Carers speak out!

Gps

I wish GPswould understand that if the person we care for is underthe care of a hospital specialist, that A)that specialist will not deal with every medical issue that the patient has e.g. If there is a problem with his bladder meds neuro won't be able to help source them. B) if I or our kids are unwell, we need to be seen ASAP so we can keep supporting hubby with PD C)having a policy of not seeing a patient who is under the care of a hospital specialist is not helpful & costs the NHS more!

Lack of joined up care

My mum cares for her long term elderly partner. At 87, in the last 10 yrs or so he's had cancer, a haemorrhagic stroke, a heart attack and now he's been diagnosed with dementia, possibly at a medium to advanced stage. The GP stopped him driving, he lives a fair walking distance from the GP with no buses. The GP and hospital services off telephone or on line appointments despite knowing he cant hear. He goes for hospital appointments and they recommend follow on GP actions, which dont happen.

Dumped back at home

The lovely 101 year old gentleman I help look after was discharged from 2 months in hospital on Saturday. In distress he rang his lifeline and they called me. I found him in his home sitting on the sofa surrounded by his bags. No one had made him a cup of tea, sorted his belongings or made sure he was ok. They just dumped him there. And now we find he wasn't sent home with enough catheter bags. I've had to chase up with the GP. There's little basic compassion and care in the NHS now.

A struggle

To all those out there who are sharing my challenges. My 91 Yr old mum lives on her own in the next road with vascular and mixed dementia. Navigation of the whole process of getting help has been challenging. 42 weeks for the memory to do an assessment to gain a formal diagnosis. 3 months for the social to assess to go into a home for her own safety. Now we wait for the process to gather info to help with funding. In the meantime it's keeping a confued lady safe and calm. Itsheartbraking

Retired

It's just as well l no longer go to work as my wife could not cope on her own. I think the government has tin ears as far as carers are concerned. I dread to think what the cost to the economy would be without us.

Carers need care

After caring for my wife through disability, brain surgery and advancing dementia there was an inevitable sense of relief when she moved into care. She is close by and I try to visit her every two days. Yet two years later,on days when I have no commitments, no visitors, or no phone calls a sense of loneliness and sadness is very real. This is especially true when there has been little response during the hour I have spent with my wife. It needs to be understood that Carers also need care.

On my own now.

I'm a carer, get carers allowance, care for autistic non verbal son, what I find overwhelming is the amount of paperwork, now he's in his teens, plus housework and other stuff has to be done when he's at school, so can pay full attention when he's in, getting time for me is sometimes a prob too. We have respite once a fortnight for two hrs, sometimes it would be nice to just have someone there for help or advice with the paper work alone, specially now I am on my own coping since hubby passed.

Not getting any financial support with caring because I work.

Its ridiculous that I don't qualify for any financial support with caring for my elderly mother because I work. There are 168 hours in a week and because I work 30 of them I am not entitled to anything. Does she not need care for the remaining 138 hours????

I care

It is important we raise the importance of what carers provide. Some care for duty, some care out of love. In the end we all may provide unpaid care. So it is important to say "I Care"

Caring for a loved one around a full time job

I care for my mum and work full time. It’s hard work and I have no support from any other services. Sometimes I just want to breakdown but I can’t because my mums dementia is deteriorating quickly. I’m working towards keeping my mums wishes to staying at home. I’m a dementia champion in a care home so my days are long, challenging but very rewarding. Sometimes I just need to know I am doing a good job with everything. There is very little support out there once loved ones are diagnosed

Breakdown

I am recovering from Carers Breakdown. I am having a rest at a retreat house currently. It has been so traumatic and as a Carers Ambassador I never felt this could happen to me. My husband is now in a care home. I could tell my story of caring over the past 10 years but apart from our personal stories some long held views need to change I think. Talk about your caring role. Care as long as you can. When you cannot accept it. When you are no longer coping say so. You are not to blame.

