Guilt

I feel so guilty.

I haven't accomplished very much for quite awhile.  I have failed to receive an acceptable score on the all-American litmus test of self worth; how much did you get done today?

And...I procrastinate. I sometimes feel almost paralyzed.  I find myself sitting when I should be painting the hallway or cleaning the upstairs bathroom. 

This evening I finally geared up to do that paint job when I felt the Lord's nudge to pray.  I opened my heart to God, and this thought came: "Look at what you have endured today."

In the morning my father-in-law was hospitalized with chest pains.  When we knew he was stable, my husband and I drove to the nursing home we've chosen for Mom and delivered our doctor's prescription for adult daycare.  We made tentative plans to bring Mom to the facility one afternoon next week.  As a transition strategy we will utilize daycare as needed until the time we can no longer care for her at home.

I've been Mom's primary caregiver for eleven years.

After all this, I came home and I sat. And as I sat, the push to accomplish things attacked; I felt an overwhelming need to fortify my self-worth with visible signs of tasks completed.  But the emotional paralysis was stronger, and so I just sat and felt guilty for doing so. I know it will seem unlikely to those who read these words, but I had no idea that the trauma of my father-in-law's health crisis or the grief of our decision to transition mom to nursing home care was impacting me at all.

As caregivers we have to become skilled at separating ourselves from our emotions; it's a survival tactic, but we need to be careful not to carry this strategy too far. Until I quieted myself before the Lord I had not connected the guilt I feel over Mom with my deer-in-the-headlights immobility.  I condemned myself for not accomplishing household chores when the actual source of my guilt has to do with my mother. And I need to clarify that not all of my shame is false guilt. I am heart-weary, and am no longer dependably able to be kind to Mom when she is unkind to me. I've spoken some pretty harsh words to her. 

It's good to bring this guilt to the Lord's light, because in His light I can see that in making plans for her future, I'm only doing what is best for Mom. And if what is best for her is also best for me, I shouldn't feel guilty.

But I do.

As caregivers we suffer guilt that comes from sin, because it is impossible to be perfect toward our care recipients 100% of the time.  But we also suffer false guilt, accusations launched at us from the devil, who hates us and wants us miserable (and would rather we cleaned a closet than come before the Lord to be washed clean of sin and freed from the enemy's lies).

Here are two Scriptures that come to mind, solace that offers true healing as opposed to slapping a band-aid labeled "look-at-all-I've-accomplished" over my buried guilt:

"If we confess our sins, he is faithful and just and will forgive us our sins and purify us from all unrighteousness" (1 John 1:9 NIV).  Father forgive me for the unkind words I've spoken to Mom.  Forgive me when I've been unable to turn the other cheek. Forgive me when I've acted uncaring.  Help me to be dependable in loving Mom with Your love. 

"Even though our inner thoughts may condemn us with storms of guilt and constant reminders of our failures, we can know in our hearts that in His presence God Himself is greater than any accusation. He knows all things" (1 John 3:10-20 The Voice). Father, thank You for understanding how battered my heart feels. Thank You for soothing my injuries with Your healing balm. Thank You for loving me when I can't love myself. Thank You for holding me in Your arms while I cry.  I praise Your Name.  

If you've been feeling guilty and overwhelmed of late, this comes with a prayer that you can quiet yourself before the Lord and allow Him to show you the sins He will freely forgive and the heartaches He is willing to heal.  

Different Mind, Same Heart

Today I had the opportunity to visit with a lovely young woman named Anne, who is an elder companion. Elder companions may assist with basic daily tasks, provide respite for caregivers, and improve the quality of life for their charges by decreasing isolation through the formation of relationships that end up being a blessing to both the companion and the person who needs support.  

Anne told me that sometimes people who learn she works with dementia patients will make comments about the behavioral changes that are a part of the disease process. Some folks seem to feel that overtly negative behaviors reveal that a person has always been "like that," the only difference now being that dementia has robbed them of the ability to hide their true natures.

