Inappropriate Care For EOL?

[luggy]

Apologies, it's me again with yet another dilemna!

I've previously explained that mum has been deemed to be EOL and, as such, has been fast tracked to a different nursing home by the ICB. Mum was unable to remain at her previous care home because it's closing down.

Mum's only been at the new place for a few days and I'm a bit alarmed by the care she is receiving. Mum is very frail, has contracted legs, eats very little, has been bedridden for almost 3 years and becomes very distressed. In August, a best interests decision was made, with my approval, by her GP to withdraw her Oral Nutritional Supplements and increase her dose of Lorazepam to help keep her calm. The idea has been to allow the natural course of events to take place, whilst keeping mum as peaceful as possible.

The new care home is an all singing and dancing nursing & dementia place. The manager of the dementia unit has contacted me to inform me that mum's dose of Lorazepam is to be significantly decreased and that they are considering reinstating the ONS because she's not eating. On top of this, a carer phoned me today to ask if they could get the hairdresser to cut mum's hair because it had become matted at the back. This was attempted at the previous care home but, as it didn't go very well due to mum's combative behaviour, they didn't try again. The carer went on to say that they were going to give mum a bath. When I asked how they proposed to do this, she explained that mum would be hoisted out of bed and put in a bath. Mum hasn't been put in a bath for years and she finds being hoisted very distressing because of her contractures. For 3 years, she's been having bed baths.

Surely, someone at EOL should not be pulled around in this manner? Is it appropriate to give ONS at this stage? I just want mum to end her days in comfort and at peace.

Answers on a postcard, please!

Thank you

 

[Firecatcher]

The complete lack of common sense in many of these care homes never ceases to amaze me. It’s about prolonging death for as long as possible and the cynical part of me feels the private consortiums who run these homes simply want to screw as much money out of people as they can. Your Mum clearly has little quality of life left and certainly doesn’t need this kind of over the top aggressive intervention. Do you have POA. If you do then you really need to be assertive and say no to whatever idiocy they’re proposing. Good luck.

 

[Chaplin]

Have you the same GP at the new home or a different one? That’s where I would start. When your mum was transferred I’m sure her care plan was given to the new home but doubt anyone has read it through thoroughly! Sadly handover communication between shifts is patchy at best in most care homes so I think speak to GP, then Manager and make sure the manager communicates the care plan for your mum with all those who care for her.

As her daughter and advocate, you are right to challenge their care plan. I do hope you get this resolved quickly for your mum’s sake!

 

[luggy]

Thankyou @Firecatcher and @Chaplin for your replies. I have got POA for mum. I would have thought that mum's Fast Track caseworker would have sent the new home mum's FT referral which makes it clear at what stage she is at. I have been told that mum's previous care home didn't send any paperwork with mum when she was transported to the new place - they merely sent her medication. I have already voiced my concerns with the Dementia Unit manager and the new GP regarding the decrease in Lorazepam and re-starting ONS, but this business about the hairdresser and giving mum a bath has happened since that conversation took place. I also told the carer that mum becomes very distressed when hoisted and would be terrified of being plonked in a bath full of water. Her reply was words to the effect that they are a specialist Dementia unit and have strategies to deal with these situations. They probably do, but they have no sense of occasion.

Anyway, I have written down the sequence of events leading up to the Fast Track referral and made it very clear that mum is at end stage Alzheimer's and that care should be focused on comfort with no active interventions to prolong a life which lacks any quality. I have enclosed a copy of the FT referral with my written instructions/wishes and dropped them off at the care home this morning.

I dread to think what hell those who don't have an advocate are going through, at the mercy of the social care system.

 

[HartleyHugs]

@luggy I don't have any other words of wisdom other than what others have said about trying your best to be heard with the new care home and trying the GP too. But I wanted to just wish you all the best in trying to get this resolved as quickly as possible and with your mum's best interests at heart

 

[luggy]

@luggy I don't have any other words of wisdom other than what others have said about trying your best to be heard with the new care home and trying the GP too. But I wanted to just wish you all the best in trying to get this resolved as quickly as possible and with your mum's best interests at heart

Thank you @HartleyHugs, your best wishes are very much appreciated.