Elderly, frail parent refusing home help - can we use LPA?

ChasingtheWelshdream

As crazy as it is, it does seem that a crisis is the way things will start to happen. We have always suspected that were she to end up in hospital, discharge would be an issue. Her house is not adapted (many years of trying to have those conversations!!!) and there really is nobody else around except for us. All her friends have either moved away or passed on sadly. 

We can get down every 2-3 weeks at most. We are seasonally self-employed and have lots of work commitments coming up which we really can't afford to cancel. Plus it costs us £150 on average for each trip.

To answer a couple of questions.

Frequency - The home help we have arranged can only fit in 1 hour a week, but that is for light domestic duties/shopping, which she has agreed to. They are coming out for an initial assessment in a couple of weeks, but we can't be there. We hope she still agrees.

We would like someone to visit at least every other day - in between the district nurses -  to check that things are OK and report any concerns.  We really doubt she would let a carer wash or dress her, and won't want meals provided, But they would hopefully observe if there are any hygiene issues, whether her medication has been taken etc?  Maybe help her upstairs and wait whilst she showers? It is all rather vague, which is why we wanted a professional to come out and tell us their recommendations. We realise that is not happening any time soon now.

At the moment, she is so resistant to carers that an assessment without us could be difficult. After her fall and agency came round to suggest adaptations - all of which were refused. The assessor relayed back that she was one of his most difficult cases, in that she refused to engage with any suggestions at all.

Capacity: She tells us she is struggling and doesn't understand what is happening to her, why her legs won't heal and gets very distressed about not being able to get around. She admits when she gets in a muddle when talking, and asked me to help her dress so is aware of those limitations, but instantly shuts down any conversations about her finding things difficult. So it is hard to know if she is stonewalling because she thinks everything is fine or if it is a defence against interference. 

Conversations are getting increasingly confusing. When we are there, constant repetition and asking the same questions over and over. Unable to remember who she has spoken to and why (eg, no memory of calling the Dr). But at the same time she has been perfectly capable of ringing up her water company and setting up a direct debit with no problem at all.

Alarm: yes, she wears a care alarm pendant and the responders have both our phone numbers. She has used it in the past for a fall (and again to 'test it'- oops). She doesn't have an issue with that, but it has been in place for a long time so I guess she is just used to it. 

Thank you all for the comments.

elsien

Her GP can refer for an OT assessment which would assess her mobility and also the accessibility of the house. Again, there may be a waiting list but it could still give her a little more idea of her physical support needs and what help might be available. Although you say she’s declined in the past so again it would depend on her cooperation. 

Physical causes should always be ruled out first as a possible cause of confusion and could also explain some of the fluctuations.  And possibly some fear that admitting she needs help means are people are going to try to make her go into a care home. She needs to believe that the purpose of the help is to support her to maintain independence as long as possible / easier said than done. Maybe that is something she could believe the GP about if she doesn’t believe you? 

Agencies are meant to promote independence so yes they could check things like medication and raise concerns if needed, while your mother-in-law still manages her own personal care, et cetera. 

If she does end up in hospital, it’s not as simple as saying the hospital won’t discharge her unless to a residential care home, because they do not have the legal authority to make that long-term decision.
And if at that point she has capacity around discharge destination and her care and support needs she can make an unwise decision to return home regardless of the risks and no one can stop her from doing that.

ChasingtheWelshdream

Well things have moved on again, in a sad but positive way in terms of getting her in the system. That crisis point has happened.

The district nurse matron called us and gave the best overview we have had. She has major worries.

It turns out they have been raising concerns and she visited last week and did a memory test which MIL passed by one point. The matron's view is this was a fluke and she wouldn't pass today, and in her opinion likely has vascular dementia. She arranged an OT visit but that unfortunately had to be cancelled last minute. (We knew nothing of this!!)

Her legs are not healing as they should, she is presenting signs of deteriorating heart condition and the incontinence episode is a symptom of a suspected undiagnosed issue that MIL refused to have investigated a while back.  She is now classed has having an acute medical need and has been referred to the Virtual Frailty Ward. 

This will bring the various NHS factions together with a single team coordinating care, tests and visits. It is a way to prevent hospital admission for the time being. We have been warned that she may be approaching end-of-life, which is another layer of complexity but means she is now well and truly on the radar. It may be the virtual ward morphs into admission, but initially it means she will have regular intensive visits, so any changes will be flagged straight away.



 

Danien

To me it sounds like she needs an actual ward rather than a virtual ward, but I suspect these types of things are put in place to prevent people they think may become bed blockers from actually being admitted. Don't be afraid to push for admission if you think it is warranted. It is often the only way a person gets a thorough assessment. If she is end of life, she needs care to make her comfortable, safe and pain free, not sitting alone in her own home confused and losing her dignity. But with the state of NHS and social care, this an example of how difficult it is for someone to get much needed care even with a supportive and proactive family.

EnPointe

Danien said:

To me it sounds like she needs an actual ward rather than a virtual ward, but I suspect these types of things are put in place to prevent people they think may become bed blockers from actually being admitted. Don't be afraid to push for admission if you think it is warranted. It is often the only way a person gets a thorough assessment. If she is end of life, she needs care to make her comfortable, safe and pain free, not sitting alone in her own home confused and losing her dignity. But with the state of NHS and social care, this an example of how difficult it is for someone to get much needed care even with a supportive and proactive family.

