My mother doesn’t speak anymore which I think is one of many cruel symptoms (PSP) and is eating only puried food now. Also, bedridden now. The hospice nurse comes once a week to see her at her ASL. Her vitals are all still good which I always find intriguing. Her urine is slowly discoloring. How long can this go on ??? My father-in law had ALS 20 years ago and I’m trying to remember his last months . Yes, our family has been hit twice with these 2 similar diseases
Cindy her daughter
My mother is pretty much at the same point (including the good vitals). The hospice nurse covered a few signs with me (like abdominal bloating - which hasn’t occurred so far). Maybe your hospice staff have some insight that might be helpful?
We used powered stand aid on strong days and hoist on weak days to transfer to careflex chair supplied by social work OT so we’re never bed ridden which I believe helped with digestion.
Puréed food was thicker at first to prevent choking but then went thinner again as mouth/tongue transport declined. All managed by speech & language therapist.
I would say several years of not talking and puréed food.
How’s her overall conditions other than the food texture? My mom is similar, she’s been on puréed diet since November/December of 2020, and no longer speaks since September of 2020. But she deteriorated quickly so now puréed poultry is no longer an option because she would just keep coughing and the food ends up causing excessive mucus in her nose. We are mostly just doing veggies, ice cream and anything she requests for.
She is eating less and less because how uncomfortable eating has became for her, lost about 10 pounds within a month, but in the past week seems to stabilized a little bit.
Even with that, she still has good and strong vitals, mentally still herself, just being trapped in the body by this disease.
Will your mother be okay with a feeding tube if that becomes an option, regardless of her other conditions I’m sure a feeding tube will prolong the process and have her around longer.
So sad that your family experienced these terrible diseases twice, hugs.
You can see my post earlier. My mum passed this week. She started on purées a few months ago & lost her ability to speak around then. Significant weight loss in the last 3 months. She died peacefully in her sleep in the end.
Thank you.
One year on
Can anyone offer me advice on how to do my bit when I live a long way away from my mum?
Back again - but for how long? 
How long has you or your loved one had PSP?
