Real stories

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

My husband is in a care home, and I really feel for others in the same position. He has to pay for his own care and our life savings are dramatically reducing. All people with Alzeimers disease should receive funding from the government to help with these fees, continuous nursing care is impossible to obtain unless you are at death's door. My husband's physical needs are moderate but his cognition needs are very high, and he gets no help with these, not even talking therapy. He has to be in a home for his own safety and mine, as he tries to wander off looking for his parents, both of whom died years ago, often in the evening he didn't recognise me and it came to a head when he tried to turn me out of our house. He has paid his N.I. stamp for 49 years, he is now 86, and needed very little from the health service until recently, now he needs help it is not there for him, he has to completely fund himself, using all his pension and life savings to do this. When his mother developed severe arthritis and later dementia, he gave up work as she was very upset at the thought of going into a care home, and thus saved social services having to pay her care home fees. Present and past governments should hang their heads in shame for the manner in which dementia sufferers are treated, they are forgotten people, and it is a very cruel disease.

Sometimes I despair. My husband tries to help me, but his memory is taxed, heavily, if he is anxious. Where do you go for patience? Things could be worse and will eventually be. So, where do you go for hope?
It is not only caring assistance. Practical advice to run a life would be useful - banking, insurance, minor jobs around the house - a life line for "how do I?"s would ease pressure and temper. Just a thought.

Is anyone else appalled at the gross insensitivity of the Minister of State for Health when at the Tory Party Conference, he exhorted people to take more care of their family and not assume that the State will be responsible? I’m not saying this from a party political stance, I was just astounded that someone in his position could make such comments. If he wants to be better informed, he only has to read the comments here and elsewhere of all the dutiful and loving sons and daughters who look after their elderly relatives, often in difficult conditions, at detriment to their own health and with practically no support from Social Services. I was moved to write to him to draw his attention to his outrageous comments and would like to suggest that everyone does the same. Those of us who have had to go through the minefield of social care funding know full well that the proposed Social Care funding changes announced by Boris Johnson are a hollow promise that people won’t continue to be forced to sell their homes to fund their care. My husband and I struggled for five years to look after my in-laws, both of whom had Alzheimer’s and vascular dementia before we had to admit defeat and move them into residential care at the ages of 89 and 92 respectively. Both my husband and I were retired at the time as I really don’t know how we would have managed if we had had to go to work and look after children at the same time. My heart goes out to those people who have to do this.

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.

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

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.

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.

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.

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.