Table 2. Tension with Illustrative Quotes.
| Living | Bereaved | Declined | |
|---|---|---|---|
| Tension Between Hope and Reality | |||
| Hope | And all of a sudden there was this little ray of hope you know? You could just see it change his life…because he had pretty much given up. | It was hope. A new future. A life again. | [Both hope and reality addressed together]: You'd hear him get his hopes up once in a while and think about things and think he would get better. And then he would realize he didn't want to put all the work into it of getting better. |
| Reality | …it [heart failure] was killing him. He had no strength…and one day I went to pick him up and I saw him, he could just barely walk to the car…he couldn't climb the stairs. He had no quality of life. He was just existing. | …but definitely we thought through, ‘Do you think dad can make it through this? Do you think he can mentally do this? Do you think his wife could be the caregiver for the next 10 years?’ | |
| Tension Between Wanting Their Loved One to Live and Respecting Their Loved One's Wishes | |||
| Wanting Their Loved One to Live | …anything to make my dad still be here. We were 100% willing. Even the side effects didn't bother us…’cause they told us about the machine and we were like ‘Of course. Yes. We want it.’ | I just figured this was it…we are going to finally push death away and we were going to really go for this, because he would have a better blood flow. He would have a chance to do things. | Not Applicable |
| Respecting Their Loved Ones Wishes | My thoughts were this was his life and it was his choice. I said ‘I don't want you doing it for me. You are doing this for you. Is this what you really, truly want? So I really made sure the decision was his choice. | Interviewer: What do you think was THE most important thing in the decision?
Caregiver: That [patient] made up his mind what he wanted. |
Cause whatever he wanted I would agree with…no matter what I felt about it, I wanted him to be happy with the decision. And I thought I didn't want to be able to influence him in that decision. Cause to me it was a very personal decision. |
| Tension Between Gratitude and a Feeling of Burden | |||
| Gratitude | We have to thank God for the LVAD because otherwise we wouldn't have him now. | …it was some of the most blessed time we had together. It really was. It ended up being such a blessing. | Not Applicable |
| Burden | I've never felt caregiving was my gift…I tend to feel like I'm being imposed upon at times…that you are being called upon. | I think it was a little scary. So worried that you are not going to do something quite right…those last couple months, I just was worn out. | Not Applicable |