PSP Association
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I am now required to be Orpheus!

Hi Folks

Orpheus travelled into the Underworld to rescue Eurydice.

Our experience of PSP has been that all along. Protecting Liz from various mythical creatures to ensure her well being. The one eyed CCG, the overcautious nurse reporting bruises caused by falling after impulsive unatended attempts to walk, working with Care Agencies to loose poor carers and to make it work well for her as they faced staff shortages and resource issues. And, so it goes on.

Liz is now in a Nursing Home. She became too difficult to keep her at home. Her last two deteriorations', one quickly following on from the other had all but deprived her of intelligible speech and significant cognitive ability. Her regular passive aggression, interspersed with her old self expressing deep love and gratitude, became too much to cope with.

A week ago on Saturday it all broke down and we had to get her into a nursing home.

She is heart broken. So am I.

We have agreed to dissolve as many assets as we can to get her into a better home. Hence the reference to the Underworld, the dreadful place she is in now.

They have triggered a Deprivation of Liberty under the Care Act. She asked for bed bars to stop her falling out of bed. They decided that she did not have capacity to make that decision. They did not talk to me and they triggered a major legal process to remove her liberty. She asked for them to stop her rolling out of bed, which has done in the past. They are frightened of being accused of illegal restraint. The thing is that the power to make those decisions on her behalf will most likely be given to me and Liz has utter faith in me doing what she wants anyway. Why on earth did they not speak to me?

Though this changes nothing in terms of her care it has the potential for taking away her freedom to choose whilst she still can. Another loss for her to face.

What is going on?

Yet again we have an agency pressing the red button on a major legal process in order not to be exposed to litigation and or prosecution for doing what is necessary to, "keep their patient safe." In a proper legal manner. Risk Averse Syndrome.

I am so angry. On top of all the other losses she has endured she will have to face that of knowing she cannot make decisions about her choices whenever the Nursing home doubt them. She will have to face, "We need to speak to Kevin first." How damnably undermining of the last vestiges of her self esteem!

Meanwhile that same Nursing Home is working with us to get her transferred to somewhere more suitable.

The world is mad, so yet again I am fighting to preserve what is best for her against those professing to help.

I am fortunate to have been trained in Deprivation of Liberty under the Care Act and so that is not a worry... It will fall under first examination. Their application is deeply flawed.

My rant? Caring is hard enough. Loosing Liz piece by piece is gruelling. On top of that I must navigate the Styx?

We are both heart broken she is not at home, but care here is untenable.

I hope to get her moved tomorrow or on Wednesday.

I never knew that care meant fighting this hard. I will not give in.

Waiving

Kevin

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Thank god your back, but OMG Kevin what are you both going through....HELL.

Reading your post turned my stomach, we are all behind you, just wish there was something to help you through, and get this HELL sorted, which I’m sure you will manage to do, they have chosen the wrong person to fight with.

But Kevin know you are doing the best you can, always, we all know that, that is who you are and what you do.

Love and hugs

Thinking of you both

Helen xxx

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You are in all our thoughts, you have helped so many of us on this site, we are all wishing you the strength to cope with the continuing battle you are now faced with. JR61 x

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So sorry for you and Liz. My mum had to go into nursing care and it felt like a constant battle. By the end I was totally disillusioned by the whole system. Lot of covering their own backs and not enough putting the patients needs first. You are strong and intelligent and will get the best for Liz. Who fights the battles for those who are on there own. That worries me a lot. Lots of hugs to you both at this really stressful and upsetting time XX

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Hi Doreen C

Thanks for the confidence. I need it. Facing these legal frameworks is scary and I know how to navigate them and how to do the leagal bit. They don't like that much, I am sure am marked as troublesome. :)

"Who fights the battle for those on their own."

That is my constant dismay.

I feel so very small right now, but I will not give up.

Hugs to you and yours.

xx

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Who fights the battles for those that are there on their own?That is a sobering question and I think we know the answer.No one does! And we who are the surviving one may just find ourselves in that position eventually.

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Hi JantheNana

Very sobering.

I was in the Nursing Home yesterday talking a very fit eighty year old guy. His wife (75 yrs) had been in there for over five years. He was clearly a bright ex professional guy who could mange his affairs. Hew bewailed how they got turned down for CHC funding and the five years had impoverished him, but he regretted it little.

He knew all about Care to be Different, but said his mind was not so good now and mastering the process and fighting it had been too difficult. He did not want to go down the advocacy route, but like many elderly people he accepted his fate.

There must be so many like that.

Yes, our turn next and I will become he I expect.

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Heartbreaking to say the least.My thoughts and prayers are with you!

