PSP Association
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Do you agree an EMI unit is suitable for PSP/CBD?

So today a Dr came from the elderly mental health team and asked lots of questions etc

Said going to formally diagnose dementia also as part of CBD and that an EMI unit would be suitable for respite of can't organise one at home. She also implied to me Mum should be in a unit now and not at home.

I disagreed with her view and said her now writing this formal diagnosis could lead to Mum being put in a dementia unit and not one suitable for her overall condition when I'm trying to argue on where she should be allowed to go if needed for respite or emegency. I'm far from happy believe me.

What are your opinions ?

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Hi Spiralsparkle

Probably not. It depends to some degree to what level of disturbance patients there have.

The biggest issue is risk. People who cannot move and cannot defend themselves if a disturbed patient with dementia hits them or worse. This is a major safety risk and it only has to happen once. Even if he is in his room and never leaves his bed a disturbed dementia patient can wander in.

Second people with PSP/CBD are cognitively present. that is they are aware. Putting such a person in with people who are largely not cognitively present is both humiliating to them and it feels like dumping.

When I went around all of our nursing homes within reach every matron who had large numbers of dementia patients said it was inappropriate for these reasons.

I would certainly go and see the place and talk to the matron first.

As far as I am concerned I would not want to be in a unit like that unless I too had dementia.

Hope this helps

Best

Kevin

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I'm hoping it won't come to it but we never know what may happen to us and an emergency bed required. I didn't want to argue anymore in front of Mum but I also wasn't keen on her manner. I told her Mum doesn't want to know what the future holds and she proceeded to carry on talking about it.

Mum has been upset since she left, just hearing word dementia has confused her and said I didn't realise it was going to get so bad and cried. She hasn't wanted to know so I've not gone into details with her , I have read all I can and of course this forum is a god send.she now thinks I'm sending her to a home.

Mum does have cognition issues no doubt about it but having questions fired at her every few seconds really was beyond her and wasn't given any time to process questions.

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Hi

Sorry to come back again.

Two things you can try.

1 Telephone the PSP Support line and ask for advice and support.

0300 0110 122

2 Do you have a neurologist? telephone their secretary and tell them the issue and ask for the neurologist to call you back a.s.a.p. They may be willing to talk to the EMI doctor , or if they are local they might step in and arrange things.

Best to you

Kevin

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I've contacted PSPA before regarding respite homes and they said were unable to recommend any.

Again neurologist said couldn't comment on homes.

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Hi Spiralsp,

If the neurologist is local then it might be that his/her team would deal with the respite. It's odd to get another team involved when they are not involved in everyday care. Your Mum is a neurology patient not an EMI patient.

Yes, your Mum will have cognition issues - but nothing like the folk on an EMI unit. The fact that your Mum is upset now leads me to think she would be very upset were she in an EMI unit.

I'm really sorry you are having yet another struggle with services.

Do you have a community matron in your area. Can you get one involved. At least that way you have a potential ally and possibly a barking one too. :)

Best to you

Kevin

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The Parkinson's nurse asked the GP to get mental health team involved and this then led to it being psychiatrist from memory team. Who then arrived today doing this dementia assessment and telling me it would be beneficial to get this diagnosis. I could poke her eyes out and told her again on phone do not agree with her at all. She still wouldn't accept when I told her dementia day care cannot meet her needs not matter how many times she suggested it.

Community Matron isn't much cop either unfortunately.

I'm still angry now....can you tell.

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You have damned good cause to be angry!

The dementia doctor sounds like the old saw - 'To a man with a hammer, every problem looks like a nail' She is seeing dementia and has easy access to dementia facilities.

Mental Health and dementia is so not the right place.

Do you have a local neurologist? They often have nurses attached. If you have I would strongly recommend you ask to meet with them and tell them your issues.

They too are often able to arrange respite beds.

(Stay angry - To move a mountain find the weak spot and go at it little by little.)

Good luck

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Yes we see the Parkinson's nurse as part of the neurologist team, she was the one who asked GP to refer to mental health as Mum is so depressed. Neurologist sort of wiped hands of trying to sort out the depression.

No one seems very effective in her care all in all.

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Is it depression or flattened affect?

