Essentially Liz sustained some bruises and accused a member of staff of harming her. That was five months ago. The Social Services put restrictions on both the staff and myself whilst they investigated it. I had seen Liz that day and so had 'opportunity' and was swept up in the net.
The Police investigated and found no admissible evidence. That was two months ago. The Social Services have dragged their feet for five months. I suspect that they felt that going slowly meant Liz was safe whilst they tried to work out what to do.
Yesterday, with the help of a Solicitors letter laying out the law and the limitations of their powers they finally closed the investigation. 'Insufficient evidence.'
Some weeks back Liz had said, to me, that she had injured herself. My dear lovely was so frustrated that I would not take her home to be cared for there. My heart goes out to her. PSP is so cruel.
I could not cope with being on the forum because I was feeling so low at being subjected to investigations along with the staff at the home. Yet I had to be there for her no matter what. I have also read far more policy and law than is good for one. It has been quite frightening and at times most intense.
The Social Services were bullish and when I challenged them on the law they said I was wrong and that their legal department had advised them. They finally quoted the law they were relying on and reading what they sent to me they could not have been to their legal department. One quote was from a completely irrelevant law.
Well, we got it all stopped and though feeling rather mauled Liz and I are out of the tunnel. This process has been very hard on her too.
I am writing some of the detail here as one solicitor who specialises in the laws around Adult Care told me that it is fairly common for Social Services to ignore the law in this area knowing that it is very expensive for the carer to take them to the Court of Protection.
So if anyone else finds themselves in this position I am happy comment and, or to pass them on to the solicitor I used. I telephoned at least a dozen before I found one who really knew their stuff. He has been the lead solicitor for Adult Social Care Law in four different Counties. He is good and it only took one letter to stop the Social Services taking complete control unlawfully.
On a sadder note Liz is at the stage where she can only manage a few hand squeezes to communicate. She tires quickly and and ceases squeezing. We now have palliative care on standby, but not yet activated.
We have some time left to share and Liz has asked me to read poetry to her on my visits.
I have started writing a book based on research which I began when I was twenty-one and which I have continued throughout my whole life. I will probably have to pay people to take a copy, but it has been a life long passion. So I will try to have a presence here, but not as before.
Warmly to all and thanks for being there.
Kevin
P.S. Thanks for the P.M''s from some - They were very supportive.
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Hi Kevin, so pleased you are back with us and that things are hopefully resolved completely. You have been in my thoughts and prayers and will continue to be so.
Love and hugs.
XxxX
Spending time with your lovely Liz reading poetry is most important. Working on you book will be a very productive use of your time, as l feel it will be a help to others in the future. I will buy it!
Take care & know that you & Liz are loved by many. Sending hugs & love to you both... Granni B
Welcome back. Have been thinking about the two of you and wondering how things were going. I was checking the other day the last time you posted. I’m glad you are back.
Sad to hear of Liz’s decline.
What an ordeal to go through when things are already physically and emotionally stretched. More drama is not to be encouraged.
I too- even as a relative new comer to this forum - was wondering how you and Liz were doing, although I am aghast at the tough time you have experienced. Keep strong and it’s good to hear from you again.
Welcome back Kevin, think about you most days. Happy it is all sorted out, and you are able to have time alone with Liz, you must of been to hell and back, really feel for you. Happy you are are writing your book, I for one will be buying it. Sorry to hear that Liz is not good, hopefully you can both enjoy the poetry together. Sending you the biggest hug ever. Yvonne xxxxxxx
So glad things have settled down and the investigation is over. I am an artist but will the 24 hour demand of taking care of my husband I just can’t seem to start anything creative. The poetry sounds so nice. Nancyxxx
Darling Kevin, you are a trooper, a lifeline to many and many many many times to me! You have NO NEED to apologise for your absence, everyone here gets it and understands! Welcome back my dear friend, one friend I shall never be without! We all love you. My love to you both, always x
Have thought about you and Liz often and I am so sad at what a dreadful time you have been dealing with. Also sorry to read that Liz’s health has worsened. My thoughts are with you both. Love Jxx
Dear kevin , I have wondered every day how you and Liz are getting on .your an inspiration to to me and my family, and I'm sure for many people who read this site.. one day I hope to meet you , and thank you in person for the help and advice you have posted for us .. good wishes to you and your lovley Liz.. . I too will buy your book , let us know when we can get it ...Brenda xxx..
Kevin, it has been very weird on here without you, so pleased that you are back. What a troublesome time for you, it is just as well you are able to fight for your rights.