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You are in my thoughts, I hope your problems are soon sorted out, have missed reading your posts, keep ranting , good luck hope you find a nice home for liz , and the understanding you both deserve, ...love Brenda xx

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Thanks Brenda - We're nearly there with a better Nursing Home now - It's been rather intense!

Love

Kevin

xx

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I am sitting here speechless and shocked at everything that's happening to both of you. In your position I would be terrified as I wouldn't know where to start. Thank God you have knowledge of the system. I always thought that in a care home they would simply do all that it took to keep the patient safe. The fact that this doesn't happen shocks me to the core. Kevin, you have looked after Liz so well over the years and you will continue to do so but I hope the situation gets resolved quickly while you still have the energy. This shouldn't have to be a battle - the carers should be allowed simply to care not use their energy to fight. However, I know you will win!

Margaret

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Hi Margaret

Liz requested bed sides as she is frightened of falling out of bed. They have been in use fir many decades as a safety feature. Now they are seen as restraint and so she needs to have capacity to make that decision. The home decided she did not have capacity under the Care Act and so have had to make an application under the Deprivation of Liberty Safeguards which perversely may deprive her of the liberty to make her own decisions on many issues. She does have capacity to make that decision. The home is misusing the Act IMO.

I am not too worried about it as I am sure we can sort it out when an Assessor is appointed.

Its just more stress!

Thanks

Kevin

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I had a feeling something was going on when you hadn't posted here for a while but I never imagined things had changed so dramatically for you. I am sure you will sort it out but it shouldn't be this difficult. Take care of yourself and I hope Liz will be safe and comfortable in her new home.

Margaret

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Hi Margaret

Well at first the silence was because things were going so well and Liz and I were embarking on some projects, redecorating and finally fixing the wild life pond and water feature.

Then she had a step down and care was more intense and her speech all but went.

Then suddenly another step down and she became quite hostile... The care broke down within two days of that.

This will be a lot better. I think I had been caring beyond my endurance for a long time.

Best

Kevin

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I'm surprised as, when I was nursing Chris at home the Palliative care team always put the bed sides up automatically. It just makes sense.

x

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Now please let's not use common sense! ;)

I had a good long chat with the manager of the new home today. Liz moves on Thursday. She was very annoyed at the overuse of Deprivation of Liberty Safeguards. She said everyone is so frightened of falling foul of the Care Act that they seek this to protect themselves. She said the cost nationally had become immense. The Act is exceptionally good in some places with regard reaching balances between freedom to choose and preventing unnecessary and un-monitored deprivation of liberty. Like persuading a patient suffering from dementia not to go out because her son was about to arrive when he wasn't, and so tricking them, not to l;eave, or simply locking doors.

However some of the legal part is poorly defined and quite frankly a mess. There is no appeal process other than the Court of Protection which is hugely expensive and there are just far too few people trained to act as Best Interest Decision Makers and to assess the cases needing attention.

Sorry, that turned into a bit of a rant.

Liz will be out of the home on Thursday and the process will fail if they have not assessed by Wednesday. Apparently I would most likely be appointed her Best Interest Decision Maker, but I just don't want her to suffer from having her freedom taken over by me or anyone else.

Oh, back to bedsides... There have been two major Crown Court rulings recently and so anything which restricts freedom, if the person is unable to return home, now comes under the Act's purview.

xx

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I can think of so many better ways to use the money this must cost !!!

xx

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Kevin I was thinking of you and Liz only today. What a bloody nightmare? These people are uncaring and frankly a disgrace to the caring profession. Assuming we have one left?

Oddly enough when Garry was at home I had an officer from the council tell me that they might have to use the very same act!! I remember saying to her: " what on earth are you talking about? I have never heard such rubbish". I then told her I would broadcast it to all and sundry if they tried to do that! She shut up pretty quickly. Never heard another word about it. It is the last thing you need when you are losing the person you love?

You have been amazing Kevin, and Liz has been so well looked after. I know the pain this is causing you both. It is the worst feeling in the world.

If you can get her moved to a place where they actually care about people it will be a hugh relief to you both. I really feel heartbroken for the pair of you.

Just remember to rest and take care of yourself? Liz will need you more now than ever. Poor lady. Give her my love.

Love to you too and don't beat yourself up about this. You have been so good and you will continue to be too. You will visit her all the time and believe me it is so tiring. Don't forget we are all here for you? Lots of shoulders to cry on Kevin. Don't bottle things up because then you will be ill.

A great big hug for you and one for Liz too. Thinking of you both.

Marie x

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Thanks Marie

There is a superb Nursing Home a few hundred meters from here. We are well on the way to getting her transferred. CCG tell me possibly Thursday or Friday.

