When I am given an opportunity to share about volunteering in the area of care giving and interacting with people who have Alzheimer’s I find myself at a loss for words. What I want to do is paint a picture of everything my heart feels. How do you paint a picture of something so indescribable?
Today I think I have a way for most of the world to relate to the setting I work in. The picture I longed to paint has been painted. People are protesting their right to move about freely. People are protesting their right to earn a living. People are frustrated with shopping being a challenge. People are lonely. People just long for things to return to normal.
The feelings you are dealing with are the emotions felt by almost every in home caregiver and person living with Alzheimer’s disease that I have met. Their world was turned upside down by a disease that is always terminal.
A simple trip to the grocery store is always an adventure. When my own mother insisted on shopping with me it was an ordeal. We went to the bathroom just before leaving home. She wanted ice cream, cookies and candy. If I took my eyes off of her for a second, she wandered off. She argued that she did not need essential items I put in the cart. Patiently, I smiled at her while inside I fretted about how much easier this would have been if I were by myself. Unlike a toddler who would outgrow this behavior, hers would only get worse.
Imagine giving up your income to become a caregiver with no stimulus check to help you survive. The hours are demanding and there is no vacation. Who would ever fill out an application for this job? The following comes from the CDC.
Each year, more than 16 million Americans provide more than 17 billion hours of unpaid care for family and friends with Alzheimer’s disease and related dementias. In 2019, these caregivers will provide an estimated 18.5 billion hours of care.
I think I have given you a small glimpse into how difficult it is for the caregiver. I want to share a poem to give you an insight to how the person with the disease sees life.
Do not ask me to remember,
Don’t try to make me understand,
Let me rest and know you’re with me,
Kiss my cheek and hold my hand.
I’m confused beyond your concept,
I am sad and sick and lost.
All I know is that I need you
To be with me at all cost.
Do not lose your patience with me,
Do not scold or curse or cry.
I can’t help the way I’m acting,
Can’t be different though I try.
Just remember that I need you,
That the best of me is gone,
Please don’t fail to stand beside me,
Love me ’til my life is done.
– Owen Darnell
“Just remember that I need you” are words that I hear every time I enter an assisted living home, nursing home or support group meeting for caregivers. When I speak to caregivers, I look into the eyes of hurting people with huge hearts. They are looking for encouragement and hope. Recently, a husband had given the local sheriff a photo of his wife. They logged it into their system in case she ever gets lost to help them get it out to patrol officers quickly. She knew he did this and accused him of no longer loving her because she was angry. Living in Alzheimer’s world means their reality must become your reality. There is no sense in arguing so you hide the tears and do your best to handle these reactions.
Once you connect with someone with Alzheimer’s, the reward is amazing. Their love and response through smiles, hugs, laughter and even tears reassures me that they very much know they are still remembered and loved.
I extend an invitation to all of my readers to be standing ready to walk through the doors to shower love on these people once we are free to do so again. They have been on lockdown for weeks and are just as desperate to be with people and their families as you are. There is nothing to fear because what they suffer from is not contagious. If you want to continue reading this blog, I will be sharing tips and information to guide you in how to relate and connect.
Who do you know that needs a visit? Perhaps it is an aunt, an uncle, a parent or grandparent, a neighbor or a church friend. Someone is diagnosed with Alzheimer’s in the United States every 65 seconds. We all know someone.
Word for Today
Do nothing out of selfish ambition or vain conceit. Rather, in humility value others above yourselves.
Philippians 2:3
Song for Today
(This was the song on my heart every time I left my mom in the nursing home)
Prayer for Today
Dear God,
Thank you for holding us when there is no one else to hold us. Never let us forget that when we cannot be held or hold someone who needs us, you are there to hold us and the ones we love.
Remind us that taking the time to be with those who are alone is not just a nice thought, it is doing exactly what you ask us to do. They may not remember our visit but they will remember they are loved.
Amen
Walking Them Home 