Loving Through the Long Goodbye

Love, dementia, alheimer’s disease

Posts 04


They sat in the swivel chairs and looked out at the view over the marsh. She was pensive and swirled her Chardonnay in the glass as she tried to soak in this moment. This regular mundane moment that she and her husband repeated so many times: sitting next to each other, she with her wine and he with his Crown and Coke, it became more precious every day. Scarcity will do that to things. It makes them more precious.

He was a brilliant doctor. She stepped away from teaching to take care of the family. Their evening ritual of sharing a cocktail and conversation had been the standard connection point for years. There was nothing all that special about it. Until there was. She had almost taken it for granted…until Alzheimer’s Disease changed everything.

It’s often called the “long goodbye”. For those of you who haven’t been touched by any of the dementia diseases, let me tell you, they are ugly beasts. They lurk and prowl and bare their teeth at us in the dark of every night. We wait, never knowing what our loved one will lose next. Maybe she will lose the ability to calculate the tip at a restaurant. Maybe he will forget who you are. We say goodbye to the person we knew a little bit at a time. It’s brutal. But we don’t say goodbye to the love, for it never leaves us.

Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrong. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.

1 Corinthians 13:4-7


Hearts, love

Love is all these things. Do you know what else love is? I think it is the best part of our humanity. The love of God is perfect and pure. Our love, however, is touched by our very humanness. Love is a verb. Love is a choice. Loving someone is an ongoing sacrifice of our hearts. Loving someone through a long goodbye is holy and honorable and HARD. Loving can feel lonely and one-sided when walking the road of dementia or brain injury.

When Jesus saw her weeping, and the Jews who had come along with her also weeping, he was deeply moved in spirit and troubled. “Where have you laid him?” He asked. “Come and see, Lord,” they replied. Jesus wept. Then the Jews said, “See how he loved him!”

John 11: 33-36

How can we find relief when we are troubled in spirit, when our hearts are shattering every day? How can we find peace in the middle of the war we are fighting? How do we even survive the pain when he doesn’t return the gesture of squeezing your hand, when he loses the ability to hold a conversation,  or when the long-term memories start to go?

We remember:

  • Anger doesn’t mean you don’t love.
  • Frustration doesn’t mean you don’t love.
  • Wanting a break from him doesn’t mean you don’t love.

And we recognize:

  • Forgetting you doesn’t mean there isn’t love.
  • Complaining he wants to go home when he is home doesn’t mean there isn’t love.
  • Refusing your requests doesn’t mean there isn’t love.

We grieve. We cry. We rage against the unfairness of our human frailty.

And then we hold on.

  • We hold on to God.
  • We hold on to the legacy of a loving relationship.
  • We hold on to the person that the LORD created us to be.

Holding hands, holding on

Holding on is hard when the storms are strong. It is ok to cry out. Cry out to the LORD and ask Him for shelter. Ask Him to wrap his strong arms around you when you feel like you are losing your grip. Jesus will be with you in the hard places.

For we do not have a high priest who is unable to empathize with our weaknesses, but we have one who has been tempted in every way, just as we are – yet he did not sin. Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.

Hebrews 4: 15-16


Hold on by being present. Cherish the everyday moments that will become fewer and farther between as the days go by. Celebrate the small wins. Allow yourself to be real about your feelings, but do not lose yourself in the process. Emotions are a gift from God, even when they are hard. They are part of our humanity, of how He designed us to be.

Embrace the legacy of love you have created over the years. Lean into one another. You will both be scared together until he forgets to be scared. Then you will pick up the cross and keep walking. Keep seeking Jesus. Keep pouring out love. For it always protects, always trusts, always hopes, always perseveres. (1 Corinthians 13:7)

Heavenly Father, help us to love one another with our whole hearts. May we trust in you as we walk through the dark scary places. Fill us with your hope and the peace that only you can bring. Help us, we pray, to be the very hands and feet of Jesus. May we never neglect to see the humanity that can be clouded through the lens of disease. Bless us with endurance, LORD, and help us to turn to you always. Amen.

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  1. Laura says:

    “But we don’t say goodbye to the love, for it never leaves us.”.. just beauty! Such a hard thing to go through and your delicate words are beautiful.

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