Incontinence

Don't give in to the powers that be making our lives harder than it needs to be . There isn't enough room here but in short my daughter will not longer get the products that work because said powers have decided to change them , no consultation. I will fight this like I did in the early 90s when they decided to limit the number of products the disabled and elderly could have.

Caring for my mother

I’ve been an unpaid carer for my mother for 4 years now, my life has changed in so many ways. I still work but can only do part time because mum has become very needy . She has Parkinson’s with lewys body , is 85 and lives near me which can be stressful. Financially giving up full time work has hit us as a family hard. I have a partner, 3 grown up sons and two grandchildren. It’s mentally draining trying to support everyone. My sister died so I’m the only person who can be there.

Long term dementia care

My husband has recently been diagnosed with Vascular Dementia after a stroke in June last year. Care is a big worry. We are self funding but this won't last long. If there was at least some free care for dementia sufferers this would be one less thing to worry about. I am already exhausted both mentally and physically.

Losing my own life as caring needs grow

As my partner becomes less physically able, blind and his mental capacity reduces, I find myself less able to fullfil my own needs mentally physically or emotionally. I am exhausted and very low in mood. I get help and support from the local services but feel at a loss as to how to maintain my own self.

Constant stress and trauma

Mum's blind but was fine until she had a medical accident in 2018. She had memory loss and severe anxiety. I automatically became her carer. Despite seeking help/advice from agencies, no help came. In 2021, Mum went into a care home. She was sedated into a coma; all her jewellery was stolen. I then arranged 24-h care in her own home; the carers couldn't cope; it was lots of work for me. Mum's been back in a care home for 3 months, she's had regular injuries, and been attacked twice. Hellish.

Mum in hospital (2)

I had the mental health team and occupational therapist ring me thinking mum had been discharged when she hadn't. This added more stresses cos' it made me wonder if she'd been discharged without me being told. She was discharged with the wrong care plan & we heard nothing - I felt really let down and worry about her going in again. I think everyone should be involved in the treatment & discharge plans - patient, clinician and carer. As a young carer it worries us if we don't know what's going on

Mum in hospital

When mum was in hospital, no-one was listening to me. She was having medication changes that wasn't being communicated to her so that was stressing her out - I couldn't get anything out of the hospital because they said I wasn't next of kin. She called me at midnight on a school-night in floods of tears because no-one was listening to her - I lost all faith in the hospital. No matter how many times I said I was the main carer, nothing happened.

My caring role

I love looking after my mum. And I have been caring for her from the age of 3 years old. I find at times it gets difficult as I’d like to have my own time. My caring role includes supporting mum when having a seizure, cooking, cleaning and anything else she needs support with.

Hospital frustration

The person I care for is in hospital and waited an hour and a quarter to be supported to go to the toilet, just after having their catheter out after surgery. If I don't know that she is getting the care she needs, this impacts on what I am able to do. So frustrating!

Do they care

My experience of trying to get funding for my seriously unwell wife was horrendous. When asked to give my opinions to the government team looking at a better system, I was pleased to do so. In the event the proposal that emerged was flawed. And why am I not surprised it would appear it's implementation will be put back anyway ? Do they care ?

I'd rather get in trouble than ask Mum or Dad for money I know they haven't got

Mum isn't able to work, and I know mum and dad are worrying about money at the moment. I've been getting detentions at school because I haven't got the equipment I need. I'd rather get in trouble than ask Mum or Dad for money I know they don't have

Not getting any support

Sadly, I have to work full time (no other option), I have one child diagnosed ASD, the other is currently being assessed for ASD and has been diagnosed with a personality disorder. This child is currently under CAMHS for her mental health as she is suicidal and has attempted suicide and been hospitalised in the past. I feel completely unsupported.

parent carer view

I am a parent carer for my son. Things I would like changing to make our lives easier. Firstly, stop using external companies instead of keeping them in house eg wheelchair service and equipment service. They are both not fit for purpose and need their contracts cancelling. Secondly EHC plans are annual plans, but the council are taking almost a year to say they agree with them. Thirdly, there needs to be a community paediatric resp physio. The team of professionals we have are great.