Hugs to you too

Kevin

xx

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Hugs to both of you. So sorry the situation became unmanageable at home. Everyone on this site will know choosing for Liz to go into care will have been the very last resort.

You have helped so many of us (I'm sure my recent success with CHC funding was down to your advice) now it's time to help yourselves. Even this will benefit the rest of us because I know you will share.

I wish you both strength and my love to you two people I've never met but feel I know quite well.

Fight on Kevin and keep the love flowing.

Rosemary

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Thanks Rosemary

The support from this the folks here really keeps us going.

Yes, its the love that binds and makes us strong.

Best

Kevin

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Oh Kevin so sorry to hear all that you are going through, sound dreadful, I think you have looked after Liz so well, it must be so hard for you too come to this. It this was me in your position, I would be totally lost. Kevin you have been a wonderful career to Liz, you can feel in your post how much you care for each other. I hope you can get the care home that you want, really feel for you Kevin. Sending you a big hug. Yvonne xxxxx

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Thanks Yvonne

Warmly

Kevin

xxx

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Kevin we are all here for you xxxx

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Oh my that is terrorizing. I pray for you and Liz. May God give you wisdom and strenth. May the peace of God be with Liz .Amen

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Thanks for your prayers... It is such a continual struggle.

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Kevin,you have been a trooper for your liz,I know one gets so very tiered of explaining and fighting for every little thing.

Don't forget to take care of yourself.

Dee

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Having read your previous posts I am aware that you are not daunted by anything that comes your way. What a stressful and horrendous time you are both going through. My very best wishes to you both. Jxx

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Thanks Zeberdee

But you know I do get daunted. This news floored me. For a while I felt so helpless.

Today I have been like a terrier on steroids.

I will do a post on that at the bottom for all to see. I think I can see the sunlight. We are nearly there!

Thanks for your support - It helps a lot!

Kevin

xx

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No doubt about it Kevin we all need support and so glad we get lots of it on this site. Really hope that the sunlight shines extra bright for you and your Liz. Love jxx

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Kevin, I am so sorry this must be heartbreaking for you both. Xx

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Kevin darling such a sad post. As we’ve already talked in depth I know understand and appreciate how angry and devastated you are! You know we are all here for you. We shall have our day out soon and we shall put the world to rights! Psp f**** up everything but I know you’ll continue to fight Liz’s corner day and night, just as we all do! Hugest hugs x

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Hi Amanda

Light at the end of the tunnel today.

I will post at the bottom with the news.

You have been an absolute trooper with your support and advice.

Lunch on me!

Hugs from us both

Kevin

xx

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No way! Already told mum lunch is on me with liquid, obviously! Without your help we’d be truly screwed! X

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Chuckles - I will fight you over that one. I too would have been screwed if it were not for you and the other folk here.

X

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What a nightmare !!!

I hope by now you have found an appropriate care home for Liz and things have been sorted. Its bad enough dealing with the panic when there is a downturn for our loved one without being out of synch with those who should be on your side.

Its all so sad, Kevin. Big hugs to you both, love from Jean xx

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Kevin I am so sorry you are struggling with this. The situation sounds mad as surely they should have been just as worried about being accused of negligence if Liz had fallen out of bed because they didn't give her bed bars.

I do hope that you can find a suitable and sympathetic nursing home asap. They do exist - we had one. It was still exhausting as I spent every day with Derek, but not as exhausting or impossible as trying to care for him at home alone at night and between carer visits. Even though the nursing home was excellent, and the staff caring, I did feel it was hard work to get what he needed as I had to be his voice as he couldn't explain to them. Because I was there most of the day every day it became a sort of team task to keep him safe and happy. We were lucky, I think, that the home manager and one of the nurses in particular became interested in PSP and would try to think up ways of tackling the issues.

Try not to let the guilt take over, it IS possible to find caring people who will make this easier for both of you.

Vicki

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Thanks Vicki

There is a superb home just a few hundred meters from our house. They have accepted her and we are just waiting for the CCG to approve part funding. The fee is eye watering so we depend on the CCG to pay their max. Currently £1200.00 and we will sell the door knobs off the house if necesary to make up the rest.

They have experience of PSP and they are trained in End of Life Care... It looks like something out of Downton Abbey inside. Fresh food cooked for every meal and a menu choice as well as A la Carte if pre-ordered.

We visited it a year and a half ago and Liz loved it.

Fingers crossed!

Warmly

Kevin

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Kevin_1, in the USA (California) the average nursing home in 2012 was approx $80,000 a year, and the care (changing of diapers, hand feeding etc) is often questionable. My son was kept at home. I hired a caretaker to help me.

