Carers assessment

[Chrisaldridge]

my ‘journey’ in to caring began 12 years ago but really ramped up when one parent died then covid kicked in. I tried to get some help in the second lockdown and spoke to someone (social services?? An occupational therapist?) who organised for some aids and minor household adjustments over the phone. Lock down and the year after was confusing as nothing was normal so I’m not sure what I should have done/asked for. I’m now into my fourth year of working full time/parenting a primary aged child/caring for my remaining parent who lives alone in their own home, a 40 minute drive away. Like many they refuse to move and, being of sound mind, I can’t make them. I have two days off a week and spend one of them with that parent and most other days I’m doing something on their behalf be it shopping, admin, finances, sourcing entertainment, checking they are up and well.

Some days I’m ok and other days I feel so down and trapped. I never have time to myself. My one week family holiday leaves me racked with guilt in case something happens and I also have to listen to the ‘you know I won’t see anyone for X days…’ though I’ve been de-sensitised to some of that especially as I’ve been through several rounds of trying to get them to access services available like social groups. I worry constantly about the house repairs needed at the parents home, there’s one particular issue that is an time bomb waiting to go off and I don’t know how I will cope when it does and my own home is a dump that hasn’t been decorated or had anything done in years. My remaining parent can’t use any sort of digital device so I get to do everything - I’ve even found myself locked out of my own GP services as their triage needs a unique mail address and mine was already in use for my parent.

anyhow, pity party over - I’ve heard that I can get my own assessment, a carers assessment without my parent being involved. Has anyone done this and was it worthwhile? I’m not sure what I want to achieve - more help, less
anxiety? Probably an answer to the doomsday question of what happens if/when the home issue becomes an emergency. If anyone could share how/if it helped them and the person they care for, I’d be interested to know.

Does your parent claim attendance allowance? If so, they could use it to get some help? My DM has a cleaner once a week, gets age concern to collect and wash/iron her bedding, has someone to see to the garden etc.

Sorry, I don't know the answer to your original question but I will be following with interest as I am in a similar position but not as much to do.

Yes, I got them attendance allowance and they qualify at the higher rate. I then managed to persuade them to let me source a carer for a couple of hours and a gardener, so that’s where the money goes. I was on my knees during lockdown before this help, doing everything. I’m not saying I was going to do anything stupid but 100% I could see why someone would, particularly as there are thousands even worse off than me.

I had one (full time carer for my DH). It was basically a cosy chat and bugger all help really, I am sorry to say. It may depend on where you live though, so I would still get one just in case it is more helpful in your case. Your parents won't be involved.

I get how tough it is, I really do. I also live about 45 mins away. How capable are they? Could you do a supermarket delivery and they take it in and put it away for example? I'm assuming you don't have siblings to help?

What is the ticking time bomb? Anything you can prepare for? (Do you have power of attorney?)

Sounds like you need to see your GP and perhaps reach out to an organisation such as Age Concern for some support. You can't burn yourself out as you'll be no good to anyone then

@DragonScreeches Thanks for sharing. I thought this might be the case. I am a registered carer with my own GP and the regional carers group did give me a call but it is was mainly about money which my parent won’t be eligible for. Pathetically, I did appreciate her input/sympathy as I get none from anywhere else.

Yes - get a carer's assessment done. several reasons :-

1. bringing in a outside agency can help with negotiating for your needs to be met with your parent.
2. It can help with bringing in additional support into the parent's home, eg carer to help with bathing / showering / hairwashing,
3. advice of benefits to claim for - very useful, eg mobility allowance, attendance allowance so you can buy in outside help - taxis, cleaners, etc
4. they can pass on information, help and support from outside the home, eg day centres, voluntary groups etc
5. they may be able to point you in the right direction for grants for home maintenance, new boilers etc
6. will help you define your own boundaries of what you can realistically offer without neglecting your partner, children and your own well being
7. Tip - try hard to have a separate conversation with the SW, not only with your parent. You need to be able to say things you don't necessarily want your parent to hear

Heath Warning - your parent won't like it. Answer - tough it's happening.

It's really really important to remember the thing they say on the safety briefings on planes - Put on your own mask before helping anyone else.

You have to look after yourself. So many families get to breaking point before asking for help. Someone coming in from outside the family can help explain how important it is for them to accept support from 'outsiders'. Doesn't always work but it's important to draw a line in the sand.

Have a think - what would you like to happen, eg cleaner to hoover thru, clean bathroom, change beds, put a load of washing on, carer coming in for personal hygiene (bath, shower etc), visit to day care centre twice a week.

