It was a real shock for Anne that her husband’s family disappeared.

Transcript

I feel like through most of it, we never got much support from anybody. Not family. The family disappeared. Everybody was there in the very beginning, and then the family just disappeared. And I mean, he has a brother who lived ten minutes away from us. He visited us maybe once a year. I haven’t seen them in, I don’t know, five years now. He has one brother who didn’t visit him either, but eventually now that he’s older, he starts to visit him every couple of months maybe. So, he was kind of isolated, everybody kind of drifted away and didn’t bother with him. And I’m at work all day, so he’s alone a lot of the time too, so it’s a hard part for him too.

I was really shocked that his family disappeared. His brothers, I thought they would be there for him, but they weren’t there for him. Even my family, I mean, they tried to support me, but nobody ever offered to come and stay with him so I could go out. Nobody, nobody wanted anything to do with it really. I guess because it was a horrible situation and they want to pretend it’s not there. But no, it hasn’t been a positive [experience]. Some people might think they have a positive experience, but I didn’t have a positive experience at all.

Have you ever asked for help to these friends or family or have you?

He has a really nice cousin. He actually came twice. But when you ask people—like even with him—I felt like I was inconveniencing him. Like, “Yeah, okay. I’ll do it,” kind of thing. Nobody said, “Yeah sure. We’ll help out. We’ll give you a break.” Nobody’s ever done that. Never ever, nobody. So, I don’t have that kind of support.

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More content

• When care changes over time – Anne
  Recently, Anne’s husband can barely make it into his wheelchair on his own. She is worried about what will come next.
• Uncovering how and why caregivers care – Anne
  Anne feels that she would not be able to live with herself, if her husband was in a facility.
• The future and caregiving – Anne
  Anne is worried about the day her husband can’t get into his wheelchair, but says, “What will happen will happen, there is nothing I can do about it.”
• Support from family and friends – Anne
  It was a real shock for Anne that her husband’s family disappeared.
• Interaction with professionals – Anne
  Anne is frustrated with the lack of care her husband receives, and no longer accompanies him to see the doctor.
• Impact on health – Anne
  The stress kept building until Anne was admitted to the hospital for a week.
• Caring for yourself – Anne
  Anne finds that reading certain books help her manage how she feels.
• Advice for professionals and society – Anne
  Healthcare professionals should talk to caregivers and remind them that they need to take breaks. Anne ended up in the hospital after breaking down due to stress.
• Advice for professionals and society – Anne
  Healthcare professionals should talk to caregivers and remind them that they need to take breaks. Anne ended up in the hospital after breaking down due to stress.
• Adapting to new roles and key issues for spouses – Anne
  Anne feels she has lost her marriage. “When somebody’s chronically ill, they don’t have the energy or the patience.”