This is my first post - be gentle! My Mum has PSP. She was diagnosed 5-6 years ago so it is relatively advanced. She is fully dependent on my Dad who looks after her 24/7. He is finding it increasingly difficult to manage this immense load now and is missing out on all the things he likes doing. Although he has been very reluctant to get any outside help with the care, I think he's now ready to do so. What he is looking for is someone to call upon for the odd morning/afternoon here and there to release him to do some of the things he likes. As his son, I am concerned that they get someone reputable and trustworthy and so I'm writing to ask whether anyone has any companies/organisations/even individuals that they could recommend through personal experience? My parents live in Cheshire.
Many thanks,
Steve
Written by
swest4
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Gosh, your Dad needs a medal of honour, to still be coping in his own. Of course he needs outside help and quick! Your best bet is to contact social services. They will give you names and addresses in your area. Also the local hospice, they are for helping people live with life limiting illnesses. Get your GP to refer you. There are charities out there, like Marie Curie, Crossroads etc. They can provide sitters, so your Dad can get out and breath a bit.
Sorry you have had to join this community - I have only been here for a relatively short while but the information you can gain is invaluable. Speak to your Mum and dad's GP who should be able to refer to the hospice and se if you have a branch of Carers First. They assess the Carer's needs and have a lot of useful information. Best of luck.
I would also suggest you get in touch with Social Services. My mum lived in Cheshire (although notPSP) and Social Services were a good help. A social worker came out to assess needs (what you want isn't always what you need). Of course with cuts they are a bit restricted in what they can supply but they will have all sorts of information of what is available in your area - Council, voluntary and businesses.
They can also offer advice about aids that may help day to day care.
I rang them as an emergency when things got bad with mum and the social workers said they were there to support the carers too. Don't forget if the carer goes under the cost to the State is far higher!
It also helps to get in their radar for when needs are even more burdensome. Btw they won't force anything on you that you don't want
I agree your Dad has been absolutely brilliant to date , but you are right you do not want him to burn out or feel socially isolated. My beloved Mam had PSP and sadly passed away almost 3 years ago. We were blessed to be able to keep her at home throughout as there were two of us living with her and we had a team of carers ( some state sponsored , some private ) while we were at work. We know we were spectacularly lucky with the level of support we had and that it is rate by todays standards.
I cannot stress the importance of the "right" carer and perhaps you might get some references from the UK PSP association particularly from families who can wholeheartedly recommend specific individual carers /care firms who are familiar with PSP. I live in Ireland so unfortunately I cannot suggest our wonderful carers.
Once you source your carer/s and are happy with them I suggest that you liase with the agency or company who supply carer to ask for consistency i.e. that the carer remain with your mother ( no chopping and changing ) as the relationship that develops is vital for your Mam and Dad , so that they can enjoy the devotion and trust that develops within a meaningful carer / patient relationship.
Social Care is available through the Social Services. They will contract in a Home Care Agency after assessing and agreeing how much is needed. However it is means tested on a sliding scale with a total cut off at about £25,000 savings.
The same agencies can be got through Continuing Health Care. This is not means tested, but it is a little harder to get. You need to argue that your Mum needs nursing and nursing includes bathing and personal care.
Your G.P will refer her for either service.
I would not opt for finding a single nurse or carer as illness and holidays will leave your Mum without care. Agencies 'fill the gaps' better.
Hi know how your dad feels I am in the same boat M diagnosed 4 yr ago, but been caring for her for 5. I did not have any care help until about 18 month ago when M fell and broke her arm, and then everything fell on me through NHS and local gov. Initially help to adapt home and provide 2 Carers to dress and undress her, then daily nurse visits etc very unsettling but now could not do without. Agree with everyone else about getting help, GP for Marie Curie referral, Carers Trust (Google them and put in your post code for nearest branch) for day sitters and local gov for social services (he should already have an OT, Physio and Speech Therapy from hospital where she was diagnosed) if not get GP to get them. Also try local hospice for daycare need referral from GP.
Has he got help with getting financial assistance ie. Attendance Allowance if she is over 65 or DLA/PIP if younger. If she has one of these benefits he is entitled to Carers allowance. If he has not got them then get in touch with local CAB who can help sort out benefits and help claim them plus help with appeal. It also sounds like he should be applying for CHC (Continuing Health Care) from NHS to help with care costs (read the cautionary tales from those applying the bureaucracy can be difficult).
Has your dad contacted the local PSPA support rep. in the North West: Jenny Renolds she had been a great help to me, if he has not contacted her she can be reached through PSPA main office.
I am further down the care road as M now no longer mobile, cannot swallow so I PEG feed her, is catheritised as incontinent, has no speech only thumb up down if not too tired, but is still all there mentally sharp as ever with a fantastic smile and light laugh. I am now reaching the point where due to very disturbed nights and daytime chokes I am exhausted and so I am very reluctantly looking for a nursing home as even with the full CHC care package they are reaching the point of not being able to sustain home care.
Your dad has done a brilliant job but he needs help, lots of support available I know lots of PSPA groups round Manchester and Warrinton areas. I am in North Wales but know Cheshire (East and West).
Sorry if sounds a bit preachy or teaching gran to suck eggs but only know how I felt when went from no help to a "helpful" world descending.
Best wishes and good luck with the bureaucracy. If he wants to contact me for a chat ask Jenny Renolds to give him my email (I help with North Wales PSPA group).
Thanks so much for the detailed responses. My Dad does already get carers allowance and has had speech and movement therapists in the past. At this stage both speech and movement are pretty minimal but it is nice for him to have new faces in the house from time to time. I'm going to encourage him to get in touch with Marie Curie via his GP as this looks just perfect. I think it will do him the world of good and, my Mum would hopefully also enjoy a new face. She doesn't want new help at the moment, which is one of the things that makes it hard for my Dad to arrange it. However, i can see that it's vital for him and, for the first time, he's now agreeing with me!
I know in our situation we couldn't stop thinking about our poor mum, we kind of forgot the pressure on dad. I think you need to get help in for your Dad's sake, PSP takes it's toll on everyone not just theperson affected.
I hope you find something soon, we are going through the same with my mother.
Hi Steve, I agree with everything everyone has said. You said your mum doesn't want help but your dad needs it and if he burns himself out, what will happen to her then. That's what I told my husband and he decided he would rather me carry on with help than him going to a home when I've collapsed with exhaustion or worse.
Even if your dad decides he can still manage, I suggest he contacts social services so they are aware. Then if anything is needed urgently it can be put in place straight away. A social worker, visiting my dad while my husband and I were there, asked me if C was known to them. I said no. He was still walking with help then and I was coping but she persuaded me to ring SS that day and I'm very glad I did.
It's better to get regular sitters than one off occasionally. It will get your mum used to them and they will get to know your mum and her wants and needs. Your dad can then arrange to do things knowing someone will be there rather than finding the sitter before he can make firm arrangements.
Hi Steve is there any government help available in UK ? We’re now living in Australia and my husband gets a government package I would ask your doctor if there is any available help for your parents and they will come with training surely you shouldn’t have to try and do this yourself good luck
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