Care needs assessment- is it worth it?

[KEB1]

My mum was diagnosed with mixed type dementia about a year ago, and had a care needs assessment which was done by a Social Worker from the memory team. I felt that this was really just the Social Worker producing a report which repeated back what we had told her about the support mum needed at the time, and that the Social Worker hadn’t added anything to the process. As mum has to self fund we had to arrange the care at home that she did need.
The dementia has inevitably progressed and we are now going through the difficult decision of whether it is now time to arrange residential care for mum - she has hallucinations every night which are becoming more distressing for her, problems taking her Parkinson’s medication (even with carers coming in, who she has sometimes refused entry), sometimes she doesn’t recognise her own home and is desperate to leave anyway she can (she hasn’t yet but I feel as if we are just waiting for a disaster to happen), I don’t think she eats properly, struggles with using the phone, oven, mic etc. She lives alone and does have any relatives nearby (I am 2.5 hours away).
So my question really is whether it is worth going through the stress and time taken by a care needs assessment, if they recommend residential care (I have no idea how ‘bad’ things need to be before they would do this) it might make it easier to convince mum this is in her best interests, but if they don’t it would make it more difficult!
Sorry for the ramble, I have so much going round in my head it is difficult to know what to do next. Grateful for any comments or similar experiences.

 

[JanBWiltshire]

It is a tough situation. I sense social workers just take the path of least residence and wait for a disaster which is when things change. Thiis what happened with my mother, who was very resistant to help or anything which would ease things.

She didn’t recognise her own home, was very aggressive towards my father and was hiding dirty underwear. She kept saying she wanted to do home, even though she was in her hime of the past 30 odd years.

Cut a long story short, we had a crisis end of October when 111 were called (local doctor USELESS) and she was admitted to hospital and has now been transferred to a home. She is self funding but the NHS are paying for the home while they assess her and we are waiting for the next stage to happen in terms of longer term needs.

To answer your question, care assessment is ok but you need to be there when it happens - my mother was a master at “we are just fine and don’t need elderly aparatus“. So, someone who can add the reality is essential. It is vital, in the sense it records them on the system so you are on their radar. I recommend it.

 

[Sarasa]

Hi @KEB1 and welcome to Dementia Talking Point. I didn't involve social services when moving my mother into care as she was self-funding as well. I was slightly naïve when I moved mum as I didn't consider if she had the capacity to make decisions about where she lived. I just knew that she was becoming a danger to herself and others living alone. She had no help coming in and would have sent it packing if I'd arranged it. If you think your mum might have capacity (though it doesn't sound like it) getting a social services assessment might be a good idea. However they are so stretched at the moment that it could be a while, during which time a crisis could have happened.
The other thing to consider is any other relatives that might want a say in your mum's care. t is worth making sure they are reasonably happy with the move, so there are no fallings out about it later. My brother had been keen on mum moving to sheltered accommodation, but I felt her needs were too great for that. We did find some extra care housing near him that was really nice, and I was willing to overlook my reservations as both mum and my brother were happy with it. By the time we'd got mum's flat sold my brother was seriously ill, so a move near him wasn't a good idea, specially as the company had decreased the care on offer and there wasn't a flat immediately available.
I moved mum to a care home near me, telling her it was a temporary move to a 'nice place' while the flat was sorted. Mum hated it and tried to escape loads of times, but it really flagged up how little capacity she really had, though she put on a good show. The home applied for a Deprivation of Liberty Safeguarding order (DoLS) which meant she could remain in the home against her will.
All of this was pretty horrible at the time, and things are more difficult now due to covid, but it had to be done and nearly three years down the line I'm very glad I didn't wait for a crisis to happen before doing it.
From what you've said it does sound like its time to consider a care home. This site is a good starting point when researching places https://www.carehome.co.uk/. We've recently moved mum to a care home nearer where we now live, and moved my mother in law into care as well. My husband and I looked at various places for both of them, and it was obvious that what would suit one would not suit the other. Therefore it is worth having a look at a few before deciding.
I'm sure others will be along shortly with their experiences and suggestions, but in the meantime do have a look round the site. Its a very friendly place and you'll get lots of help and support here.

 

[Rosettastone57]

My mother in law had no involvement with social services at all for her care. She was self funding and would not have engaged with social services. We organised carers and it became apparent after a couple of years that she was no longer safe at home on her own. She was hallucinating and couldn't remember where the bathroom was in her own home, plus, she was a high falls risk. She point blank refused to go into care and wouldn't even leave the house not even to visit family or the doctor. So we waited for a crisis. Eventually she became ill and went into hospital and we organised a care home for her. She went straight to the home from hospital and never returned to her former home.

