For months now I've read the heart felt stories, issues and events of tthat of carers or for those who have or had an eventuall diagnosed with PSP. I've found the whole process partially cathartic and reassured that other-people have an understanding or ask the same sensible questions. Unfortunately the speed of my mums disease progression has been difficult to come to terms with. PSP acts in an individual and mysterious way. Mum is only 64 but experienced her first falls around 3 yrs ago. She started haullisinating and had a delayed speech and eye movement about 18 months ago, and experienced urinary retention In the last 6 months mum has required home care. Her ability to stand, balance and walk declined. 2 months ago she was catheterised and developed pressure sores. Now she can't walk without 2 peopple assistinfg, more than 5 steps without tripping over her own feet and her facial muscles don't work as well.She's had to live upstairs in one room untill my husband and I find inventive ways to get her down stairs. She's lost about 4 stone in weight and needs feeding most of the time. I support my fabulous dad who is dedicated to caring for my mum. Im a nurse yet can only congratulate him as he continues to care for mum at home. Being realistic, he struggles to cope mentally and emotionally, although determined we may have a breaking point. Against district nurse advise we took mum away for 5 days on their static caravan recently I gave my mum a bed bath and washed her hair in the most difficult of circumstances. Broke every rule in the book in terms of manual handling etc. I consider our situation as soul destroying ,extremely heartbreaking, difficult, and unfair. Like many others have already described PSP as the living bereavement because the disease strips the suffer of independence and dignity. It leaves the family and carers with life deprivation, stress, anxiety,responsibility, guilt and heartbreak. I have spent the last 6 months discreetly crying because I understand what the future potentially holds. Mum has been into a care home to enable some respite. I fully understand and acknowledge those that have had to realise the 24/7 caring responsibilities and accepted that care homes as their only option. For nowI am glad and eternally grateful that mum has had inter professional help from the GP,home care, social workers, physio, podiatrist, dietitian, district nurses, speech and language therapist, equipment from loan stores, manual handling advisor, domicillary dentist, occupational therapist ......all of which are brilliant .and some needed co ordinating/ convincing/ rocket up their jacksey by dad and myself, which comes at a price. Thanks for reading and allowing me to share Dx
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