Care Plans - Any Experiences?

[Mousehill]

Our GP has agreed that mum needs a formal diagnosis. He's arranged the blood tests to rule anything else out and he's coming in the next couple of weeks to pay her a 'routine' visit, where he will ask questions about her memory and general capability. He's advised me that at the stage she appears to be at now, a formal diagnosis will make a difference as additional help could be available for her.

Mum needs assistance dressing, washing and has night time bladder incontinence (although not every night) Her mental state, mobility and coordination vary quite dramatically, even over the course of a day. One thing she is very good at, is slipping into host mode when people come for a short visit. If they stay too long, or talk 'at' her for too long, she blanks out and then gets very distressed when they've gone.

I spend a lot of time with her and when she's having a good day and we can get out for little car trips or do things like baking, she's really happy. It doesn't take much though, to knock her into her 'down' state which is basically, a blank stare, crying, total confusion and occasional paranoia about money and insults for me.

I understand, if mum gets a formal diagnosis, she will get a Care Plan. I keep reading about 'support' but there's precious little about what this actually means. I know everyone's situation is different, but for those who have been through the process. I have some questions:

1. If you are the principal carer, how much did you feel you were listened to?
2. Was the PWD offered any occupational therapy or physiotherapy?
3. Have you been offered any respite care? How much choice was there as to how this was organised?

At present, we use a private care agency and to be honest, as a family, we're not really enjoying the experience because it's causing more stress than assurance. It feels as though they are not listening to us and have a very 'nanny knows best' approach. It feels as though we are under scrutiny, rather than paying for care.

I'm in no way exaggerating when I say that for a few days after the 'care review' I was for the first time in my life, actually suicidal. I have never felt so utterly pointless and desperate. I'm pulling back now and keeping my fingers crossed for the GP appointment, but I'm still very fragile and as I have an incurable auto-immune disease, a combination of Xmas stress, flare up and clash with the agency has left me really determined to take a step back and re-evaluate.

I spoke to an Admiral Nurse who was excellent and is going to find out if we are eligible and sent me lots to read. I just want to find people who genuinely listen to the family of the PWD and more importantly, really get to know the PWD as just a 'P' as well as a 'PWD' .

I hope I truly hit rock bottom last week and the only way is up!

 

[Sirena]

I can understand how you feel, as I have several chronic health problems myself, my mother was diagnosed about five years ago and I am her only relative (and have LPA). There were several points where I thought I couldn't cope with any of it, but fortunately her money allowed me to buy care for her. She had 18 months of care at home, and has now been in a care home for two years.

You say your mother is paying for a private care agency, does that mean she has the money to self fund her care for a while? If that's the case, that is good news as you can buy what she needs. It is a shame you are not happy with the current care agency, my mother's care agency was very proactive and arranged any additional help required, including OT visits. It could be worth changing agencies. If you need local authority funded care it will be a case of several short carer visits to do personal care like washing and dressing. As long as you provide your mother with support, SS will be very happy to let you continue to do it, so you are wise to step back.

In terms of finding someone to listen, these forums are a wonderful resource.

 

[Lynmax]

In our case, even after a formal diagnosis, we were not offered any support or care plans. After diagnosis, mums medical needs were referred back to her GP and we had one visit from someone (not sure who!) to signpost us to various local charities and organisations, none of which mum needed at the time. But I assume I could revisit the list if necessary.

At no point was any more formal support offered, it appears that we were just left to get on with it! And that is still the case.

As mum is self funding, we currently use our LPA rights to pay for a private Carer ( my sister) with my brother and me filling in so that mum has a visit and hot meal every day. However we are about to look for a care agency to begin making a few visits a week as when my sister goes on holiday, my brother and me cannot cover all her visits. I would like mum to go into respite care while my sister is away but my other siblings are not totally convinced but we are going to look at some care home anyone to get a feel for things.

But I think this will all have to be be sorted out by us, with no involvement from Social Services or medical professionals.

I think I will be asking for a lot of advice from here!

 

[CardiffGirlInEssex]

@MrsV it depends to some extent whether your mum will be self funding. Even if she is, you can still ask Social Services to do a care needs assessment but this doesn't necessarily happen quickly. If your mum will be relying on local authority funding the care needs assessment is essential but again may not happen quickly.