I hope that you and Liz will be able to have some nice peaceful times, quietly enjoying poetry or just the peace of being together.
You have been and will continue to be in my thoughts and prayers. Julie
Welcome back - you have been missed. What a dreadful time you have both had. Thank you for being so candid - anyone of us could find ourselves in this situation so by forewarning us we are better prepared.
Hope Liz will find pleasure and comfort in the poetry you read to her.
Sending you both love and hugs
Tippy
Wow,like you needed more to deal with
Hugs to you both,look forward to reading your posting again.
Hi Kevin, I too went through a "safeguarding" investigation which was generated by bruising on her wrists. It is a harrowing experience. The bruising was caused by the electronic stand aid. I feel for you. Welcome back. Rob
So pleased to see you back Kevin. You must have been to hell and back. As if you did not have to bough to cope with. Hope you have been taking care of yourself during this dark period. Perhaps you and Liz can now have some quality time together. Hugs Pauline x
Dear Man, welcome back, I'm so pleased that you feel able to rejoin us and share your story so honestly even to the point of wanting to help others in similar situations . You are a trouper and Liz is a fortunate lady to have your love and support through the most gruelling of times. Keep on trying to make her time and on this earth more fulfilled, I never read poetry to Ben, not sure it would have been easy to listen to, it's a skill I have never possessed. Take good care of yourself and I will be thinking of you both fondly,
Good to see you back Kevin. What a terrible time you have had. So sorry to hear that Liz has declined. You have been such a support to many on here. It's now time to receive some. Unimaginable what you and Liz have gone through. Enjoy your time with her. Sending big hugs and loads of prayers to you both. xx
What an awful thing to have gone through, I am so sorry, but thankful that you are a strong enough person to have got through it, I don't know what I would have done in such a situation.
I hope that you and Liz can put it behind you and get the most out of your time together.
You have certainly been greatly missed on this forum and we are very glad to have you back.
Although I don’t read the news every day, I have certainly missed your calm and to the point reactions to other people’s problems. So a big welcome back,,,,
On the other hand, we are very sorry to hear that your dear Liz has stepped down one more latch of the ladder, or should I say: one more step up The ladder? Actually, I prefer this last one, I wish you both good reading hours together in
Peace and I hope you can put the bad moments behind you.
Kevin, I`m so sorry that you`ve had to endure such a horrendous time. Poor Liz, I`m sure she was just trying to express what many PSP sufferers feel - such frustration !
You have been in my thoughts but glad to hear you are both OK -ish.
Kevin, I am truly sorry for the nightmare you have been through, as if we don’t have enough problems, I can only thank god that Liz has such a wonderful shining star to support her, and all your amazing information you share with us all, I would not have a clue where to start in battles with social services, you are a true hero.
I’m sorry Liz is in a lower plane now, it is so heartbreaking for everyone.
Looking forward to more news on your book, we will be queuing up for it.
Hope you managed to have some happy times over Christmas and new year, you were both in my thoughts
We just have to try our best to help our loved ones, however many obstacles are presented to us
Just like everyone else here on this forum, I was thinking of you. I know how hard it is to care for and watch a love one decline due to this cruel disease, and I understand the need to separate from this forum.
It is good you are back. Each time I see a question from new people about the NIS/UK health care/support, I think of you, hoping that you will reply. You always have a wealth of helpful information. As long as I have been on this site, you have been one of the pillars of wisdom.
No explanation required Kevin. I know that many of us here on the forum continually sent prayers for Liz and you. We're happy to have you back... good luck with your book.
I hope you have some peace now, to just enjoy your moments together.
Dawn xx
Dear Kevin, my time here on this site was five years ago so you do not 'know' of me. What you have just experienced with your wife in the nursing home happened to me and my father. It really is unbelievable that such cruel and ignorant practices go on in our supposedly civilised system of living and care in the UK. There are so many power games going on and ignorance too. I managed to get my father out of that awful home he was in, they simply did not understand the implications of PSP. It caused us so much unhappiness on top of it all. I turned to solicitors, our MP, the executive director of the council ward we were in, the Care Quality Commission officers and goodness knows who else. Once we were gone there was a big meeting over the whole thing. A good few months afterwards I met one of the nurses who used to work there and he told me that all the staff in the home had lost their jobs and had been replaced. They really had been unreasonably horrid to us. It gave me no pleasure to learn this but I did feel that my actions and opinions had been validated. The results of dad's brain biopsy confirmed that he had PSP something which they had denied all the time. Hence they eventually didn't have a leg to stand on. They had not treated him appropriately. Talk about cuts and bruises and sores, well I know only that if I had kept him at home and got him into the condition they had, I would probably have ended up in prison. Actually, I did govto the police to report the mis treatment too, they didn't want to know. Sadly, probably the best you can wish for your dear wife is that her suffering is not protracted. How you will recover from it, well I do not know, but I'm not over it yet and five years have passed. Best wishes and lots of strength. I used to read poetry to my dad, and look through old photographs. X
I have a recollection of your name. I go back to the Peter Jones day's, but would read posts on Liz's account. So greetings!