I was impressed with the answer Anne provides these people, which I've paraphrased here: "Isn't it nice that when people who now have dementia were younger, they had the ability to choose not to give voice to those negative emotions that we all have?  It's sad that now they've lost the ability to make that choice.  But that doesn't mean they were bad before or that they've changed now--they are the same on the inside although they may act differently on the outside."

I joked that the reason I thought these words were so wise is that I agreed with them so strongly! Negative behaviors need to be thought of as surface static--the result of cognitive changes and the physical discomforts of age and disease--and not as a reflection of the person's "true colors."  A simple way to think about this is the old illustration that the outside of a package doesn't necessarily reflect the quality of the gift within.  Bodies age and minds deteriorate, but beneath these outward signs every dementia patient is still in possession of a heart that needs comfort and support, a heart that is surprisingly capable of giving as well as receiving love.  It's our challenge as caregivers to maintain connections to the hearts of the precious people who need our care. 

You can read more about the unique and much-needed profession of elder companion here. 

God's Help for the Valley

Sometimes a journey through a loved one's Alzheimer's disease feels like an extended walk through the Valley of the Shadow of Death.  The disease process can take years of time, and yet Alzheimer's is labeled a terminal condition with the result that the family of the patient not only has the initial shock of a terminal diagnosis, but then  must walk forward, negotiating a grief path that cycles again and again as we lose our loved one by stages.  It isn't just a marathon. A marathon, though long and grueling, has a clear cut beginning and end; Alzheimer's has neither. By the time a diagnosis is given, most patients have suffered mild cognitive impairment for years prior. And it is impossible to estimate accurately how long any one individual's battle will continue; my mother was given an estimated three years to live when she received her diagnosis. That was eleven years ago and she still lingers at the late mid-stages of the disease. 

Sometimes, no, most times, caregivers are fighting battles of their own cognizant with the enforced schedule and responsibilities imposed by a loved one's dementia. I am emerging from one of those difficult times, having suffered 6 months of successive, minor health problems that have left me weak in body and tender in my spirit and emotions. Valleys are hard and unfair. And so this morning I've decided to seek Scriptural encouragement for how we can proceed through the Valley of the Shadow and yet remain steadfast in faith and hope.

Let's look to the hope we have in Christ Jesus so that we may gain strength for the hard times as we accompany a loved one on the long journey through this hateful disease.

Instructions for hard times:  

Be joyful in hope, patient in affliction, faithful in prayer. 

--Romans 12:12, NIV

When we've failed to exhibit kindness to our care recipients, remember that our Lord Himself intercedes for us. Once we've been refreshed by His solace we are to extend this same love and acceptance to those He's chosen to receive our care: 

Simon, Simon, Satan has asked to sift all of you as wheat.  But I have prayed for you, Simon, that your faith may not fail. And when you have turned back, strengthen your brothers.

--Luke 22:31-32 NIV

Therefore he is able to save completely those who come to God through him, because he always lives to intercede for them.

--Hebrews 7:25 NIV

When we are judged by others for the decisions we make for ourselves as caregivers or our loved ones; struggles when the ways we choose to allot our time and ministrations are resented; heart hurt when we are judged as being inadequate or having fallen short to do what others feel we ought to have done: 

The Lord says, “I will rescue those who love me.
    I will protect those who trust in my name.
When they call on me, I will answer;
    I will be with them in trouble.
    I will rescue and honor them.

---Psalm 91:14-15 NLT

And I will ask the Father, and he will give you another advocate to help you and be with you forever—

John 14:16 NIV

I cry out to God Most High, to God, who vindicates me.

--Psalm 57:2 NIV

And these Psalms in their entirety: Psalm 27,  Psalm 91, Psalm 43

The importance of hope: 

I remain confident of this:
    I will see the goodness of the Lord
    in the land of the living. Wait for the Lord;
    be strong and take heart
    and wait for the Lord.

--Psalm 27:23-14 NIV