This reflection is applicable to Pauline Garside’s care application made in England. I believe there are more generous arrangements currently available elsewhere in UK.
Due to concerns with Pauline’s memory we consulted our GP in late 2012, and he referred us to the Cambridge Older People’s Mental Health Services. This was quickly followed by Blood Tests, ECG Scan, and a C/T Scan. The ECG ruled out vascular damage, and the C/T Scan found nothing abnormal, but on 30th January 2013 Pauline was diagnosed with Early Onset Alzheimer’s Disease. We suspected a problem as Pauline could no longer follow her favourite TV programs, as she could not remember the story line from the previous episode. Pauline used to forget what she was saying mid-sentence on a regular basis, but as I used to often anticipate her thoughts we had managed very well for some time. It was annoying for her when she forgot the need for a loo visit until too late, but again we managed without a fuss with incontinence pants, which we bought privately rather than trouble the NHS. Tablets were prescribed to slow down the effects of Alzheimer’s, and existing medication adjusted as required for compatibility.
Pauline’s first reaction to the Alzheimer’s diagnosis was concern she would be labelled as a Dementia Sufferer, and I should keep the diagnosis confidential. However Pauline admitted to me for the first time that she failed to recognise people she had seen only a few days before, and covered this up by being friendly when people approached her. Pauline also admitted that she would get distressed when I was outside the house, and she had forgotten how the TV Remote worked, as I usually did all the channel changes when we were together in the room. Alzheimer’s disease had clearly been developing for some time, but Pauline was able to manage normal living, at least normal for us, before we sought medical advice.
Once diagnosed with Alzheimer’s disease NHS were able to advise us to make some changes and get some support organised. Although Pauline had not driven a car for several years we were told to give up her Driving Licence, and get a Lasting Power of Attorney document signed as soon as we could. I would then be entrusted with Pauline’s health and welfare needs long term. Community Nurses called at our home and provided helpful advice on how to manage the memory problem, and another nurse called weekly to ensure the new medication (Memantine 20mg) dose could be increased to full strength from the initial 5mg without adverse side effects. I was referred to The Carers Trust to ensure that an Emergency plan was devised so that should I be unable to look after Pauline’s needs 24/7 then assistance would be forthcoming. The NHS were very helpful for several weeks but by May 2013 we were on our own, and no further support was forthcoming.
As we were advised on 30.1.2013, Pauline’s health would decline steadily over the next couple of years and further details are recorded below, until her eventual death on 9.2.2016, after a short illness unrelated to Alzheimer’s disease. To secure our Right to NHS Continuing Healthcare at home, there were 4 separate Assessment Meetings which took place including the formal Appeal Panel as follows:-
14.10.2014 – GP Referral led to an Initial Assessment by a Social Worker visiting our home, and filling out a Questionnaire checklist. It was agreed that our situation merited immediate care solutions, and our application was referred to a senior colleague.
24.10.2014 – The Senior Care Worker made another Assessment, and confirmed our application would again be referred upwards to the Complex Case Unit in Cambridge for a Final Decision on the provision of NHS Continuing Healthcare. The Senior Care Worker was very supportive of our case.
12.12.2014 – The “Final Decision” meeting in our home consisted of a detailed Assessment Questionnaire completed by a Complex Case Unit person who seemed to be supportive, & was accompanied by the Senior Care Worker I met on 24.10.2014. Pauline was not seen personally & we had our own privately funded carer with her for company. I had done no preparation for the meeting, and thought our case for NHS help was Routine. This was a mistake as on 7.1.2015 a letter came Refusing NHS Funding because Alzheimer’s disease was not considered to be a “Primary Health Need”, and Pauline “did not meet the criteria for help”!
12.8.2015 – The Appeal Panel Meeting was held, and reversed the previous Decision, Dating our Entitlement to NHS Continuing Healthcare back to the previous meeting on 12.12.2014.
Further details concerning these meetings are noted below in the hope that you will learn from my mistakes, and obtain your Right to NHS Funding of your medical needs in a more timely manner. The key is in the preparation, and understanding of their requirements which is not readily available to the general public, and will take a lot of time discovering on the Internet.
Care at Home
We were on our own from May 2013. Apart from routine GP consultations there was no input to help us from the NHS. This was brought home to us following an admission to Addenbrooke’s Hospital on 19.6.2014 when Pauline was suffering from headaches and blurred vision. She had been suffering from repeated attacks of Bronchitis and had several courses of antibiotics in the previous months, and our GP requested further investigations to be made. After 6 days of tests and treatment and with the assurance there would be care at home for a much weakened Pauline, she was discharged on 24.6.2014. Although a Community Psychiatric Nurse came to assess Pauline at home there was absolutely no help forthcoming via the hospital to nurse Pauline at home. The Care Network “Welcome Home from Hospital” package we found out is staffed by volunteers not professional carers!