My mom died in 2002. My father for two years had her in a nursing home, my mom had suffered a stroke, and could not walk. My dad paid out of pocket. In 2002 the Nursing home was costing my dad $60,000 a year. From his savings, his pension, my mom's pension, he managed.

I often wish we the USA had the health care system that England has. There is discussion here on that, but only discussion. Our nation is capitalistic, and we tend to lean towards capitalistic solutions rather than a compassionate system where health care should be available to all, rather than $$$$.

Good luck!

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Hi enjoysalud

Gosh, cumulatively that is a lot of money your family has had to pay out. Eye watering!

Its not all roses here. Our health service is chronically underfunded. Many folk think that the government is trying to run it into the ground in order to bring in American style health care. If you will forgive me for saying U.S. health care is five times more expensive that the most expensive European systems and its outcomes are usually poorer with the exception of Cancer and a couple of other things. It's because the insurance companies just pay up and do not scrutinise efficiency. They merely put the premiums up. (I hate those companies!)

Sorry I am off on a rant again!

I was so pleased when Obama made that big first step.

Wishing you the best too

Warmly

Kevin

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Hi Vicki

For once I am not crippling myself with guilt - Well not as much as usual!

Yes, Nursing Homes do take a lot of organising. The one Liz is in currently communicates between themselves very well. But, somehow they can't problem solve to meet Liz's needs so much. When I solve problems the solution does not seem to be passed on. "Not in the Care Plan" I expect. Very often there are no carers on Liz's floor, or the other. They just don't have the staff.

You are amazing to have gone in every day! I plan on four afternoons a week. This is a new learning curve for me.

Best to you

Kevin

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Dear Kevin, just be very careful how you handle the situation. They may well see you as a problem and a trouble maker and they will have the power to control your access to your wife. They could allow monitored visits only or indeed stop your visits for a period. This is what I went through with my father. The problem is that they have so little experience of the condition and do not really understand what is going on. Try to come across as being as accommodating and as reasonable as possible. I think that's your only hope to get a sensible outcome. You won't win against them, they are all powerful especially if they feel threatened. Best wishes and ooh, be so very careful. X

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Hi Nader

You are so correct. Since she has been there I have been very 'co-operative.' However we have an LPA and I am the 'relevant persons representative' and no Dep. Of Liberty can countermand the LPA we have.

You now they are not that powerful. They have a one week order and have to get this assessed by an IMCA under the Capacity Act. If Liz has capacity and she does, then the whole thing folds. Generally there has to be a very good reason for me not to be appointed as her Best Interest Decision Maker if DOLS do go ahead and they would be on sticky ground given that there is an LPA which kicks in if she loses capacity. However the donor (me) under the LPA is not allowed to restrict the Donees (Liz's) liberty. So it does get a little complicated. However the Assessor is obliged to ensure that her views and mine as the key,'interested person' are met as far as is reasonable. The IMCA's (Independent Assessors) are obliged to use minimum restrictions and to weight the 'Interested persons' views very heavily. There was a famous case in Manchester where the Courts fined of Protection fined a Social Services in Manchester well over £ million for failing to do this.

Its just another legal minefield to be navigated when all I want is see see Liz settled and for us to enjoy the best of what we have.

xx

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Im in USA, it looks like we dont have the rules you have to follow but we pay for Nursing home out of pocket. At least if i say my husband needs side rails they best get him side rails as far as i know that is right i need to check it out now. Never head of such a THING. That would make me so mad im mad just thinking about it. Sorry you are dealing with this. God Bless you. JENNY

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Hi Jenny

Yes, its all to do with the Human Rights Act and the Care Act. The first fills in for some parts of your Constitution and the second is there to protect vulnerable people. The Care Act is in desperate need of updating in the light of experience. Its only been extant for fifteen years.

Anyway we are nearly back into daylight now. I hope to move Liz to the new care home tomorrow. I did all the paperwork yesterday.

I may have overreacted a little, the breakdown of care was unexpected and it felt like everything had been taken out of our control by the funders.

Thanks for being there for us.

Kevin

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I understand your feelings its a struggle for everything we do. Glad your wife will be moved in. Hope this helps you both. BLESSINGS TO YOU BOTH.

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What a nightmare to have to deal with on top of what you have to handle to start. The hits just keep coming. Thinking of you and Liz.

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Hi Jeff

Our care system is certainly a test for carer stamina!

We seem to have hit most of the walls on our winding care road. Patience and quiet insistence plus getting informed has helped us through.

We are seeing a little light. I am posting some good news at the bottom of this thread.

Thanks for being supportive. Most appreciated.

Best to you

Kevin

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Oh Kevin, I am so sorry. You have fought so hard to avoid this happening. We know you did your very best and we all know that Liz felt the same.