Also have a think about your boundaries - sounds to me as if your approaching breaking point so something has to give. So have a carer calling in the morning to help get them up, washed and dressed. Means you don't have to call to check they are up and about and therefore you can call at a less busy time for you. Putting you in contact with local support groups who arrange singing groups, afternoon bingo sessions & teas means you don't have to arrange entertainment.

You will need to gird your loins, harden your approach and maybe get active support from a partner, siblings etc to say to your parent that outside support needs to be put in place as you can't do everything. I agree you can't make your parent move home, but that does not mean you have to piss off husband, children, work and bugger up your health trying to be wonderwoman. So they need to seriously think about accepting outside help so you can step back.

Be prepared for tantrums, emotional blackmail and a refusal to engage. In other words things may have to get a little bit comfortable for your parent before things can get better for everyone.

Get the request for an assessment in ASAP

Sorry should add - you get most out of the assessment if you have an idea about what you want. Also accept any help on offer however minor.

The carer's assessment is nothing to do with organising care for your parent. It's to assess your physical and mental health - either to offer support to help you cope, or - if feeling cynical- to patch you up just enough so you don't drop your parent in the lap of the state.

I'm a carer for my adult DC, and in our area, the carer's assessment was carried out at the same time as their needs assessment (when they turned 18 and moved over to disabled adult services), so although they were separate statutory processes, the reality was that they were kind of bundled in together in one document.

And much of the support in the needs assessment for DC was provided on the basis of avoiding potential carer burnout (e.g. providing a support worker both because it is needed by the person and also because the current caring situation is unsustainable long-term), although this was written in their needs assessment as it's obviously relevant to both of us.

I suspect the council would need to get permission from the person you care for as they will be recording lots of their personal data in order to document and assess your needs as their carer. Only your LA will be able to confirm exactly how involved the parent would need to be though - are you worried they would refuse consent to let you have a carer's assessment (assuming their consent is needed), or is it just that they don't want LA support themselves?

@SuperDupe Thanks for the reply. 45 mins is a kind of ‘so near and yet so far’ distance. It’s too far to access any of the plumbers/builders etc who service my area yet doesn’t seem like it is a huge distance in other respects.

I have something worse than no sibling to help; a sibling who doesn’t help. They do live further away but I’d say 60% of what I do doesn’t need anyone there in person. I think their logic runs that I am ‘close’ so can do everything easily. They visit occasionally but won’t commit to anything up front so it means I’ve often done everything by the time they come and it’s too late for me to arrange a catch up with a friend.

Age Concern are variable per area. I called them four years ago and they reacted like I was the first person ever to ask about elderly services. They don’t provide and won’t recommend any services or tradespeople. The woman I spoke to said surely I could understand how impossible it would be for them to manage such a list which I can but their UK website says that they do in some areas!

on the shopping, my parent is unable to pack away. When my car broke down the very first thing I did was look for a delivery slot that coordinated with the carer being there to receive it and pack it away. That’s actually really hard to find as just being slightly out of synch can screw everything up. It’s things like my car that cause me great anxiety. Just one thing can throw everything else out. I resent the responsibility I have for everyone and everything.

@DPotter Yes, points 1, 6 and 7 are
very relevant to me. Thanks for pointing them out.

it seems like there is some
variation in experiences of what the carers assessment is and how it goes, maybe complicated by it being rolled in with the care assessment of the vulnerable person in some cases. No wonder I’m confused!

Definitely some variation as mine was totally separate from my husband's assessment. I might ask for another as it was a few years ago now.

@SuperDupe the ticking time bomb is a major home repair. Even if I had the time to organise and supervise it which I don’t, I don’t believe they could remain in the house whilst it was done. They couldn’t stay with me as my home isn’t adapted plus I’d need to be with them AND at
their house to facilitate the work. I lose sleep over this and it’s constantly on my mind. What would I do if the house was unfit for habitation? Call adult social services?

Does your remaining parent have any savings? If they do get them to pay for a person to come to them for 2 hours on an extra day and if not to clean then to prep/cook some food and make a portion for the fridge that your parent can microwave the next day. It also means they see a different face and have someone to chat to for a couple of hours. We got my Aunt to do this. She had a cleaner 2 hours once a week on a Tuesday and a lady who came in on a Thursday and prepped/cooked her a hot meal and put a portion in her fridge for her to microwave the next day, so.etimes freeze a third portion too. She had a man who came on a Friday afternoon to tidy her garden for 2 hours and kindly made her a cup of tea as well as himself before he left. So she had 3 different people she saw each week to chat too as well as me and my sisters who one of us popped in each day. One sister showered her, another shopped and I just chatted to her, made her a sandwich or something soup and a hot drink. If it all falls to you and you have no siblings to share the load I imagine you're almost burned out. You could ring SS and tell them you can't cope without some help.