My child is to disabled for help

My son has a unique medical need he is the only child to have survived. This is something to be celebrated. In practice means he is not allowed to attend school, we cannot have respite (even though he has been assessed as requiring this) we have to rely on charities to help and support us because his needs are to unique for any statutory service. It feels like falling down a well and no one can help us get out. I understand that no one expected him to live but he has deserves to be supported

Dementia Care

Much more affordable support and social care for dementia sufferers and their carers. Dementia is a physical health problem just like a heart problem, and as such care should be free under the NHS until death.

relentlessness

The difficult part of being a carer is the relentlessness of it. If I'm having a bad day or feel unwell, nobody else makes the dinner or does the cleaning, and I can't have a 'night off' or even an early night (unless my husband wants one too) as you can guarantee it will be a toiletting or otherwise medically complicated night just when I could really do with a rest! Other couples share everyday chores and responsibilities; for me it's just me, all the time.

Blue Badges

I have had a blue badge parking permit for 3 years, which has proved invaluable in enabling me to take my husband to 'help' with my weekly shop and also to visit National Trust properties, garden centres and country parks etc. His walking is not great but if we are able to park close to our destination it means we can have a short walk and enjoy being out in the fresh air. I have just had to reapply after 3 years and Cambridgeshire County Council have just turned down the application.

Vaccination issue - part 2

The vaccination Centre told me they had sent away a few other carers today. I care for an 81 year old father, a 50 year old full care disabled adult with no-one to step in if I get ill so we all remain isolated to avoid infection. Just because i am not caring for an immune suppressed person, (she had died in pandemic my mum) I find the difference hard to balance. My brother is house bound. Surely we must stay well to carry on looking after our loved ones. ...

Vaccination issue - part 1

I had booked in for an autumn booster as a full time live in unpaid carer after it stated we could book now as they moved to the over 65 group, pregnant, carers group. To my shock and embarrassment they then told me once there that I didn't qualify. I had to look after someone who is immune suppressed. This isn't what it states on the NHS page. I came away in tears. I phoned 119 today who told me I should have had it. I was entitled. They spoke to a senior manager to confirm too. ...

Forgotten army

We as carers work exceptionally hard some 24/7 For very little money some say 30 to 40 pence a hour and at the same time save the country millions none of this is explained we often are told we don't work so are not entitled to anything but we work harder than most I would say And yet we are excluded from saving accounts that pay extra for saving we are punished if we save to much and are constantly trying to find ways to make ends meet all the time the cared for are forgotten

Journies by taxi.

The difficulties faced by carers when trying to book a taxi to take a wheel chair bound patient for a hospital appointment must be well known. In Cambridge I am regularly told the taxi may be 45-60 minutes later than the requested time. This can add up to 2 hours to the time taken to attend the appointment. Why are wheel chair dependant patients treated as second class citizens?

I't's tough to be a carer

I have been a carer now for 2 years looking after my mum who has Progressive Supranuclar Palsy. It has been so tough and very tiering, All too often I can have 15 -16 hour day as I hold down a full time job too, you constantly worry if they are ok, Very rarely do you get asked how you are and if you do talk to people about it, unless you have been in that situation they don't get what it's like to be a carer. We do get left behind and seem forgotten, we do this as we care about our loved ones.

Lack of dementia training

As a carer for my Mum who has mixed dementia I am constantly frustrated by the lack of training of health professionals in dealing with patients with dementia and the lack of joined up care eg: - A GP saying ‘we don’t deal with dementia here’ - when discussing whether Mum’s LBD could be a factor in the problems she was having - 4 different GPs prescribing 3 different meds and 1 clinic referral in space of one week - consultant telling her she’s repeating herself (she has dementia!)

DOOM & GLOOM!!!