Hopefully, this new home will work with the tools called, "common sense", not some stupid law., that is not designed for PSP.

Please take very good care of yourself, you still need food and I suspect even more rest. Liz still needs you and once settled, you can finally fulfill the only role that she really needs, you being her husband again. Treasure that feeling.

Sending big hug and much love to you both.

Lots of love

Anne

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Hi Anne

Yes, I had great plans of Liz staying here. Something suddenly changed and she became really quite angry and difficult. She has been the same in the Nursing Home, but not to me now.

I secured part funding for the super nice home today and have a green light for a transfer later this week.

I'll post more at the bottom of this thread so all can see.

I hope you are doing well too.

Lot's of love from us both.

Kevin

xx

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Dear Kevin

So very sorry to hear of this next battle in the PSP journey. You have worked so very hard to protect Liz and give her the very best quality of life. I hope Liz can move somewhere more suitable ASAP.

Big breath in and count to 10 ( at very regular intervals) my only suggestion.

Take care of yourself sending love and hugs to you and Liz

Tippy xx

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Thanks Tippy.

Counting to a hundred works for me ;)

Kevin xx

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Kevin

Always read your posts. I worry about what is ahead for Ruth (still early stages CBD) and me when reading the Herculean trials you are put through - even though you have a load of experience in these worlds. Like all the others above, I wish you every sympathy.

Richard

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Thanks Richard.

Don't worry about what's to come. Each sufferers journey is so different. When I first started this journey I read posts here and was astonished at what carers were achieving and I thought, "I'll never be able to do that." Well, I have not finished the journey and I probably fall short of some of the "Super Carers" who are and have been here, but I seem to have muddled through and got enough right with the support and advice I have received from folk here along with the professional, of course.

Just sometimes I wish there were a little less struggle.

Best to you both

Kevin

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Hey Kevin, I put you up in there in the Super Carers list! You have carried on to the bitter end. I know that might not be as far as you had hoped, but it was as far as you could go. We all reach our limits, I know I had. Steve was booked to go into a home, but he died a few days before he was meant to go in.

The muddling along, that you talk about, what on earth do you think the rest of us have been doing??? Perhaps I am wrong, but that's the best I ever achieved.

I repeat my previous point, you now have the luxury of going back to being Liz's husband. Don't let this precious time go by, with you filled with guilt. Others looked after Steve, those last few days. He died, with me feeling like a wife again. Not an exhausted, frustrated carer. I can't put into words, the comfort that still gives me. Liz only needs love and attention, now you can finally give her this basic requirement that we crave, but very rarely get.

Lots of love

Anne

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Thanks Anne

As always your post is so pertinent. It was hard being a husband whilst doing the toileting care.

Something to look forward to.

Love

Kevin

x

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Muddling along! Muddling along! Love it! Love it! That's me in a nutshell! X

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Oh Kevin

Where do I begin to try to put down in words what I'd like to portray. I'm not very good at writing!

You and Liz are both amazing and have done all you can and more to keep her at home. The care system is a joke in UK and so many people are being failed and their wishes to have care at home denied. It makes my blood boil and I'm constantly saying what about all those people who have no one to be their voice. It scares me to death as I will have no one when i need it to fight my corner. mum is my last family member I have .

You must be beside yourself with worry how Liz is when you are not there in the current pit stop hell hole. Thank god you've managed to get a place somewhere more suitable. I hope it doesn't take her too long to settle once moved.

You know that system so can stand your ground and point out when they are talking tripe. I wouldn't have clue and always given the run around by so called professionals passing the buck elsewhere.

Much love to you both xxx

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Thanks SpiralS

It is quite staggering how much planning takes place without involving the patient or carer. In Mental Health we would have involved the carer at almost every stage.

She moves on Thursday, hopefully. I signed all of the papers off today.

I crammed DOLS and Care Act today... I found that the limitations were far less than the Homes formal letter implied. Though the potential was certainly there.

I'm afraid I am so worn out I tend to see the worst and gear myself up.

Thanks for being there

xxx

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I think that is a natural response to see the worst due to all the battles we have to embark on.

What happened to person centred care!

I have read that Liz will have one to one at the new home so that is lovely for her as that is what is needed after all.

Hugs x

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Dear Kevin and Liz, I am so sorry it has come to this. But doing whats best is not alsways doing what's easy. I am not ffamiliar with this Act, but it seems to me that hospital beds should come with some sort of restraint ie rails....why is this a question or needing POA ?

Well anyway as you say you are well versed and they better be prepared for a damn good answer for their gutless action....

