Lack of support

I feel like a bit of a fraud posting that subject heading, My mum is 80 and last year after a five year battle sending letters etc to her doctor she was finally diagnosed with vascular dementia, she was also diagnosed with metastatic breast cancer which had spread to her lymph nodes, and bones. She doesn’t always remember that she has cancer, she doesn’t remember to take her medication or sometimes remembers twice, or three or four times, sometimes she’d take a weeks worth in two days, she doesn’t remember to eat. I’ve no experience with dementia, had no idea who to call or contact or what to do. My husband works away during the week and I have two children aged 10 and 15, my son tried to take his own life just before Christmas last year, I have no friends, no other family and feel totally isolated. Eventually after numerous letters to her GP a district nurse started to go every week to weigh her. Her weight plummeted from 11 stone to just under 8, I notified the nurses of her issues with the medication and eventually a social worker was brought in a meeting held and carers put in place.

Carers currently go in three times a day, they stay for five minutes out of a 30 minute call because she won’t let them cook for her or do her dishes, she tells them that if she needs anything that she’ll get me to do it. To be honest I’m exhausted, with a full time job, therapy for my son, constantly calling British Gas because she fiddles with the boiler etc so she has no heating, cleaning excrement from her bathroom floor, shopping, cleaning, washing and all with no support. I contacted social services to say I thought she was getting worse, she’s lost more weight, by sight as the district nurses no longer go in, I’d found medication in her dressing gown pocket, and I also told them about the mess on the bathroom floor. The social worker arranged to see my mum with a district nurse, they said her capacity seemed good, she said she ate when she was hungry, and they were happy with that. I honestly don’t think she’s safe to be at home, and all the stress is making me ill, the only time I sleep is when she’s admitted to hospital. She calls my house at all hours, sometimes she calls five/six times within an hour leaving messages on the answer machine.

Can anyone offer any advice on what to do? I don’t know what’s best for her and I don’t know who to speak to about anything. I know that lots of people on here are carers as in having people living with them that they are supporting, or have given up their jobs to look after people but my job is the only thing that keeps me sane.

Lets start with the carers.
They must NOT leave you work that they are supposed to do.
They are supposed to be helping YOU TOO!
So they should be saying to mum “We are not allowed to leave until we have done this as X is working full time and needs us to do this.”
Mum is probably so self focussed that she just doesn’t realise why she can’t have what she wants from you alone. This is a common trait in the elderly, not just your mum.
I know my housebound mum always regarded me as being able to do anything she wanted, even when I’d just had major abdominal surgery, had a car accident that left me needing 2 knee replacements, so walking with sticks, recently widowed with a business to run on my own and a son with severe learning difficulties!!!

The mixture of dementia and a terminal illness together is really difficult.
Your son and your family must take priority over mum I’m afraid, as she has others to care for her, they don’t.
I think you would find counselling really helpful, I certainly did when I was grappling with so many competing demands on my time. It was very supporting to have a counsellor as mum was dying and afterwards.

It sounds as though Mum really needs round the clock care. Has NHS Continuing Healthcare been applied for?
Is she claiming Attendance Allowance?
When did you last have a Carers Assessment from Social Services?
Who is paying for the current carers?

I have to agree it sound like time to move forward. Home care doesn’t seem to be working. I not sure you mum sound capable of answering questions put to her correctly.

What is your relationship like with Social Services?

I think the fact her medication is not being monitor makes her vulnerable and at risk.

Have you heard of safe guarding vulnerable adults legislation?

I would quote the safe guarding policy to the SS.

You need to tell SS you are going to be with drawing your support. In order to support your own family. Otherwise your own family will end in crisis.

I think often social workers etc take what people say as gospel whereas it is the family who knows them best. So when they answer “yes” to every question they don’t actually mean it.

My late Dad said yes to everything, yes he could manage at home, yes I would go and help them out every day etc. he said yes to everything the doctors asked him too because often he couldn’t understand or hear them properly.

Sounds to me like your Mum needs to be assessed again and you should write some notes to take to the meeting to show a clearer picture of what hour Mum is really like.


