Father recently diagnosed, where do I Start in helping him to get the best care?

[Didalju]

Hello I have never posted before but have been reading posts for the last month or so. After 18 months of neurologist visits my father has been finally diagnosed with PSP. Once we read about it sadly everything fell into place. Having overcome my initial shock I am feeling overwhelmed regarding where to start in helping my parents get the best care without frightening them too much. We went privately for the final diagnosis but I'm already confused as to how we get "in the system" to ensure my dad gets access to all the right medical specialists he will need. PSP care pathway document has been v helpful but still feels overwhelming. I have never felt so out of control before and helpless. Any responses would be gratefully received as I'm feeling completely lost at sea if I'm honest.

[dorothy-thompson]

Hi Didalju

If you live in the UK, the first thing to do is find out what financial help your father is entitled to and apply for it. Get him a good social worker who will take you through the minefield that is called "care in the community"

Then read everything, every article you can find and find out as much as you can about PSP and it's stages. But be reassured that not everyone gets all the symptoms.

Do not place too much hope in the medical profession because on the whole they know very little about PSP and it's affect on the sufferer or the carer.

Above all, take the advice I was given when my husband was diagnosed in 2010, always think and plan ahead, things can happen quickly.

Finally stay on this site for good practical advice and moral support and never be afraid to ask a question, scream and shout about your situation or just generally blog.

Take care

Dorothy Thompson

[hmfsli]

As Dorothy says, informing yourself is the first thing to do. You've started that process by downloading the care pathway. The easiest place is to start with where you at the moment, sorry if that sounds a bit obvious! Contact the PSP Specialist Advisor for your area if you are in the UK (info on the PSP Association website). As Dorothy said contact your local social services, they can put you in touch with a social worker who can advise on funding options. They can also arrange an Occupational Therapist assessment should you need equipment and adaptations. Depending on how old your Dad is, he may be eligible for Attendance Allowance or Disability Living Allowance (being replaced by PIP). You can apply online for these benefits.

Make sure your GP is informed and give them the link to the PSP website. Find out if there is a Community Matron for Neurology in your area. Ours has been invaluable. And, as Dorothy says, keep visiting this site. We're sorry to welcome you to our community but happy to be of support when needed.

h

[Hidden]

So sorry to hear about the sad news. however you have done the best thing so far and got on here for advice!

If your father is struggling already with understanding paperwork (which I strongly suspect) getting Lasting Power of Attorney for financial reasons is a good first move. Although it will cost money to do it it will save you a lot of grief in the long term. Be aware that the LPA dies with the person though so make sure things are in order at all times. No more than £20,000 in each bank/building society account means you won't need probate in the end but as far as after expenses like funerals etc you are allowed money up front regardless.Also check he has an up to date will so that his wishes can be followed.If you can get a medical part of the LPA done that is even better as you can stand by his decisions for him.

If you can make an advanced directive with him regarding tube feeding etc it will make you feel better knowing it is what he chose while he is still fairly good at making decisions. Not sure if you can get one online but any memory clinic in your area will have them to hand and possibly social services. Dis-executive Syndrome is another symptom of PSP, can come in early and basically it means they make strange decisions-for example after mum's house was sold and she was waiting for completion she not only got someone to paint the front of the house but paid cash up front to someone she barely knew-something she would have NEVER have done previously.Another day she fell because she was getting things ready for the carer! (tip of the iceberg here you will understand-there were many other things) Do get in touch with a Parkinson's nurse (they will be based at your local hospital) and definitely ask for advice on here as we have all been there and some are still struggling. Get help as much as you can because it becomes all consuming and exhausting, especially if you are working or have a family to look after too. There are voluntary organisations that can arrange someone to sit with your father or come with you to help with him while you do things such as shopping etc.

Take care and stay in touch!

Dianne x

[Hidden]

Go to pspassociation.org.uk/

Click on 'Just diagnosed'. Then click on PSPA Publications and then download 'Your personal guide to PSP'. This gives you comprehensive information about the illness and more importantly will tell you systematically about all the matters you need to organise and where you can help and assistance. Depending on the current condition of your father, you may also want to consider the following:

1. LPA for financial affairs and LPA for Health and Wellbeing

2. Living Will

3. Blue badge if your father or yourself are driving a car

Finally, also select at the top of the website of the PSPA 'Professionals' and download the file called 'Pathway of Care for PSP.

Finally, the PSPA has a helpline and it would be very sensible for you to contact them and explain your situation:

How to contact us:

Telephone: [phone].

Email: [e-mail]

PSP Association, 167 Watling Street West, Towcester, Northamptonshire, NN12 6BX

They have specialist care advisors who will assist you and help you.

