CBD decline

[Araucana]

Hi, Don’t often post as time gets away with me, but coming on hear to vent a bit

So mum has CBD diagnosed 2020 so has probably had symptoms for 4+ years. Speech has got a lot worse lately and we were struggling but managing to understand her. She has a habit of being settled in bed but then gets up several times before settling - she struggles to get back into bed and sort her duvet out once she is up. Anyway, had several minor falls, a larger one a few weeks back that needed gluing and the most recent where she fell in her room and fractured her nose and a minor non-displaced skull fracture, that was last week. She has now been in hospital since then for observation and to see ENT about her nose. Ward has been closed for last few days for visitors, Norovirus, but we managed to see her briefly tonight to support her with an MRI scan. Poor love you can see the panic in her eyes, she is convinced that we are leaving her there, we have reassured her that she is there to check on her head injury and nose and for them to get a care plan in place so that she will be safe when she gets home to us. Speech has deteriorated to yes, no and help. Just feel so sorry for her, we are holding back on letting them discharge her home yet as we want them to do the plan and provide support, whether it is advising on a low bed or whatever. I feel bad about delaying but I just know that she will be up and down out of bed when she is home with us and will be back in A&E within days. Had an appointment with Dr Rittman on Monday which I have had to postpone now as I know even if they let her out before hand it will be a bit of an effort doing the hour plus drive so soon.

sorry everyone just venting to people who get it. Feel so bad for my mum. Just want her to be as helped and safe as she can be.

[Bergenser]

Oh goodness I feel your pain and worries. Clearly your Mum has a level of impulsiveness that makes her vulnerable and the care options are not obvious when you want to keep her safe. Fall prevention is important but even the very best attention round the clock will not stop falls from occurring and some falls will be devastating. I'm afraid I don't have the answers. It sounds like she needs someone there to safeguard her especially in early parts of the night. Does she have carers - funded or self-funded?

In addition, the loss of communication is so hard to take.

The fact that you are fighting her corner is important and I hope you continue to do that. In Tim Brown's words "keep on keeping on".

If you have the time, please let us know what happens next. The situation is relevant to me and my husband, and probably many others.

Try to breathe, sleep and be kind to yourself and you will end up doing what your Mum needs.

Hope, hugs and all the best wishes.

🌻🫂🤞

[Araucana in reply to Bergenser]

Hi,

Yes the falls are inevitable and will only get worse, she is totally unaware of risks now. She lives with us so she is never on her own in the house but it is those hours in the middle of the night that are most worrying.

No carers at the moment, only myself , husband and daughter, who is not working at the moment that much and has really strange sleep patterns - works really well as she watches out for mum from about 10pm until 4am.

My biggest fear at moment is how much mum’s speech has gone since being in hospital and whether that is part due to the fall. The dementia part of her CBD has really increased since the fall as well.

Will try and come on more often and keep you posted.

It is such a horrific disease,

[AliBee1]

Hi, I am so sorry that you and your Mum are having to go through all of this but I feel that you have made the right decision to delay discharge until they have a good plan in place. Have you, yourself spoken with the Hospital Social Worker Team? If not ask to speak with them as they should be very helpful and give you face to face info rather than third party through the ward staff. Big hug. AliBee x

[Araucana in reply to AliBee1]

Thanks AliBee1,

Have never even heard of their existence. Will ask when we next go in/speak to them today.

Andrea

[lunarquasar]

Hi. I understand your worries my wife has had CBD since 2016 she also cannot communicate at all and is totally immobile. I think you should ask the Hospital for a reablement plan which your Mum is entitled to. They should sort out a short term plan for care before she is comes out of Hospital usually about 6 weeks of care. Has you Mum had a care assessment carried out by the Council as this could be a starting point for what happens next. Have you got Care Navigators at your practice as they can be very helpful also. She also may need a hospital bed that is also supplied free. Just keep asking the questions as usually nobody will tell you what to do next. Hope this helps. Barrie

[Araucana in reply to lunarquasar]

Thanks Barrie we are hoping the reenablement plan will kick in whilst the bed is being sourced etc. no, no care assessment as yet, we have said we need one and she cannot come home yet as we need things in place. If she comes straight back we will be down at A&E again within a week. Just feel so bad for her though even though we are delaying her return for the best of reasons, not sure she understands and she just has this look of panic in her eyes. I hate this disease for what it has taken from her. Thank you for your support.