There is nothing good to say! Heres a few words to describe the situation! Depressing, worrying,resentful,tired, frustration, alone,restricting,hate,spite,guilt,upset,fedup,dread, impending doom! As you can see there is nothing good about being in a carers situation. Sorry about this, i could put more but i dont have the time or enthusiasm!

24/7 carer

I am a full time 24/7 carer of my Mum. £69.70 carers allowance is so difficult to make ends meet. I get so upset when people including my brother and mums sisters and brothers say you have it easy not working sitting at home all day. If only they would understand how hard work it is being a carer all day, all night having everything to do for the person you care for. Lack of sleep on the go all day never being able to relax. It would be nice if we were appreciated once and a while.

Money

There are government backed bank accounts that can help budget and will give you 50% bonus if your on universal credit but not if your a carer on universal credit apparently the money we get is only to live on and not save. As a single carer for 29 years we are going back at a alarming pace can't actually see a future without stress and mental health issues for all carers we save the nation millions and yet we get no recognition and very limited financial support

Carers benefit entitlement

You should make it that more than one person can be treated as a carer for the same disabled person. In my situation, I'm a sibling carer and my Mum's a parent carer and neither of us work. I'm worried about moving to universal credit from ESA (for mental health reasons) as I may have to explain why I can't work but my Mum already has the carer entitlement. Not all carer teams are couples

Paying to care

I care for my 91 year old mother who, if she was to have a Care Act Assessment, would be entitled to four visits a day at a minimal. This would cost the local Authority around 30 thousand pounds a year. I have had to semi retire early and so lost money. Whilst I can claim Carers Allowance I was never told it was a taxable benefit. I now have had a demand from HMR of nearly 1000 pounds. Government departments should talk to each other to help ease the burden of Family Carers and not tax Carers.

Off the radar

When my husband moved from Adult Social Care to NHS Continuing Health Care I became a non-person overnight. I've been fighting for 3 years to get help with carer's breaks/ assessment and perhaps have made a little progress over the last few weeks. I'm sick of banging my head on the brick wall of unprofessional attitudes and downright lies. The burden is immense and I'm angry at being dismissed as unimportant while I'm saving the country about £2,000 per week in care home fees.

Caring for Stroke victim

I am a full time carer for my wife, Pauline, who suffered a stroke some thee years ago and it has left her just about immobile. Recently, Social Services gave me two weeks respite, sending Pauline to Rheola Care Home. I’m very thankful for that break it did me the world of good. We’ve been married 60 years last October and both just 80. Thank you Social Services.

Recent messages

I have read recent messages put up, and the common theme its paid /unpaid, carers allowance or no allowance, there is an edge of bitterness in the responses and why not, none of us signed up for the job we do as carers, most of us are married to our charge, or have a sense of duty to our parents. Either way it's a matter of conscience and love , none of us would strike for better conditions or wages, but we would welcome more than the lip service paid to our endeavours, your carers plan stinks.

Tough times

I’ve been the sole carer for my wife since 2011 and like all of us there have been good times and bad times. There doesn’t seem to be many good times anymore now. I’ve always tried to earn a living but that’s more difficult now and am still waiting for carers allowance - I applied in January! House just about to go on the market to release some equity as no income for 7 months. No carers assessment, very little support from any carers organisation, just more empty words.

A life sentence

I am a carer at night I did not choose this I was completely forced into this role. If I need a break it gets me into debt financially. I get to physically punching point. A caring role is life-destroying and as bad as a life sentence in prison. So there is no one that can help social care are all about doing as little as possible for the patient who usually are at the end of life and have no life at all that’s why so many choose suicide if they can manage to do this.

Confined to barracks

No public toilets offer wall-attached toilets at a height that doesn’t involve much pushing up and causing my 84-year old disabled wife pain. We feel that we are confined to barracks, and only ever manage to get out once a fortnight to do the shopping, and even then, we make sure we don't stay out long. My wife needs to go to the toilet at least once every hour, which makes long excursions almost impossible for us to undertake. It makes being disabled a punishment.

