Maria and Pauline at an event

‘Better quality social care shouldn't be so unaffordable’ - Maria's story

Maria’s mum Pauline has been let down by the social care system. Whether accessing support or finding care to meet her needs, the cost has gone up and the quality has decreased. But enough is enough. In her local borough and now on a national stage, Maria is standing up to #CureTheCareSystem.

My mum, Pauline, epitomises the phrases ‘wouldn’t hurt a fly’, or ‘doesn’t have a bad bone in her body’. She hates conflict and has a heart of gold. On top of this, she has a passion for animals, with horses sitting top of her list, and just below are rough collies who she has a sweet spot for. 

These are the things that make my mum who she is. But since her diagnosis of Alzheimer’s disease, they’ve become lost and muffled as we have battled the care system.

Battling for support

Mum lives in local authority sheltered accommodation, but from day one it has been a struggle to get her the care she needs. Mum was initially denied support by the local authority based on a 2-hour phone call with Mum, disregarding mine and the doctor’s opinions.

After four months we finally managed to access support. But soon after, we realised we were only at the beginning.

Pauline petting a Rough Collie

Pauline petting a rough collie

Earlier this year Mum was left without care or a hot meal for over 2 months. After raising a safeguarding alert, we let go of the care agency, as they were unfit to be responsible for Mum. But agency after agency, the issues have been much the same.

We are now just over six weeks into our third care contract in 8 months with a company deemed outstanding. However, paying more for better quality care, means we are unable to afford carers coming in as often. While the care is good, there is a lack of consistency in the hours they can provide. One week they are here, the next week I hear no word. With a lack of familiar faces, Mum is increasingly opposed to accepting support.

‘I know that the stress of care and the system is accelerating mum’s decline’

In my eyes the jury is still out as to whether even ‘outstanding’ care is really meeting the needs to people affected by dementia and their families.

Raising the standard for quality care

When I heard the Alzheimer’s Society's call to #CureTheCareSystem it felt like Mum’s and my experience had been heard.

I believe good care has minimum standards, not only based on the training of carers, and affordability, but humility too. Care shouldn’t be about limited time, but should be allowing those with dementia to do what matters most to them, with the people who matter most, for as long as possible. 

Despite my best efforts, Mum’s social life is limited, and with that, we lose a huge part of her personality. She has always bubbled with positivity and laughter. She loves playing cards, and doing quizzes with others. Now, her dementia means she can’t initiate these activities, and without support and resources, neither can I. 

Pauline smiling in a cafe

Pauline enjoyed a busy social life before her dementia progressed

Like so many, our roles are now reversed. I dearly miss our chats and time spent together. Facing the challenges of the social care system on top of this has impacted my own mental health. It doesn’t and shouldn’t have to be this way.

Our dementia advisers are here for you.

A system that works for everyone

I need to help bring about changes for all of those who do not have someone to fight their corner. I want to be their voice! That is why I am joining Alzheimer’s Society at this year’s political party conferences.

Since Mum’s diagnosis I have joined forces with others as part of the Dementia Friendly London People’s Panel, challenging our capital to support those affected by dementia. However, while you may think all our experiences are similar, they differ vastly. We all see a care system in need of change, but borough to borough, county to county, access to care and support is different. 

‘The care system is a postcode lottery. That is why all our voices and experiences matter.’

I want MPs and decision makers to not just hear the stories and experiences of the current social care system, but to really listen, and take heed. We’re not just talking about my mum and me, but also the vast and unfair experiences of many others.

With every call Alzheimer’s Society makes to Government, they rely on us to raise awareness of their calls with the right people, at the right time. Now, I am asking you to help guarantee as many MPs as possible visit me at the Alzheimer’s Society stand at this year’s party conferences, so we can make an even stronger case for government to cure the care system now. 

Can you help us Cure the Care System?

Together, we can win the attention of MPs at this year's party conferences. 
Invite your MP to visit our conference stand and together we can #CureTheCareSystem.

Yes, I'll invite my MP
Think this page could be useful to someone? Share it:
Categories

8 comments

Add a comment

It is clear the Care System in UK is broken with not enough workers employed & confusion as to who is responsible for providing the care . Our Government have promised huge amounts of money & extra tax is being imposed via the National Insurance scheme. However this doesn't stop our NHS passing the buck to Local Authorities if they can!
If people have a "Primary Health Need" & the situation is "complex" then NHS are responsible for paying for the care needs via their CHC
( Continuing Health Care ) system. These benefits are not taxed or self funded like Social Care provided via Local Authorities. Alzheimer's Disease is a "Primary Health Need" along with lots of other health issues. CHC ideally will fund care in ones own home provided someone else lives there as a Primary Carer. If health needs can no longer be managed then CHC will pay the costs of a Nursing Home. Given the huge amount of people in our country who should be eligible for CHC its my opinion NHS ration this benefit & if refused care initially there is an Appeal process allowed. I would recommend professional help given the importance your loved ones are looked after with the best care package that can be achieved.

Following the death of my Wife Pauline in 2016 I launched a website to help people prepare an application for CHC. To date over 20000 people have visited the site & I hope many have been helped. Details are at https://continuinghealthcare.wordpress.com/
Best wishes Peter Garside.

This is helpful
0

Hi Peter,

Great to hear from you again. We hope you're well.

Getting a diagnosis of any type of dementia unfortunately does not carry automatic eligibility for CHC. As much as we would like it to be, eligibility for CHC funding is never ’condition specific’. It relies on identifying the person’s needs in line with the criteria laid out by the Department of Health.

