My ex husband (we separated after 43 years -amicably) suffers with PSP. I have been his carer for the past two years but he is now in a residential home. He appears to have settled and I know that he is in a safer place as his falls had increased and his eyesight is so poor he is virtually blind. Unfortunately it is me that is not coping if I don't visit every day or take him out I feel terribly guilty, I just cannot bear the thought that he is in his room 24/7 with just the tv and his radio (which he often presses the wrong button and then is unable to listen) Friends and family are very supportive and say I should make time for myself. Unfortunately I feel that not all the staff at the home are aware of PSP even though I have printed material from the PSP site and passed to them. I think I would feel much happier if I was sure that they understood the effects this awful illness has on the patient.
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