Thanks for this. A friend’s wife is living with aphasia and early onset dementia. They have a teenage daughter. The situation is heartbreaking, including the isolation of caregiving.
Interestingly - there's also nothing in the way of support for people with cognitive impairment that isn't even dementia and isn't progressive! I quite literally just walked in from an appointment with a neuropsychologist with my dad who has lost his ability to make short term memories due to oxygen deficiency that has now been treated. I can't even get an answer to whether there are rehab or memory therapy options that could help him exercise his memory....or if that's even a thing? I also have no options for a person to help us set up systems to help him do his daily routine without an actual person taking it over for him. The first stop for all of it is just having him be supervised by a caregiver, which is just bonkers?
At this point we have home health because my mother is significantly physically disabled due to a stroke - so I am able to not just become his mom becuase there's someone else who will be his mom. But why isn't there anyone who will come and help him determine the best ways for him to still run his own life? Or like, at least participate? I have to just google a lot to find resources for "try a to-do list," but I don't know how to adjust it for him, or what the best way to help him determine that stuff is - and also HE'S MY DAD AND HE'S SO ANNOYING AND OMG I CAN'T DO THIS PART BECAUSE ALL I DO IS YELL AT HIM. My last question at this appointment was "is there anyone who can help us like..come up with systems and infrastructure to like...tell us how life should work now?" and the answer was "no." We can only get an OT to do a safety assessment, so like...all the things I've already done because keeping someone physically safe is actually fairly simple to look up. And the neuropsych was like, I know what you're asking, like I can tell what you mean but there isn't. Um.....ok??
Really appreciate this rec, I'm going to listen this week. My dad has a severe brain injury and (after his mom fought for guardianship of him) put him in a nursing home when he was 50. And now my partner has brain cancer that may lead to aphasia. So brains are on my mind a lot, especially the lack of care and options. Disability justice is gonna save us all.
I listened to this very good episode of Invisibilia yesterday: https://www.npr.org/transcripts/817977005. The host keeps trying to get the subject to metaphorize her experience into her own experience of climate change, which is crazy making. But there's a woman in the story living with Parkinson's who thinks of it as a condition she can manage rather than a disease that will kill her, and it makes a huge difference in her life.
Thanks for this. A friend’s wife is living with aphasia and early onset dementia. They have a teenage daughter. The situation is heartbreaking, including the isolation of caregiving.
Interestingly - there's also nothing in the way of support for people with cognitive impairment that isn't even dementia and isn't progressive! I quite literally just walked in from an appointment with a neuropsychologist with my dad who has lost his ability to make short term memories due to oxygen deficiency that has now been treated. I can't even get an answer to whether there are rehab or memory therapy options that could help him exercise his memory....or if that's even a thing? I also have no options for a person to help us set up systems to help him do his daily routine without an actual person taking it over for him. The first stop for all of it is just having him be supervised by a caregiver, which is just bonkers?
At this point we have home health because my mother is significantly physically disabled due to a stroke - so I am able to not just become his mom becuase there's someone else who will be his mom. But why isn't there anyone who will come and help him determine the best ways for him to still run his own life? Or like, at least participate? I have to just google a lot to find resources for "try a to-do list," but I don't know how to adjust it for him, or what the best way to help him determine that stuff is - and also HE'S MY DAD AND HE'S SO ANNOYING AND OMG I CAN'T DO THIS PART BECAUSE ALL I DO IS YELL AT HIM. My last question at this appointment was "is there anyone who can help us like..come up with systems and infrastructure to like...tell us how life should work now?" and the answer was "no." We can only get an OT to do a safety assessment, so like...all the things I've already done because keeping someone physically safe is actually fairly simple to look up. And the neuropsych was like, I know what you're asking, like I can tell what you mean but there isn't. Um.....ok??
Really appreciate this rec, I'm going to listen this week. My dad has a severe brain injury and (after his mom fought for guardianship of him) put him in a nursing home when he was 50. And now my partner has brain cancer that may lead to aphasia. So brains are on my mind a lot, especially the lack of care and options. Disability justice is gonna save us all.
I really loved this missive, Jacqui. It deepened the way I think about some painful things in my life. Thank you and keep writing.
I listened to this very good episode of Invisibilia yesterday: https://www.npr.org/transcripts/817977005. The host keeps trying to get the subject to metaphorize her experience into her own experience of climate change, which is crazy making. But there's a woman in the story living with Parkinson's who thinks of it as a condition she can manage rather than a disease that will kill her, and it makes a huge difference in her life.