As a caregiver, sometimes the frustration associated with trying to understand why Mom does what she does is overwhelming. I know she has a brain disease, I do everything I can to learn everything there is to know. However, there are many days knowledge just doesn’t help end the frustration.
Listening to someone living with dementia and what it’s like is a window into understanding. It’s the closest we can get to complete understanding of what it’s like to live with memory loss. That’s why my conversation with Janice Swink, a woman living with mixed dementias was so powerful.
Janice described symptoms I’d not heard of and detailed some I had. I was unaware of the possibility of scent hallucinations until Janice told me about hers. I was aware of visual hallucinations, something she also has to live with.
In addition to the challenges that come with living with dementia Janice details some of the social stigmas she has to put up with. People who tell her she doesn’t look sick (she refrains from telling them they don’t look stupid). Using her walker gets her understanding and patience but the electric cart does not.
One challenge Janice described was the inability to remember that she was having symptoms of a urinary tract infection. This caused an unnecessary delay in being treated and another day or two and she would have been hospitalized. If you listened to last weeks episode on my state advocacy day, this is the challenge the state of California is trying to address.
A Dementia Warrior
Janice is a warm and funny woman and our conversation was terrific. She makes videos for Facebook and Twitter. She posts about what it’s like to live with dementia, dancing videos and even what bad days are like.
Listening to this episode will greatly increase your understanding of what living with a dying brain is like. Hopefully, it’ll also help the normal feelings of frustration be a little less overwhelming.