My mum is 54 and has psp my dad is struggling to care and work at same time so I'm looking to try to pay for a carer part time

[Russjon]

Would like some help on where to start please

[SharonAB]

Dear Russjon,

It helps to know where you live. As it seems to vary quite a bit per country, and the state or county you live in.

For example I live in Perth, Western Australia. As it is a city there are numerous employment agencies with specilise in providing 'care' staff. Rates vary significantly - some reasonable, some extremely high!

To establish a network, and find out what there was 'out there' I carried out a carers course at night school to find out what was in our community. I fortunately had a very accommodating employer and friends around to help out big time (I still owe them!) to do so at the time. Most people I think normally start by contacting the local council or silver chain or Disability Services Commission Area coordinator for support. Some people also speak to the social support staff at their local hospital for instruction of who to speak to (I did this for my sister when she needed help).

I liken someone with PSP as needing help before their time so even though your mother is young, my husband is of a similar age - she probably fits under the term 'aged care services' for services into the home. The term 'aged care' is quite deceiving. For example my sister had an injury at a very, very young in life and before she finished school it was a term/title I had to get used to.

So I presume what your Dad could probably do with 'at least' is assistance in things like showering/bathing for his wife, help with meals and probably general domestic help around the home. For a while we had someone in our home who was training to be a nurse come in for four hours a week to help with general housework (and that in itself helped so much!). It worked two ways - it gave her a 'pass' for the unit she was studying, and me a sense of normality to just drive down the shops, and make dinner without added pressure - it was breathing space I really needed at the time!.

Regards,

Alana - Western Australia

[ultramodern]

Hi Russjon..i have to assume you are in the UK somewhere.Good thinking to come onto this website...are you a PSPAssociation member,yet. They have wonderful resources...especially the Specialist Care Advisers(SCAs)

You need all kinds of help so first off call the Helpline:0300 0110 122 or quickly get to the site: [e-mail].

If you're not in the UK I'm sure one of our worldwide 'posters' will come to your aid.

Just hang in there, keep calm and carry on...you are not alone in this PSP lifeboat.

With you in mind,best,brian

[lindsey48]

Hi there. If you are in the UK try contacting Age UK. I think they have a list of carers.

Regards Lindsey

[Hidden]

Try your social services as they will use a reputable company in your area and may subsidise the cost as well. They can also help with attendance allowance claims etc and arrange for other agencies to help by providing aids around the home like handles, equipment and walk in showers. All worth an ask but it takes time so start ASAP. Dianne x

[cabbagecottage in reply to Hidden]

Hello daughterno1 .. I am going down that road , some good and some more stressful . Started having carers in morning and night when I struggled to get my husband into bed . In the four months we have been having them we have had 40 different carers . This was organise through social services . Don't know who is coming through the door and it can be anytime within a 2 hour slot .

they have kept on promising me an earlier visit , on most occasions I have had to get hiM out of bed myself . There should be more continuity .

I am flexible , I understand we have to be , but at the same time hopeful it will improve . There is a lot on the news the is morning about the need to give carers more support and easier access to getting help .

[cabbagecottage in reply to cabbagecottage]

I am fighting at the moment to seeing if it is at all possible for them to get a ceiling hoist fitted , I am afraid to use the mobile hoist myself because I damaged myself I wouldn't be able to help at all . think then I wouldn't even need any help , although I wouldn't stop it in case I became poorly myself . Although I do use the wheelchair to get to the hoist and then change him over to use the commode . Where there's a will there's a way .

[Hidden in reply to cabbagecottage]

I know what it's like. We were lucky in that, although mum wasn't yet diagnosed when we had to get carers in, a handful of carers quickly realised she had more complex needs and along with the physiotherapist's recommendations we were fortunate that London Care were happy to use about 5 carers on a rota who understood how mum worked! Mum's PSP raced along and we were always on catchup with her needs and these fluctuated daily. Mum was never a patient person and it was hard to get her to wait for someone to help and one of her many ambulance calls was when she fell whilst getting things ready for the carers! Mum constantly changed the time she wanted to go to bed and would even say no thanks to a carer and almost as soon as they had gone she would ring me and either say no one had come or that she now wanted to go to bed. Luckily at that point my sister was living with me between house sale and purchase and could come with me which made a big difference. The carers knew it was no trouble for me to come out if there was a problem and would ring to let me know how a visit had gone. One of the problems the carers had was accessing some of the sheltered homes as they had to buzz to get in and of course they never knew what they were going in to. For example if mum needed an ambulance call when they visited I could go and deal with it and let them go. But some people don't have anyone and the carer would have to stay and provide a while lot of information before they could leave. But it reached a point where I couldn't even pay a visit to the bathroom without mum getting up and falling and she had to go into a care home as I was on the verge of a breakdown. Her diagnosis came when she was at the home and we had mixed feelings about mum having been coping on her own vs keeping her independence as long as possible. But I think things happened the best way for mum and I know she would have refused point blank to go into a sheltered home let alone a care home any sooner than she had to. I hope you can get the ceiling hoist. This is where pw PSP should be getting their Continuing Heathcare -when they have intense needs with mobility, not when all hope is lost! Take care, Dianne xx

[cabbagecottage in reply to Hidden]

It's like being on a roundabout , and you get on and off 23 Hrs a day .