PSP and CBD can bring about a presentation that looks just like depression. It's called flattened affect, or in English flattened emotions. It is caused by certain deteriorations in the brain.

Liz has this and she would say she was feeling good, but she looked so flat... Twice I had to over rule a senior hospice nurse who insisted on her having an antidepressant despite Liz telling her she felt fine and didn't want any antidepressants.

Having said that any decent neurologist would know about this.

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I don't know really what it is but her mood and anxiety are not good. She had been in an antidepressant for anxiety for a couple of years, not sure it does anything as such.

Yesterday she told me she had enough and wanted it all to end and to shoot her. She does get very low, not so much crying but just very low

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Hi Spiralsparkle

It must be so hard for you both right now. My heart goes out to you both.

You are doing so well to keep this altogether. Your a five star carer. :)

You cannot loose but to try the CBD oil.

There is emerging evidence that dopamine agonists can be effective in certain cases of anxiety / depression. CBD oil is a dopamine agonist.

Best to you both

Warmly

Kevin

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Yeah. I need to speak to epilepsy nurse again about all of this and will discuss again CBD oil.

Thanks for your support.

How is Liz, has the nuitrionist been?

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Hi

No, nutritionist next week.

I think Liz has had another set down. She finds it hard to give hand squeezes to questions now.

She was much better in herself yesterday. She has had three days of low mood before that. So the hugs and kisses regime was doubled. :)

Oh, I love that damned woman! Every time I see her I just want to sweep her up and hug her and keep her safe. I get tearful quite a bit... but that's healthy, I guess.

You'll get there. Your efforts against all barriers put in your way are impressive.

BTW - In the states there has been a lot of work looking at CBD oil and epilepsy. Some people now only use CBD oil to treat it. I wouldn't go that far, but it does indicate a degree of safety.

You might want to click on this link - Its one of many articles on the subject.

epilepsy.org.uk/news/news/s...

Best to you

Kevin

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You are amazing carer to.

It is so emotional when they are having low days to see them that way. Mum.said to me on Thursday shoot me I've had enough. I guess we have been lucky so far that the speech hasn't been affected as badly so far as everything else but she got epilepsy so no win win.

Better to let the tears fall than keep that emotion locked inside.

Hope Liz is brighter when you see her next and that the hand squeezes are able to be resumed at times.

Is she eating anything or lost interest all together?

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Thanks

Yes, she was much brighter yesterday, but she has got a little clingy - that tells me she is frightened. We had a long chat about PSP and the common pain free death from pneumonia. She relaxed a lot then, but that damned PSP fixedness of thinking - Her fears surface again.

She is taking fluid food and has upped her intake. :) However, as we know, PSP and CBD involves weight loss at this stage, from other causes so I am not hopeful.

It's the PSP/CBD roller coaster for all of us.

Warmly

Kevin

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Whilst these are hard chats it is lovely you are both able to discuss about the more horrible points of what is to come. Mum does not want to and just comes out with statements out of the blue like I want a DNR, I want to donate my brain to research.

All we can do is keep reassuring them the best we can.

Hope the sunshine brings her some more smiles than frowns.

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As a spouse of cbd-diagnosed hubby, I agree wirh all Kevin is saying. Hubby has flattened affect and mask-like face: no expression. He has slowed cognition, easy to confuse if too much sensory input (fast speech, questions) speech loss because of neural loss but full comprehension....He doesnt belong in a dementia unit. If he belonged anywhere it wouldbe a classic "old folks home" with lots of physical supports for ADLs, calm routine, good easy to eat food, and loafs and loads of gentle kindness!!

Anne G

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Mum has CBD also but still able to do facial expressions and communicate fairly well speech wise. As you say too much sensory input and and it all goes to pot and fully aware what is going on, even when eyes are shut.

I'm still angry about that damn Dr today. She can get knotted!

Thanks for reply.

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Dearest Spiral:

Forgive this reply IF it doesn't speak to you at this moment: Still:...While I DO agree that you have every reason to be P--d off at the doc, (and I would be too) I sometimes think we are on the frontier of this PSP/CBD knowledge: Sure, tertiary neuros know about it, but they are - of necessity, due to their rarity and need for research focus - not the physicians who look after our day to day concerns. And we're in this gap time where there really isn't anyone in the medical community to pick up the day to day medical needs of this chronic care group.

