Home care

Farway

Sterlingtimes said:

Savvy_Sue said:

I don't wish to be too pessimistic, but you might want to consider for how long this situation is sustainable, and whether, realistically, residential care might be needed. If it is, IMO the sooner you are able to arrange this, the better - the more capable your mother will be of engaging in the process, and the activities on offer when she arrives. 

But has anyone checked for a urinary tract infection? that can cause quite serious confusion.

Thank you. I will discuss UTI with the GP when he calls for the first time post-fall tomorrow.

My mother is firmly resistant to residential care. She appears to be very lucid with outside callers. A social worker is also planning to call tomorrow. I will try to reassess the situation when all professionals have called.

Sounds very similar to my late mother, managed to fool all the social workers and Dr, who IMO were looking for a reason to be fooled anyway because by diagnosing dementia it meant they would then have to "do something" instead of dismissing it as forgetfulness

It literally took years to get a social worker to really do a proper test with one of us in attendance before it was officially confirmed what had been obvious for years

Dementia made her & from other reports I hear, very cunning and very able to fool the willing or untrained

It is a horrible illness and one that just takes over caring relatives' life, from the complaint phone calls you've already had to the imagined theft by carer of loo rolls, tea bags, fatty  or no meat in meals etc which may yet follow once care is in place

Mum never made it to residential care, died while we were still fighting LA for funding and placement, and to rub salt in the cause of death among others was finally acknowledged as Dementia

in_my_wellies

Sterlingtimes said:

Thank you. I will discuss UTI with the GP when he calls for the first time post-fall tomorrow.

My mother is firmly resistant to residential care. She appears to be very lucid with outside callers. A social worker is also planning to call tomorrow. I will try to reassess the situation when all professionals have called.

You have a doctor calling?! Ask them everything you can think of and then ask, "Is there anything else I should be aware of?" because you don't know what you don't know and they may not volunteer it if it means more work/time 

Six weeks today since mum came home after her severe stroke which left her left side paralyzed and I haven't been able to even speak to a doctor. She also has medium to advanced Alzheimer's and vascular dementia and since returning from hospital this has worsened. She's started sundowning! The hospital placed her on 5 new medications. I asked for a review last week due to her deep sleeping for 42 hours. The review will be by phone on 12th August. 

elsien

Referral to the memory team if one hasn't already been made is a good idea - they are the people in my area who might look at medication to slow down the progress of the dementia.
Also wondering if the social worker is looking at a Care Act assessment which if mum has substantial difficulty in being involved with due to not fully appreciating her support needs, you should be part of as well.
It's still relevant even if she's a self funder because it's around her current support needs and how these will be met. It gives the care plan to give to any longer term care agency.
More information here. 
The Care Act. (ageuk.org.uk)

trevjl

Sterlingtimes said:

pollypenny said:

Age Concern are marvellous. Consult them and I'm sure you'll find that one of their workers will complete the AA forms for your mother. 

Her circumstances are identical to those of my aunt some years ago. 

That is a good call from someone who understands the issue. Thank you. 

I applied and got AA for my 88 year old at the time mum last year on advice from a friend in a similar position. The forms were very easy if a bit long winded. Take a look but don't be put off by the length of it, it's actually not as complicated as it looks and repeats itself on numerous occasions from memory.. Mum only has sight in one eye and very bad arthritis in her hands. Sent the forms off and a couple of weeks later the money appeared in her account and has been ever since.

The one issue I had was that she was totally against it. Partly pride and partly she has never claimed for anything and didn't like the idea (she lives solely on state pension).

I convinced her in the end to sign them saying if the government has billions to throw at covid then they could afford a few quid for her !!!!

Savvy_Sue

Sterlingtimes said:

Savvy_Sue said:

I don't wish to be too pessimistic, but you might want to consider for how long this situation is sustainable, and whether, realistically, residential care might be needed. If it is, IMO the sooner you are able to arrange this, the better - the more capable your mother will be of engaging in the process, and the activities on offer when she arrives. 

But has anyone checked for a urinary tract infection? that can cause quite serious confusion.

Thank you. I will discuss UTI with the GP when he calls for the first time post-fall tomorrow.

My mother is firmly resistant to residential care. She appears to be very lucid with outside callers. A social worker is also planning to call tomorrow. I will try to reassess the situation when all professionals have called.

Will you be there for these visits? It hasn't been clear to me whether you live nearby or not. 

Whether you are near or far, you MUST make it clear to EVERYONE, whether they want to hear it or not, that you CANNOT meet your mother's needs, even if she is giving the clear impression that you can. Personally I would scale right back on what I am prepared to do, so that it's possible for you to do more if you have capacity but you are not being expected to go over and above - so if you are willing and able to make multiple daily visits, say that you can only visit once; if you are only planning to visit once each day, say that you will only be able to call in twice a week, and so on. 

Especially make it clear that you cannot lift your mother, transfer her from bed to chair and vice versa, or get her off the floor if she falls again. 

And as for her firm resistance: you need to make clear your firm resistance to damaging your own health and wellbeing. 

trevjl said:

Sterlingtimes said:

pollypenny said:

Age Concern are marvellous. Consult them and I'm sure you'll find that one of their workers will complete the AA forms for your mother. 

Her circumstances are identical to those of my aunt some years ago. 

