July 2008 - My husband passed away from PSP just three months ago. Over the years since being diagnosed we have had our ups and downs, mostly ups because we both refused to spend our days regretting. PSP was here and my husband and I handled it to the best of our ability. Most certainly there were times I hated what was happening to him as he had been a very vibrant and energetic man but he was so courageous. When problems arose we tried to resolve them, i.e. incontinence (extra heavy pads at first and then pullon pants), getting up at night (bedside commode), trouble getting out of the chair (we bought an electric lift chair -wonderful!). I purchased plates with a colourful border so he could see the food on the white background in the centre. So many things are easily overcome - one just has to be innovative.
I rarely missed the opportunity to make him aware that I loved him so very much. When he stood up I would hug him - we would sway back and forth to music. Our lives were enriched by the closeness which developed because of PSP and as I said goodbye to him I knew that as he went to the Lord he had peace in his heart, and I had peace in mine because I had honestly done my best in walking beside him on the path PSP took us.
For those caregivers who complain how hard it is, I know it is hard, but it has to be devastating to the patients to be aware of the caregiver's frustration and not be able to do anything about it. Facing the journey with PSP really is about love, commitment and making each moment count because when our loved one is no longer here it is also hard.
jmangini@bellsouth.net
Permission to use given by email July 29, 2008