Hi my first blog in what I think will be many as I try to keep my sanity by putting fingers to keyboard and trying to let off a bit of steam. My dear Mum and our family have been on a horrific rollercoaster ride for the past couple of years. Mum's symptoms started 5 years ago and it was only this month that Addenbrooks memory clinic gave a diagnosis of psp. In the last couple of years Mum has been told she has had 5 mini strokes and then told symptoms were due to depression and anxiety, next she was refused any more help as the emotional and well-being clinic she was attending was sufficient. Next came the social workers visiting at 8.30pm one night to section Mum. The hospital diagnosed dementia with Lewy Bodies. Mum was not aloud home and was put in an awful emi unit in a nursing home. Mum was at high risk of falls to begin with and as her mobility got worse they took her off the one to one care unbeknown to us. In January this year Mum came home as usual for a couple of hours a day. One day she told us that she had been sexually abused by a resident. Mum was taken back to the home and the family were not allowed to see or speak to Mum for couple of days and then they were only able to see Mum in pairs and in a communal place. The home then blamed my stepfather saying Mum had written it was him which was not true. A safeguarding investigation began. Mum then got stressed and got chest pains and was taken to hospital in February. Mum was ok but they kept her as the family were worried about sending her back to the home. Safeguarding investigation meeting after meeting took place along side hospital discharge meetings. I wanted Mum to come and live with me but I was told I was inexperienced with my many years as a carer and as her daughter. After many battles including Mum getting a nasty chest infection, mouth ulcers and mouth thrush they finally discharged her to another emissions unit I n a nursing home. Nothing came from the investigation as nothing could be proved. However a safeguard plan was drawn up which means family can not take Mum anywhere without a care staff member coming too. We can not feed her or move her and we have to leave bedroom door open when we visit. The irony of it all. The safeguarding plan is supposed to be reviewed after one month of Mum moving in somewhere but it has now been 2 months. A meeting last week saw Mum loose her full funding as she has no longer got challenging behaviours. Social services are back in the seat and another meeting is due in a couple of weeks to discuss funding and safeguarding. I have told them that I now want both my Mum and stepfather to live with me as he has now developed a heart problem and has results back that shows he has asbestosis. I live in Essex and parents are in Stafford so commuting is getting me down. Oh and my sister has stolen all Mum's jewellery and valuables to feed her drink problem and refuses to see Mum through guilt which upsets Mum. I think there is going to be another battle to get social services to agree to let Mum come and live with me but both Mum and stepfather want to come down. Off to send a lovely big goodies parcel to Mum, keep smiling 😀

18 Replies

  • Ok busylizzy2 you have had a time off it, I thought we had all had a bad time, you blog is unbelievable, that this could happen, what is the world coming to.

    I hope you sort it all out, and get the result that you want. I think sometimes socials services are rule to themselves.

    We live in Hertfordshire, we moved up from North london, and the care is 100% better up here.

    Take care of yourself and I pray that you are able to sort out the horrible problem.

    Yvonne xxxxxx.

  • Thank you Yvonne for your kind words will keep you posted and hopefully I will be able to bring them here x

  • Hi busylizzie, welcome to the best site on the Internet. Your reasons for joining us sound horrendous! My thoughts are with you at this terrible time!

    What I don't understand, why are you not allowed access to your Mum, if it's your stepfather that they are accusing? We have recently had to put my mother into care. Safe guarding issues were the priority, she has Alzheimer's and her partner is an alcoholic. She was found wandering the streets on a Cold February evening! There has never been a time that we can't go and see her. I know you problems are completely different, but this does seem over the top! I would start writing letters to anybody and everyone you can think of. Doctor, MP, Sec. Of State. PM., the lot!!!

    Have you joined the PSPA yet? They offer loads of support, they may be able to point you in the right direction, in view of getting your Mum to live with you!

    Now you have found us, please, please keep in touch. We all rant, rave, kick and scream and also share some good times. The site is for carers like me, hubby has PSP, or sufferers of this evil disease. We will try and help with advise or just a much needed ear to listen to your troubles!

    Sending you lots of love and a big hug, sounds as if you need one!

    Lots of love


  • Hi Heady, thank you for your kind words and welcomed advice. Unfortunately Mum was taken back to the home by social services who then ironically said they would not be involved in the situation because she was funded by the. Just tried to get care quality commission involved but they said they would not until safeguarding team had completed their investigation. I am now going to contact them to investigate all the complaints we have about the home and how social services dealt with the situation, Mum she should never had been taken back there especially with the resident she accused still staying there. The home told us we couldn't speak or see Mum immediately after because they thought we would put ideas in her head and encourage her to say things which was ridiculous, this was also the reason why we could only see her in pairs and in a communal area. We can not go out with Mum on our own now or have her bedroom door shut because we may give her something to eat that may choke her which is even more ridiculous. When it suits the nursing home we can toilet her, move her and feed her, this is when they are short staffed which is most weekends. Will be glad to sort it all out at the next social service meeting. 😀

  • I meant to say funded by nhs and not .the just. Typing era lol x

  • Oh Busylizzy, PSP is bad enough without all the extra problems your mum and the family have had to endure. I can't add anything to what Heady and Yvonne have said but sincerely hope you all get what you want and what is best for your mum.

