“I Don’t Want to be a Burden”

“I don’t want to be a burden to my family. My kids have their own lives and shouldn’t have to be burdened with me,” said the mother in the early stages of Alzheimer’s disease.

I’ve made the statement myself and heard it from Linda when she was diagnosed with Frontotemperal Dementia.  We moved near our daughters for support in our declining years; but I still struggle with the balance between support and being a burden.

“Being a burden” is high on the list of fears of older adults.  The fear is rooted in the dangerous myths of individualism and self-sufficiency.

Warren Kinghorn, a psychiatrist and theologian at Duke University, lists five societal mistakes harmful to people with dementia. One is the notion,”It’s good not to be a burden (and not to need others).”

“The remarkable thing about human life,” writes Dr. Kinghorn, “is not that humans are frequently a burden to each other, but that bearing each other’s burdens is simply what humans do. It is care and relationship, not isolation and individualism, which are normative to human life.”[i]

We come into the world as dependent creatures and the interdependency only grows more complex and multi-layered as we mature.

Therefore, bearing burdens is integral to being human! I am increasingly convinced that we have an innate need to nurture and care for others.  Bearing burdens is in our DNA! I see it daily in my relationships with residents in the memory care unit.  Many people with dementia are hyper sensitive to feelings as expressed in voice tone and non-verbal communication. Many seem to intuitively know when someone is angry, frustrated, lonely, or not feeling well.

We recently found Linda in another resident’s room. She was bent over the sleeping man, gently stroking his shoulders. She was overheard saying, “I’m sorry. If you’re having a problem, I will get them to help.  It’s okay if you’re just sleeping.  I just want to make sure you’re okay. I love you.” John, about whom she was concerned, is in the severe stage of his disease and tends to be isolated from other residents.  Linda seems to sense his need for support and she has a need to provide support!

This dynamic of bearing burdens and being burdens is rooted in the very nature and mission of God.  God declared to Moses, “I have observed the misery of my people who are in Egypt; I have heard their cry on account of their taskmasters. Indeed, I know their sufferings, and I have come down to deliver them. . .” (Exodus 3:7-8). God is a burden-bearing God.

In Jesus the Christ, God “pitched tent” among us and shouldered our burdens all the way to and through the Cross and sets us free to bear one another’s burdens.

Bearing burdens is part of what it means to the body of Christ: “Bear one another’s burdens, and in this way . . . you fulfill the law of Christ” (Galatians 6:2, NRSV). Bearing one another’s burdens is an opportunity to share in Christ’s self-emptying love.  Furthermore, in bearing one another’s burdens we meet the Risen Christ and grow into his likeness.

Bearing burdens is not a burden when shared in covenant community of love. Burden-sharing is part of the Christian community’s identity and mission.

I often enter the memory care unit feeling weighted down with the burden of loss and grief, assuming that I am there to lift the burdens of those trapped in confusion and vanished memories.  When I take  time to enter the world of those who bear the burden of the disease, be they staff, residents, or family members, a mysterious connection occurs. It may be a faint smile, or sudden sparkle in the eye, or an unexpected hug, or a jolly laugh, or a friendly “hello.”  But in that simple moment of joy, those whom society considers as burdens lift my burdens.

Together we meet the One who extends this invitation: “Come to me, all you that are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you, and learn from me; for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light” (Matthew 11:28-30 NRSV).

 [i]Warren A.. Kinghorn, “I Am Still With You”: Dementia and the Christian Wayfarer,” Journal of Religion, Spirituality & Aging, 00:1-20, 2015.

 

 

6 thoughts on ““I Don’t Want to be a Burden”

  1. Once again, beautifully said. As the General Agency wellness coordinator, I hear from staff that they are facing this issue in different ways. Caregivers often have a difficult time and I know they will also appreciate the patient’s perspective. Knowing we can all feel burdened but that we can also find comfort in knowing God wants to give us His rest. Thank you. If you are ever in Nashville, I hope you can stop by GCFA!

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  2. Ken , Thank you. I have a heavy burden since I recently lost my 51 year old son to sudden death. But as Bishop Looney said to me on the day of my son’s death. Do not let this terrible event define you. I visit a friend weekly who is in a Dimentia unit and the joy amidst my sadness was when her family helped her to send me a card. Dimentia persons still can care for a mourning friend. I experienced joy for her effort.

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    1. Verna, I was saddened to hear of the death of your son. Your kind words and story of your friend with dementia affirms what I have experienced with Linda and the others who live at Bethany, the memory care unit. They care deeply and have a need to express that care.

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  3. Ken: What a marvelous article. Think of you often. I think we will all be there someday and the need to not feel a burden is huge.
    Susie Patton

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