Social Services tend to focus on purely physical needs but that sounds like it might be your main concern anyway. If LA funded it will most likely result in a number of short daily visits, anything from 1 to 4 times a day, but the timings will vary as will the carers.

If it's a self funding situation, you can be much more specific about length and timing of visits and what needs to be done. You should also get better continuity of carers. Obviously it won't be one single individual all the time, but in my experience there is a small group who are assigned and we know which one to expect for any given visit.

This is based on experience with my Dad, who funds his own personal care support. He doesn't have dementia though. I think we just struck incredibly lucky with the company we chose. At the time it was based on them being able to start support within 24 hours and they have been great.

My mum has dementia and has rejected pretty much everything offered by SS (she is LA funded). They focus purely on physical needs when what she really needs is activities and company. She is very slow at showering, dressing etc but can still manage it and loathes having strangers in the bathroom with her. There is one visit per day, in the morning, to check that she is still ok and to empty her overnight commode, but that can be any time from 8am to 10am.

I'm sure others here will be able to offe4 more detailed advice.

 

[Sirena]

@MrsV is your mother self funding? If so, you can find a care agency and arrange care for her. The care manager will assess her and organise her care plan, which is just a term for deciding what help she needs. You can make the decisions about how long the carer is there and what they do, as your mother is paying privately for it. There is no need to involve SS, they will not offer any help.

If your mother is not self funding, you need to ring Social Services Adult Services for your area and request a needs assessment for your mother. When I did this it took them three weeks to get back to me, so be prepared for a wait. The extent of their care package is generally 4 x 30 minute home visits, where a carer will do personal care and other basic needs. You have little control over what times they arrive. As the social worker told me, it's just crisis management.

 

[Floria Tosca]

Hi. I use private self employed carers for my husband, he has severe mixed dementia, I would NEVER use an Agency. We had an Agency for his Mum & Dad and they were useless and expensive so we got rid.

Initially I had to pay for Hubby's care out of our savings but as his needs increased we managed to get some NHS CHC funding. We don't get 100% funding, although I think we should, but I know we are lucky to get what we get as some people don't pass the criteria and get nothing.

For my Husband I wrote my own care plan, advertised locally (Village Facebook, word of mouth, etc). I interviewed the applicants and chose the best ones (5 of them) who could do the care we need at the times we need. (John needs 24/7 care). Sometimes things fall apart if a carer is off sick or holiday but usually the others step in and cover, or I do it. I made the first (more experienced) carer the Chief Carer and pay her extra so she does the rotas and sorts out the others! I used to do it ALL on my own but I was getting worn down and if I fall ill who's going to look after everything? Anyway I based the care plan round the CHC Funding check list so when we have an assessment I can look back and answer truthfully about John's needs.

Despite the fact that prior to my Husband's illness we lost a lot of 'us' time looking after his parents (both with dementia) who lived 5 minutes away, I learned a lot about caring for relatives and all the hoops you have to jump through to get help. I have had to fight for everything for my husband - District Nurses who won't come out, Doctor who doesn't come out, A&E department who don't understand Dementia, Hospital Staff who don't understand, Social Services (useless), OT (useless), Relatives (useless), Friends (useless)..............

 

[Tragicuglyducky]

For those unsure where to start with care plans, I strongly recommend contacting Age UK. Care is such a broad service, where do you even begin? I found whatever I researched on the internet just sprung up a million questions, I felt like I was missing the very first piece of the puzzle. People assume you know the simplest things about getting care, but we didn’t! We have an Age UK local to my dad, we made an appointment to see someone and they told us all about the system for our local authority, how referrals work, told us about brokers services, what benefits to get, how to do a financial assessment, local services that could be of benefit, the local daycares etc. They were a godsend in terms of a starting point. Especially because you’re talking to an actual person you can ask them all the questions swirling around in your head! Highly recommend them if you don’t know where to begin!

