Anybody in Leicester, my husband has PSP.. 3-4 years in now.

[Bestwestie1]

Anybody in Leicester, my husband has PSP.. 3-4 years in now. We just got referred back to the General Hospital Neurology, after spending 3 years under the young Dementure team. 5 differant scans done, but no conclusive results there. Just many PSP symptoms, so the Doc feels thats what it is. Does anyone know whether getting Power of Attorney is worthwhile?

[Millidog]

Hi, I'm not in your area, sorry but wanted to respond about POA. I would say definitely yes get both in place - the health and finances poa's. It can be extremely helpful to have the health poa completed and registered on husbands medical records as all medical professionals will involve you and defer to you if your husband is struggling to make himself understood, if he becomes unwell etc rather than leaving you out of key decisions. Additionally having the finance poa is useful if you have any finances, utilities, car, household items / bills d/d etc in husbands name as again you can act on his behalf. Sometimes this is cheaper and easier than changing things over to your name as than can mean a closure of an account at cost and the need to open in your name eg BT. Other things to consider if you haven't already - DNR decisions, Advance Directive - legally binding & Advance Wishes -preferences. Both cover all about future plans, if unable to communicate what he would like eg to be read to, music, food types etc, care at home, hospice, care home preferences, funeral wishes about wishes on treatment type, location etc eg whether your husband would want to go into hospital for any treatment/ reversible conditions, or not at all, if he would have a PEG tube etc. Additionally if you haven't already do explore PIP benefit, Carers Allowance, and do talk to the PSPA helpline as they have lots of guidance on all of the above and more. If you have any other specific questions again do have a look on the PSPA website where there is a considerable amount of resource info and of course come back to this site with all your questions about specific issues - you'll find extremely helpful and caring people and a vast amount of experience

[Zerachiel]

Hi Bestwestie1

There is a local PSPA group at Leicester, the next meeting is 2-4pm Saturday 5th April at the Loros Hospice on Groby Road.

pspassociation.org.uk/venue...

[Bestwestie1 in reply to Zerachiel]

Thank you, thats is so helpful.

[Blitzford72]

Yes definitely is have had this with my mum over the past 18 months it really helps

[Kiwitch]

Definitely get POAs for finance and health and welfare.

Also speak to PSPA about how to access continuing healthcare funding if/when you have to access nursing care.

My husband has been showing symptoms for 10 years diagnosed 3 years ears ago now in late stage and in a nursing home.

If you have POAs everything is easier to sort out. PSPA and age concern can help you with funding ranging from attendance allowance to CHC. The forms for funding are complex get help to complete them

[Bestwestie1 in reply to Kiwitch]

Thank you for your advice.. it's hard to think we will have to walk down this road.. It's good to know there are places you can get help from.

[Birdie04]

Hi so sorry to hear about your struggles getting diagnosis. Has your husband had CT, MRi and PET SCANS? It took us 2 years to get a diagnosis from a neurologist, at the time of first investigations my husband was 58. Though it is a different journey for everyone and stmptons differ. I would suggest get the health and wealth LPA'S in place as soon as possible. Also perhaps give the PSPA helpline a call, they are absolutely wonderful and can help you with many things that perhaps you haven't thought of.

I wish you luck in your journey

Take care

Xx

[Bestwestie1 in reply to Birdie04]

Yes he has had CT, PET & MRI x 2.. one just recently. They offered a DAT scan, but my husband is not keen. It sounds like without this next scan the Doc can say, he has PSP symptoms.. nothing on other scans though.. just symptoms which seem to be getter worse. x