Give Liz a big comfort hug from meand and hears one for you (((HUGS OF COMFORT))) my friend.....

Andrea

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Hi Andrea, thanks things have come together very well today. I talked to the home and I think they were merely trying to cover themselves and probably did not have much understanding (or care) for the implications. BUPA is quite corporate and I have not seen any good units run by them. Their fee was astronomical and their staffing levels dire.

Waiving and thanks

Kevin

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Kevin they tried to get me to send G to a BUPA home making great play of the fact it was run by them.

I looked up their CQC report and discovered they were rated as inadequate. Then a couple of months after G died they were the subject of a Dispatches programme. The very same Care Home was on TV warts and all.

I am not sure if there is a team in now helping them get to where they should be or what has happened. It is all about money Kevin and they don't care about the people sadly. Hence the reason you need to be there to keep an eye on them. You will find yourself doing some work as they probably won't have enough staff either!

Good luck to you both, and love and hugs to you both too.

Marie x

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Gosh, that was a close call.

No, I am getting Liz out of the BUPA home. Their fee is astronomic and their staffing is down to the bone.

They are a public company whose purpose is to maximise profit. That means squeezing costs whilst trying to meet the standards required. I feel very sorry for both patients and staff.

Good luck to you too. Thanks for being there.

Warmly

Kevin

x

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Someone posted that they were wondering where I was and they thought we must hve had issues.

Sorry - I can't find you post to reply.

A Health Unlocked thing I guess.

So I'm just waiving and saying thanks.

Warmly

Kevin

PS Very little sleep last night... now very tired.

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Thank you everyone for being so supportive.

I was probably over-reacting to the DOLS (Safeguarding) - The Home was covering itself - They are all so frightened of false imprisonment.

We got the funding from the CCG today. We can sort of manage to top it up to the full amount. I went to the home and chose a nice room for Liz. They are a completely different kettle of fish from the other place.

We hope Liz can move in on Thursday.

Sorry for the brevity - I wanted to share the good news, but I had virtually no sleep last night and my batteries are low now.

Thank you all for being there for us.

It makes a huge difference.

Very warmly

Kevin

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Warm hugs to you, Orpheus. I have followed your post without replying so far because I didn't know what to say in the face of such grief and trauma. I'm glad you have fought your way back to air and sunshine with a good place for Liz. One thing I know, she was fortunate beyond measure when she found you. Rest now and take care of yourself a little.

Love, Sarah

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Thanks Sarah

I think it felt like I had to be Orpheus, or wish I had that strength. In practice being a small dogged canine was sufficient.

I am so hopeful that we can move forward from here and share what time we have left. It breaks my heart to see her sitting in a chair in a home with a face that now can express little and her inability to say much at all.

I guess I will adjust to this new change, we humans mostly do.

Love Kevin

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I know you will cherish the time you have together. I would give everything I have or hope for to have my sweetheart back for a day.

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Oh, Sarah

I have yet to face that and I dread it!

How are you doing?

Big hugs and thinking of you.

Love

Kevin

xx

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Dear Kevin and Liz,

Your post, at first, had me at a loss for words and in tears. I am so sorry you are having to deal with this next untenable chapter of PSP. It's like a sucker punch you didn't see coming. Unfortunately, the punches just keep on coming. Your ability to rise up over and over again and land some good punches of your own is something I am in awe of.

I have learned so much from your past experiences and have received many words of encouragement from you. And I am eternally grateful.

I sincerely hope you and your lovely Liz all the best in your battles against the frightening world of health care. And you'll certainly be in my thoughts and prayers. And I'm sending tons of virtual hugs to you both.

With love,

Becky(GracieGirl)

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Hi Becky

Thanks. That means a lot to us. I will be visiting Liz later and shall read the posts of support to her. She will like that.

Love

Kevin

xx

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Oh my goodness Kevin, it's unbelievable what you are both going through. I'm so sorry that you have had to let Liz go into a nursing home because her condition has deteriorated and it's no longer possible to care for her, PSP seems to take so many different paths and you just never know which path your own loved one will take. Ben went into a nursing home yesterday for a weeks respite and they automatically put the bedrail up, I think I would have had to bring him home if they hadn't as had to call an ambulance last week to get Ben off the floor as he had wriggled to the end of his hospital bed and fell out of the gap at the end, despite the bar being up. He has changed over the last two weeks and am hoping it's the UTI he is being treated for. It never stops does it Kevin! I hope the move to a more suitable home solves some of your problems, it will never solve all of them ecause all you want is the old Liz back.

Sending a big hug

Love kate xxx

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Hi Kate

Yes, we never know what is next and it does keep coming. I visited the new home again yesterday. The atmosphere is really homely and relaxed. I guess it is a measure that one home could not cope with her needing so much support and the new one are putting a one to one service in for her.

