Maryln noticed that care recipients can get caught up in their own needs and not see the impact they have on the people around them.

Written testimony

I think that’s one of the biggest problems, because the person you’re caring for wants to remain independent as long as possible, and in their mind, independence includes the spouse helping them, right. They’re still independent even though the spouse might be almost lifting them. Having to move to somebody else coming in to do that is a big leap for them. And so, they keep wanting you to help them do all these things, and they seem to lose the ability to think about the other person. And this is something that I think is really important for anybody who isn’t a caregiver—or even people who are caregivers—to realize that that happens. Because I went through the same thing with my mother who had Parkinson’s. And people who become disabled seem to, I suppose, they have to focus in so much on their own needs and what they have to do to function that they cease to be able to see the impact they’re having on the people around them. So it’s very important for caregivers [that] they have to be the one looking after their own needs. And they have to be aware that the person who may be from many, many, many years would have been very considerate of them and concerned about their well being is now unable to think that way, to see that way. They’re so focused on how they’re going to do something and trying to accomplish it that their mind just doesn’t seem to be thinking beyond to “you really shouldn’t be doing this.” 

I remember one of the last times I tried to help him was he needed to get off the toilet and he just couldn’t. He couldn’t stand. And so, I was helping as usual, but at one point he said, “I keep telling you! I keep telling you, you’ve got to lift me!” Well he’s 185-190 lbs man. How am I supposed to lift a 185-190 lb man who can’t help? Right, you’re trying to lift that kind of dead weight. And it never crossed his mind that this was an unreasonable request to make. And I think that’s something that outsiders would be completely unaware of, especially if they’ve known the person all their life and they say, “Oh, he’s very understanding, very concerned, very considerate of his wife’s well being.” And if you talked to them about it, they would probably say that. But at the time that they need help, they’re totally focused on the help they need, and they seem to stop thinking about what the impact might be on the caregiver.

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More content

• Effects of care recipients’ behaviour -Marlyn
  Maryln noticed that care recipients can get caught up in their own needs and not see the impact they have on the people around them.
• Providing Support – Marlyn
  Marlyn had to find a balance between the physical care her husband required and her own limits in performing these kinds of tasks.
• Resources – Marlyn
  Marlyn strongly suggest that caregivers join a support group: you will find people who understand how you feel.
• Interaction with professionals – Marlyn
  When her doctor told her she needed to start taking holidays, Marlyn found it much easier to take regular respite.
• Home care and live-in caregivers – Marlyn (sound)
  Overall Marlyn has good experiences with the people that come to her home to care for her husband.
• Home care and live-in caregivers – Marlyn
  Although Marlyn is very satisfied with the homecare services, last minute cancellations can leave her in a difficult position.
• Challenging emotions and feelings – Marlyn
  Whereas outsiders might judge you, Marlyn learned that other caregivers understood her frustrations.
• Impact on health – Marlyn
  Two years ago, Marlyn hurt her back helping her husband; she still lives with the effects of the injury.
• The future and caregiving -Marlyn
  Marlyn and her husband designed their home to meet their future needs. She is amazed, however, to see how many things could have been better adapted to her husband's disability.
• Providing support – Marlyn
  Marlyn realises, during the interview, that problem solving is a big part of caregiving.