Priorities and scope of care

A few weeks ago, I had a long phone chat with a caregiver that confirmed what I suspected: some caregivers feel that persons around them only keep thinking of what more the caregivers can do for the patient, without sparing a thought for the wellbeing of the caregiver.

This caregiver, let me call him/ her Emm, is handling fulltime support of a parent with dementia, alongside the responsibility of running the home and earning the money to do so. When Emm first contacted me, the parent (who had several medical problems) had not yet been diagnosed with dementia, but Emm had chanced upon my website and realized that the parent’s behavioral oddities could indicate dementia. Over several long calls, we discussed multiple aspects of caregiving and future planning. A formal diagnosis was obtained after a few months, and Emm’s self-education on dementia proved helpful in extracting more support from the consulting doctors than they were voluntarily offering. Emm also joined multiple forums to connect with volunteers and caregivers. Caregiving has subsequently stabilized.

In our last catch-up-and-chat call, Emm expressed disinterest in discussing dementia or knowing more about it. “I do not want to think about dementia” were the exact words. The parent was stable, seemingly content, clean, fed, with all medical checkups up-to-date. Emm wanted to use this stable period to work hard and build savings. Having already read up enough on dementia, Emm was confident about being able to recognize if the symptoms were worsening, and would contact me or others for help at that stage. “I hope you don’t mind if I don’t like to talk about dementia,” Emm told me.

I’m not exactly fond of talking about dementia myself, I said 🙂

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