I'm the main carer for my son who suffers from severe mental health difficulties. I've had 3 carer's assessments over the years. None of them involved my son, he didn't know anything about them.

Naively I thought the idea was that they lead to some practical help to help with my responsibilities. In each case I spent ages with the SW going through the ways caring had affected my life (no holidays, no social life, can't go to work etc). The social worker then told me yes, your caring is in the most extreme category, here's £200 to spend on a massage. And that was it.

It actually made me feel pretty crap. It was like they felt all my problems could be fixed with a massage.

I'd be really interested to know if other people have had a more positive experience than this. Not sure how much depends on the area you live in?

So just to add, OP, in my experience don't get your hopes up about getting anything useful out of it!

Both times I've been involved with carer's assessment have been positive, although I appreciate they'll be local variations.

We got most support from Aged UK, who very helpful

How did you access that, please? Did you just give them a call?

But what did they do that was helpful? Age UK were useless too.

OP I was in a similar position but had a nervous breakdown so do the minimum.

Someone told me I'd be contacted about a carer assessment but they never got back to me and I can't see how they can help so I never chased.

you might find the (bonkers name) Cockroach cafe thread helpful if you need a regular venting outlet.

braggingaboutbrasize our council is like that too - what they want is tangible issues they can throw money at.

If something doesn't really convert into a problem that can be solved with money, I find with our council we reach a bit of an impasse, so I have to go away and brainstorm with our carer's centre, OT, etc to be able to go back to the council with a further suggestion that could be solved with money. Otherwise they just kind of shrug their shoulders.

That said we've also had sone great SWs who have rung around their contacts to put us in touch with various charities, etc to address specific issues. So it's not all terrible, but seems to be very hit and miss depending on the area and the individual SW or team.

@braggingaboutbrasize a massage! I don’t know whether to laugh or cry for you that is so ridiculous. And seriously, to the full time carers, respect to you. It’s only going back to my own home that keeps me
sane. The care isn’t constant for me and I can see how much harder it would be if it were.

What would I do if the house was unfit for habitation? Call adult social services?

Sounds as if a respite stay in a care home would be needed for the duration of the works. Adult social services if below the funding threshold, privately arranged if above. Not sure what happens in the case of house being above the funding threshold but no savings. Adult social Sservices might be able to advise on that.

Maybe we were lucky but in both instances (different councils) we got carers coming into the home and referrals for day care, incontinence service etc.

The local Aged UK group played an absolute blinder in offering activities to go to, both as a couple (for my parents) and just for my DM. They were very good at getting my DF to understand he had to accept help.

During covid the local Aged UK group continued running the groups on Zoom (which was interesting, not ideal, but better than nothing) - they set out ipad / tablets. My DF continues to volunteer for the groups even though my DM was admitted to a home and has since died. My DM particularly loved the Singing group

For the 1st set of parents I'm not too sure how the assessment meeting was set up as was a while ago. For my parents we phoned local the social services department and arranged a meeting. Took about 2-3 weeks to set up if I recall.

As a PP said Age UK vary a lot with area. My ILs had masses of help and advice and someone came round to go yhrough the forms for attendance allowance etc. Where mum lives they send you a leaflet you can access online anyway and not much else.

Thank you for the responses. Also, I now realise I have mentioned ‘age concern’ and the charity is actually now Age UK as pp have mentioned. I think they amalgamated a couple of charities for the elderly quite a few years back and this is the name now.

I think one of the things I would value is someone to spell out what is involved in staying in your own home and how much this relies on me. Unfortunately my surviving parent was a traditional housewife and my father was handy so never called in trades to do anything. They have no realistic view on anything to do with the house; a popped bulb is a catastrophe but they are blasé about the major issue that threatens to make the house uninhabitable (think level of disruption akin to a full rewrite - it’s not that but similar). Add to that mix the digital changes that have happened and the utter refusal to engage with any groups or services for companionship… i am pulled in every direction between day to day support (grocery shopping, care of the home and garden (carer and garden do help but it’s not enough), longer term care of the fabric of the house, finance, health and the need for company and emotional support. I always say that if it was just one or two of those things, it would be doable but it’s the combination. Some days I can just surf over the worry, other days it drags me under. It is like having another child but the difference is I have authority as well as responsibility over my child, whilst with my parent, I’m responsible for everything whilst they get to make all the decisions (or not). I guess I was hoping that a carers assessment might help them understand how much help I give and make them more realistic about future choices. Having read the responses I’m not sure it would achieve that.