I hope you have a good weeks respite.

Big hugs and smiles back.

x:)

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Kevin nee Orpheus, I am truly gobsmacked, to use my Yorkshire slang, I cannot imagine how you are feeling, having come to the decision with Liz, to find a Care home, I feel very upset and bereft on your behalf, finding the right care home is the most essential thing, last month I put Ian in for a week respite. The home vas a new build, very luxurious, lounge and bedrooms were exquisite, and the resident chef cooked food fresh daily, of course, Ian didn’t appreciate the fine dining or his surroundings, just kept saying how lovely the carers were, so I was reassured, even at £1700 PER WEEK😩, but for all that, halfway through the week Ian got a chest infection, and was confused, our daughter told them to get a doctor, and they finally did, and prescribed antibiotics, which didn’t turn up at the home, by the time I was back on the Saturday, chased them up and got Ian back home, he was very poorly and we took him into hospital, where he was impacted, had 3.6 litres of fluid in his bladder, pneumonia on his left lung and his kidneys failed, so another week in hospital, my point being, the staff are so much more important than the surroundings, we did get bed rails though,

I hope Liz is now settled into her new environment and you can have a well deserved rest, however sad your feeling

Love Janet xx

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Hi Janet

£1,700 per week? Gosh - that place should have been A1 and some more on all fronts. I am so sorry to hear about Ian's trials. Kidney failure... permanent? How is he now? It sounds like you've both been through hell.

Yes, staff are so important. The home Liz is in at the moment is clinically very on the ball and the staff seem very good and friendly. There are just too few of them. Mostly I see no-one on that floor at all unless they are doing a quick check round which might be every hour.

Liz is fairly active mentally, but wheel chair bound and unable to do much. She can't work a TV remote because of her close up double vision and poor fine motor movement. So she needs a lot of attention. The new home are going to give her one to one.

Of interest they too would have put in for deprivation of liberty if they were using bed rails and Liz did not have capacity. It is required by the law now. There were a couple of major Crown Court cases and the Judges pronouncement is case law. I live and learn.

I do feel very sad, but now I have had a week alone I have come to my senses a little. Apart from the odd flying visit out to a shop I have not left the house for almost two years. Such have been her needs and risks. I think things might be a lot better for us now.

FWIW this home is £1,600 p.w. Well beyond our means but CHC are paying the lions share and we are topping up. Still a good living wage as a top up, but doable.

Love Kevin

xx

P.S. I think I am probably nee Small old dogged canine on steroids ;)

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Ian’s kidneys are now functioning ok again, he is in much the same situation as Liz, can’t read or feed himself, we have a hoist for moving in and out of bed etc, I just keep reminding myself what Georgepa said, there but for the grace of god, it makes me a bit more tolerant of the situation.

Did you see the tech article in PSP matters with the gadget that is att to thumb and finger, to control tv and lights etc, seems to be a charitable organisation who loan them out long term, but the recommendation came via SALT team, worth a read, you may know more about them than I do, there is also an app called verbally, which can be put on a tablet, and has lots of phrases and words, if Liz could touch the screen it then speaks to you

Glad you are getting into a routine, do you think you may return to work, sorry no idea of your age, you sound very youthful to me, I volunteer at the Red X one half day a week, it is the most amazing place, and I would be reluctant to stop, I have a sitting service for Ian, although the lady who comes in is older than him, but she is a chatterbox which is lovely

Speak soon xx

Janet

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Hi Janet

I'm so glad you all made it through that. No, I rely on folk here for a lot of the caring stuff. I'll look out that article it sounds very good. Was it on the forum?

Good for you with the Red Cross. Great organisation.

Youthful? Probably I am not yet at retirement age quite. I retired early to look after Liz. When this settles I will probably volunteer with the Citizens Advice Bureau. Advising and advocating for folk who need that bit of savvy and support. I'll let things settle for a while first though.

Yes, speak soon

Warmly

Kevin

xx

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Issue 72 PSP matters page 14/15

Grid pad 13 is the name, looks very useful piece of kit

Janet xx

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Thanks - I'll check that out.

Kevin

xx

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Hi Kevin

I am so sorry I have only just read what has happened. I really feel for you and Liz and I totally understand how completely overwhelming and emotionally draining it all is.

It seems we continue to be leading parallel lives. My lovely Mother was taken into hospital at the beginning of September supposedly for one night. 7 weeks later transferred from hospital to a nursing home as we couldn't get the substantial care package at home resurrected. We had to hunt for a nursing home that would take her and she was turned down by the first two who said her needs were too high!

