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When Alzheimer’s Caregiving Ends

by Nancy Wurtzel on March 8, 2016

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Handling the death of a loved one is difficult, but those who have been caregiving often have an especially difficult time.

Additionally, an Alzheimer’s death is often complicated because the person affected has ebbed away in inches over a long period of time.  Some caregivers handle their mourning and move forward fairly quickly.  A smaller number — especially those who have been caregiving for many years — seem locked in their bereavement and are unable to go on with their own lives.

This “complicated grief” can be overwhelming.

About a decade ago, Jim, a long-time family friend died of degenerative brain disease.  Martha, his wife of more than 50 years, had cared for her husband during his many treatments and years of declining health.

After Jim’s death, Martha fell into a deep depression.  She told her family, “I wish I’d been the one to die.  I’ve got nothing to live for now.”

Caregiving and Complicated Grief

That may seem extreme, but remember when she was caregiving, Martha’s life was busy and hectic.  Suddenly, Jim was gone and life became empty and meaningless.  Instead of rebounding from Jim’s death, Martha became quiet, sad and withdrawn.

My mother was Martha’s best friend.  Mom was a highly pragmatic person, and she couldn’t understand Martha’s complicated grief.  Her inability to relate caused the two friends to drift apart.

I’ve since learned that Martha’s story isn’t that unusual.

The National Institutes of Health (NIH) reports 10 to 20 percent of former caregivers experience chronic depression.  From the NIH website, “Despite the generally positive prognosis for most bereaved caregivers, a sizable minority continues to experience high levels of stress and psychiatric problems after death.”

caregiving-caregiver-aging parents-elderly-Alzheimer's-dementia-memory lossWhy can the majority of caregivers, like my mom, navigate through the grieving process and emerge stronger, when others, like Martha, fall into a downward spiral and find it much more difficult to recover?

The answer may lie in something called “anticipatory grief.”  This happens when the grieving process begins early in the caregiving  journey.  Years pass and mourning becomes an ingrained way of life.  When the loved one dies, these feeling continue unabated and may even be amplified, causing the caregiver to become emotionally paralyzed.

Looking back, I think this is what happened to Martha.

A year after her husband’s death, Martha was still fragile, withdrawn and depressed.  Concerned about her well-being, Martha’s grown children decided she should move closer to them.  Shortly after, my mom was diagnosed with Alzheimer’s.  Mom’s disease and my own years of caregiving caused me to lose touch with Martha.  However, I often wonder if she was able to overcome her pain and move forward.

Moving Forward After Caregiving

What can you do for someone who is experiencing prolonged grieving?

  • Listen, withhold judgement, show empathy
  • Allow the person to talk, listen respectfully. Don’t try to tell your story unless the person asks
  • Gently offer suggestions that are helpful, not hurtful
  • Realize that everyone deals with grief differently and the process cannot be rushed
  • Encourage the former caregiver to journal about his or her feelings
  • Schedule a visit to a doctor for a physical and bring up the symptoms
  • Consider a support group or individual therapy

So much is written about caregiving, but not as much attention is given to what happens when the care journey comes to an end.  It’s an especially difficult loss.  This is when the caregiver needs extra love and support.

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1 @caap72 March 12, 2016 at 9:00 pm

We all have the burn out being a care giver. I know I did gain weight cry and just prepare myself. No help! But she lived like a Queen. I cried and go together, cry and talk to the lord. One day like every one said its hard. But the golden gates will be open for the help we gave our love ones. Just remember faith, love, happyness, hope and yes laughter. Just don’t be a lone. Keep with people you love always. They can be next or you. I’m married 44 years my husband is 65 and I’m going tone 62 April 1 st. That is the lonely birthday any one has In life.
But we half to go on, one of us will be caregiver again
We al need support no what we have just as long as outlive to hold us up
Keep our faith up
Ty for sharing your story

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