I'm beginning to see myself as someone who must educate them: I print out the PSPA stuff and bring it to my GP (PCP). I do the same for Home Support. I'm going to contact my Health Authority (that's what they call the governing health bodies here in British Columbia) and find out what it takes to create a chronic care pathway/group/clinic -whatever for PSP/CBD. I may get nowhere, but I'm trying to see that I'm a frontierswoman in the wild and the "civilized" amenities just aren't there for me all the time - so I have to innovate!

Maybe that image works better for us Canadians ;-) But please take it in the loving spirit in which it was intended XXX

Hugs to you

Anne G.

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Yes I give out information from the PSPA to relevant people. I tried to get the Dr yesterday to read some but she wasn't interested. You go girl.

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This is what almost happened to my dad when he was hospitalised. The doctors said he needed EMI and I actually went to visit a couple and very quickly realis d that they were totally inappropriate for him, for all the reasons that Kevin has outlined, plus many many more, unfortunately. I enlisted the assistance of the hospital social worker to argue his case with the doctors to alter their opinion and she said he needed a proper nursing home ASAP. I know everyone is slightly different in their symptoms but I think in my dad’s case it was definitely the correct judgement call. Hope this helps. If in doubt go and visit an EMI unit to help your argument. Ruth x

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Thanks for your reply. I've actually just spoken to said Dr again and said I totally disagree with her and unit is not appropriate. I had also told her that the medication she wanted to increase had already been denied by the neurologist team due to her epilepsy. She didn't listen but just rang me to say I've spoke with the epilepsy nurse and they tell me it is not suitable. I said well I did tell you that numerous occasions and listen in future to family members. I am so pissed off with so called professional making a judgment in 5 minutes of meeting Mum. I also said have you considered her vision is affected and why she couldn't see what you were asking her to name. Ggggrrrrr

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Yes unfortunately you are experiencing what must be happening to lots of patients, especially those who have no one to fight their corner. Many doctors are dismissive of any opinions other than those formed by their own preconceived ideas. My dad and many PSP patients remain completely aware of what is happening to them and around them but are unable to communicate verbally or move physically, imagine the trauma of being denied your liberty within what is in effect a modern day Bedlam whilst you remain completely sane. It is the stuff of Victorian nightmares. Only you can ascertain what level of understanding your loved one has, as you interact with them on a 24/7 basis. How can a doctor who spends 5 minutes at best with them truly understand? One who doesn’t appreciate that their patient can’t see but then gives them a visual test is even worse. There’s none so blind as those who do not wish to see I’m afraid. Feeling desperately sorry for you both, wishing you strength to fight this Ruth x

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Well put Ruth!

(If you don't mind me saying)

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Thank you Kevin, I know Dad had a narrow miss avoiding an EMI and it made me shudder thinking about it x

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I don't blame you. EMI work is an easy option for a psychiatrist. So little can be done and a limited range of meds. to choose from. There are very good ones out there and they may be caring people, but PSP/CBD is so not in there skill set.

A neurologists training is of a completely higher order of complexity and skill.

Staying with the neurology service is so much the right way to go.

x

I used to get called in by them for various assessments and the thought makes me shudder too.

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Hi Spiralsparkle

I am so sorry your dealing with all this I can understand totally how you must feel and I worry that these people are going to stress you out to breaking point. Please stay strong sweetie and stick to your guns.

I can't offer great help like Kevin so I am not going to even try but he has given you really good advice and will continue to support you through this I am sure.

I feel so upset for you I also care for my mum full time and know how stressful it can be. She was diagnosed with CBD 2016. Two weeks ago I was really at breaking point so my lovely daughter stepped in and took mum for five days I was so thankful and it really made a difference so I can understand why you have enquired about respite care. I wonder if this Dr even understands anything about CBD. I was absolutely gobsmacked when my GP asked me what it was and then my mums GP from another practice admitted he didn't know about it because he had never come across it.

This is your mum and you have every right to protect her and yes I agree she can ' Get Knotted' That did make me smile I haven't heard that phrase for a long time .