Has NHS Continuing Healthcare been applied for?

Just in case it’s needed … going by the opening post , almost an odds on favourite ?

Main thread :

Thank you all for your replies.

I have no idea what NHS continuing healthcare is?

Social services last went round the Thursday before a Christmas, part of her email to me read, “She is obviously feeling tired and sleeping more, she seemed able to make these decisions and I did not doubt any capacity at the time of our visit.” The social worker has only been to see her once previously as far as I know any other information she has on my mum has come from district nurses etc. My mum is no longer seen by district nurses, it’s very obvious to me that she has lost even more weight and although I know no one can force her to eat I also know that if it’s put in front of her she will attempt some of it, she came to me on Christmas Day, didn’t really engage in conversation but ate some potato and carrot. I take her her shopping every Saturday so I know exactly what has or hasn’t been eaten from Saturday to Christmas Day all that’s gone is 3 eggs. She told the carer when I took her home that she’d had chicken curry! I feel that to get further help she’ll have to have a fall or start wandering the streets in her nightie.

My mum pays for her care, I don’t know what attendance allowance is either?

I’m runnin* on empty at the minute, I’m barely sleeping, I dread going round as every weekend there seems to be a major clean up operation, I dread the phone going, I dread the phone not going. I just wish there was a check list, or a go to person but I feel like I’m drifting from person to another.


I have no idea what NHS continuing healthcare is?

I don’t know what attendance allowance is either?

Time for a little research ?

CHC : In theory , a 5 star nursing care service … FREE at the point of delivery … either at home ( Pointon ) or in a nursing care home.
( Not mentioned at the last Needs Assessment or stay in hospital ? )

AA : A benefit which is not means tested … for senior citizens needing extra care :
Attendance Allowance: Overview - GOV.UK
( Also , one gateway for Carers Allowance to be claimed. )

AGE UK … grandmother on their radar ?

A wealth of experience in situations as so described.

Have you sort guidance from them ?

What I’m going to write may upset you, so warning in advance.

I suspect your mum’s cancer is advancing rapidly, and that is why she has little appetite.
When my mum was very ill I Googled “Signs of Dying” and I think it’s time you did too, to understand more about how the body slowly dies from cancer, and how the amount of food the body can cope with is limited.

How long have you been told mum has left, if at all? If no one will tell you, ring up Macmillan, and tell them the current symptoms. I did this when my dad had prostate cancer. They were correct within 14 days.
Is there a hospice in mum’s area. Ring them and explain the situation and ask if they can help. Our local hospice gave all sorts for support to dad in his own home.
Google “Fast track Attendance Allowance” - specifically designed for people with a terminal illness. Claim immediately.
Continuing Healthcare - ask mum’s GP to sort this out asap.
Social Services should have done a full WRITTEN Needs Assessment for mum and a WRITTEN Carers Assessment for you. Ring up and ask for written copies to be forwarded asap. I suspect the useless social worker hasn’t done this!
Council Tax. Since the day of diagnosis, mum has been exempt from Council Tax. It’s easy to claim, and can be BACKDATED!

Mum needs proper help, someone to do all the cleaning so you don’t have to.

Keep a diary of everything that happens this week. How many times you are called, the reason for the call, how many “accidents” mum has. (Is the Continence Nurse from the doctor’s practice involved?)

Sorry this is really brief and to the point, my brain damaged son is home for the holiday, and is ill. I’ll drop into the forum again at some stage today though.

Main CHC thread and sections :

( Follow the colour ! )




Second best ?


CAB on AA for terminally ill citizens :

Claiming Attendance Allowance if you're terminally ill - Citizens Advice

Council Tax … disregards / discounts :

NEEDS assessment :

The Care Needs Assessment Explained | Age UK

CARER assessments :
Carer's assessment | Carers UK

The floor is now yours … links to the information have been supplied.

( Caring is not only about physical caring … background knowledge across the spectrum also helps ?

That’s where organisations like AGE UK and the Alzheimer’s Society come in and … to a lesser extent … us on this forum. )

Kerry, you sound exhausted which is hardly surprising. Like you, when caring for my mum, it was only my job and this Forum which kept me sane.