You were back in the time when PSP was'nt well known. Increasingly I find staff have a better awareness of the illness. Times are getting better in that regard. But, still the care industry is a nightmare.
What you went through was horrendous. It sounds to me that the issue was'nt just the need to sack a few staff. If someone was in such bad condition the manage should have been investigated too.
Having a struggle like yours on top of the loss and heartbreak is a massive stressor. I struggled to get through some days.
You must have been very strong and determined. Bravo!
I'm so sorry for your loss, but I agree with you, I just wan't my Liz's suferring to end.
Kevin... just a thought. I have fellow in my Facebook group with Parkinson's who has written a book of poetry. Proceeds from book sales go to the Michael J Fox Foundation for Parkinson's research. I have read some of his work and enjoyed it so much, that I ordered the book. You might want to look into it, it's called; A Poet's Diary: The Mind of a Parkie by Stan Bryant.
What a loveley thought. It closes the circle as it were. I like that.
Liz has two anthologies which she has had most of her life. She wants those reading to her. The poems will bring back memories of times and more for her.
I am touched by your care and thoughtfulness, very.
Hello Kevin. Good to see you back. Sorry to hear that Liz is worse but glad that this sorry story has now been resolved. Always thinking of you and sending you hugs, Madeleine
What have you gone through with Liz. I am new. Can you tell me about thickeners with drinks. My husband has more trouble speaking now anything similar with your wife can you relate. Even writing difficult. He has shakes in his legs. What should I be aware of. The doc that told us a neurologist cruel said look up on internet. My daughters I’m beginning told my husband what he had I don’t know if they said what to expect I am dark. One daughter seldom visits and other travels from another province when she can. Can you enlighten me. Thanks in advance.
I don't know which country you are in so some of what I might say might not be too relevant.
I will do my best.
Thickeners for drinks: Nestle Resource is a very good product which does not have a taste. There are others.
Your neurologist does sound uncaring. Can you get a different one? With PSP being so rare it might just be he does not know and feels threatened.
There are different ways of helping with the leg shaking:
Avoid stimulants like coffee.
Massaging the legs and physio.
Exercising the legs. Exercise pedals on the floor.
Exercise in bed by pushing against a pillow at the bottom of the bed. First one leg then the other... Sort of like walking, each leg in turn.
Sometimes CBD oil can help with this. If it is legal in your country. CBD oil is cannabis oul with the 'drug' elements removed. It does not get a person 'high'.
There are drugs which are used for Parkinon's tremor. If none of the above help then you might want to talk to your doctor about these.
Yes, being a carer is often a lonely and hard position. Do care for yourself too. Get what breaks you can and as much rest that you can. Try to see friends too. It helps. If caring were a job it would breach a lot of employment laws in many countries!
Anyway the information above is drawn from other posters here over the years.
It is better to start a new conversation rather than put it on an existing thread. The way Health Unlocked works your post is not likely to be seen by many people and so you will miss a lot of input from others. It's sort of buried in this one. (I am not complaining).
Kevin. I've just now seen this post so see what you have had to go through.
Could you pass on the details of your solicitor please.
I'm sending another complaint to social services also. I've followed the steps you outlined in your other post and I'm being ignored by social services and they won't put in writing what and why has gone on.
However warning the Social Services team that you will do that if they don't respond within say 7 or 14 fourteen days. That should really get their attention.
Here is the chap I used. Do tell him I recommended him. Not for my own vanity, there is a way he makes things easier which I don't want to write here. He discussed the case for some 40 minutes on the phone before we agreed to go forwards with a letter. Very on the ball chap.
Afterthought, if your Mum has Mental Capacity to make the decision she could authorise you to see her file on her behalf. That is her legal right. If she hasn't goot capacity you might still have a legal right to see the file. If you have an LPA for Health and welfare and she does not have capacity to authorise seeing her file you have the powers to authorise that yourself after a capacity test on that decision. If you request a capacity test then they must comply, or be in a position of unlawfully denying your power as an Attorney.
Wishing you the best... Come back or pm me whenever you want.
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Psp pueomia in last stages
At last she gets it