A carer speaking out

I care for my disabled mother who has unfairly fallen through the net of support and care services. I need to work full time to pay shared ownership mortgage -rent is exceptionally high and unable to sell to move closer. I travel by train to deliver care. I am unable to access support as I do not live in same area as mum. It’s isolating and stressful. Government need recognise and help carers. Help with finances, house moves, travel, support groups access, flexible working and special leave.

Indignity pay - carer's allowance is insultingly low

My only income is carer's allowance of £69.70 per week and for everything else I sponge off my family. It's so undignified. I care full time. In social situations other people class me as "not working" or a kept woman. It's shameful.

Not much improvement for carers since as a DN I became involved when Crossroads started !

Today as an older person I help and support friends ,family to find out how to get help ,so many of my generation expect the doctor should tell them what’s available ,but they don’t , are unhappy to involve Social Services and are unaware of all the changes in community nursing

times have changed and so has unpaid care!

We're not in the 1950's any more! many people juggle caring with work, we don't live 'round the corner' from our loved ones, caring is hard physically and mentally, not just popping in for a cuppa and a chat. We get isolated, depressed, ill, out of touch with friends and family, stressed from arguing with authorities who don't understand and have no resources. We lose our quality of life as much as the person we care for. We become carers in an instant, it doesnt end until our loved one dies

All day every day

Unpaid carers work 24/7/365. There's no sick pay, union, workers rights, clocking off or holiday days for us. Our loved ones rely on us to be there for them and more often than not during the pandemic we've been asked to step up and take on even caring. Many of us have given up our careers to care full time and gone from earning good money to being paid a weekly pittance known as Carers Allowance. How many MP's would take on the levels of responsibility we have for such a small amount of money?

Is the NHS falling apart?

I have lost faith in much of the NHS. In particular that there are enough staff and resources to deal with all the issues of health care that people need. I feel that waiting times and treatments are so delayed now, that people are really suffering. In some areas like mental health and dentistry the NHS seems almost non existent. I also feel that hospital staff are glad to get rid of patients as quickly as they can. Social services seem unable to cope with the fall out.

Complain!

We are being asked to work as a member of a team alongside professionals, nurses, doctors and carers. PLEASE, if this is the case, ensure that professionals respect the information Carers offer. When things go wrong we must learn how to complain. I am not always good at this. We need to record issues and ask staff to record them too. I often feel there is a barrier between me and the professionals. They do not see me as a member of a team at all. It becomes very frustrating.

Hospital records

Hosptial and GP records and not always comprehensive or up to date and of course some peoples records are very complex. It would be good to share things that of are of particular concern with staff when their loved one first goes onto a ward. For example if their memory is poor they simply may not retain information given. They may forget previous proceedures, they may make up events, There may be digestive or toiletting problems.

Entitlement to continuing care and other benefits

It would be very good to have an expert talk to us about benefits of all kinds. Someone who knows the ins and outs of claiming and who could answer our questions. I am older now and find forms more difficult than I used to and just a little information and encouragement would help me to know if I am claiming what I can. I know my cared for may soon be completely immobile. I would like to know about Continuring Care, and how we make the difficult descions about moving considering a care home.

Respite care

I would be interested to know if others have problems receiving respite. I have applied several weeks ago but have heard nothing more. Regular respite is necessary for the mental and physical health of the Carer.

Care companies

My Carers are are by an large very good. Kind, caring and efficient but we never know when they will arrive. Of course there are unknown problems that occur and they simply cannot be helped but our Carers arrive anytime between 7.30 am and 10.00. This makes for a very disrupted day and morning appointments become difficult to manage. We also do not have regular Carers but for some people a person who knows the patient can spot changes that even family miss.

Joioned up care

When discharge takes place the Discharge Team should be able to check that everything they have put into place is actually happening. If there is little or no contact post discharge Carers can be left in the lurch with no one to talk to. Yes, we may complain, but dealing with poor plans, poor communictions can be disasterous for Carers to cope with.

