PSP Association
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Any advice appreciated

Hello All. It's been quite a while since I last posted. My Dad was diagnosed autumn 2013 and initially our main issues were Dad's rash behaviour, personality changes, choking and eyelid dyspraxia. As a family it has taken us quite a while to come to terms with the diagnosis and the impact it has on the future. My way of dealing with it has been to read up on absolutely everything and try to plan. My parents and my sister have taken the other route of being in complete denial and not wanting to know anything. I understand this as a coping mechanism but have found it very frustrating to manage. My sister and I have tried to split our roles, I live 2.5 hours away from my parents so can't see them day to day. I've taken on managing my parents finances and managing Dad's healthcare support to date. My sister does the popping in most days to check up on them as she lives 15 mins away.

After a year of holding onto the crossroads organisation info until my parents felt ready to accept the first step of a sitter they finally relented a couple of weeks ago. A good step forward to give mum a bit of a break from Dad. However I am starting to have doubts if this is really the right solution. I have had to tred so carefully that this is the most they would agree to but I think they need a lot more.

Mum is still utterly terrified and her confidence is shattered. She doesn't 't even want to make a phone call, let alone co-ordinate a diary for future appointments Dad will have.

I just think my parents aren't ready to look down the carers route but i think I need to understand what is right for them both. I wish I felt confident in my mum taking on a full carers role but I don't think she's able.

What I ideally need to find is someone who will help Dad with his increasing in continence, be watchful with him over his endless stumbling, watch his choking wycombe and yet be there to help guide mum and co-ordinate the many appointments she will need to think about.

I know I'm not being very succinct but frankly I don't know where to truly start. I have put a call into social services re their carers service but this will only be to support Dad. I think I need some sort if solution for BOTH my parents. I read all your posts daily and find them enormously helpful. Do you have any ideas for me? Thank you in advance Nicky x

5 Replies

How old are your parents?

1 like

Hi Nicky, I think you have made the first move with crossroads, my husband has a lovely lady come in on Tuesday, which gives me a few hours to myself to do what I want.

Getting in touch with social services, they should come and do a risk assessment, it seems like your parents need help, and your mum encouraged to go out and have a big of time for herself, once she gets use it her me time, she will enjoy it. I think maybe she feels guilty to do things by herself, and leaving you dad alone, but he will get use to it.

The chocking is horrible to see but that is part of the PSP, you can only take one day at a time. George was diagnosed in May last year, and has got worse over the last 6 months, it is horrible to watch but the illness is horrible.

Also what about day care centres George goes twice a week and enjoys it so much, which give me time to relax, and do jobs that I need to do.

This site is wonderful, so many go answers to questions everyone is going through the same thing. Sending you a big hug, sometimes as children you have to take over the thinking side of things, and just tell your parents the way things should be, like my children do to me sometimes.

Sending you a big hug. Yvonne xxxxxxxx


Hi Nicky, well done so far, you can only do so much but looking after finances is a great start, if you are in the UK make sure your parents are getting the disability benefits, attendance allowance or PIP and carers allowance, to get help getting these either go to CAB or Money Advice service. Both organisations will help with the claim as long as you provide the correct info including Consultants and GP reports.

Your parents definitely need to get in touch with social services for a care assessment. What they do not want is an accident which results in NHS involvement ie fall causing a broken bone, care will be thrust on them with carers, district nurses, GP, social services all descending in one go, very overwhelming, I talk from experience I was coping well with occasional visits by therapists, then my wife fell broke her arm and the world fell on me. I am very glad now that it did but at the time I was shell shocked and was often in the middle as NHS professionals discussed M's care needs over my head. Crossroads and Marie Curie nurses are good sources of sitting care giving your mum time for herself. Keep plugging away, your parents will appreciate it. Good luck and best wishes Tim


Lots of experiences, in fact I can only recommend you reread both YandG's and Tims Posts, these will get you headed in the right direction

have a day filled with confidence and joy. life sort of comes full circle where our elders must depend on us.....they did not shy away from providing for you when you were a child and now you must take those steps to health and safety for them

Good luck Be happy Do Well( my husband would say the last two words...when we started noticing odd now that's our "good Bye") haha



I was fortunate enough to find a retired health care provider in my town. She filled in when needed and had I needed her to do more she would do so (scheduling etc.). Perhaps you could ask neighbors, friends, churches, and find such a person. I paid a very minimal amount because she was retired and didn't need a full income. Good luck. You are doing the right thing in planning ahead. That is a MUST when dealing with PSP. Jimbo


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