Amanda and Kevin's recent post has spurred me on to come out of lurk mode and post something.
My mother-in-law, Olive, was diagnosed with PSP about 6 months ago, having been misdiagnosed with Parkinson's 2 years previously. She's 76 years old, lived in North Wales all her life but moved down to a Nursing Home in Cardiff near to us just before Christmas. This time last year Olive was an independent, funny, generous and mobile person. She is now unable to walk or feed herself. It's heart-breaking and so cruel.
My husband and I have found this forum invaluable over the last few months and I just wanted to say thank you! Kevin's recent re-post comparing PSP to a child's behaviour was spot on and really struck a chord. It really helps to read posts like these to confirm you're not going mad and not dealing with this on your own.
The one aspect we're not coping with very well is the change in Olive's behaviour. It's so upsetting. We've searched through the archives and found some older posts about aggressive and emotional behaviour, which has helped, but I just wondered if anyone out there had any further advice for dealing with aggressive behaviour? Each time we visit (every other day) we get a different Olive. The hardest Olive to deal with is when she's shouting and screaming, kicking, knocking things off her table on purpose, stamping on the footplates of her wheelchair. She's rude to the staff and other residents. I know it's the illness taking over, but it's heartbreaking to see such a change in personality. When she's not being aggressive she's either uncommunicative, tearful or (very, very rarely) almost back to her usual lovely self.
So, every time we visit, it's deep breaths, big smiles and hugs and lots of cajoling. It's emotionally draining, as I know you all appreciate. It doesn't help that my own Mum had a serious stroke 4 years ago and is also wheelchair bound. Luckily she's still able to live at home, with visits from carers, but it does mean we've two sets of Mums to look after now! We're extremely lucky that Olive qualified for CHC funding and my Mum can afford carers, who are all wonderful. And then there's the guilt...the guilt of not being with them 24/7...the guilt of walking away...and not being the ones caring for them 24/7...
Oh well, onwards and upwards. Thanks for reading. Thanks again to everyone who contributes to this forum and for all the valuable information which we devoured when setting out on this PSP journey (from hell).