Carers rights

Carers need to be regularly asked if they are coping with their situation. It should never be the case that professionals assume that Carers can and will deal with all the aspects of careing required. When discharges take place the first question asked could be 'and how will you as a Carer cope with this new situation'. Are you aware you have rights? It is not a crime to reach a point where caring for a loved one is no longer feasible.

Discharge to Assess

Complex discharges including those with dementia are not being dealt with well.Carers are not always listened to, or worse simply ignored. Discharge teams base their assessment on what they can observe in hospital and sometimes this is very foolish. Demenita patients will not always behave in hospital situations as they do when they are in their homes. They may convince hospital staff they are more capable than they are resulting in dangerous discharges.

Dementia carers support in Cambridgeshire

The only support provided for dementia carers by NHS in Cambridgeshire has now been withdrawn from all carers who are not in receipt of care from Social Services or the Mental Health Unit of Cambridgeshire and Peterborough NHsTrust. Alzheimer’s Society have also closed their group meetings so there is now no dementia support in the area for those coping on their own.

The government seems to have forgotten about carers

It has been very difficult to manage as a carer now that restrictions have been lifted. My cared for person has complete kidney failure as well as other health conditions. She caught Covid and had to spend eight days in hospital from Easter Sunday and she has just been admitted to hospital suffering from unexplained vomiting and severe muscle weakness. Thank goodness that NHS staff who are working under enormous pressure were able to look after her so she was able to recover and be discharged.

Uncaring Conservative Government

I find it very upsetting how this present government do not help us enough financially, considering the millions we save the government. It makes no sense to me, we're in such a rich country. Obviously this government don't give a dam, they party away while we all struggle. My partner struggles on a daily basis with Borderline Personality Disorder, without me she simply would not be alive.

Government have forgotten about carer's

I believe that the government have forgotten about unpaid carer's I have been looking after my wife that suffers with Parkinson and incontinence due to her Parkinson's also she suffers from COPD I'm also disabled with crumbling spine prostate cancer COPD severe arthritis and find it hard to walk and bend down so I find it very hard to clean up after my wife has a accident. I have been trying to claim pension credit but the government have not responded yet

Dealing with the medical profession.....part 3

What didn’t help was that, as this was seen to be a result of her mental health condition, she was told to pull herself together and get on with it. Easier said than done! It was clear the hospital visits were having a negative effect on her health and Sheila asked me not to take her again, so from that point on and apart from the local GP, I kept caring for Sheila with no outside support whatsoever.

Dealing with the medical profession.....part 2

The result of this was that Sheila became too scared to go, which impacted on her physical condition, this was when respiratory issues began to emerge initially being diagnosed as asthma, but about right years later the diagnosis was changed to COPD. This meant that she was then placed on oxygen 24/7 and that’s how it stayed for the rest of her life.

Dealing with the medical profession - part 1

My wife, Sheila passed away in 2016. For the first 12 years I got little meaningful support from the medical profession, Sheila always wanted me to speak for her as she was frightened and unable to talk for herself. However, the doctors would not allow that to happen and if I tried to speak up, they would tell me to be quiet or leave the room. To be continued....

Into the Unknown

It was only as I became hopelessly exposed to the emotional, financial and physical challenges of looking after my wife that I accepted I was a Carer. I needed support in every respect, yet the process for achieving any financial support, for example,is at least as draining as caring itself, and the latest proposals do not address this. Things must change.

The government seem to have forgotten about carers (Cont'd)

...for a family member and the fact that if for example, my son was in care, how much more the government would have to spend-it would really help if the government allowed the carers allowance not be affected by any other benefit you receive due to circumstances, which are not your fault.

The government seem to have forgotten about carers

…especially those whom give up their career to care for their severely disabled child or adult and are on their own, so have to rely on universal credit and carers allowance-the carers allowance is counted as income and taken off the little you get in universal credit. The government always talk about getting people back to work and think those claiming benefits do so as they don't want to work, but never do they mention those people whom give up a job they loved and made sacrifices to care