At Alzheimer’s Society, we suggest that the best way for people to access NHS Continuing Healthcare (CHC) if they think they are eligible or they represent someone who they think is eligible, is to inform themselves fully of the CHC criteria before the process starts.

We recommend visiting our page on 'Tips on preparing your case for NHS continuing healthcare' (https://www.alzheimers.org.uk/get-support/help-dementia-care/nhs-contin…) and downloading our free booklet for further information.

Best wishes,

Alzheimer's Society blog team

This is helpful
0

My husband is now in a care home that is difficult for me to access and phoning there is a nightmare as after a long wait my call is often cut off and not able to speak with my husband.
It happened like this, my husband who has Parkinson's, insulin related diabetes, brain aneurysm, Lewy Bodies dementia, fibrosis of the lungs, scoliosis of spine and Genu Varum.
Was admitted to hospital because he had great difficulties in controlling his diabetes and would not cooperate when I tried helping him, so GP had him admitted to hospital in October 2020, where it was found that after being there for 10 days the ward was closed because of patients having COV 19 which he contracted whilst in this ward, and he was having difficulties breathing, and I was warned he may not live, but he came through but with scared lungs and difficulties breathing and doctor in ward at discharge time stated he would need to be assisted at all times with oxygen and said he would be better placed in a cottage type hospital setting to evaluate how he would cope as he also had increased memory difficulties following
covid, this all happened one week before Christmas.
Because of COV 19 and the possibility of myself and two sons
at home, catching covid from him and wanting to stay safe, we delayed his home coming until we received our immunizations.
When Robert returned home, he first was cooperative and eat a healthy, good-sized diet, but this did not last for long, and he was having increased difficulties remembering to drink and eat and had to constantly be encouraged to participate with this.
Robert also had difficulties in participating in keeping clean both with toileting and bathing although encouraged to do so with assisted
help, he would get aggressive and not co-operate.
Aster nearly a month at home, he was readmitted to hospital because he had an infection and then returned to the care home
and now we expected to find £850 per week for his care.

his glucose

This is helpful
0

My husband's in a nursing home because of covid I still only get to see him for about half an hour on a Wednesday.I like to think he still knows me but who knows. I take anxiety pills and sleeping pills but I still get upset.Evetually I'll have to do something about our house.Most of the time I feel nobody cares.

This is helpful
0

Hi Eileen,

We're very sorry to hear this - it sounds like you are going through such a difficult time.

Please know that we are here to provide you with support. We'd strongly recommend calling our Dementia Connect support line on 0333 150 3456. You can speak with one of our dementia advisers who will listen to you, and offer support and advice specific to your situation. More information about the support line, including opening times, can be found here: https://www.alzheimers.org.uk/dementia-connect-support-line

You might also find it helpful to get support, information and advice from others who have been, or are going through, similar situations in our online community, Talking Point. You can browse through others' experiences, or create a free account here: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-on…

But please do call the support line on 0333 150 3456 for help or when you need someone to talk to, Eileen. You are not alone.

Alzheimer's Society blog team

This is helpful
0

Home care ?????? I don’t know how they can justify calling 30 minuet slots “ care” in your own hone. Like many other sufferers mums local authority deemed it ok to send a different person to almost every visit they made. When they had someone that is! Youngsters fresh out of school to senior citizens mum had them all! It left her more confused, angry and vulnerable. In fact she stopped opening the door. Tho them in protest. Carers turned up with no information about mum or her requirements. It was hopeless. Then followed private agencies, and despite hefty charges they were no better.
Honestly I could write a book and stun an audience to silence.
Now mum has had to go into a care home against all her wishes and desires. Her home is in the process of sale , to fund the £1400 a WEEK ( plus extras! ) charge. No it’s not in London, but the East Midlands . I feel awful about it all, especially when my own health issues. prevents my being able to facilitate her staying at home.
I am angry and frustrated and so disillusioned by our failing health care for older people and esp Alzheimer sufferers. They did not ask or encourage this disease so why is everything an uphill constant battle. I too try to address the bodies responsible for these decisions and speak out on mums behalf, but we need more people to take a stance and not just accept things as they are. United CJ we may just take the first step of the many required, to commence the turnaround of Alzheimer’s care.

This is helpful
0

Both of my parents had dementia. They lived in a care home for the last 4 years of their lives. Their home was sold to pay the fees of over £400,000. They had worked hard all their lives & getting good quality home care was impossible. They both died during lockdown, I had been unable to see Dad for 6 months before he died.

This is helpful
0

Dear Maria,
I sympathize with and understand your situation. My own mother, died in March 2015, in her 95th., year. I was fortunate to be able to look after her at home and reading your experiences and those of others, I am convinced that my brother and I, made the right decision. It wasn't easy and put a lot of pressure on me, as a sole carer, with my brother taking over when I took a fortnights holiday. She didn't know we were her sons, although she seemed to understand there was a bond between us. We were very lucky, she remained happy and peaceful and was easy to look after. She would eat anything I prepared and seemingly enjoyed it, I should add that I was quite a reasonable cook, just so it doesn't sound like we were giving her any old rubbish.
I found it very difficult to sleep and more than six years later, I still don't sleep regularly or well. I also had huge feelings of guilt, that I could have done more for her, in spite of what others said. I wish you the strength you will need for the fight ahead and send you our love.

This is helpful
1
Leave a comment

Your email address will not be published. Required fields are marked with *

The content of this field is kept private and will not be shown publicly.