That is a good call from someone who understands the issue. Thank you. 

I applied and got AA for my 88 year old at the time mum last year on advice from a friend in a similar position. The forms were very easy if a bit long winded. Take a look but don't be put off by the length of it, it's actually not as complicated as it looks and repeats itself on numerous occasions from memory.. Mum only has sight in one eye and very bad arthritis in her hands. Sent the forms off and a couple of weeks later the money appeared in her account and has been ever since.

The one issue I had was that she was totally against it. Partly pride and partly she has never claimed for anything and didn't like the idea (she lives solely on state pension).

I convinced her in the end to sign them saying if the government has billions to throw at covid then they could afford a few quid for her !!!!

again, make it clear that the AA is to help pay for the help she NEEDS, because you cannot meet all her needs. 

Sorry, this is all still a bit raw for me as we've just had to move a firmly resistant relative into care, and I wish we'd tried harder to persuade her a few weeks earlier, because I don't think the delay has done her - or those caring for her at home - any favours. 

pollypenny

Sterlingtimes said:

Savvy_Sue said:

I don't wish to be too pessimistic, but you might want to consider for how long this situation is sustainable, and whether, realistically, residential care might be needed. If it is, IMO the sooner you are able to arrange this, the better - the more capable your mother will be of engaging in the process, and the activities on offer when she arrives. 

But has anyone checked for a urinary tract infection? that can cause quite serious confusion.

Thank you. I will discuss UTI with the GP when he calls for the first time post-fall tomorrow.

My mother is firmly resistant to residential care. She appears to be very lucid with outside callers. A social worker is also planning to call tomorrow. I will try to reassess the situation when all professionals have called.

I'm having serious deja vu here. This was exact what we went through with my aunt. She lived 300 miles from me in Kent. Her nearest niece lives in Hemel Hempstead, the other side of the M25. 

The macular degeneration was acute, but she would not face that she wasn't coping. I'd contacted the Kent Services for  the Blind, thought they ignored her - no, she wouldn't let them in because she couldn't see!   

She'd ring me in a panic because she'd had a 'brown letter'. I'd reassure her that it would be her pension statement. Since she really had no idea of time she'd up wandering around at night and playing loud music. She did eventually go into a very expensive care home and insisted that the staff were 'all rough and dirty and her niece was write a report for the Guardian on it'.  

It's going to be hard for you,OP. Age Concern will probably be your best bet. Try to e with her when any social workers call. 

Edit to add: my aunt spent the last five years of her life terrified. Had she gone into a residential home home she could have been safe and had no worries. 

Sterlingtimes

Thank you, all posters above, for your brilliant help.

I spoke to the social worker yesterday. This is the weakest part of my experience so far. The council repeatedly points out that funding for my mother's care is provided for UP TO four weeks and not for four weeks. This is an ongoing contrived attempt to make sure that the patient self-funds as early as possible.

The GP was excellent. He ascertained my mother could not speak to him over the phone and then gave me half an hour of his time. He thinks my mother is unlikely to exhibit dementia but is rather mentally affected by her experience and medication (particularly gabapentin).

I have provisionally secured carers which are priced at £18 for each 30-minute visit on weekdays and £20 on weekends.

The current diagnosis letter for her eyes states left eye macular disciform scar, right eye wet age-related macular degeneration. The diagnosis uses many technical terms and measurements. Although her sight is severely impaired, it does not yet appear to qualify for blindness registration.

The above posters' observations on Attendance Allowance are most helpful. We are now in an era where younger pensioners are supporting older pensioners. For my part, I have chronic myeloid leukaemia, which is held in check almost indefinitely by a miracle drug; however, the drug does cause considerable tiredness. I think you are all right in suggesting that my and my mother's circumstances should be referenced in the application. I will contact Age UK tomorrow.

Help has been brilliant from everyone except for social services: the posters here, the ambulance service, the hospital, the GP, occupational therapy, physiotherapists, the carers, the district nurses, the emergency alarm providers, and citizens' advice. Sadly, social services is just playing a financial game.

Savvy_Sue

One thought is whether theres any scope for a stay in a rehabilitation unit? The other is whether she'd accept a 'short break' to help her recover. 

Sterlingtimes

Savvy_Sue said:

One thought is whether theres any scope for a stay in a rehabilitation unit? The other is whether she'd accept a 'short break' to help her recover. 

Thank you, Savvy_Sue. This would, I believe, be a sound course of action. However, she remains resistant. I had a panicked call early this afternoon telling me that she see no one in 24 hours. I went to see her, and she had five visitors in two hours. 

Savvy_Sue

Possibly worth getting the GP on-side? Some people may accept a 'suggestion' from a professional, and if it is presented as either rehabilitation "to help you move around better" or "a short break while you are recovering" then she may be more easily persuaded. And it is entirely possible that she will improve over time, enabling her to return home in due course: that is definitely the way I would present it. 

It's possible that rehab units are in short supply round your way, or that she made a very good recovery in hospital. I believe my neighbour spent three months in one after a hospital stay! But they are definitely not 'long-stay', and you do have to be 'well enough' to go there. There was talk of my dad going to one throughout his hospital stay but his physical and mental abilities started fluctuating wildly so that he was never well enough. 

This is just a random example of their work.