 

[Rosettastone57]

thank you so much for this information. We have an ageuk near us.
Once we get to the point where we’ve had an assessment of needs, and they tell us what carers we can have, If they allow us 3 or 4 care visits a day. Mum will be on her own between visits, is this what normally happens? At the moment mum isn’t even capable of making herself a cuppa. thanks

My mother-in-law had 3 visits a day from carers , of an hour each. She was completely self funding. And yes,she was on her own in between visits, unless family saw her, which wasn't very often. The carers made sure she had a drink and meals and prompted medication. Once it got to the stage when she couldn't manage when the carers weren't there, ie couldn't remember where her bathroom was in her own home and needed prompting with everything, then the only option was a care home

 

[Tragicuglyducky]

thank you so much for this information. We have an ageuk near us.
Once we get to the point where we’ve had an assessment of needs, and they tell us what carers we can have, If they allow us 3 or 4 care visits a day. Mum will be on her own between visits, is this what normally happens? At the moment mum isn’t even capable of making herself a cuppa. thanks

My dad had 3 visits daily, 15 minutes each to heat rustle something up to eat, get a drink, and general well-being check. 3 days a week one of those visits is extended to go shopping, make a slow cooker thing etc. Depending on the care company they can do loads of different things like clean, out a wash on, just sit and chat. They can take your mum out to any appointments, day care etc. Or if the care company doesn’t offer the more social aspect then Age Uk should be able to tell you about how you can hire a PA for your mum - basically a buddy who will take your mum shopping, go to hair dressers or visit a friend etc. Obviously these people are paid for the time spent doing these things.

If you’re worried about how your mum will get on in between the visits this is where a social worker or Age UK can give you lots of other suggestions. There are a lot of gadgets and stuff that might put your mind at ease or make things that little bit easier.

 

[Mousehill]

Thanks All Age UK sounds like a great resource. When I first took over care of mum, I rang Social Services to see what was available and they did send someone round for an assessment but everything they provided was based on eyesight, not dementia, as we had no formal diagnosis.

We do have self-funded carers, doing several 1-hour shifts a week, with me and my brother doing the rest, but it's a revelation to us that some care agencies provide additional advice because the one we selected claimed experience with dementia and although they are great in many ways, they are clearly not used to working in partnership with the family and are much more geared to looking after elderly people whose relatives don't see them every day.

I feel we are getting back on track now with mum. It would be great to know of anyone else had any answers to the 3 questions I put up in the OP. It's clear that from area to area, both social services and care agencies vary in quality of service. I've really found the Admiral Nurses the best thing so far: their experience stands out and they actually speak to family members with empathy and lots of practical suggestions.

The main thing is that I do want to find some good OP for mum and also explore whether she is also suffering from depression on top of the dementia (and to find out what type of dementia she has because even if it doesn't flag up any additional treatments to try, or answers to timescales etc., at least we have the peace of mind of knowing we've tried everything.

 

[Tragicuglyducky]

I don’t know if this varies depending on where you live but my experience is that your diagnosis comes first. The GP is the only one that can get the ball rolling which you have obviously started. In my area my dad was then referred to the memory team, an assessor came out with some forms and a memory assessment and my dad was give a score that indicated memory problems and he was then referred to the memory clinic. As part of that referral he had to have some blood tests done and a MRI scan. Those need to be done with good time for the results to be available for the memory clinic appointment. At the memory clinic the doctor confirmed my dads diagnosis of Alzheimer’s and vascular dementia. He was prescribed meds for the dementia. The best part of the referral is over the following year we learned a great deal about physical and mental curiosities that the memory doctor was able to explain as a result of dementia and his mixture of existing meds etc. He was also referred to adult social care and occupational health to assess his needs etc. Despite the frustrations with support from our local authority, when we did see someone they were incredibly helpful But you could really tell how little funding there was in elderly care and social services. We were very lucky in the sense that most people did really listen to me. But we’ve also had times where I felt like they were reviewing someone else’s case because they had not listened to me at all. We had a phase where we were virtually ignored because we kept missing each other’s calls. They then emailed me and I found email better because there is no denying any promises etc because you have a paper trail so to speak. I would recommend you pretend to social services that with you working email is the best way to contact you. I found it the most effective way of agreeing plans etc. In terms of respite, if you don’t qualify for LA funding then you can pretty much go anywhere. You just need to find the carehomes you like the look of and see if they offer respite and if they have a room

 

[mickeyplum]

Hi. I use private self employed carers for my husband, he has severe mixed dementia, I would NEVER use an Agency. We had an Agency for his Mum & Dad and they were useless and expensive so we got rid.

