PSP Association
5,549 members7,573 posts

Having John home

Although I have followed site for a long time this is the first time I have posted. My husband was diagnosed with PSP in 2015 but I know he has had it a lot longer than that. John has been in a care home for the last four months following me breaking my wrist. I went to the meeting on Tuesday which was amazing and having talked to several people I have decided I am going to try and have him home with care in place. If I don't try I will always wonder. Have been declined for CHC. Thanks Amanda for arranging Tuesday and to everyone I spoke to. I hope to make the next meeting before I am tied to the house.

12 Replies
oldestnewest

Hello lovely lady!!

I’m so pleased you’ve joined us!!

You absolutely NEED to ask for another assessment for chc!! Do you have a hospice involved? If not, get the gp to refer John to them!! You will NOT be able to manage on your own, I know that after meeting you! How much care are you hoping to get? Ie how many visits per day? Your gonna have to fight for chc!!

I understand the stress involved only too well but you have to put up the fight of your life! We can help you with advice on trying to get chc, but you must now ask for a re assessment! Getting chc is NOT easy by any means, but if we don’t fight for our loved ones, who will?

Really enjoyed meeting you and hope you can make the 20th

Amanda x

1 like
Reply

Pauline so glad you found out how to post xxxx

2 likes
Reply

It was lovely to meet you on Tuesday.

Absolutely worth reapplying for CHC funding. Has John had recent Occupational, Physio and Speech therapy assessments - those will help you plan care at home and be useful for CHC funding applications.

It is a big decision to bring John home - inevitably it will be a huge physical challenge for you.

Do take care and hope your strength and movement in your wrist hand continue to improve.

Love Tippy

2 likes
Reply

What is CHC?

I am Canadian, help is very easy to get here, where are you?

They offered so many times but my hubby didn't want anyone looking after him but me.

And in Canada it's free

Reply

Hi Mandy, I'm Canadian too. Where are you?

Reply

Do not give up regarding CHC funding. PSP is a very very complex and unpredictable illness something you need to stress when reapplying. It is not an easy process and grab with both hands as much help and information as you can. Funding for my hubby was initially turned down but funding was given when a second check list was done. For those of us that have walked this road know how difficult and stressful this can be....but come out fighting....you can do it. Love Jxx

2 likes
Reply

Thank you. Glad if any advice x

Reply

As Amanda has said it is a massive fight to get the right support in place.

Really hope you manage to get everything sorted and CHC agreed. Have you a social worker now to help get care at home set up?

1 like
Reply

Just ordered a book from Amazon called the last dance at the Savoy, wonderful read and exactly the same symptoms we went thro

Till the end

1 like
Reply

Hi Mandy 2015

My husband ( with PSP) and I read the Last Dance at the Savoy about 18 months ago .a very moving story., Even the title poignant for me as we had several dates at the Savoy. I could see so many similarities in my hubby’s impulsivity etc and my husband could see no similarities at all - the insight of PSP!!!!

Continuing Health Care (CHC) funding is for complex health needs - such as PSP. Whilst our NHS is free at the point of delivery social care is means tested.

Love Tippy

Reply

So lovely to meet you Pauline, hope the wrist heals fully very soon and that you get the funding for John asap, are you still pursuing it? Even if having him back home doesn't work out at least you can say you gave it your best.

Sending lots of love

Kate xxx

Reply

Fingers crossed for you, Pauline. You can only do your best - but don't insist if its too much. There's no glory in wearing yourself out !!!

Big hug from Jean xx

Reply

You may also like...