I really suggest you  get a good understanding of  what Virtual wards are and what they aim to achieve, and also the  very  real problems  that  hospital admission poses for the frail, vulnerable, confused  but  physically  still just about coping  individual. 

 hospital admission brings with it  the  introduction of the risk of nosocomial infection and other iatrogenic harm, plus of course the experience of 'pajama induced paralysis'  that comes from  moving people out of  their own home envirojhnment into an institutional setting

https://www.carersuk.org/media/exsbe22x/carers-uk-policy-briefing-virtual-wards-including-hospital-at-home-updated-jan-2024.pdf

https://www.england.nhs.uk/virtual-wards/what-is-a-virtual-ward/

https://www.nuffieldtrust.org.uk/resource/virtual-wards-and-covid-19-an-explainer

elsien

Yes, people on hospital wards can lose their mobility very quickly if not supported to get up and move around.  Then they lose the option of returning home with safe support because the hospital admission has effectively contributed to more of a decline. 
Virtual wards are a new concept to me - off to do some reading!

ChasingtheWelshdream

From what we have read and been told, the virtual ward is a very good outcome at this stage. Hospital level care but allowing MIL to retain independence in terms of mobility, choice and remaining in her home. 

How everything pans out with her health remains to be seen, but we are happy at the moment.

otb666

I dont know if this has been mentioned but with our elderly relative he has his medicine given by chemist in daily boxes which means you can check they are taking medicine when you visit.  Also when in hospital for UTI they discussed with us non resuscitation which made us think he was near the end But once infection sorted  and he showed them he could walk with frame length of ward plus manage their steps he was sent home.  We always park miles away and as two of us I pick him up outside door.  The steps in his house are so small compared to hospitals and toilet upstairs but he was so determined to get home.  Once we said no one can make you go in home he seemed to calm down and struggle on his choice.  Thanks for posting its good to share experiences.  Its quite a shock how the elderly are treated and how they will soldier on to save a few quid.

Danien

EnPointe said:

Danien said:

To me it sounds like she needs an actual ward rather than a virtual ward, but I suspect these types of things are put in place to prevent people they think may become bed blockers from actually being admitted. Don't be afraid to push for admission if you think it is warranted. It is often the only way a person gets a thorough assessment. If she is end of life, she needs care to make her comfortable, safe and pain free, not sitting alone in her own home confused and losing her dignity. But with the state of NHS and social care, this an example of how difficult it is for someone to get much needed care even with a supportive and proactive family.

I really suggest you  get a good understanding of  what Virtual wards are and what they aim to achieve, and also the  very  real problems  that  hospital admission poses for the frail, vulnerable, confused  but  physically  still just about coping  individual. 

 hospital admission brings with it  the  introduction of the risk of nosocomial infection and other iatrogenic harm, plus of course the experience of 'pajama induced paralysis'  that comes from  moving people out of  their own home envirojhnment into an institutional setting

https://www.carersuk.org/media/exsbe22x/carers-uk-policy-briefing-virtual-wards-including-hospital-at-home-updated-jan-2024.pdf

https://www.england.nhs.uk/virtual-wards/what-is-a-virtual-ward/

https://www.nuffieldtrust.org.uk/resource/virtual-wards-and-covid-19-an-explainer

Thanks, as an ex nurse I'm well aware of the issues of elderly people being admitted to hospital, having dealt with it first hand as a nurse including infection control and patients acquiring infections from hospital. Of course back then we called it 'sick role' not 'pajama paralysis' (I kind of like the term though) and have worked on ways of dealing with these reactions to hospital admissions. I've also experience of a situation where virtual ward was used where actual admission was delayed because of issues of bed availability and concerns of bed blocking once admitted.

Notice where I said 'if you think it is warranted'. I was making a warning of something that can happen, not saying it happens all of the time or even mostly, just to be aware of. Virtual wards can be excellent in the right circumstances, and I am a big fan of the change. As someone with a serious illness who would have to be near death to let myself be admitted ( I also suffer social anxiety and hate hospitals - ironic I know, but I've self discharged a number of times as I couldn't take the ward any more), it is good to know there are other options available that I can push for (though in my case they tend to want me admitted due to my illness severity which is frustrating, but I've twice had hospital acquired infections,  one particularly nasty and antibiotic resistant).

Deciding whether a person can be cared for at home or needs admission to hospital or needs 24hr care can be a difficult decision especially where dementia is involved or where there are other difficult issues to consider. I provided information for the OP, it is for them to assess the situation with their family member with all information possible so they can make a fully informed decision.

Danien

ChasingtheWelshdream said:

From what we have read and been told, the virtual ward is a very good outcome at this stage. Hospital level care but allowing MIL to retain independence in terms of mobility, choice and remaining in her home. 

How everything pans out with her health remains to be seen, but we are happy at the moment.

That's really good then. I just wanted you to be aware that if the situation changes you can push for something different if you don't think the virtual ward is appropriate any more. Sometimes the NHS can be brilliant, but sometimes we have to give a strong push for the right thing. Many people just accept what they're told and do not feel able to advocate enough for themselves or their families when faced with authority in front of them. Just something to remember going forward if the situation changes - doctors, nurses, other health professionals are not always right, never be afraid to challenge them of you think they're wrong.