My father has Parkinsons. He and mum have been divorced for 10 years but she was still going round to his house to care for him. It recently reached the point where she cant cope (and his house was dangerous - steep stairs/bath only) and he moved into a care home. But despite paying 1100 pounds a week they said he was too demanding and didnt want to keep him. He has since tried another place which had more nursing care and they said the same thing. We are at a loss about what to do.
He doesnt need nursing care most of the time but when he gets frozen (which is alot) he is incredibly demanding, He wants someone to stand him up and sit him down repeatedly for about 2-3 hours, pass him water, help him go to the loo, fetch things for him, lift his head etc etc etc. He is very OCD about it and no care staff have that kind of time. Plus they refused to lift his head citing health and safety so he thinks he will die.
He really freaks out in his off times. He sincerely believes he will die. He thinks he will suffocate when his head droops and he cant lift it (he makes mum cut the neck open on all his t-shirts). He accuses the staff of neglect (and he might have been right in one of the places) and in a panic phones anyone whos number he has begging for help (e.g. me even though I live abroad, his accountant etc). Poor mum (who works full time and is exhausted) gets about 20 calls a day from him saying hes going to die and she has to come now, or 'take care of the kids for me', or else just heavy breathing and grunting. Shes an emotional wreck.
Basically he wants someone to sit with him 24/7 and be at his beck and call but its just not feasible - no one has that time plus he freezes completely and is very heavy so needs professional carers, he couldn't live at home anymore even if it were an option. Does anyone have any ideas? Thanks.
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You say he does not need nursing care I disagree 24/7 care need is not social.His need is health generated and as such he should qualify for continuous care.It appears your family may not be aware of help available .
I agree nursing/ care homes do not provide level of care needed.My wife went into a neurological nursing home and the experience mirrored yours. She has had parkinsons for 25yrs . They considered her too demanding and reported that she was attention seeking.
He is EXACTLY like my father. Same, it's so hard. Please let me know if you get any further with this. I will be honest initially there were times when we thought it was for attention but then you realise it's got to be incredibly scary for your body to shut down whilst you are conscious. I wish he had taken inboard anxiety and panic management when he was able. We (my mother and I ) care for him 24/7 but neither have any life and it is exhausting (more so for her). It sounds like your in such a hard position, it's hard enough entrusting your loved ones to other people (our run at a hospital showed me how nurses weren't equipped at all). I hope you have had some progression with the issue.
I know what you are going through, unfortunately he is just like many people with Parkinson's the disease is what is causing him to behave like this and he can't help it. This is what makes coping and living with PD so difficult he must be is so much pain with his head and neck as two of my friends who are in the same situation tell me how they feel.
The poor man must be very frightened, friends with PD including my husband tell me how their whole body feels when they can't move and that their throat, swallow, eyes and every part of their body feels absolutely dreadful. It is very common for people to think pwp's are putting it on and mostly its because they don't understand the disease, its also very hard for us carer's to understand fully, my husband has had it for going on forty years and is only seventy so we have been through lots of different stages. What you and your Mum need is a case conference to sort out his proper needs and even speak to his consultant as they may be able to give him some different drugs to help him.
Nursing homes are mainly happy for people with very little need but once you get people with PD they are not keen to have them because in their words they take up too much time!!! even though the homes charge such a lot, I feel the whole system needs looking into including how much profit the company's make.
As to the question of his needs, I would think he would be entitled to continuing care and you need to approach the home and get him assessed again. Following on from that my question to the government is are they getting a good service for all the people receiving continuing care as actually they are paying for it as are the people of this Country in their taxes.
The care system should be more professional and give a good structure for carer's to progress in a career. Where my husband is the carer's have been waiting two years for the company to start them on NVQ's whereas in the community carer's are much more likely to be at least NVQ level two trained and sometimes level three.
This is so sad, Holpot and Helsbels,. Parkinson's has Volunteer Educators who give talks to health care professionals - I've put together a presentation myself which I've taken to a few groups, the WI and so on - and anything you can do to raise awareness and increase people's knowledge will help to stop this kind of thing. Good luck, guys xx
