A Caregiver’s Story: In Sickness and in Health

My name is Ed. I am 77 years old and have been married to my wife, Lucy, for 54 years. I am also a full-time caregiver for Lucy, and have been since she had her stroke in May 1998 – only one year after I retired.

The morning Lucy had her stroke I was laid up in bed with the flu and my wife was babysitting our grandchildren. The phone was ringing and she wasn’t picking it up, so I got out of bed to answer it. The call was from my daughter. Apparently, the grandchildren called her and asked why Lucy wasn’t speaking to them. I said I did not know, but would find out what was going on.

I found my wife lying on the couch and I asked her what was happening and I got no reply – only a blank stare. After trying to get her to say something and get up from the couch, I realized something was wrong. I called 911. The police and first-aid arrived within minutes.

We were in the ER for about 30 minutes when the doctor told me that my wife had suffered a very bad stroke. By the next day she was in the Intensive Care Unit (ICU) and was paralyzed on her right side and could not speak. After three days in the ICU she was transferred to another hospital and for the next three months she received physical, occupational, and speech therapy.

The day I was told she was being sent home, I was in shock. Other than repeating some words, she couldn’t speak or write, and had no use of her right arm and leg. She was not even able to control her bowels or urine flow. I knew then I was going to be a 24/7 caregiver. I kept her clean and also took her to daily therapy sessions for another three months.

The first few months were exhausting. My eyes felt like they were coming out of my head from lack of a good night’s rest. One day I noticed improvement when she was able to go to the bathroom on her own. That night she wanted my help into the bathroom. I said, “No, do it yourself.” After a little crying, she got out of bed on her own and went to the bathroom. From that time on I was able to sleep well at night.

Five years ago, Lucy and I started attending the Lingraphica Aphasia Users Group, which has provided Lucille her speech-generating device. Within a year of her coming to the Users Group and being taught how to use her device, she has made significant improvement in reading & speech, to the point where she was now able to read & write or pronounce words properly. Thanks to Lingraphica, Lucille can’t wait to come to the Aphasia Users Group where she continues to improve in her communication skills. Lucille’s favorite saying to other people with aphasia is: “Don’t give up – keep on trying, trying, trying.”

It’s not easy to be a caregiver – ask any of us. But for me, my role as a caregiver is quite simple. I just remember these words:

“In sickness and in health, until death do us part.”