    Best wishes.

    Keep blogging.

    Nanna B

  • Thanks Manna will keep everyone updated. It has been an awful time but I have prayed and hope for Mum to come and live with me and have quality of life x

  • My mind is blown away. I am not usually speechless in fact all I can do is say kuddos to Headys Post. I'm from the US and I know nothing about how they can come in and "safeguard" a person in the UK. So let me just say reread all your posts because there will be things you missed the first time that may be a help to you. Don't let anyone bully you folks around. curepsp.org is also a good site to find info. And sadly I welcome you to this site. Jewelry is of less import than the love of your sister to your mum. If you think it is a good thing, encourage that relationship to grow.

    I'm so sorry for you. If you are a spiritual person, seek strength through prayer.

    keep your heart and mind strong by doing other things than caregiving, And finally embrace your new normal seek and hold on to joy. and tell us how life is going. We are all here.


    "But the fruit of the Spirit is love, joy, peace longsuffering, goodness, faith, meekness, temperance: against such there is no law. " Galatians 5:22,23

    "I cando all things through Christ who strengthens me" Philippians 4:13

  • Amen x




  • Praying for you all.

  • Oh my goodness what an awful story! My friend is in Stoke just up the road from you has had a totally different experience. She has just been recommend for CHC for the second year (with one to one). She has PSP and she has no challenging behaviour at all! Severe danger of falls and choking; I cannot understand how things down in Stafford are so different. Also why weren't the police informed of a possible assault?

  • Hi Joeglad, We had a meeting on the 17th with Continuing Health Care Funding lady and 2 social service people and a social worker from the Stafford Hospital. To be honest I think alot of the problems have arisen because Stafford Hospital have such a bad reputation with all those people dying and all the media coverage it has had and what has happen with Mum has become an arse covering exercise for them. I think they already new Mum was going to loose her funding before we even discussed it and that is why social services were there. I told my Step Dad what you had said and he was very interested and we shall appeal but what we are just wanting to do more than anything is to get Mum away from there and get them both here. The Police have been involved and waited until the safeguarding team completed their investigation. The police attended the safeguarding meetings. But I always knew that the outcome of the investigation was going to be inconclusive. Mums word against the resident and the home. A medical revealed no penetration which was a relief but I think something did go on. When Mum was in hospital she kept writing down "please protect me from ...' It was enough to traumatise her which is awlful. Will be phoning the social worker tomorrow to find out when the next meeting is. Will keep you updated. x

  • I was at the meeting just this week re CHC. My friend got again because of severe danger of falls and choking! She is in a care home but it is a good one - she has a carer with her 24 hours a day!

    Can't believe you were turned down. I understand that you want her out of there but please be warned about the task you will be taking on. My friend now needs 2 people to support her if she decides to walk and although not heavy when she starts to fall she can take people down with her!

    Do put in an appeal. If you need some support or help just ask.

  • Joeglad is right about the fact that a person can take people down with them and most likely hurt a body part of that person...ie my knee! However with proper training. The comfort of knowing how to lift a person combined with knowing that your mum is safe even if it is just from a perceived fear, is worth having her home.

    Do keep us updated . Take some good , deep, healing breaths for your self and continue to pray. Prayers are said for you and yours.


  • Hi busylizzy2 , omg as if psp isnt enough on its own hope you get it sorted the way you wish for sending big hugs your way xx

  • Sounds horrendous and there is no authority trying to help you sort things out. What is the world coming to! I hope that you can soon get things sorted and you can get on with the job of caring for your mum, shame on the powers that be, sounds like they all need to sit round the table together. Xx

  • o I do feel for you . please please do not think I am in anyway shape or form agreeing that the home is RIGHt .

    my mother was in a nursing home after having a severe stroke . one of the hardest things in had to handle was having to agree for her to go .

    We did check quite.a few out first .. on the whole they were pretty good . my mothers case could be challenging on times although she still had wits about her .

    having said that, she would imaging things , see things , and dream and hallucinate .

    we went daily to be with her feeding and General making sure we could do all we could to make her feel safe . one day I went in and I couldn't pacify her . she thought I was having an affair with one particular carer who was particularly nice .

    she worried about my husband . told me she never thought I would do a thing like that . I don't think she ever really believed that it wasn't true .

    by the way It wasn't lol ..

    that was just one of the incidences .

    when something is worrying stressing me , I write it down to try and get it out of my head for. While . good look to you and I do hope it will come to a.good conclusion and you will have her home with you once more , x

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