Whereas outsiders might judge you, Marlyn learned that other caregivers understood her frustrations.
Now, outsiders might look at you and judge you, and that’s a very difficult position to be in—where you feel as if you should be able to do some things, but you can’t, but other people might judge you and sort of say, “You’re a nasty person, uncaring person making your spouse go into a care facility because you don’t want to have to deal with this.” And I thought that I was probably more alone in thinking the way I did until I was in this group, and everybody feels the same way. Even people who are nurses who deal with this on a daily basis in their profession, have having to clean people who had bowel incontinence problems for example, and they say the same thing.
I know most caregivers feel a lot more negative emotions than people would think. Often outsiders will look at a situation and they’ll feel very sorry for the person who is ill or disabled and understandably, but they often don’t see the impact on the caregiver as well. And when we took that course at the MS Society, one of the questions the […] facilitator asked was “What was the one emotion that comes to mind when you think of yourself as a caregiver?” And she was anticipating positive emotions like caring, loving, and I don’t know what… those sorts of things. And to a person, everybody in the room—and there was about maybe 15 of us there— the emotions were all negative: frustration, anger, depression, whatever. They were all negative. And it surprised me that that surprised her, because she was a psychologist or a psychiatrist, I can’t remember which. So it surprised me that she was expecting more things about “Oh, I’m so grateful that I can do this for my husband,” or whatever. I don’t know what she was expecting, but she wasn’t getting it.
And that’s one of the reasons that the caregiver support group is so valuable. And if anybody who is a caregiver and isn’t in a support group like, that I strongly suggest that they find one or start one. Because, if nothing else, it’s just other people who understand what you’re going through and you can blurt out all the negative feelings that you’re having at that time—frustrations or whatever—and feel that it’s going to be understood. People aren’t going to just kind of say, “Well, just imagine what your husband’s going through.”That kind of thing, or, “Just be lucky the shoe’s not on the other foot!” or whatever some of these responses might be.
- Effects of care recipients’ behaviour -MarlynMaryln 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 – MarlynMarlyn had to find a balance between the physical care her husband required and her own limits in performing these kinds of tasks.
- Resources – MarlynMarlyn strongly suggest that caregivers join a support group: you will find people who understand how you feel.
- Interaction with professionals – MarlynWhen 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 – MarlynAlthough Marlyn is very satisfied with the homecare services, last minute cancellations can leave her in a difficult position.
- Challenging emotions and feelings – MarlynWhereas outsiders might judge you, Marlyn learned that other caregivers understood her frustrations.
- Impact on health – MarlynTwo years ago, Marlyn hurt her back helping her husband; she still lives with the effects of the injury.
- The future and caregiving -MarlynMarlyn 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 – MarlynMarlyn realises, during the interview, that problem solving is a big part of caregiving.