I had a laugh over this, but my next thought was a hope that if anyone who reads my words needs to get past my faith perspective in order to receive the help and encouragement I have to give, that they can do so.  Indeed, it is my prayer!  

That said, here is my word to you today; don't let shame over dark thoughts keep you from the sustaining, forgiving presence of the Lord.  It's not that He loves you despite the sin, but rather that He loves you enough to have provided an escape from the sin.  That way is forgiveness.  If we don't acknowledge the sinfulness of the negative feelings of resentment, anger, and even hatred, we instead justify those dark feelings by saying that the person who is the target of the dark thoughts deserves them.   An Alzheimer's patient is a victim.  The old adage "Do not blame the victim" comes to mind. 

I've had some very dark thoughts of late toward my mother.  Yes, I have in my heart of hearts wished for this trial of caregiving to be over.  Nearly seven years of my life have been given in service as a caregiver.  The emotional and spiritual burdens of the time have thus far outweighed the physical work of caring for Mom. I've read the experiences of other caregivers, and I am aware I could have it much much worse.  Although it has happened occasionally, I have not routinely had to change adult diapers or scrub bodily fluids from the floor or linens.  But, I do bathe my mother, provide all her meals, and carry out housekeeping chores for her.  She sometimes expresses gratitude, but just as often she is somewhat demanding.  My heart takes a daily beating.  I can't be gone overnight or even for an evening out without making special arrangements for her.  

I'm not always nice to her.  Although I know better than to try to reason with a dementia patient, sometimes the injustice of my situation overwhelms me and I try to explain to her why she can't have unlimited crackers and pretzels (she has a bad knee and is overweight), or that the fact that I forgot to change the date on her whiteboard doesn't mean that she is being mistreated.  Sometimes she acts as though she is in a luxury hotel and that the paid help is not providing the expected level of service.  At those times I feel like her servant rather than her daughter.  It is hard to be nice.  It is hard to be Godly.  It is especially difficult not to react to her negative behaviors with anger and a raised voice, and then later to suffer overwhelming guilt.  She is completely dependent on me for all her needs.  I am the one who carries all of the power in our relationship.  I determine what she eats and when, what she wears, and how much social interaction she will receive during a given day.  It is always a sin to misuse power one carries over someone else. 

But through all of this I have a deep knowledge that my negative feelings don't remove me from God's love for me.   By continually bringing my resentment, anger, and yes, my sin into God's light, I've been able to accept that while I am not perfect, God is yet able to minister through me to meet the needs of His beloved Anna Ruth.  I have been aware throughout this caregiving journey of how precious she is to the Lord.  This awareness of the incomprehensible value of my mother's life in God's eyes has been the motivating force behind my willingness to continue to provide her care beyond the length and breadth of human love.  And it is my confidence that He loves me with the same intensity that He loves my mother.  This assures me that He does not forget me.  He's asked this service of me, He has provided strength and resources, and He will see me through it. 

My dark thoughts are not acceptable, but they are forgiveable!  

So are yours.  

Scripture:  Though I walk in the midst of trouble, you will rescue me...the LORD will perfect that which concerns me"  (Psalm 138:7-8 NKJV).