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Glimpses of Grace

Behind the "I'm fine" - a glimpse into the lives of Alzheimer's caregivers

In Glimpses of Grace

By Dorothy Horne
April 25, 2016 at 5:36 p.m.
Updated April 25, 2016 at 5:36 p.m.

People ask us how we are doing. We’re fine,” we reassure them in our best caregiver manner. Sometimes they will add, “I am praying for you,” which we always appreciate.

What we really want to say but can’t – “I need help. I feel like I’m drowning. Yes, pray for me but can you also throw me a line?”

Mostly, we don’t say how we really feel and what we really need because we know it is too much. Also, we know talking about it will makes us cry right there in front of you.  It’s much more convenient (and quicker), to assure people of our “fineness.” To truly answer the question would take much more time than the standard 30-second greeting allows. Will you give us the gift of listening to our stories sometime? We need someone to hear us. Sometimes we need to be able to take of our “I’m fine” mask.

Some of us can’t take off our mask, however, because how do you ask for help when people don’t know your loved has Alzheimer’s? There is a stigma that comes with an Alzheimer’s diagnosis. Many times families are ashamed, and so we choose not to let people know…sometimes not even our extended family members. So we live in a prison of isolating silence which prevents us from asking for the very thing we need most – help. We need to be able to break our silence and tell our stories. We need to be able to ask for help without being ashamed. “Just the act of acknowledging the disease, which isn’t always easy given the stigma … is a big and brave first step. Telling your story has an effect on the person hearing that story” (“Take Action” by Fredrick Kunkle in Neurology Now, February/March 2016).

Caregivers are on the front line in the battle against stigma as well as caring for, honoring and fiercely protecting our loved one.  But caregivers fight many other battles, too. A typical day is filled with contradictory thoughts and emotions – battles within ourselves on how we should best allocate our time to make it through the day while balancing care for our loved ones along with house duties, appointments, errands and many other tasks. As the disease progresses, we have less and less time to rejuvenate, reflect, or pursue interests. When we do any of those things, it’s hard not to feel guilty, because that means our loved ones are not getting our attention or help during that time. 

In the midst of all of it, we are grieving our loved one’s changing status. Many of us are facing it alone, without family nearby. It’s very hard to watch by ourselves. We want to go tell someone. We want to cry out to someone, “How do you make it stop? Doesn’t anyone know how to make it stop?” It is easy to become overwhelmed, which can lead to illness, depression, despair, bitterness, self-pity and a negative mindset. To try and avoid this, we must take pains not to refer to or think of Alzheimer’s as a “horrible disease.”

It is self-defeating. It also negates the promise of God’s provision in all circumstances. In the book, “A Dignified Life,” authors Virginia Bell and David Troxel wrote, “We believe that too much attention has been paid to the ‘tragic’ side of Alzheimer’s disease; past books and pamphlets on Alzheimer’s disease include negative labels such as ‘victim,’ ‘the funeral that never ends,’ ‘the mean stage,’ ‘the living death,’ and ‘the worst fate.’ Yet, by dwelling on the negative, it is too easy to victimize people with the illness….Caregivers, too, can be victimized by this attitude….’”

By the time we have finally reached the point where we are able to say to somebody, “I need help,” we have worn ourselves out physically and emotionally. We have beat ourselves up for not being able to “do it all.” We feel inadequate at everything, including caregiving, because there’s just not enough time or energy to go around. We feel like if we were more capable people, we could do it all.

Please understand that I am not trying to get you to feel sorry for us.  No one wants to be pitied, or at least they shouldn’t.  I am just trying to let people know a little about what is really behind the “I’m fine.” Before Byron was diagnosed at age 62, I really had no idea what being a caregiver encompassed, or the conflicting emotions it produced.

Yes, being a caregiver is probably the hardest thing we will ever do, but there are also blessings. (If we have a hard time finding them, we can “reframe” through Scripture preconceived notions about how life is “supposed” to be).We have opportunities to serve and love our family member unconditionally. We have the opportunity to live out faithfully the story we have been given, and to become advocates for our loved ones and all people who suffer from the disease. We can learn to praise God in all circumstances as well as learn to trust and rest in him, just to name a few examples. 

Warriors can’t win battles with a negative mindset. We need to try and stay focused, courageous, positive, thankful and determined. We will fail many times, and we need to forgive ourselves and remember that tomorrow is a new day. We can trust God to supply for us what is beyond our own capabilities. “My grace is sufficient for you, for my power is made perfect in weakness” (2 Corinthians 12:9).

Thank goodness for friends, programs and agencies that offer respite care so on occasion so we can get some much-needed time for us to rejuvenate. For a short time, we can relax and just be our regular selves again while we are “off the clock” and know that our loved ones are being well taken care of. Ask for help. If you don’t know where to start, call the Helpline at 24/7 at 1-800-272-3900. Attend a support group. Go to a workshop. Become educated. Know that you are not alone. 

"Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you. When you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God, the Holy One of Israel, your Savior" (Isaiah 43:1-3 NIV).

Tuesday, April 26th at 11:00 - Alzheimer's program



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