 

[Moggymad]

My FIL had a needs assessment from social services who despite recognising his needs stated that as he was not on any benefits & his son & daughter were covering the care needs between them they had no need to be involved, unless they stepped back. Help was needed to provide additional support especially as his daughter was reaching the end of her tether & was in danger of burnout so we arranged carers from a private company.
When you are self funding I’m really not sure what use it is to involve SS. If when the time comes for residential care I expect it will be arranged privately. SS did make a referral for OT assessment but nothing more was heard of that. The private care company also did the same referral when they assessed but still nothing heard so that’s probably down to a delay with that dept. The point being made though is that the care company could themselves make that referral so again SS involvement not required.
As far as capacity is concerned you are the best placed people to judge that…I dont see what role a complete strange with no medical background would have in that decision when the time comes.
I have seen the other side of the coin with my mum when she needed carers & eventually a care home. SS were involved as she wasn’t self self funding, although their funding was tight mum got good care.

 

[Sue741215]

I don't know it this would be helpful to you but when the time came for mum to move into a home - agreed with by my sisters - I pretended that the doctor had phoned me and said that due to problems with her heart she needed to go in to be monitored. She had always hated hospitals so I said he had agreed that instead of going into hospital she could go into a special place where she would have her own room. This sounds awful now - even to me - but I comfort myself that all the books tell you to say what is needed to keep the sufferer happy and it seemed kinder than saying you are not capable of being at home. She was in the care home for 3 years and often asked when she was going home but by and large accepted our assurance that she still needed to be monitored.

The only time I considered getting an assessment was when I though she could qualify for nursing care which in theory can be funded but the people at the home said they had submitted numerous applications for people in more need that my mother so we left it.

I did have Power of Attorney that I had sorted out while she was still considered by the solicitor to have capacity to make the decision but I don't think anyone asked for it. I don't think anyone will challenge you for your decisions if all the family agree and it is obviously in her best interests.

 

[KEB1]

It is a tough situation. I sense social workers just take the path of least residence and wait for a disaster which is when things change. Thiis what happened with my mother, who was very resistant to help or anything which would ease things.

She didn’t recognise her own home, was very aggressive towards my father and was hiding dirty underwear. She kept saying she wanted to do home, even though she was in her hime of the past 30 odd years.

Cut a long story short, we had a crisis end of October when 111 were called (local doctor USELESS) and she was admitted to hospital and has now been transferred to a home. She is self funding but the NHS are paying for the home while they assess her and we are waiting for the next stage to happen in terms of longer term needs.

To answer your question, care assessment is ok but you need to be there when it happens - my mother was a master at “we are just fine and don’t need elderly aparatus“. So, someone who can add the reality is essential. It is vital, in the sense it records them on the system so you are on their radar. I recommend it.

Thanks for your reply - there are a lot of similarities!

 

[thistlejak]

Hi @KEB1
One thing to bear in mind - the care home you choose will do their own assessment of your Mum as well to ensure that they can meet her needs. It pays to be brutally honest about everything so that she will be able to stay where you choose for as long as she needs to and won't have to move somewhere else if she gets too challenging. We had a care home with 16 empty beds ( new wing) decline to take MIL.

 

[KEB1]

Thank you all for your replies. I think I am coming to the conclusion that there is probably not much to be gained by involving SS!

 

[Bettusboo]

My mum was diagnosed with mixed type dementia about a year ago, and had a care needs assessment which was done by a Social Worker from the memory team. I felt that this was really just the Social Worker producing a report which repeated back what we had told her about the support mum needed at the time, and that the Social Worker hadn’t added anything to the process. As mum has to self fund we had to arrange the care at home that she did need.
The dementia has inevitably progressed and we are now going through the difficult decision of whether it is now time to arrange residential care for mum - she has hallucinations every night which are becoming more distressing for her, problems taking her Parkinson’s medication (even with carers coming in, who she has sometimes refused entry), sometimes she doesn’t recognise her own home and is desperate to leave anyway she can (she hasn’t yet but I feel as if we are just waiting for a disaster to happen), I don’t think she eats properly, struggles with using the phone, oven, mic etc. She lives alone and does have any relatives nearby (I am 2.5 hours away).
So my question really is whether it is worth going through the stress and time taken by a care needs assessment, if they recommend residential care (I have no idea how ‘bad’ things need to be before they would do this) it might make it easier to convince mum this is in her best interests, but if they don’t it would make it more difficult!
Sorry for the ramble, I have so much going round in my head it is difficult to know what to do next. Grateful for any comments or similar experiences.

My experience was that the care assessment just regurgitated what I had said and offered nothing new. The most useful thing was the capacity assessment which allowed me to make a best interests decision for my mum to remain in residential care ( after she had been discharged from hospital). It was very much left up to me to make that decision ( I have POA) and as you have experienced the assessment didn’t help me with that. She is self funded and I don’t think a priority for the local authority at all.

 

[Peppa1963]

We are at a similar stage also will have to self fund. We had a brief encounter with social services prior to a hospital stay after dad had a fall. To be honest they were and have been completely useless. In Wales there is no CARE strategy at all. It seems the network of so called support workers just do a tick in the box exercise, which is often frustrating and more stressful than prior involvement. They will provide mobility aids and incontinence products though if required after a needs assessment. Also if you were eligible you can ask for ‘direct payments’ instead of a care package. This can only be done after a needs assessment....all things to consider. Good luck.