Do you have the same GP as mum? If not, you will need to contact both. Contact your GP and explain the situation, stress that you can no longer cope and need urgent respite / nursing care for mum. Enlist the GP’s help to contact Social Services. Also contact her GP, they may quote patient confidentiality but you can always write to them and request an urgent visit to see what can be done from that side too.

If any energy left, I would then phone Social Services when you feel at the end of your tether, tell them that you cannot and will not continue to care and request emergency respite. I did this when totally frazzled and although I sobbed down the phone and screamed (most unlike me!), it did make them move. Unfortunately you need to shout loudest just when you are at your most fragile.

Have you also contacted Macmillan and/or Marie Curie to see if any visits are possible or any help at all?

Sending a huge ((Hug)), Anne x

MacMillans ?

Marie Curie ?

Both sites have very extensive pages on information and support.

( NHS / social care … as can be seen , information is split over many organisations … will continue to be so UNLESS the forthcoming Green Paper recommends
recombining both … under one roof … thus , eventually , producing an integrated service … worthy of modern day needs. )

Hey Kerry! Sorry to hear about what you’re going through. I feel like everyone up here offered some great advice on how to deal with this sensitive situation. Does your mum get private carers? What sort of care does she receive?
I do agree that you need to do some research, definitely get in touch with your mother’s GP and decide on the best course of action. Carersuk has a lot of useful resources to help you get the ball rolling. There are a lot of useful resources online:

Thank you all for your advice, lots going on since I last posted.

My mum went for a scan in January and was supposed to see her oncologist in January also. I had noticed that she seemed to be deteriorating constant back ache, hearing difficulties…as in practically disappeared overnight, her breast was bleeding as the tumour was breaking through. She was eventually given an appointment in March, the cancer has spread further including to her lungs. Further tumours in her lymph nodes and the breast tumour had grown. The oncologist decided that further treatment was futile and so no more injections etc,

I messaged my mums social worker, mental health nurse etc to enquire about her McMillan nurse. She had been assigned one but as carers were going in and she was getting agitated it was decided that another face would be too much. Anyway it transpires that my mums social worker is no longer her social worker, she didn’t reply to my email, I wasn’t told she wasn’t my mums social worker or that my mum no longer had one!

On the Saturday before Mother’s Day, Coronavirus weekend, I ordered an afternoon tea to be delivered to my mums house. Whilst there I noticed that no carers came. I was there for four hours from 10:30. I called my mum at seven and asked if the carers had been, she said no…now this doesn’t necessarily mean that no one has been, just that she hadn’t remembered. So I called the care agency they said she had had three visits one at 12, one at 2 and then again at 5. Except I had been there durin* two of those times and no one had been. I went across to my mums to find out that the log book had been filled in for 11 am and 4:30. To cut a very long story short I have written numerous emails, spoken to nurses, doctors, social workers a gazillion times about the carers, my mum, the state of her house, the fact that the carers are only staying for five minutes etc.

The mental health nurse went to assess her on Wednesday as two district nurses had both raised concerns about safeguarding and her mood. Of course when the mental health nurse went she answered all her questions and the mental health nurse felt that my mum did not lack capacity.
I phone my mum every day. On four consecutive days this week I have called to have my mum scream down the phone at me that she’s tired and wants to be left alone. This is so out of character. I’m so sick of not being listened to, my opinion seems to count for nothing.

I am going tomorrow to meet with the McMillan nurse and she’s mentioned applying for the continuing health care plan. Any advice will be gratefully received. I honestly don’t think my mum is safe to be at home on her own, she’s so depressed, but turns it off when professionals come.

What is the GP doing? He should arrange FAST TRACK Continuing Healthcare. The cancer may be affecting her mental state. Record mum screaming down the phone or any other behaviour. How much longer does mum have?

I don’t know, I’ve asked but everyone seems reluctant to tell me. When she had the original diagnosis they said a year without treatment, at which point it was in her breast, lymph nodes and sternum. It’s now obviously spread further and the treatment has stopped. I asked her McMillan nurse and she said she wouldn’t want to speculate?

