Table 3.
Themes and exemplar quotes.
| Excerpts of caregiver comments | |
|---|---|
| Adaptation within the role | “You just accept the changes and adjust.” |
| “It did not matter what I had to do, I learned to do it.” | |
| Caring for a spouse with HF | “The only thing he could do was breathe—that took all of his energy, all he could do is sit in his chair with his oxygen.” |
| “It was all on me, I had to keep working; I carried the insurance, and it was all on memldr;caring for him, the house, the appointments, making sure he had all of his meds at the right time and the right amountmldr;everything. It was overwhelming. It was dragging us all down but we did the best we could.” | |
| “He was doing well, thenmldr;just the ups and downs. He would fill up with fluid and then the next option would be a pacer. He would do well and then the fluid. Next it was the ICD. We were getting back to normal and then he would fill up with fluidmldr;; what a roller coaster. I just kept thinking, ‘what are they going to do next and what if nothing else could be done?’” | |
| Decision made | “Not really an option, he needed it to save his life.” |
| “LVAD or hospice—what would you pick?” | |
| “Not that I would change my decision but I had to make it without him. He was so sick, he was out of it. The times he is not doing well [with the LVAD], I feel guilty, I wonder if he would have made the same decision.” | |
| Caring for a spouse with an LVAD-DT | “I felt like I was a new mom again caring for a newborn, I just hovered; I slept when he did and I was awake when he was.” |
| “I felt prepared to go home when we were in the hospital, but the first time the alarm went off at home, I was in a complete panic. The [health care providers] were not there to help me if I could not get it figured out.” | |
| “I just pray that if something happens, the weather is good and they can fly him to [tertiary medical center]. It is obvious when we come into the emergency room how unfamiliar the staff is with his condition and equipment.” | |
| “I wonder what life would be like for us if he was living with HF.” | |
| “How long is this going to last?” |