Hi there all, so sorry I have not been in touch lately but have been very busy as you can imagine running a residential care home for 29 lovely elderly rsidents wanting to give them all quality attention and trying to keep on top of the ever demanding compliance as well.
My resident who has got PSP is on the decline being told by the specialists that he may have three to twelve weeks left and his loving family realise that his needs are getting to much for us so have found a nursing home and a hospice local to them BUT they have No available beds at present. So we are trying our best to look after him as much as we can making sure we are working within the Gold Standards Framework recommended by NICE for end of life care. We have got a special repose bed being delivered that can be altered to allow the resident to be comfortable at any angle as lying down is not wise due to swallowing difficulties and breathing. If his needs become one to one if he needs to be confined to bed we have got a private community agency that we can call for when the family are not able to be with him which the family have agreed to fund as they cannot get extra funding as he is still in a " Residential Home " not nursing ?
I do really empathise for the family as they are so worried for their loved one but it seems so tragic that there are " no beds at the inn " for their parent.
All we can do is give the resident all the care and attention we can and work together with our multi agencies to make sure they are as comfortable as possible and receive compassionate and dignified care as long as they are with us.
I am writing this just in case anyone else has this experience with their loved ones to try and emphasise that residential homes like mine will give 100% and more to help people with this condition and their families which hopefully will lighten the burden of all the upset and worry this PSP disease brings to everyone involved.
Take care everyone and I will try and keep you updated
My prayers are with you all
God bless
Jane X
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Bridgewater
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How nice to read your lovely post! Of course I am sorry that your resident has deteriorated and now needs extra care but it's so reassuring to hear about all you are doing for him and his family.
Do you have any tips on how to identify the very best and most suitable nursing home for our loved ones if the time comes? It seems so difficult when visiting to really get beyond the size of the rooms; quality of the soft furnishings; freshness of the flowers in reception; extent of the activities program and find out what the quality of the nursing is like and whether the staff are really compassionate.
If only we could find an establishment as caring as yours, with nursing care, knowledge of PSP and in our home town! I hope a bed comes up soon for your resident and that you manage in the meantime.
Sometimes it is better to google the name of the Unit and 'Inspection Report'.
For some weird reason Google is a better search engine than the U.K. Government.
When you find a possible go and visit (preferably at lunchtime when the food is being served. That way you can ask to see the food - They should'n mind. Also check out the staffing to patient ratios. A hospice or nursing home needs a much higher ratio of staff : patients.
Thanks Kevin. Yes I've done those things but still don't think you really know. So much depends on attitudes of individual nurses and CQC inspection reports don't really help much beyond giving an idea which ones are really awful and not worth considering!
The other thing to look out for is any specializing.
We recently decided to identify a good Nursing Home for Liz in case of a crisis or me being unable to care for some reason (broken arm etc). Contingency planning.
Generally someone well down the PSP route needs a Nursing Home for the higher level of skilled and qualified nurses.
We then telephoned around all the 'possibles'. I told them the situation and asked whether they were suitable. Most told me about their suitability without any issues. The one to watch for is whether the unit tends to have very high levels of dementia service users. One wonderful unit had service users all in their mid eighties with advanced dementia conditions. Not at all suitable for someone thirty years younger. A good question to ask is whether or not the home is 'licensed' to do the sort of work necessary for your loved one. Every home has specific admission conditions for conditions numbers and age groups and medical conditions.
In the end we found a Nursing Home which was (formally) also training its staff up to End of Life Care standards with the local Hospice.
We are just residential it all depends on the severity of the PSP symptoms at the time of transition. All I can say is speak to the Managers and check the CQC reports although sometimes they can be conflicting you have to go on your gut feeling listen to the way carers talk to the residents and go unannounced.
However I am very concerned that a Residential Home is having to stand in for a hospice. Normally residential homes don't even have the nursing levels required of a Nursing Home. Does your 'license' allow you to take on that role?
Though I am sure your unit is very good I think there is a major case for a complaint to be put in to the Commissioners on the lack of availability of a fully equipped and trained hospice facility.
Were geared up and highly committed Care Homes, like yourselves, sufficient there would have been no need to have the other two types of resource.
Have you mentioned to the family that they are in a position to make a complaint? Or at least have a discussion with the G.P. who can advocate for them?
I can see what you are saying but when he first came to us is was mild Alzheimer's which his needs were manageable but when we started to experience and monitor unusual behaviour patterns it was found out later by the family after going for private scans that he had been wrongly diagnosed over a period of 8 years and had PSP.
So his family started to look around for local nursing beds in an environment similar to ours but as stated they are all full.
The move will be imminent and we have got all multi agencies involved so hopefully he will be getting a bed soon. He was offered a few out of area but they were not suitable so hence why he is still with us.
Thank you for your concern and appreciate your comments
I could see you were going A+ to make a less than ideal situation work. I must also say that you seem to have pulled more stops out than many a unit I have seen over the years too. The fact that you read and worked as far as possible to the Nice Gold Standard says it all really.
As a community clinician I did quite a bit of advocacy on behalf of my patients. Sometimes adaptiveness, silence and acceptance can result in a poor service when resources are short. Hence I might sound a little bellicose at times. I don't mean to be.
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Accusations and Constant Mistrust 
My question is: does PSP speed up in later stages?
disabled rooms in good hotels seem to be very few in number
PSP - progressing right along
STRESSED AND FUSTRATED