I am glad your mum has you looking out for her as Ruth said there are lots that don't have anyone fighting their corner.

Try and enjoy the sunny weekend with your mum and don't let these people get you down

Big hugs

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Thank you for your lovely reply.

It is very scary how many people have no one to fight their corner.

I think alot of Drs have to Google these conditions

Glad I put a smile on your face and you managed a break x

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Your very welcome.

I hope you are having a better day and that the sun is shining for you x

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The sun is shining but Mum isn't happy today . Has stayed in bed as she is fed up.

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Ah bless her she has probably picked up on everything that's going on too which wont have helped with her already low mood.

My mum didn't want to go out today either she just snoozed all day in her recliner and said that she was fine in her room with a view which is hysterical as there is no view just a typical terraced street with parked cars. I think she was just too tired after being out yesterday which is often the case with her.

Do consider the CBD oil when you have checked with your epilepsy nurse, of course, it has really helped my mum relax and she smiles a lot more again like she always used to.

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That is lovely you have seen benefits from the oil.

Mum gets so fatigued now. Leaving the house, which is rare, wipes her out for days.

Hopefully tomorrow she will sit out.

Hope tomorrow blesses you both.

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My Mum’s in a nursing home, it’s great but I believe there is a need for more specialist environments, and nurses, nursing Mum myself is not an option and there are so few EMI placements here, I don’t believe there to be a specialist centre for PSP within 100 miles of where I live, if there is one at all, wasn’t discussed with social services, who know nothing of this disease or the sufferers needs. I would say a good proportion of residents in her home have something other than dementia. You should ask for a referral to a neurologist, if you haven’t already seen one. GP’s are largely clueless about anything out of the norm.

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What part of the country are you in?

We are under a neurologist and there isn't any places locally who deal with neurological conditions as such. None with good CQC reports either!

There will never be an ideal place for respite of full time care , always a compromise on something, even with community care.

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There is such a need for a big shake up of the care sector and especially for complex needs.

Pleased that you have found a place you are happy with, even if not what you would ideally like.

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We’re in north wales, The catalyst to this was a serious fall that resulted in a TBI so she finally saw a neurologist at the north wales brain injury unit whose best guess, no real tests for it, was PSP and or possibly CBD causing her falls and not her falls causing what’s happening to her brain.

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Hi my mum’s CBD has presented with behaviour and aggressive issues as well as dementia type symptoms. We placed Mum in respite in a home for dementia and Parkinson patients. Have to be honest they have been wonderful and really gone out of their way to understand the condition and we have the mental health team coming in daily to review Mum to see what medication and support they can give my experience has been total lack of support from neurologist and GP the home only had 39 residents max so very much like family .... think I am learning each person is different and we need to do what is best for them at the point of need. It’s so frustrating sending wishes of support x x x

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That sounds a good home if they are willing to learn more about the condition.

Mums behaviour has definitely worsened and becomes very irritable and confused and refuses to have personal care done at times. She cannot deal with change at all and gets so anxious with new people.

Could I and what medications the mental health team have prescribed?

How long has your Mum been in the home?

I hear you on the lack of help from GP and neurologist.

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I wouldn't recommend going into any nursing home. My wife has been in a home 3 times so I could have a respite break. First time went well. The next not so and the third time she picked up an infection and ended up in hospital. Last year I hired a care company who provided superb support. I am now in Scotland on another respite break. My wife is being looked after by the same people as last time. It costs us a lot of money, but is worth every penny.

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I have looked into respite at home. Very expensive.

Which company do you use?

Enjoy your break.

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It is very expensive but as my wife gets over £80 a week attendance allowance I can use that.

I use Caremark. This is a franchise which is run locally by a friend of my son. So I also get a discount. Another company which comes highly recommended is 'Stay at home' a lady who attends the Liverpool PSPA group comes in wheelchair always with the same carer who is outstanding. I believe that Stay at home also have a number of outstanding CQC reports which is very rare. They pay their workers more than other companies hence they charge more and are able to give better service.

I am watching the tide go out of the harbour and contemplating a leisurely walk along the coast. The rest is worth every pound.

Ken

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Sounds a blissful break.

Unfortunately those companies aren't in our local area but thanks for the names.

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