Table 5.

Exemplars of Themes in the Family/Caregiver Domain.

Challenges of caregiving	I get frustrated because I want to be there for him, and yet I have a daughter at home, who is only 11. So, I’m torn between needing to be there for her, needing to be there for my husband, needing to be here for my dad, needing to help my sister, and my other siblings.
	I’m not sexist at all, but God I wished for a sister when I was doing this. This is a much better job for a female. I don’t want to be sexist, but, oh my God, buying her diapers, it was so difficult for me. In Walgreens, I’m sneaking around with a pile of diapers, and oh my God, it was painful!
	I feel powerless. I can’t change this, I can’t fix this, and that’s where I get all the frustration.
	It seemed to be a managed crisis for a long time. Now, it has just become an ordeal. It’s just become a trek. And you just keep plodding day after day after day. And it just seems like you are always on the tundra, never at the peak. Just always climbing.
Families acting together to address needs and find resources	So we would clean the bandages, take care of her, dump the drainage tubes. That was just our normal process. We had a normal system. My dad had piles and lists of what medications to give her, super organized, but the whole time it was just surreal.
	One thing that has really helped is just plain email. We are able to send an email out and say, “Here’s what’s going on, here’s what’s happening with dad,” so I don’t have to pick up the phone five times and call everybody.
	I have a brother who was equally as involved, but emotionally, he didn’t take it…it’s just different.
	There’s six of us that all live and can help with my mom, did help with my mom and are presently helping with my dad…They all have different strengths, different time constraints, but they’re all united to do the best for our dad presently.
Rewards of caregiving	Those are some of the blessing. Grace comes to mind, in terms of watching someone, and being with them and walking with them on the journey. This is where we are going. That’s a wonderful opportunity for families.
	And for my mom with Alzheimer’s, she was very resistant and hard to deal with, with her disease. She kind of fought it and was confused, kind of angry, but at the end when she accepted caregiving, oh it was such a sweet thing.
	But, as I’ve worked through it with my wife, I’ve come to change my mind a little bit. It’s like we’ve both become different people through the experience. And I’ve met so many people I would not have met otherwise, who are all great people. I’ve gotten involved with organizations that do wonderful work and I’ve learned how to become part of a community that I never would have done before.
Growth or change as a family	As I take care of my mother, my kids are watching this. This is what you do. I hope that is what they are picking up. That is really important too, that they will pick that up. This is how we take care of people when they are ill or when they get old. This is what family does.
	My example was, my grandmother was here, she died at a 105 ½ and she was here for quite a while and I watched my mom and dad, same age as I am now, take care of my grandmother. They were an excellent example to us.
	It’s important to not just accept at face. Be prepared to dig and research and do some, for you to do that. For the individual, the child to do that. It’s incumbent on us, just as our parents would have done that for us when we were younger and couldn’t do it. So the role has completely switched around.
Insights from caregiving	For me, caregiving, it’s the giving. It’s the giving out, giving out, giving out. So sometimes you have to be in that receiving mode whether it’s the quiet or the creativity or the walks with friends. Or you really get out of balance.
	I know for me personally, I know I could not do this without God’s help. I could not do this unless, I believed in Jesus Christ, who can give me the power and strength, patience, the whatever it is that I need at this moment, that I can ask for.
	Given this goal of keeping Linda as happy as we can all the time gives you something to live for and think about outside of yourself. And to expand to all the other people who are suffering. Turning outward has really been the thing that I see as the positive aspect of this disease.
Being true to the loved one’s wishes	Especially in larger families, it’s 5 of us, 6 of you, that fact that my mother said Margie, you can be my health surrogate, bill you’re gonna be in charge of the finances, it eliminated that kind of discussion, or what could arise problems with the siblings. Why not me, I’m the oldest boy, or whatever. So that is a nonissue. It was her choice.
	Whatever you have to say, so in some cases, it bites you in the back side. It is hard to turn that off. I had to really think about that and at times say “Ok, I’m done. I’m just your daughter, I won’t butt in, I won’t give you any advice, I won’t make those suggestions.
	She just so wanted everybody to know how she wanted things to be. That she still had that power at the end, whether she was able to say or not. That it was in place, she had done it, she had organized it. She was always a very organized woman anyways. So, that was a great gift that she gave us kids.