TL;DR: my mother is in the later stages of nfPPA and if you know of little-known 'tricks' on how to communicate, I need to hear them... please.
Hi, I really hope you can help me because I'm starting to become desperate. My mother was diagnosed with cognitive issues back in 2016, Alzheimer's in 2018, and following a lot of efforts we were able to narrow it down to 'fronto temporal dementia' and 'non fluent primary progressive aphasia'. Last mmse score was 13.
She and I (she has no other family or friend) have been soldiering on and fought this disease tooth and nail since the very beginning. She's in the right place (dedicated assisted living), with the right staff (including a private caregiver) and takes all the right meds. I try my best to construct a social life for her.
The aphasia was tough to deal with psychologically from the beginning. Eventually she became almost mute but we could still 'communicate' in the sense that she could understand me. As you know, that disease eventually robs you from the ability to comprehend both written and spoken language and now she's turning not only mute but also looks confused despite my best efforts at non-verbal communication.
I know you probably already know this but for the sake of completeness I tried various other ways to communicate including both tools and technology where you can click icons on a tablet, exchange printed symbols on cards etc. Over time though, the icons have lost their meaning and the tools are more of a hassle than fun, so we had to stop that.
Which leads me to today: for the first time in caring for her over 4 years I felt she had lost the ability to even express something was wrong - and while in the past we both were able to 'shrug it off' and find alternative ways to help, this time, I wasn't able to resolve her issue, whatever it might have been. It broke my heart.
If you know of absolutely anything that might help continue 'communicating', no matter how basic, please do share, no matter how far fetched it might sound.
Thank you.
Hi, I really hope you can help me because I'm starting to become desperate. My mother was diagnosed with cognitive issues back in 2016, Alzheimer's in 2018, and following a lot of efforts we were able to narrow it down to 'fronto temporal dementia' and 'non fluent primary progressive aphasia'. Last mmse score was 13.
She and I (she has no other family or friend) have been soldiering on and fought this disease tooth and nail since the very beginning. She's in the right place (dedicated assisted living), with the right staff (including a private caregiver) and takes all the right meds. I try my best to construct a social life for her.
The aphasia was tough to deal with psychologically from the beginning. Eventually she became almost mute but we could still 'communicate' in the sense that she could understand me. As you know, that disease eventually robs you from the ability to comprehend both written and spoken language and now she's turning not only mute but also looks confused despite my best efforts at non-verbal communication.
I know you probably already know this but for the sake of completeness I tried various other ways to communicate including both tools and technology where you can click icons on a tablet, exchange printed symbols on cards etc. Over time though, the icons have lost their meaning and the tools are more of a hassle than fun, so we had to stop that.
Which leads me to today: for the first time in caring for her over 4 years I felt she had lost the ability to even express something was wrong - and while in the past we both were able to 'shrug it off' and find alternative ways to help, this time, I wasn't able to resolve her issue, whatever it might have been. It broke my heart.
If you know of absolutely anything that might help continue 'communicating', no matter how basic, please do share, no matter how far fetched it might sound.
Thank you.