I received an email from a woman whose husband died after a long illness with ALS. The disease was relentless in its progression, and she said, “The last three years were brutal.”

Her husband lost the ability to speak, eat, or move without assistance. During the final year of his life, a caregiver from Hospice visited four days a week and stayed for about an hour.  The rest of the time, she managed all of his needs on her own. 

Although she had cared for him around the clock for six years, she was racked with guilt and obsessed by her memories of the times she had lost her temper, raged in front of him, and even handled him roughly when he was utterly helpless. So she contacted me, hoping to find a way to cope with her guilt.

I wrote back to her right away. Here is a condensed version of my response to her: 

1. Get some rest. ALS has to be one of the cruelest diseases individuals and their families can ever experience. It is hell on earth for everyone involved. You must feel a level of physical and emotional exhaustion that most people cannot conceive. Do only the things that absolutely have to be done. Put everything else on hold. Go to bed when you’re tired. Take frequent naps, and permit yourself to focus on your own needs. 
2. Apologize. Write a letter to your husband and express everything you feel, including your love (or lack thereof) for him before he got sick. Be honest about how his disease impacted your life. Apologize for the times when you weren’t as kind, loving, and helpful as you wish you could have been. Keep the letter for a while so you can reread it and reflect on it, and then when you’re ready to release it, have a ceremony and burn it. 
3. Get involved in a grief counseling group. You don’t have to go through the grief process alone. People in the group will have similar experiences and feelings. They will understand and support you and help you recognize that the care you provided for your husband, although imperfect at times, was a gift beyond measure. 

Guilt After Death is Not Uncommon for Caregivers 

After a loved one dies, some caregivers tend to focus only on the times they lost their temper or said and did things they wish they could take back. If that sounds familiar, try to understand and accept that caregiving is exhausting. It pushes you to your physical, mental, emotional, and spiritual limits on a daily basis. No one can do this work day after day, year after year, without losing it occasionally. So  cut yourself a lot of slack, and understand that you were a human doing the work of angels. No one could have possibly expected or asked for more.

Thought for the Day

"I will strive to be patient, kind, and loving as I care for my care receiver. I will forgive myself quickly when I fall short and try to do better tomorrow."