We had a meeting with a team of doctors etc at the hospital where my mum is being treated for a very resilient urinary tract infection and they have pronounced her in the final stages of PSP.
As we all know, as knowledgeable and well meaning as doctors are, even they don't have all the answers with PSP. He feels she is 10 to 15 years into PSP now but she was only diagnosed 2 years ago. We feel that 10 years is an outside figure and that it is probably more like 8 years. I guess that is irrelevant as there is no doubt that in the last 2 months she has gone from walking with assistance, saying the odd word, having a great appetite and still managing most foods to a skeletal, bed ridden shadow of herself.
The decline started with aspiration pneumonia, now this infection and she is eating about 4 or 5 spoonfuls a meal and seems unable to open her mouth without almost prising it open. She swallows so slowly and mostly she just sleeps. She has lost 18 kg (almost 40 pounds) in about 2 weeks.
It is difficult for us to take this on board because the decline has been so fast! There is a part of us which believes that if we could just get her home, feed her up, get her strength back up then she could get back to where she was before.
The hospital are telling us differently. They say she will never put weight back on, that with a progressive illness, people do not bounce back from infections as they don't have the resources. That they just plateau at a new (and lower) level. They are saying that the best thing to do is not to fit a PEG but to let nature take its course, that she will eat less and less, get weaker and weaker and pass away.
We are so confused and want to do the best thing. I think my dad is leaning towards having the PEG fitted as he would feel so guilty to let her 'starve'. I am trying to think what is best for my mum as I feel he is making the decision from an emotional place, of course he is. It is such an emotion-filled time for us.
The doctors also told us that she will have dementia for certain at this point, but even this, we are not sure of as she cannot communicate with us. We don't want her to suffer and we don't want to give up on her.
What we are wondering is if anyone has had a similar experience and their person with PSP has rallied and generally got a little better (strength, alertness) after having a PEG fitted and gone on to have some quality of life?