People find it really difficult to hear about illness says Barbara.
Transcript
I was considerably more alone in the caregiving for your spouse situation because friends that the two of you had simply avoid you—as if they weren’t already because I had MS. So, friends vanish. They really do. They don’t know what to say. They don’t know how to deal with these new people. So you’re much more alone to begin with. Friends don’t want to hear about it, they really don’t. If you’re talking about your kids, they’ll listen for hours; if you talking about a sick husband on morphine, they don’t want to hear about it. It’s too real. That could happen to them. It’s scary and it’s…there’s very, very few support groups for people caring for an ill spouse.
There’s… you can’t talk to your children or stepchildren because it’s about their dad and your personal and physical relationship with their father— that isn’t something you talk about. It’s different with your parent. If you’re changing your parent’s diaper, it’s an expected thing because of all the jokes about how you’re born with peeing and you needing a diaper, and then you get old and you need a diaper. There’s all that standard stuff. How much do you see about one spouse or both spouses being unwell? […] There just isn’t a lot of conversation about this. But it happens. And there’s more conversation about if your spouse gets dementia than there is if your spouse gets physically ill. There’s just not a lot of conversation about it.
There’s this… If you’re talking about being really angry at your spouse because he’s got arthritis or heart problems or he’s whatever, you’re not being a good spouse. You’re just not. You’re there in sickness and in health. Suck it up. Just do it. And yeah, it leaves you very, very isolated with all of your feelings about caregiving a spouse.
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- What is it like to be a caregiver? – BarbaraFor Barbara, the experience broadens people’s minds.
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- Society and caregiving – BarbaraPeople find it really difficult to hear about illness says Barbara.
- Resources – BarbaraBarbara found it really helpful to learn what to expect when you are caring. She found out about the support group through a medical professional.
- Personal growth and transformation – BarbaraThere is an incredible amount of joy in caregiving, says Barbara.
- Navigating the system – BarbaraBarbara was very concerned about bringing her father home, and did not know where to turn when she was told that he would have to leave the hospital.
- Interaction with professionals – BarbaraAfter a disagreement with her father’s physician about his ability to drive, Barbara’s father had a seizure while driving.
- Caring for yourself – BarbaraThe situation may be sad and tragic, but don’t be afraid to enjoy funny moments, says Barbara.
- Advice for professionals and society (2) – BarbaraBarbara would like doctors to recognize that caregivers are an important part of a patient’s circle of care. If caregivers are engaged, then doctors' jobs are easier.
- Advice for professionals and society – BarbaraBarbara thinks that physicians can help people identify themselves as caregivers and help them find support.