After signing up for this service, and being assured we would be covered at home for the next 3 weeks, the first volunteer to contact us agreed to call round 2 weeks after Pauline’s Discharge from hospital! Then to make matters worse she cancelled 24 hours before the visit as the Tour de France was setting off from Cambridge and she wanted to see the cyclists that day! I was beside myself looking after Pauline 24/7 as she was still unwell, so I told the lady what I thought of her and not to bother calling us again. Fortunately this message got back to the organisers of Care Network as a very nice lady started to visit us daily a week later. This provided me with Respite care for 2 hours daily over the next 6 days, so 12 hours in total so I could do some shopping, as I had not been able to leave Pauline due to her memory problems in the previous 3 weeks.
Our Introduction to Home Instead Senior Care
The lady who called in, and stayed for 2 hours at a time, recommended me to get in touch with Home Instead Senior Care, who had an Admin Office in St Ives, only a few miles away. They sent out their manager to meet us a few days later, and their company were appointed to provide professional Dementia care at our home for Pauline which started almost immediately. Initially this was for 2 hours each afternoon, 5 days a week, to get Pauline used to this type of care, and allow me to do other things around and outside the house. Coincidently the young lady who first called on us lived with her parents nearby, and had got interested in care Work via her own mother, who visited her Grandmother in a nearby Retirement Apartment. She had learned about personal care and been trained by Home Instead to a high standard. Like Pauline she had a very keen interest in horticulture, so daily Pauline was taken into our Garden, and got very fond of the first carer to visit our home. Anyone suffering from Alzheimer’s can find it difficult to adapt to any changes to routine, so this was an excellent start to our life now shared each day with professional care workers.
The other lesson I also discovered, after expending much energy, is if you want a job doing well you need to do it yourself, or get a professional organisation to do it for you and pay them the required fees. NHS were told of our needs very clearly before Pauline’s discharge from hospital and I took their word that cover would be forthcoming as described to “Welcome Us Home”. Nothing could have been further from the truth! Whether it was bureaucracy or poor systems, or just pressure of work to clear another bed on the ward, once outside the hospital we were on our own, and forced to manage without any care in the community. There are no doubt many individuals working for the NHS who are a credit to the medical profession, but clearly the demands on the NHS by 2014 far exceeded their capacity to cope, and imagine it continues to get worse every day, until there is an effective partnership between the state and private care organisations in UK, in my opinion.
The beauty of the Home Instead Senior Care organisation is that their care services can be updated and increased as required long – term on a personal basis, to fit the precise needs of their clients in their own homes. They take care of all the admin and training of their staff, and payroll which would have to be done personally if employing your own live in carer.
I could not have managed to look after Pauline at home without this company to help me. The daily hours were increased after a few months to include her personal care, washing and Dressing, as this was starting to take longer each morning as Pauline’s health gradually declined. The 4 hours increased to 6 hours daily, then to overnight cover in the last weeks of her life. Pauline died on 9.2.2016 from another medical condition as described later in this Reflection Report.
A Personal Background to Pauline’s Story
Anyone reading these Reflections could very likely form the opinion that I spent most of my married life to Pauline caring for her health rather than her personally. We had an excellent loving relationship founded on our committed Christian Faith, and for 30 years were members together of St Andrew’s Church in Histon, just north of Cambridge, England. We enjoyed active holidays, a productive garden, and lots of Friends and Family contacts. My two step sons were close, although too old when we married in 1984 to consider Adoption. They both lived or stayed at our home in the early years, until getting established in their own homes.
Pauline used to joke with me that the test of our relationship would be whether I would still love her if she “Had half a head and no legs”. I assured her I would love her unreservedly, little thinking that one day this would in reality happen to Pauline! With our strong Christian Faith, and the support of our close Friends, and Medical Practitioners as required, we coped with Pauline’s deteriorating health over the last 10 years of our marriage, maintaining good humour & joy in the company of each other. Pauline was my Best Friend as well as my Wife until her death parted us on 9th February 2016.
When we got married in 1984 I was professionally qualified as an Independent Financial Advisor (IFA), who left the Investment Company World to look after individual clients in a more personal way locally from an Office in Cambridge. I worked at what was then called an Insurance Brokerage as the Pensions Director for 8 years. After our wedding a few months later the brokerage was sold and we decided to start our own IFA Business in 1985, and enjoyed for over 23 years looking after a large number of loyal clients, until in 2008 we received an offer to buy our Office from a Local and much larger IFA company. The timing of this approach was perfect as Pauline was by now requiring a Wheelchair and assistance with all transfers, due to a long standing Back injury. My Early Retirement, at the age of 58, allowed us time together which was not always possible when running a busy consultancy. We thoroughly enjoyed this special time in our marriage, and made a point of going out somewhere each day to walk our Dogs, with Pauline using a 4 wheel scooter to be independent.
There were medical issues with Pauline for many years like clinical Depression, Diabetes, and sight problems, but we managed these daily. As the Wheelchair started to be required indoors as well as outdoors we fitted Ramps for ease of access to our Garden, which was Pauline’s long term favourite place since we moved to Histon in 1985. We enjoyed our life and Pauline rarely complained about her medical issues as she had a high tolerance of pain, and never liked to make a fuss in the normal way.