Andrea

[Northstar1]

Hello can you ask the hospital for CHC assessment they pay for care and can commission a care package based on need. I have heard of others that were assessed in hospital prior to discharge. Clearly your mum is a massive falls risk. Best wishes x

[Araucana]

I have kind of assumed that she is not yet eligible - falls and dementia would be a care need. I need more medical needs for CHC as far as I am aware. Good thoughts though.

[Millidog in reply to Araucana]

Hi, it would be worth reading up on chc. Its about primary health care needs not necessarily just what you would think of as medical. Issues.eg if someone has frequent falls and injuries (Mobility criteria) and is very impulsive (Behaviour criteria), unable to communicate wishes (Communication) not understanding (Cognition).yoy have a very good start in meeting the chc criteria. From reading your post I can see your mum will have needs in these 4 areas and you'll probably find many more and corollation between these any other chc criteria. You can find useful info on the .gov website, pspa and Beacon and Care to be Different sites xx

[Araucana in reply to Millidog]

Okay that sounds promising. I will mention it to them and start to look into it. We finally got it for my dad years ago - Alzheimer’s but I remember we had to push on the basis of kidney issues and medication, can’t remember what else. Thank you so much.

Andrea

[Blacklabmum]

hello, my husband has CBD and genetic frontal temple dementia, the best thing I ever did was to refer him to our local hospice, he has an allocated palliative care nurse who is brilliant at liaising with DRs , OTs etc and can get equipment. I don’t know if it’s the same in your area but the hospice have a liaison nurse based at our local hospital. Maybe worth looking into. Good luck to you all x

[Araucana in reply to Blacklabmum]

Thank you, hospice had slipped my mind. I do have mum registered and they did get equipment sorted before for her. Will drop them a call.

[Kelmisty in reply to Araucana]

They can also help with CHC generally

[Jen295 in reply to Blacklabmum]

I was going to suggest a local hospice. They are very good and seem to be able to source equipment quicker than social services OT. Good luck . You are doing everything right. Xx

[Araucana]

Thank you all, feeling pretty rubbish today. Just miss my mum and can’t even go in and see her as ward locked down still with norovirus. CBD sucks

[Leosta]

Hi, I can't add anything to the excellent replies and suggestions that you've had, except I would suggest you push for a hospital bed with rails. This will prevent your mum from being able to get out of bed, unless she's extremely agile!She won't like it, It's a prison, said my husband, but she will get used to it, as did he.

Also, I think you absolutely fall into the categories for CHC funding. Keep pushing and fighting. Unfortunately, that's what carers have to do. Good luck. 💟

[Araucana in reply to Leosta]

Hi,

That was our original thought but my husband seems to think she will trap herself in it- does that ever happen?

I do think that would be better, it would stop her getting in and out of bed at night when she is more at risk.

[Leosta in reply to Araucana]

A couple of times my husband managed to turn himself diagonally and put one leg through the bars, then was unable to extricate himself, but 'trapped', no.The bars aren't wide enough for a head to pass through. Also the mechanism for lowering the bars are towards the end of the bed, so as I said, unless she's very agile she won't be able to do that herself, nor climb over the bars.

You could put padded sides, like with a baby's cot, on the bars. You'll need a tied-on version because I doubt you'll be able to lower the bars with that in place.

💟

[Araucana]

I am also going to ask for a CHC assessment as according to Beacon literature, that should be done automatically on discharge from hospital before a care plan has been put in place for first time.

[Zerachiel]

Hi

This is a guide for health care professionals when applying for CHC funding by the PSPA

pspassociation.org.uk/wp-co...

[Hidden]

Hi Araucana,My husband, diagnosed with PSP in 2022, was prescribed Amytriptiline after a hospital admission, to control his fever and sweating, he takes it at bedtime and it's made a big difference to his sleep pattern. He is much more settled through the night.

Worth discussing with the hospital?

Best wishes.

[Araucana]

Mum already takes this two tablets before bedtime -10mg each. How much does your husband take?

Andrea