I send weekly emails to social services, the psychiatric nurse and McMillan just so there is a paper trail. I went to see my mum yesterday when the McMillan nurse was there. The McMillan nurse asked my mum if she would consider going into a home, my mum just kept saying, she, meaning me, does everything for me, if I ask she’ll do it for me. She said she’d only have me wash her etc. I’m exhausted, I work in a school, have two kids and during normal times my husband would be away. I don’t want this responsibility. She won’t let the carers do anything for her. I have issues with my back also which would make it difficult for me to get her in the shower. The McMillan nurse said what can we do to support you. I just said I don’t know. I feel like I’m literally being expected to do everything. I’d rather she was in a home as I’m spending my evenings worrying what she’s doing, has she locked the door etc.

You need to be really honest with mum and the MacMillan that there is a LIMIT to what you can do, given all your other responsibilities.
Get the nurse’s contact details and speak to her, and then get her to sort out Fast Track NHS Continuing Healthcare for mum.
No one would tell me how long dad had, when he had prostate cancer. In the end I rang a cancer helpline, now amalgamated with MacMillan. They said from his symptoms he probably had 6 months, they were just 2 weeks out! I then went back to his GP and demanded for him to be more open with me, as my mum was very disabled and I’d be caring for her. He said whilst he couldn’t speak about dad specifically, he could talk generally about patients with this condition.
Then ask your own doctor to recommend a counsellor for you, it helped me hugely when I was ill through being constantly tugged between competing demands on me.


What may not assist are the provisions of the new Coronavirus Act.

There was a good item on Radio 4 Today Programme this morning about Dementia patients in the current situation.

Probably available on BBC Sounds or iPlayer.

Yesterday morning at 1 a.m my lovely mum passed away from coronavirus. I’m totally heartbroken, riddled with guilt, wanting to hold her and talk to her and I don’t know what to do.
I went to see my mum on Sunday, I found her slumped on the bed, her sheets saturated with urine, struggling for breath. She just said toilet to me, so I managed to get her on her walking frame and get her to the loo, she called me from the toilet because she couldn’t get up and I said I need you to sit in the chair mum so I can change your bed and she just slumped on the bed and couldn’t get up. I called an ambulance which was there in minutes and they thought sh3 had pneumonia, the last thing my mum said was cold. The hospital rang within an hour to say that she was extremely ill and that they didn’t think she’d make it, they said if it seemed that she was slipping away they’d call me. As it happened she went very quickly. I was called at 1am to be told she’d gone but that I could go and see her, as she was on the covid ward I had to wear gloves, apron face mask etc. When I went to see my dad despite the tube in his mouth he looked like he was sleeping an£ it comforted me to know that he was at peace, my mum looked haunted. The nurse told me that her last words were thank you to the nurse as she took the cannula out of her arm. Xxx From the phone call at 1a.m until 4 am this morning* I have cried none stop, then again this morning I’m racked with guilt that I didn’t do enough and regardless of what everyone says I know it’s true. The care company enlisted by the council were dire, there were times that I went when she’d been given nothin* to eat or drink, not been given meds because my mum told them she’d had them, when I went on Sunday less than an hour after the carer had been the carer had written in her log book all well on leaving. I’m appalled by their negligence but even more appalled with myself for not fighting harder. My poor mum went into that ambulance alone, in a urine soaked dressing gown, and died alone too and I can’t rectify it now. I don’t know what to do.

Hello Kerry

I’m so sorry to hear that your mum passed away a couple of days ago. It sounds like you’ve had a really tough time recently and it’s understandable that you are feeling so upset. Here are a few suggestions which I hope will be of help:

You may find it helpful to call the Samaritans on 116123 and talk through how you are feeling. They are open 24 hours a day every day of the year.

Carers UK also have a small group of experienced Caring Caller volunteers who are making calls to our members during the coronavirus crisis to ask how they are feeling and signpost them to appropriate support. If you would like to receive a call from one of these volunteers (they are all current or former carers) please post in this topic or send an email to

The following page on Carers UK’s website also provides some practical guidance for carers following a bereavement.

We wish you well in the coming days and weeks