Where do we go from here....

[Careenh]

So my lovely PSP friends we have once again hit a brick wall😡 after a non co-operative, unsympathetic, ignorant GP visit recently ( seeing the neurologist at the end of this month) my dad has just been told that the palative day centre that mum goes to a couple of times a week can no longer have her as she needs 1 2 1 care😢 this is a devastating situation as dad really relied on those days as respite. They don't qualify for any social funding as they have done the right things all their lives and saved for their retirement. Mum's restlessness and howling screaming is becoming worse than ever. I just don't know where to go from here 😢 x

[easterncedar]

Can't you get a new GP? Or a specialist who will consider prescribing medication to sooth your mother's agitation? It sounds unbearable.

[Careenh in reply to easterncedar]

Hopefully when we see the consultant he will prescribe something otherwise I just don't know....

It is unbearable 😢

[Marie_14]

Careenh I am so very sorry to hear this. I know how your Dad feels only too well as the same thing happened to us with the Hospice. However at least G didn't howl or scream. I was very lucky in that respect.

Can you not talk to the Neurologist on the telephone and ask for help advice? Or what about ringing the PSPA? What have you got to lose? You need to cause a fuss on your Dad's behalf or he will end up ill.

Marie x

[Careenh in reply to Marie_14]

Thank you Marie. I am going to speak to the PSP. Things are becoming quite desperate now. Xx

[Yvonneandgeorge]

Can’t believe your mums GP is so insensitive, surly he could of prescribed some medication to help the agitation. Our GP is amazing. You can’t go on like that, it’s not fair to your mum, your dad and yourself. Yvonne xxx.

[raincitygirl]

Careen, just hearing this, I want to get on a plane, fly to the U.K. march up to the XYZ office and slam a digital recording of your mother's screaming down on the counter and say "I'm not fracking going anywhere, until this is solved People!!!!!"

On a calmer note...If your GP won't prescribe an antipsychotic, is there a governing body, a regulatory college over the physicians in your county or country you can complain to? The neglect in prescribing sounds way over and above "normal discretion" to me! I mean, while we may not agree or be happy about some body's decision about funding (e.g. the Palliative Care Centre saying your mum is outside of their "norm" for supplying service) - the refusal to take care of your mum's dementia symptoms is against everything I've read on the PSP-professional websites, and against what I've heard from our neurologists, etc. - In my experience (in Canada, albeit) you don't get to specialists easily, and when you do, they are HAPPY for the GPs to take over the routine maintenance of a disease progression! They want them to do the prescribing and care planning etc...

I wish I could help - you just sound like you're in such an unfair and unbearable situation. My heart goes out to you and your family.

AnneG.

[Careenh in reply to raincitygirl]

Thank you Anne. I wish we had as much support as seems to be available to you. ❤

[Hidden]

Have you tried melatonin

Melatonin supplements are sometimes used to treat jet lag or sleep problems (insomnia).

Do hope you get some help.

Dee

[Katiebow]

That is disgusting, are there other GPs at the surgery you can see or make a complaint that you know there is medication to help. Talk to PSPA who arrange a nurse to call you, do you have a Parkinson's Nurse, they contact GPs to recommend medication. As for funding have the hospice not helped you to claim full CHC funding which is not means tested, it sounds as if your Mum should qualify, the posts that Kevin has posted on here are very helpful, it's well worth the effort you have to put in as your Dad will get respite periods during the week and full weeks of respite arranged for you by the CHC case manager.

Hope that helps.

Love Kate xxx

[Georgepa]

It sounds as though you should be applying for CHC funding which is NOT means tested . It’s hard going but worth fighting for . Have you had your local Community Matron in to asses your mum’s needs ? She should be able to advise you about CHC and with your occupational therapist do an initial assesment.

Good luck Georgepa

[Hidden]

I don't know what country you live in, but in Canada she can choose to have medically assisted death if she is competent, sorry but it is a blessing

[Spiralsparkle]

Sorry to hear that you also been stopped hospice day care. My Mum has also been "discharged".

Hope the PSPA are able to help you get some advice on what medication maybe be of some help with the howling and also get other health care professionals involved in supporting you.

Our hospice have not helped with CHC funding , I do wonder if they've been told not to offer help willingly by the CCG!

[Escada29]

Hi I have found the hospice very disappointing J also was discharged although I discharged him myself as they said it was too dangerous to give him a bath anymore at the day centre. Can I ask why your mother howls? We live in a flat and when J coughs I think all the neighbours can hear it I think if he started howling we would have to move house! This must be awful for you all I could not cope if it was me. Sometimes the situation just feels hopeless when does it ever end.

[coldown]

My wife howled and screamed and was initially mis-diagnosed with a type of post traumatic stress disorder because of it. Our Gp is excellent and very supportive but few have experience of this rare illness (PSP) and the howling wailing bit even seems rare within PSP. I am sure the key to the howling etc is the neurologist. We only see ours every 6 months or so but if we ring her secretary she will ring us and then write to the GP with a recommendation re drugs for the GP to prescribe.All of the drugs that my wife takes to control this extreme emotionality came initially via neurologists. Might be worth trying to ring yours in advance of your appointment

Had you thought about asking to see the neurologist privately if you are in the UK. You might get an earlier appointment .What you are going through is very tough, I know.

You have my sympathy. Recording on a mobile is a good idea in case your Mum does not howl etc in front of the neurologist. I did not need a recording our neurologist certainly got it live!!!!

[raincitygirl]

Amen to that, Coldown: I am a big fan of EVIDENCE: I believe some professionals will water down/discount what you say, assuming that we all exaggerate... ..Make a recording!!

=Anne G,

[Kbaker1]

My mum has a small dose of citalaprim, it has really helped with her screaming/ shouting at my dad