It had been two years since Joe had come home to live with and be cared for by his wife Joan – a full five years since he was diagnosed with dementia.
He was declining now at a rapid pace – physically as well as cognitively.
Joan and I spoke often during this time. She was exhausted from caregiving and needed all the emotional support she could get to keep going. At my suggestion she hired more regular help so that she could take breaks and reluctantly joined a support group.
During the winter of 2008, Joe developed a bedsore on his lower back during a hospitalization in which his kidneys were the focus. I’ll never forget visiting with them in the E.R. before he was admitted.
The lights, the noise, the constant prodding of Joe for his blood, to connect him to a monitor, to scan his body, it was all too much for him and seemed to make matters worse.
If you’ve never been inside an E.R., count your lucky stars. Far too often it is a dizzying place. But for those with dementia it can be completely devastating.
As I approached the small space where Joe and Joan were, I was recalling what Joan had told me most recently: Joe had stopped speaking except in nonsensical words.
So when I arrived at the bedside I was taken aback when he grasped my hand and said: “After a while, I’ll go home.”
I turned to Joan who reached out her hand to Joe and said, “Yes, baby, we will go home. Don’t you worry. We’re going to get you home real soon.”
And with that Joan turned her head away from Joe and began to cry softly. She understood as I did, that the chaos of the setting was affecting him. I could tell that she wanted to remove him from it but didn’t think she should.
Three days later when it was time for Joe to be discharged, Joan called me concerned that she would have to care for his wound. I urged her to talk with the nurse and to ask that arrangements be made for wound care at home. She did so and was assured that a nurse would come to the house. This greatly relieved Joan because she was squeamish and nervous. She feared doing something wrong and/or causing him any pain.
However, when the first week of Joe’s home-based wound care came to an end, Joan began to feel pressure from the nurse to learn the routine so that her visits could become less frequent. When she resisted initially, Joan later told me that the nurse raised her voice.
“We can’t send someone out here forever!“
And so dementia required Joan to make a 4th transition. This time she would go from being Joe’s family caregiver to his wound care nurse.
Wound care isn’t something that you might think the health care system would require of a family member, but it does…among other things. During this period Joan also learned to use a hoyer lift and to monitor an oxygen tank.
In the weeks that followed we talked more frequently and she shared her experience.
“The wound is deep,” she’d said one day, “and to be honest, just pulling the old bandage off his skin is enough to make me weak in the knees. But it’s for Joe. That’s what I keep telling myself. I’m doing this for Joe.”
By now Joan was exhausted and desperately needed to rest. I began to wonder when the battle might end. Although she never said so, I knew Joan was wondering too.
*All identifying information has been changed to protect the client.
Transition # 5: From Family Caregiver to Former Family Caregiver will post on September 8th. It will be the 5th and final post in this series on transitions in caregiving. Don’t miss it! Subscribe to my feed by clicking here.
This post is part of a special series focused on transitions in caregiving. If you enjoyed this one, you might enjoy the others. They are:
Transition #1: From Spouse to Family Caregiver
Transition # 2: From Go-It Alone to Asking for Help
Transition #3: From Private Person to 7-Eleven Manager