Very important is that you get a team of support and that your GP is actively implementing some of the key support issues such as an occupational therapist, continuing care, palliative care (never mind that your father may hopefully still a long way away from that stage of the illness, a visit from a Parkinson's nurse, physiotherapist if applicable, etc.

Also check if there is a PSPA group in your area as they organise from time to time meetings where you can get a lot of useful information and help.

[SharonAB]

Dear Didalju,

What has already been offered seems like a good track to begin with.

If knowledge had been shared when my husband was diagnosed several years ago, I truly believe the path my family and I are now would have been quite different and alot closer than it is today.

I've come across people with other illnesses who have had the guidance of support of individuals and associations from an early stage and it has benefited their lives together. In many respects I am envious I hadn't come across similar til now, however am thankful that PSP Associations are now beginning to emerge (Internationally through the Internet) to assist others -

If my husband had just been diagnosed, the following organisations would have been very helpful- PSP Association UK, CUREPSP, PSP Association Australia, and TheAFTD Org.

Regards,

Alana - Western Australia

N.B. Yes - It is all daunting to begin with!

[coyle51]

Didalju,

Sorry to hear about your father. Like you I didn't know where to start and felt completely overwhelmed. I panicked all the time that I hadn't done this or hadn't done that but worrying just slowed me down. Finding this website has been really helpful. Just take one thing at a time and work your way through, you will get there. There is help out there, don't be afraid to ask for it. Good luck

Chrissie

[Didalju]

I just wanted to say an enormous thank-you to everyone who has responded to me today. I already feel much better informed and more importantly I'm feeling calmer as I realise I can only take it step by step. Not feeling quite so alone too has lifted my spirits. I will definitely be staying on this site and I hope I can be of some help in the future to those of you kind enough to write some words. Thinking of you all Nicky

[ultramodern]

Bonjour Didalju! Can well imagine your distress on hearing your dear Dad has been suffering from this unjust malady PSP. But Nicky, the good news is you could not have done better than to contact our great PSP Association,with its wonderful team of Specialised PSP Nurses always at the ready to listen.

It was the first thing I did as soon as my bride was diagnosed with it...and I live in Provence!

And of course this website, but it's since her death that I'm on Internret...'cos as her primary carer I don't think I would ever have had a moment to sit down and chat on-line!

All the replies you got are all spot on.As you've discovered there's not really much out there yet in the way of treatment but the medical profession can be of help in alleviating symptoms to make your Dads life more comfortable.

Just keep calm ,Nicky, and carry on...with the PSPA!

best,brian

[shasha in reply to ultramodern]

HELLO BRIAN - I LIVE NEAR LIMOGES AND HAVE FOUND THE PEOPLE AT PSPA ARE WONDERFULLY HELPFUL - I AM THE ONE WITH PSP AND MY WONDERFUL HUSBAND IS MY FULL TIME CARER - HOW ARE YOU COPING NOW YOUR WIFE HAS SADLY GONE?

[larches]

I too can imagine your distress on hearing your Dad has this cruel disease when my husband was first diagnoised 2 years ago we did not know who to turn to we found the psp website and were given so much help and guidance on what help my husband was entitled to I was his main carer but also had carers coming in 3 times a day also got great support from hospice Sadly my husband passed away on the 12th September I take comfort from this site also knowing my husband is now free from this cruel disease I feel for everyone on here who has or are caring for a loved one will be thinking and praying for you all judy

[ultramodern]

Bonjour Shasha...thanks for your kind message...but the fact you have been diagnosed with PSP isn't the best news of my day. The very good news however,is that your hubby's caring for you. Take my outstretched hand and put it there 'cos more often than not when a diagnosis is made--exit Hubby! But I'm happy to see on these pages so many loving couples stick together....in sickness and in health ,thick and thin...and it does unfortunatley get to be thinner.

In answer to your question...I'm coping well. I just continue running our home doing everything as I had to for the final two or three years.But shopping & cooking for one luckily I have a wonderful lady continues to come in and keep it all clean and tidy.Plus other chores.

As we had a large family of nine children they have been and are keeping an eye on me, and visit regularly so i've no complaints whatsoever. I'm so lucky in that the folk in the village where we lived are just wonderful people.

Sorry to ramble on Shasha. Just please make sure that your Primary Carer does have some time to himself that he gets sound sleep ...much easier if you have a home help who comes in each day to take over.

I'm sure there are local groups in Limoges whom you or Hubby can contact.

Thats's all for now. Keep your pecker up Shasha...keep in touch with PSPA...I also belong to the French group who strongly rely upon PSPA for news .It was thru' them that Jo's brain was donated to the Paris Brain Bank.

Keep smiling you two ...Love brian

[Sayer]

Didalju

If you are in the UK see your Dr and get registerted as a carer.