Our carers are all mostly all very kind , this week we have had the same ones and it has made a huge difference .

My husband is diagnosed with Parkinson's but I am not so sure there seems to be so many different forms of it .

Your mum was quite a lot younger than my husband getting her diagnosis . Looking back I can see he had been struggling with it for many many years ,. It's not fair at any time but we can look back on a lot of good years which is something lts of people cannot do .

I have just been looking at Gerko s reply and it's very helpful I have done a lot of things he has mentioned already but will look at others .

You so right Dianne and thank you again xx

[riosenior]

Hi. If you are in the UK contact your local Social Services and ask for a Care Needs Assessment. Everyone who believes they need some help is entitled to an assessment which not only covers care needs but can also trigger the involvement of other care professionals ie Occupational Therapists, District Nurses etc

[flicka]

The PSP Association will point you in the right direction for which people to be in touch with, financial help etc, also be there for specialist help for this unrelenting disease and know just what you are all going through. Will be thinking of you.

[Hidden]

Dear Russjon,

As others have said, it very much depends on where you live.

In the UK your first course of action should be, in case you have not done this already:

Go to the website of the PSPA and download the 'Personal Guide to PSP'. This guide systematically tells you what to do such as:

1. Your GP to register you dad as the carer for his wife. This is a legal obligation

2. To register your mum for continuing care even if she does not yet qualify. It is important that she is in the system

3. To contact the relevant NHS Trust (Community Services) in order to book an appointment with:

a. An occupational therapist

b. Speech therapist

c. Physio therapist

d. Parkinson's nurse

e. Register your mum for palliative care even though that is not as yet an issue, but she should be in the system

Moreover the agencies that deal with palliative care doe also provide day care. It depends whether / or not

your mum would like it or not, but if she does, then during the day she can be looked after in the day care

center

4. Your mum to apply for attendance allowance. Depending on her current position she could qualify for up to

£ 75 / week of attendance allowance. Applications can be done on-line with the DWP. (Department of Work

and Pensions)

5. Your dad to do a carers assessment. Based on that assessment he may get help during the day from nurses to

look after his wife, e.g. helping her to dress, washing her make breakfast, sitting services, etc.

6. To make sure you are having a direct contact with a neurologist and that your mum is being assessed every

6 months.

7 Contact the specialist district nurse of the PSPA for guidance, assistance and help

8. Consider to make lasting powers of attorney both for finance as well as health & well being so that your father

can represent your mum legally

9. Consider making a living will

10. PSP sufferers tend to develop pain because of falls causing misalignment of hips or pelvis, stiffness in the

neck. To deal with that you need possible an osteopath and also somebody to give massage on a regular

basis to treat tight muscles, etc.

Hope this helps and gives you guidance how to tackle some of the issues you have.

[cabbagecottage in reply to Hidden]

That's all most helpful , have you heared of Crossroads , don't know what part of the country you are in . We live in Wales and are fortunate that we'

only a have to pay £50 a week and social services top it he rest up for however many care visits a day . That is at the MOMENT .

[cabbagecottage]

When you sign on with crossroads they will keep a record of what your needs are , They have a sitting service and if ever needed and for instance the carer became ill maybe have to go into hospital Crossroads will move in and stay with the person for 48 hours until arrangement can be made it would take the strain .

[jimandsharynp]

Ask all those you meet if they know of a caregiver. I found three through friends and neighbors. Often people have used someone for elderly parents etc. and if asked will tell you. We found a lady in our community really close to us this way.

Jimbo

[ultramodern]

Bonjour Russjon! well I've not looked in on your posting for a few days and am gratified that you've had over a dozen helpful replies.

Some like GERKO's are as good as you'll get from any Social Welfare group. So I hope you do live in the UK because it seems that's the place where to get most help. France boasts that it has the best health service in Europe...but when I hear things like there's a carers allowance plus the advice from the PSPAssociation one can get...then the NHS with all its faults seems pretty good to me!

Let's hear how you are coping Russjon, and whether we've been of some assistance in your plight.

With you in mind,

best,brian

[jillannf6]

Hi I useHome instead senior care which have franchises around the count try

The same carer is asign,d t o,you and your get her/him as many hours as u need/want

Loljill

I found Tim as they were rec on this site

[jillannf6]

Them not Tim

[snapper]

Hi All

Am fairly new to the care game wife diagnosed August 2013 been ill some years.

Gerko your todo list is up on my wall of notes. Simple, to the point and so so usefull.

Many Many thanks

Snapper Midlands UK