Initially I had to pay for Hubby's care out of our savings but as his needs increased we managed to get some NHS CHC funding. We don't get 100% funding, although I think we should, but I know we are lucky to get what we get as some people don't pass the criteria and get nothing.

For my Husband I wrote my own care plan, advertised locally (Village Facebook, word of mouth, etc). I interviewed the applicants and chose the best ones (5 of them) who could do the care we need at the times we need. (John needs 24/7 care). Sometimes things fall apart if a carer is off sick or holiday but usually the others step in and cover, or I do it. I made the first (more experienced) carer the Chief Carer and pay her extra so she does the rotas and sorts out the others! I used to do it ALL on my own but I was getting worn down and if I fall ill who's going to look after everything? Anyway I based the care plan round the CHC Funding check list so when we have an assessment I can look back and answer truthfully about John's needs.

Despite the fact that prior to my Husband's illness we lost a lot of 'us' time looking after his parents (both with dementia) who lived 5 minutes away, I learned a lot about caring for relatives and all the hoops you have to jump through to get help. I have had to fight for everything for my husband - District Nurses who won't come out, Doctor who doesn't come out, A&E department who don't understand Dementia, Hospital Staff who don't understand, Social Services (useless), OT (useless), Relatives (useless), Friends (useless)..............

I am in awe of the way you've sorted out your own carers so efficiantly! I was a manger in a caring service before retiring and was used to advertising for and interviewing staff and all the issues around that.
23 Years on, with my brain-cells a lot fuzzier I wouldn't know where to start. Can I ask a few questions? Did you have to check the applicants have police clearance and personal insurance against accident in the home whilst working.
How on earth did you decide on the rate of pay?
Are the carers happy to have a 'boss' in a more senior position earning more?
Do they do as they are told or do you have to constantly deal with their petty complaints?
If the carers are from the same village did you have to get them to sign a confidentiality form? Have they had any sort of training in Fist Aid or is the main thing just to make sure they have bas of common sense.
Maybe you should publish a handbook for folk like me!

 

[Mousehill]

Tragicuglyducky - thank you for answering my questions (you are hereby promoted to 'Very Fine Swan Indeed')

The hardest part for me is, because I know people working in the NHS and other branches of the local authority, I know how much pressure they are under. Having said that, I find 'dead ends' hard to deal with. For example, when the LA social worker advised mum's optician to refer her to a consultant and the consultant concluded her eyesight wasn't too bad for her age and it was 'probably' just the way her brain interpreted what she saw, it was like hitting a brick wall! The consultant couldn't tell me, despite asking a very specific question (what's the next stage? Should we be referred anywhere else?) Social Services expressed surprise, but again, when asked 'what do we do now?' they couldn't come up with anything.

We finally got fed up of Social Services when I had to call the non-emergency NHS number and the paramedics came out and advised mum went into A&E. She was there all night with nobody attending to her except me and eventually, I was sent home and told they would find her a bed for the rest of the night (it was 4am) The next day, I was told she had agreed she needed help getting up and dressed and would I agree to this being provided? When mum got home, had a nap and was feeling better, she said she hadn't actually agreed to anything!

The following day, she was unsteady and most definitely not with it again. It was before I started coming in the morning to get her up and dressed and she was wandering in her knickers and vest. I'd just managed to clam her down, find her a chair to sit on and was about to get a dressing gown and a hot drink when a man just knocked on the door and then marched straight in, announcing he was here to help! Mum freaked! I helped her back to her room and tried to explain that it wasn't a good time, Mum didn't actually want help from outside and bursting in like that was totally unacceptable. To be honest, it put me off dealing with Social Services again, especially as we would be self-funding anyway.

We did find a great team of carers, but recently, a few incidents have left my trust in them shattered and that's not a good place to be! This has made me investigate what else is out there in terms of care agencies and go back to the GP, who at last, is working with me and I'm very positive about that.