My mums story so far

[Donna41]

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

[jillannf6]

hi donna

sorru 2 hear of your mums decline with the Psp= there is no rhyme or reason why a person should suffer or not in this life- i am so pleased that i ahve the care from my gp/ consultant adn all the additional help like you mention ( not co-ordinated but we cannot expect miracles in the preesnt tclimate of cut -backs!)

Friends and neighbours are as important as family and need explanations about thisi disease as much as the patient

I have Psp and get so much help and suppport from the Assoc and this website plz keep blogging ,/ smiling and keep up the fantastic work u r doing for you mum

lovejill

[Donna41 in reply to jillannf6]

Thank you for your kind words. It's been some time since I checked out the responses . Unfortunately Mum died on July of this year and I hold on to all the happy memories as much as I can.

[LesleyB]

Hi Donna

The speed of the progression is unbelievable and having been through that quick decline with dad can understand how you feel. The speed of the progression was something that the professionals who worked with dad didn't seem to understand and its good to hear that even though you have had to do a lot of the co-ordinating you seem to have a really good team of people around your mum. Your mum and dad also have you and you are doing everything you can for them. Rules are meant to be broken they say and I would imagine your mum would have loved her time away and just the touch of you helping her to do things. I struggled with things such as was I taking his dignity away by doing things for him and with him, but I only had to feel that little grip as he held my hand or small smile to know he appreciated everything we did.

Take care of yourself Donna and I send my love to you, your mum and your dad.

Lesley

[Donna41 in reply to LesleyB]

Thank you for your kind words. It's been some time since I checked out the responses . Unfortunately Mum died on July of this year and I hold on to all the happy memories as much as I can. The progression and deterioration sent us all in a spin, were all still trying to come to terms

Dx

[Fiona_McL]

Hi Donna

The progression is so horrible- especially if there's been a bit of steadyness, and you've been lulled into a false sense of security for a wee while. You're doing an amazing job with your mum- I'm sure she loved to be at the caravan. You have to do whatever works for the whole family.

My mum was at home with loads of carers coming in and when she went for respite, we realised how much better she could be cared for there. She visibly relaxed herself and was less anxious. She stayed in the nursing home for 2 years, but was able to spend some afternoons in her own house, with a carer, just to feel normal and still connected to her world.

Look after yourselves

Fiona