Whilst she was in hospital we had our second DST meeting for CHC this year and again turned down. The assessor said she would review in 3 months. Unbelievable.

Meanwhile my Mother is rapidly declining.

I am so sorry that your Liz is also now in a nursing home. I hope that the move goes well tomorrow and keep us posted. I am going in today to see my Mother and my Sister, who saw her yesterday, has told me to prepare myself as she is not at all good.

Its bad enough battling the PSP/CBD but then having to battle the CHC/Social services system..

Look after yourself Kevin, and thinking of you as we battle on..

Martina

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Hi Martina

I am so sorry for what you folk are going through. It puts our plight into a small perspective.

I am beginning to suspect that some homes are refusing high needs people because of the extra work involved and the need to cut staffing costs and overheads. Yes, battling the system can be both exhausting and stressful. So much hangs on others decisions. Supposedly modern practice is to be open with the carer and patient and to involve them in decision making. I don't see much evidence of it here.

We are liable to loose CHC when Liz becomes bed bound as her risks diminish and her DST scores will fall. However they have said they will not review until May. All in all we have done fairly well with funding. So I should not complain too much.

I hope it went well with your visit today.

Wishing you all the best

Warmly

Kevin

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Hi Kevin good to hear from you...I am hoping you are adapting to life without Liz next to you all the time and take some comfort that she is being cared for 24 hours a day.

I am sorting out Mums clothing etc and the carers at the home are bathing Mum and sorting out laundry etc? Its all so weird? I get the offer of a cup of tea everyday and everything is done for us? They have activities laid on and I really like the hustle and bustle of it all. I actually think Mum is more mentally stimulated at the Home but the absolute heartbreak is that we cant do the caring at home for her. Her needs are so high and we can only take one day at a time..

Sending a great big hug to you Kevin we are in the same boat again

Martina

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Thank you for your posts. They are informative. I hope the new Nursing Home will be a good one. One your first post, you mentioned " Her last two deteriorations', one quickly following on from the other had all but deprived her of intelligible speech and significant cognitive ability. " Can you share what were the causes the two deteriorations? Did Liz "intelligible speech" and "cognitive ability" reach a new level and did not come back up again? Thank you.

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Hi Etoile

Thanks.

Yes, Liz most often has what appear to be step downs and then over the next week she recovers a little. They can be hard to spot sometimes because when she is tired she seems a lot worse symptoms wise. The speech varies a lot with tiredness, but I don't see much of an improvement. She has had days where she seems hostile for quite a while. On Saturday it was more than I have ever seen. She was the same in the Nursing Home for the first week. She has never been a hostile or angry person and with PSP she had always reserved it for me whilst being wonderful with the carers. She has settled now and that is less evident. However we don't know how much of that was protest at being in care.

As for cognitive, hat has improved a little and she has stopped saying things which are non nonsensical. Nonsense sentences and the like.

Everyone is different there is no 'standard' course of symptom development.

Be well

Kevin

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Hi Kevin and Liz,

I imagine you, Kevin, as like a soft fluffy terrier, but with agression and stripes of a tiger!

Am thinking of you both as you continue to do battle for the very best of care for Liz.

You have always been there for Liz, through thick and thin and microthin! Because of this, you have such a wonderful companionship, that allows you complete understanding of Liz's thoughts and needs. I hope the new home is all you both hope for!

We should none of us have to fight to such phenominal lengths to get this necessary care for our loved ones!

My love only had the bed sides put up by the nurses when he was comatose! Before that, they used a movement sensitive beam and a high density foam floor mat - and lowered the bed to the floor! Not an easy position to get down to to give a goodnight kiss! And if the movement alarm went off, they were many times very slow to respond!

So care seems to be the same the world over, unless care by a loving, wornout, frazzled partner!

My love and prayers and BIG HUGS to you both!

Jen xxx xxx

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Sorry to hear Liz has moved on to the next stage in PSP and has had to move to a care home, it must have been a difficult decision to make, we never got to that stage, but Fred would have absolutely hated it

Thinking of you both

Love

Debbie xx

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Oh poor you and Liz!

I wondered where you were, Kevin. Out fighting dragons and such, as if you haven't got enough to deal with in slowly losing your lovely wife.

B .has just gone into a home as it was not good for him to stay in Palliative Care. He is not at that stage and people were dying around him. He will be moving homes shortly as the home we preferred, has just got a vacancy. I hope it will not be as traumatic a time as yours seems to have been.

We have another CHC assessment on Friday.

I am sending the biggest, warmest hugs to you and Liz. I am hoping that this latest nightmare will pass and that you both can peacefully share the remaining time that you have left together. Love and God bless Rx

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