My father is 66 and suffers from Parkinson's with associated dementia. His symptoms have rapidly deteriorated over the past 18 months. He has been in a care home since December 2012. The standard of care he has received has varied considerably over this time and we have had to make lots of complaints about his care including getting his medication on time and basic needs such as toileting, feeding and keeping him mobile. We have made these complaints to the care staff, the home manager and his social worker and other professionals like his CPN. I work full time so cannot be at the home every day but my step mother visits at least twice a day. Most if the time it is my step mother complaining to the staff, the care home seem to have taken offence that she complains and are saying that they won't tolerate her behaviour towards them. I have tried to reason with them and get them to see why she gets so upset and behaves towards them in the way she does.
The care home have now given us 28 days notice to find another place for my father to go to after threatening us with this action on a number of occasions previously. Unfortunately I cannot find any care homes with either vacancies or that don't require top up fees in the local area. Social services are well aware of the situation and I was told by the social worker that they would not cover the top up fees as in her words " he's in a care hind that can meet his needs" but he's being forced out if this home.
You must be so worried about this. Care staff don't seem to understand the needs of residents with Parkinson's. Have you spoken to anybody else at Social Services, perhaps Customer Care Manager, or the Commissioning or Contracts manager. Even if its a private home Social Services will have a contract with them. Another idea may be the Care Quality Commission who may be able to advise. The Parkinsons UK helpline will also be able to offer some help.
I've had a chat with an Information and support worker and our helpline manager about your post. Both agree that the Care Quality Commission ( 03000 61 61 61 or http://www.cqc.org.uk/public) would be a good route. But you will need to have raised a complaint with the home first.
Your local Information and support worker can help you talk through your options and might be able to help you communicate with the home you father is in. You can find your local information and support worker here: http://bit.ly/1pL3an6
While I cannot give you any advice on what to do or where to go that betters the responses you already have I would like to say that this situation is absolutely disgraceful. What is it coming to when a Care home to all intents and purposes evicts a resident and the Care management team are about as helpful as a chocolate tea pot and I am being polite here. I truly hope things work out for the best and you do find some where a lot more suited for your relative.
I have only just seen your post and I completely understand your frustrations as my husband is in a care home and I am constantly explaining to so many different staff how they can help him better in the most basic care needs. I have written on this subject before on here and still find it difficult to get across to the powers that be the importance of good care for people with this very difficult condition.
I agree it is disgraceful that in this day and age people with Parkinson's have this constant struggle to very basic care, but as I have said before some care homes do not want people that need quite a lot of attention through no fault of their own and class people with Parkinson's as such people.
There needs to be many more care homes that can look after people with Neurological conditions and although I live near 4 large main hospitals my husband is an hour away from me and I know of at least six other people from my area who have relatives in this home for the same reason, it seems crazy that there are not local or regional care homes for these very complex conditions.
If you read my posts you will see some of the problems we have had over the last few years and I have to say I would have taken things further but don't for the very reason you have now, but I do keep trying to educate the care staff, its hard work and very draining and a bit like knocking your head on a brick wall but I do this in the hope that anyone coming after my husband will have a better time as well as his care improving once they have a better understanding and realise that their job would be so much easier if they only listen to both my husband and myself.
I have to say there is little will for change and the care home owners should be a lot more accountable for good training and enough experienced staff and not keep employing people who have never done care work being employed in complex need care homes as it is not fair to both resident or staff, most of the care staff at my husbands home are nice people but lack care experience and good training.
The whole care industry needs to be looked into and improved as well as a better career structure with the respect it deserves, after all they are the people looking after our relatives and even ourselves maybe one day.
Good luck with the CQC and maybe the PDS will take up your case, I hope so as it is so difficult doing this on your own.
Just a note to other forum members who know me my husband had a very successful operation and much to my relief he was a star patient very calm throughout and no challenging behaviour what a brave man he is.
It has been a while since I have posted, but I have hopefully good news at last regarding my husbands care home.
The company have suddenly put in different care managers and are making a lot of changes including better training of staff, they are also meeting all the residents relatives who wish to see them.
I can't believe it is actually happening after the four years of struggle and head bashing on very basic issues that has completely worn me out, I just hope I am not being too optimistic but I feel this huge weight is lifting at last.
They are a national company so I have pointed out the lack of care homes that have a good understanding of early onset especially but Parkinson's in general so I hope that they may take this into account with future planning.
Good news for you and very encouraging for those of us who think we might eventually need residential care. Something to be said for a national company then. Hopefully, no need for every PWP/Carer to fight the same battles over and then repeat the exercise. When my mother was in a care home for six months before returning to her bungalow I used to think how much at the mercy of lady luck residents were who had no one to look out for them. It was hard enough for me and my mother had no long term condition (no meds.) til the day she died at just short of 100 . One week-end night nurse (pal of the owner) used to put the alarm cords out of reach and I was the only relative who was felt able put their complaint in writing for fear of it re-bounding on the resident.
Lerts hope you can relax a bit. Ffour years is a long time and I believe you do not live all that nearby.
upon reading your posts it does not surprise me at the attitude towards Mr P. since I have been diagnosed and spoke to members of my profession; nursing - I have been amazed at their attitude towards Mr P. They say things like, well its not like youve got cancer is it.and I want to scream at them. Not because I want sympathy, just a little empathy.
