recent diagnosis

[ChocolateFlowers]

Hi all. my 82 year old mum had been having niggly issues I took her to the GP for, for about 5 years (I now believe they were the first symptoms, then 2 years ago started falling and this past year, has tended to push backwards when getting off the loo. GP not interested. Eventually the memory clinic felt her issues were not dementia and suggested neurological, so we paid (33 week wait), to see someone who has said she has PSP. We are paying to see Dr Ghosh in Southampton in June in the hope he can give suggestions on what to do / how best to help her. I don’t think she took in what the neurologist said and I’m not sure how best to explain what is happening. She is already so fed up of coughing all the time and walking so slowly and being dependent and was so looking forward to being able to take care of herself with the aid of carers when she got better. I am presuming that this is not possible now. I want to take care of her but I cannot afford to buy something big enough for her to live with me permanently, so she would have to sell and buy in with me, which takes time. I’ve contacted the PSPA but I’ve no idea what I’m supposed to do now to make things as better for her as I can. I am sorry, for my long post and that I sound like I am moaning but I am feeling devastated for my mum and so overwhelmed and lost and don’t know where to start.

[David750]

Hi Chocolateflowers, I am so pleased you are in contact with the PSPA. Their Helpline Care Navigator, for your area, can direct you to local support. It is essential you contact your local social services for a visit by an Occupational Therapist to advise on facilities you need to put in place ahead of sorting out your house with money raised from the sale of your Mum's. Professor Ghosh will be very helpful. There is always a long wait for Professional help these days, sadly when you are needing instant resolutions. From my experience looking after my wife with PSP all facilities, sleeping, showering & toileting, have to be at ground level even if it means building on a wetroom if space allows. All my very best wishes for this difficult journey for you 🙏

[Kelmisty]

Hi,

I guess it depends on your Mum on what she needs/wants to know, My Mum has never asked what is going to happen or could happen - also not everything happens to the person. I wanted to know everything as I need to know for future planning.

Also, she might have other underlying health issues which still happen and cause other things,

She will need 24/7 care as things progress. This is an illness that does progressively get worse, it’s so hard to accept,

I know looking after your Mum is what you naturally want to do, I did for almost three years but this illness does get extremely hard and exhausting for carers, ideally you need more than one to look after her. My Mum is in a nursing home now as she has needs all day and night which is what she needs, also specialist care for many things, in the future they will need more specialist equipment which you can get at home, but need the space for it all too. There is no wrong in saying I can’t do it and looking for a good nursing home when she needs it.

This diagnosis hits everyone hard, allow yourself time to process you need to and seek help and support from others.

My experience so far, my Mums only 71, retired and pretty much went down hill quickly estimated about 7 years into her journey now,, it’s insanely hard at time, but there’s no where else I’d rather be. I have moments of grief but then have to pull myself together for her and keep going.

If the PSPA are able to offer you any counselling, with the charity they work with, take it - it really helped me.

If she has had her formal diagnosis, you can ask the GP to refer to Occupational Therapist, Speech and Language Team, Neurological Physiotherapist, Parkinson Nurse (they cover PSP generally too) and your local hospice (they are amazing help, can support on what your mum is entitled to, get through referrals quicker sometimes, help with any drugs/pain relief if needed, ours have been amazing support when I was looking after Mum in her home, they are about living well with an terminal illness not just the end).

The PSPA offers some great advice and guidance, definitely worth the engagement.

Xx