hummingbird

Hi,

My mum, now aged 88, has been suffering from mixed dementia in an aggressive form for at least eight years. It is hard to pinpoint the onset, but I had noticed a change in her behaviour and memory loss, but both mum and dad had succeeded in successfully concealing the true gravity of the situation.

In 2005, my dad, who was suffering end stage heart failure, was admitted as an emergency to hospital for the final time with a dissected aorta, and passed away after five extremely distressing days.

When my dad was admitted to hospital, aware that my mum would not be able to cope, I took her in to live with us in our family home. It was only then that I came to realise the true gravity of mum’s mental state, and realised just what my poor dad had been attempting to deal with, all the while concealing the truth from me.

My mum was extremely aggressive, and still is. She would lash out, swear, scream from the house windows that we were keeping her captive, escape from the house and go in search of her childhood home. We had to keep her locked in for her own safety. She would constantly wander the house which continued through the night, and was incapable of washing or bathing, but pretended to do so. She hallucinated and suffered from paranoia.

In desperation, I sought help from my GP, who prescribed Haloperidol at night for mum, in order to give me some respite. Mum attended a day centre on one occasion, but staff were unable to cope with her, and a Community Mental Health Nurse visited our house on several occasions, but failed to understand the gravity of the situation, and our requests for advice and help with the situation went unheard.

Ultimately, our family were in a crisis situation, and eventually we had to demand help. We were visited by the GP, a psychiatrist and a social worker who arranged for mum to be admitted for respite to a care home specialising in dementia care. The owner, a doctor, came and assessed mum prior to agreeing to take her. We took the advice of the professionals, having never had the experience of dealing with a dementia suffer.

We were assured that mum would settle in the care home, but she failed to do so and her behaviour, as described above, continued, including continued attempts to escape (succeeding on several occasions) out of windows and doors that had been left unlocked. Luckily she was apprehended by a passer by on one occasion. She remained aggressive and unpredictable and there were altercations with other residents and members of staff. She refused medication and regularly hid it in drawers etc.

We continued to be reassured by the owners of the care home that there was no alternative accommodation that would suit my mother – only a mental health hospital that would be bad for her. I agreed that my mother would stay at the care home, and I was forced by Social Services to sell mum and dad’s house to pay the fees. This was their only asset, as they did not have any savings.

At one point, as I was so concerned regarding mum’s continuing disturbing behaviour, I requested that the doctor who owned the care home provide me with a letter stating mum’s condition and needs on a daily basis, so I could approach the local Primary Care Trust to ask if mum was eligible for any funding. The owner of the care home was adamant that mum did not qualify for funding, and provided me with a letter stating she
only required personal care. I decided, at this point, not to pursue the matter, even though my mother also has multiple health problems requiring regular hospital admissions, surgery and monitoring of a pacemaker.

Following several distressing years, without any support from social services, I came across a firm of specialist lawyers, through a website, who deal with cases of people who should be funded by the NHS for Continuing Nursing Care, and who are and have been wrongly paying fees. In 2009, mum’s case was taken on by the law form on a no win, no fee basis. The “Battle” then commenced to prove mum’s case. The sequence of events that followed were elongated and distressing, with the PCT firstly refusing to consider mum’s case for funding at all, saying she did not qualify. Eventually, after many delaying tactics, mum’s case was considered and went to Panel, but we were turned down. During this time we had moved mum to a Dementia Care Nursing Home. By this time, mum had been medicated at the care home, to the extent that she was curled up in a ball on her bed, virtually comatose and unable to make eye contact.

Eventually, in Spring 2010, after many more delays on behalf of the PCT, mum’s case again went to Panel and it was agreed that mum was eligible for funding, but only from the time that she entered the nursing home. They refused to consider retrospective funding from the date mum entered the care home in 2005. Again, we presented all our evidence we had gathered through the daily care home records, GP and hospital notes etc, and also my observations of mum’s behaviour, falls etc.

After many months and delays, the PCT agreed to consider the retrospective funding case, but when it finally went to Panel they concluded mum was not eligible. We continued to produce evidence but the next time the case went to Panel, the conclusion was that the evidence gathered by the Nurse Assessor was flawed, so the case was rescheduled to a later date!

In Autumn 2011, mum’s case was again put before a Panel, and the PCT finally acknowledged that mum was entitled to reimbursement of wrongly paid fees which she had been charged since she first entered care in 2005. She received the reimbursement of these fees in December 2011. Without the legal guidance I would have given up my fight, which is why the PCT make the whole process as difficult and drawn out as they possibly can, and make you assume you are fighting a lost cause. The whole experience is emotionally draining, particularly when you have a loved one that is suffering from this terrible disease.

Mum’s eligibility for funded continuing care is reviewed on a regular basis, and could be withdrawn at any time, if the PCT deem her condition to have altered. Mum remains aggressive, and last summer, after she attempted to suffocate another resident with a pillow, she was Sectioned and spent six weeks in a Mental Health Unit being assessed, drugs juggled etc. She was discharged back to the nursing home, and two days later she attempted to suffocate the same resident. The PCT now fund a 1:1 care 24 hours a day to walk side by side to her, as she will often walk through the night. This funding is reviewed, and one such review took place last week. I am awaiting the outcome, as even with the 1:1 there are regular incidents of mum assaulting carers or other residents and she falls over on a regular basis.

Mum has not known who I am, nor my son and daughter, for many years now, so it is just a case of continuing to try and do the best I can for her regarding the standard of care she receives. At one point, when she was at the care home, she was under a Deprivation of Liberty Order, which allows physical restraint by carers. Carers are assaulted and bitten by her on a regular basis.

There are current staffing and worrying issues at the nursing home at present, so I fear for the future for mum. What decision will be made, if any, regarding an alternative placement? The whole situation is a constant worry as many of you will appreciate, but you just have to carry on.

Well, that is mine (and mum’s story) so far. If anyone else is going through a similar situation or is pursuing a case for funding, I would be only too pleased to share any information I have acquired along the way.

Take care.

Hummingbird