I’ve posted a few times and received great advice to request care and carer assessments from social services. Thank you.
I called the correct local number for adult social services and made the request, using the proper terminology etc. Someone called me a few days later to say they wouldn’t usually do these assessments if we are not requesting funding at this stage. Also, I need to get the GP to see if Mum really has dementia as it might be a vitamin deficiency or UTI. I know these are possibilities for confusion but Mum was diagnosed 18 months ago after all the correct blood tests, memory assessments, brain scans etc. She has annual blood tests and at the time of her medication review in November had a UTI test but these don’t count and I’m to ask the GP again.
Fortunately, in this case, the manager of the retirement block where she lives has made a request for the care needs assessment. I don’t think they can refuse her as she’s technically a care professional. How do others get these assessments?
But how on earth to get a carer’s assessment for me? The social services lady said if I’m not applying for funding I don’t need one and to call my GP. So I did call my GP who told me to call back if I felt suicidal. Am I eligible? Do I need a private one? I know we’re fortunate that Mum can pay for care out of funds from my late Dad’s half of the old house but I didn’t think assessments are means or health dependent?
Care assessments are not just about funding it’s also about being registered for future care needs and/or emergency.
For example: my husband has a care assessment/plan. I am his full time carer but should I become ill there is a file which is updated periodically to reflect his current needs. So in his care plan is has opted to go into a care home should I become ill and unable to care for him.
What are you currently seeking from an assessment? You need to compile a list. And yes you should be part of that plan as having a carer assessment. Even if Mum didn’t have a care assessment you can still have a carers assessment. Do you know of a local carers group who could support you through getting the answers you want. https://www.carersuk.org/help-and-advice/get-support/local-support
Unfortunaly, there are great gaps across the country in LA’s producing assessments.
I belong to a carers group who complete the assessments and send them to the LA.
You have a legal right to a carers assessment, which should provide you with access to support services and information tailored to your specific needs. It rarely has anything to do with funding and whoever spoke to you is either untrained or under instructions to shut the door on carers.
Stand your ground and insist. Quote the fact that what you are being told does not comply with the Care Act 2014. That should wake them up a bit.
Thank you both for the replies. This is so hard. Social services refused an assessment for Mum again. Regarding permission: Mum says yes one moment and no then next then yes again so they say her consent is not meaningful. They said she has to call them and ask for one herself. She has dementia. She isn’t able to. Even the retirement apartment manager can’t get social services to agree to an assessment for these reasons.
They refused my carers’ assessment point blank as Mum hasn’t been assessed.
Thanks for the tip on quoting the care act at them. But can she get a care assessment via either me or via the retirement apartment manager’s request? If not, how on earth?
They must do an assessment for you and THEN decide if you need support.
Time to make a formal complaint via the LA website, then it goes to the Complaints Officer.
Do you have their refusal by email, or verbally?
Be sure to write everything from now on. Always write down the name of anyone you speak to, date, time, what was said.
Make any excuse you like but get them to email what they said.
Ask the doctor to contact SSD.
They have a “duty of care” to vulnerable adults, especially if they lack capacity!
They broke the law by saying that. You have a right to a Carers Assessment independently of what happens with your Mum.
Now, onto the consent issue: if she can’t give consent, then she needs an assessment because her situation has changed: duty of care requires them to at least ensure that she’s safe. But how did they know she can’t give meaningful consent without carrying out a Mental Capacity Assessment, which must have involved you as her carer?
All excellent points. Thank you. No, she has not had a Mental Capacity Assessment. I am so frazzled and tired. It’s hard not to get so disheartened as to give up and to jump to the assumption that the aim is to make me give up.
These clarifications really help me latch on to real actions I can do. Thank you.
My lovely mum in law developed dementia, it’s the relentlessness of it that really got my father in law down.
In the end there was no alternative to residential care when she became so disorientated after a stay in hospital that she didn’t really know where she was - the home she had lived in since 1947.
She was the nicest kindest mum in law in the world, we both recognised that we both loved my husband as much as each other! Never an argument in all the years we knew each other.
There is no shame in saying “Enough is enough”.
In fact you might get more help from Social Services if you said that she must go into residential unless she had more help at home.
You’re right about additional care! And on when to say it’s enough. It is indeed relentless.
But on reflection I don’t know if I want social services near Mum. They will likely only tell me she’s fine and I am not caring enough, like they did when it was Dad’s turn and I was feeling crushed.
We sold the family home last year to pay for Dad’s care but Dad passed away (RE social services: he fell 70 times in a year - just couldn’t stay on his feet, memory like a fish… and social services person told us he was fine and that I should sleep at foot of his bed as she did for her mother for four years… but I digress). Upshot is we are fortunate to have a care fund out of Dad’s half of the house.
I engaged a live in carer though a private agency for Mum at her retirement flat! Started last Saturday. Carer #1 is lovely: kind, jolly, calm, experienced. Communication with me is clear, understanding, helpful and pleasant.
Get this: I left the house and went for a walk! I had dinner with my Mr! I haven’t puked with fear for 3 whole days! I didn’t have to leave mid-evening or at night to calm Mum!
Mum’s so confused at night that she keeps calling me about who’s in the flat. She won’t settle, gets more and more overtired and difficult day by day.
If the carer can’t get a break or sleep, the carer won’t be able to do two week stints.
I am trying to see this from poor Mum’s confused perspective but lordy lordy I am in just too burnt out. Mum only wants me and always has since I was as child. I worry she will never settle if it isn’t me, that she won’t be able to remember a carer and get used to them. And she’s only going to get worse. Is it fair to make her even more confused and anxious than she already is?
I don’t want the knot of fear back though I feel it creeping in…
I’m appalled that SS have kept refusing you help. I hope you’ve made complaints and that if you get the same SW as previously, that you can definitely ask for someone else. It may take a while (where I am in Hampshire it’s about 12 weeks for a face to face assessment) but they may be able to highlight other things that can help - it’s not about who pays, it’s about what you both need.
With regard to her overnight care and being unsettled, you may have to develop a tougher skin if you don’t want to be drawn back in. It sounds like she will keep pulling you back and demanding attention from you until you are there every minute of every day. Perhaps there is a way of limiting her calls, so that during certain hours you only take calls from the carers? She is only going to deteriorate unfortunately and if you feel like you are the only one who can settle her then you find yourself doing more and more and more whomever takes care of her. This could be a big issue if / when she needs hospital care (where you are not allowed to be there etc) or when the disease progresses and she perhaps needs residential care. She won’t get used to you not being there all the time, but you must get used to not being there every time she calls. Yes she will get distressed, if you were there all the time she would likely become distressed about something else, perhaps that you would leave? Sadly it is part of the hideousness of dementia that patients will and do become very distressed about things both perceived and real - you are never going to be able to resolve everything for her.
Please do take that time for yourself. Live in care is expensive and you need to get the worth out of it as much as your mum so that when you visit you are strong and healthy. You BOTH deserve that xx
When I couldn’t sleep after my knees were ruined, and so painful, I had Amitryptilene to help me relax and sleep.
Could mum’s doctor give her something to help her sleep?
I know it’s not ideal, but surely anything to keep her at home and out of residential care is worth a try.
There are no easy answers to any of this I’m afraid.