Rosemary Lodge Residential Home

Hi There all

We have just found out one of our residents was miss diagnosed and has got PSP 

He is a lovely gentleman and we want to look after him as long as possible and his family are very caring as well.

To be able to read and network in this way will be a valuable asset to us and we look forward to joining in with comments and suggestions 

Kind regards 

Jane Evans

Registered Care Manager

Rosemary Lodge Residential Home

Lichfield

Staffordshire

18 Replies

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  • Hi Jane welcome to this website, you will find out so many things, everyone ready with a lovely response, we look after each other, there are a lot of down times, they pull you back together, I would be lost without this site.  My husband was diagnosed with PSP in 2014, he is now in a wheelchair all the time, he seems to have got worse in the last 6 months, but we can only take one day at the time.  I hope you find a lot of answers on this site, as I am sure you will. 

    It is good he has a caring family, PSP patients need that.  Best wished look forward to your posts.  Yvonne x

  • Hi Yvonne thanks major prompt reply

    I will try and input as much as I can as my staff are passionate about the care of the elderly and we all want to help them as much as we can.  Time as you can imagine is limited for myself  but knowledge into this condition will hopefully aid us to help and understand more about the condition to make the residents life a little more pleasurable. 

    You take care of yourself and your husband and I will hopefully keep in touch as much as I can.

    Jane x

  • Hi Jane, thank you for joining our forum.  It's not often any of us come across somebody in the professional world, that will admit they know nothing about PSP, even less that want to actually learn!

    PSP has got to be one of the worst diseases going, for sufferers and Carers. My husband was diagnosed in 2013.  He once was a very intelligent, out going, sporty man, who ran his own business.   Now he sits in a chair, not being able to communicate, can barely eat or drink without choking and has to have a Catether and regular enemas, needing 24/7 care.  BUT, is still fully aware of what is going on around him.  Not one professional has ever sat him down and explained PSP and the outcome.  This site is where I have got all my knowledge.

    We are all Carers or sufferers, who use this site, so you will learn all the quirks of this evil condition. The main problem is, there is actually nothing wrong with the patients body or mind, it's just the neurons that are not sending the messages correctly.  Hence the patient sometimes appears to do  perceived dangerous things, but really, they are getting out of the chair, as they would "normally" do!

    As a Carer, I have to do everything for my husband, it's not just the physical caring, it's the mental side. I have to think and talk for him as well. Unfortunately not always correctly!  

    Places like yours are a godsend, for the odd weeks respite, thats if you are lucky enough to get CHC funding.  To know you are sending your loved one to a home, where the management and staff, have heard about PSP and are taking the time to learn about the problems.... Well, thank you!  For my own part, it's a shame you are so far away.  S would be first in the queue!!!

    Lots of love

    Heady

  • Hi Heady

    Thanks for that.

    It's going to be a real pleasure talking to you all as you all have hands on experience which I will respect and value.

    Take care

    Jane x

  • Welcome,  Jane, from here in the US. How nice of you to join. You sound lovely, and I wish you were closer!  As far as I know (I've been here just for 2.5 years or so), you are the first person from a  home to post in this community.  I'm sure I'll be glad to have the benefit of your experience, and I know folks here will be glad to have the chance to share with you. Thanks for writing. Easterncedar

  • Hello over there Easterncedar

    Thanks for your welcome and look forward to your information which will be much appreciated

    Kind regards 

    Jane

  • Welcome Jane.  How lovely to hear of a nursing home where people care enough to find out about PSP.  My husband (diagnosed in 2013) has just spent a week in a local nursing home so that I could have a much needed respite break.  His experience was that although everyone there was kind and caring and the home was well managed with a very good reputation locally, no-one there knew anything about PSP or took the trouble to read the PSPA information folder I left for them.  He was treated with kindness but as though he had limited understanding (which is not the case) and was not given much time to try to express his thoughts and wishes (his speech is very quiet and very slow).  Our overall feeling was that it was fine for a week but would not be good for permanent care.

    You will find lots of good information on this site and someone will always be willing to answer any questions you have.

    Vicki

  • Hi Vicki

    Thanks for your reply

    We are just a residential home and at the moment are managing to look after our residents needs as much as possible we are treating them with the upmost respect and dignity but most of all letting them be as independent as possible with certain risk assessments in place  as much as possible and the family agree to this as well.  He loves to sit outside in the lovely garden that we have got and also watch films and snuggle up in bed when he feels like it.  We have experienced our ups and downs with certain behaviours but are working together and I am just in the process of getting multi-teams involved now the diagnosis is PSP and not Alzheimer's which they have been treating for eight years before he came to us !!! 

    So this will be a challenge for us but we are going to do our utmost best for our lovely resident and their family.

    Take care and look forward to any valuable information you may be able to give us in the near future

    Kind regards

    Jane x

  • A heartwarming post to know that there are homes out there that really do care for and respect their residents. We hear so much negative news on homes and fear that letting our loved ones stay in homes for either respite or permanently, is a fear that we, as their main carer have to place them into a place that we don't feel confident will try to understand this horrible and complicated disease calling itself PSP. Like Heady says, if you weren't so far away I think we would all be queuing to have our loved ones stay with you when the time comes that we can't manage at home any longer. Thankyou for caring. Kate xx

  • Thanks Kate

    Keep the faith 

    Jane x

  • hi jane [and all~]welcome 2 the site

    lol jill

    :PsP   person in uk

    xxxxx

  • Hi Jill

    Thanks PSP person at first when I heard PSP it reminded me of the hand set my son used to use " Play Station Pad " so that's how I remember it .

    Take care

    Jane x

  • How refreshing to read your post. If only other people giving respite/full care would be as active about finding information like you. I expect you have done so, but if you contact the PSP Organisation, there is a information pack that they send to Doctors etc, my GP has had one, this may well be something they could send you too, if you wish.

  • Hi Gilljan

    Already been given a pack from the family which is being passed onto my carers 

    Thanks again

    Jane

  • Hi for more information on PSP contact PSPA Helpline 0300 0110 122.  They have a pack of information for care homes.  I only found out about it last week and requested pack to be sent to M's nursing home.

  • Hi there

    Thanks for input as said to Gilljan already been given one and taking it all in 

    Jane 

  • Welcome Jane, and thank you so much for showing us all that there are certainly care/nursing home staff who really care about their residents/patients.

    My husband has been in a home since last October and the staff there have been brilliant. When he first went in the PSP Association sent a professional information pack to the manageress and she was thrilled to receive it. She hoped to do a training session with the staff because no one there had come across PSP before.

    I am sure the PSPA would send information to you also if you contact them.

  • Hi there

    Thanks for that 

    Yes already got all the information packs from the family and hopefully going to sort out some training from the PSPA everyone being helpful so far

    Thanks again

    Jane 

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