They just have not got the understanding of the disease and compassion. I think they mentally picture slow thinking, slow walking people who always appear miserable because of their fixed expressions. I do not decry everyone. I am sure there are caring people.
Ironically my husband and I have both had a form of cancer but fortunately we are ok with that aspect of our health. But cancer has the reputation of the big C which gives the impression that life is going to be soon with a painful death which is not true. I remember years ago rowing the manager of a hospice who would not take in someone with motor neurone disease, who lived on their own and was virtually totally incapacitated on the grounds that the hospice was primarily for cancer patients. I think I felt even more annoyed when I found out that the majority of people who were inpatients were out of the area and the funding for the hospice had all come from the local residents. And the patient with motor neurone disease, which is a dreadful disease was a local resident
There I feel better but I do think it is true there is a lot of ignorance around re Parkinsons Disease.
Many thanks Eileen patricia, it has been a long struggle I just hope it is not a false dawn.
Hello astoriasis you do not surprise me one bit as I find this attitude all the time even with some of the nurses at the home, it is so refreshing when a new nurse comes that actually asks me and listens to what I have to say about my husbands medication but also very rare.
My frustration is that is in all the years my husband has had PD which is nearly 40 years now that nothing has changed much at the sharp end of people looking after people with PD, if you have good care in any shape or form don't rest easy as in our experience when a good consultant retires the whole situation changes and it seem things are going backwards these day's. There are less clinic's that are like the multi or movement clinics where all aspects of Parkinson's is treated in one clinic, this was a model standard a few years ago and are now a great loss.
Most pwp's and their carer's dread hospital stay's as even neurological wards have proved to have little understanding about medication on time never mind general wards, the answer must be better training of nurses both in general and mental health before they qualify, it need to be inbred in their brains that this condition lasts a lifetime only getting more complex as time goes on.
We too were told by a close relative that "well he only has to keep taking the pills" it's a good job I am a calm person and bite my tongue, but I am also a passionate person about pwp's and their carer's and frustrated by this lack of progress in understanding of PD.
I have now joined another branch committee in answer to a request by my close friend an ex PD nurse, I was too tired for the first couple of years after my husband went into a nursing home but I was very honoured to have been asked as it is a privilege I just hope I can be of some help.
You have had a difficult time for what must at times feel like an eternity. And you must at times Question why. At the moment Mr P for me is not very difficult, I shake a bit, get cramps, and an uncanny tiredness and get aches and pains where I have never had them before but please dont think I am complaining. I have come to terms with it but thinking about the future terrifies me. I just cant go there. I read all the current literature about euthenasia but then get worked up about things and feel dreadful. So, I have reached the conclusion, it is not the time or the place and I
just enjoy what my present life is like to the best of my ability.
I used to work as a completmentary therapist years ago, and used to teach relaxation and coping methods and was successful at it. But of course, when things `come home to you, it is not the same, or as simplistic as you told to your clients.
But one of the biggest things I did learn through my experiences as a nurse is that life at times is a bugger, Oh dear, and is indiscriminate of what happens to people. One of the groups I did have a lot of empathy for was the Parkinsons sufferers but never expected to contract the disease myself.
So, life has a journey for us all, which we must make the best of, it is a precious commodity and very interesting.
Keep your pecker up
Warm regards
Astoriasis
Ps She does go on - doesnt she. But she hopes it maybe of comfort to somebody
Thanks for your reply, I haven't been on here for a while, had so much going on and so many different people, with the changes still going on at the home.
I do feel such a relief that things are changing and the staff are to get much better training, I just wish there were more care home that can manage people with early onset PD.
I have mentioned it to the care home managers as there is a great need for homes for people with Neurological conditions. The Care home company care for a lot of people with learning difficulties so are used to complex situations so I hope they will take up the idea to have some more homes in the future.
As Vivian says, it is about time the Care Homes set up in this country was properly investigated.
It is beyond me why it is so extremely expensive to reside in a Care Home, whilst on the continent it costs a fraction of the price. For example, my mother was looked after extremely well in a Care Home in Italy for 5 years, at a cost of just 1000 euros a month. This amount remained the same for 5 years, up to 2 years ago.I understand the cost remains the same even now.
I expect Care Homes in the UK are just profit-making organisations, which care very little about the patients who reside in them. The time has come for a thorough investigation into why the fees are so obscenely exorbitant and what they should be instead.
Pleased to hear that things are not so harem scarem as before. It seems that the forum has gone on some what of a quiet phase. None of the usual people are doing postings. It must have been the warm weather keeping them away from their computers. I have been quite a lot down at the caravan enjoying the warm weather too.
Havent got much news myself at the moment but just wanted to let you know that I am thinking about you and your life as it is.
Yes it is sad that in this day and age that things are not very much better. Parkinsons has been diagnosed and studied for such a long time and yet peoples understanding of the disease is very limited and narrow. I have a friend who is a trained nurse and has worked on the district and yet when I told her that I had parkinsons it was like saying I have a cold. She totally dismissed it and said Well, its not as if you have cancer. And I felt like saying no it can be a lot worse. I was cross because I felt she she have known better.
I hope that you are less tormented, and exasperated with things.
