ALZHEIMERS is the most awful illness, not only for the sufferer, but also for those who love and care for them.
In the early days of Jims illness I did not have a computer - was not given any helpful literature - and did not even know the Alzheimers Society existed.
Getting relevant help and information can be a nightmare and very time-consuming, and that is only when you discover you are entitled to any.
The professionals, especially the charities, are brilliant - but again - it’s finding them.
A good Social Worker is a must ---- once we had one - we had the best anyone could hope to find. It was a battle to keep her - rules dictated a regular change. I fought to keep ours - and won.
We also had a brilliant GP - he did all he could to help and would speak to me immediately or make a house call whenever I phoned him.
If you need home care - it is means tested. Social Services finance departments have a list of ‘allowable expenses’. These do not take into account a vast amount of other expenses. Capital expenses - a new bed for example - can be taken into account - but it is quite likely the cost will be spread over a three year period.
It is vital to keep a record of every last penny spent on any equipment, car costs. bedding, replacement of damaged furniture, carpet cleaning - the list is endless.
We had solar tubes installed, which cut our costs for hot water and put us just below the level allowed for heating bills. This was not on ‘the list’, but I argued the point - it was allowed over three years.
I was unaware we could claim a reduction in council tax. This site is a good starting point, and once our GP had completed the necessary paperwork - it was backdated for two years.
Unless you are wealthy enough to employ private carers of your own choosing - Social Services will place a contract for you with a local company.
Some of these companies have very good training schemes and will supply carers appropriate to need. Others seem to have ‘Dementia’ training at the bottom of their list of priorities.
It is a lottery - Just remember - these people are coming into your home - you can set basic rules.
Just A Few.
A packed lunch is fine - but must not be eaten in front of the person being cared for.
Do not make or take personal phone calls on a mobile - or the house phone - whilst on duty.
When on duty and someone is asking for help to find the toilet, it is not advisable to ignore them and continue reading the newspaper. Telling them to ‘shut up’ is even worse.
You might wonder, but this scenario was reported to me by some new neighbours who overhead Jims carer - it was his first visit and he was sitting in our sunroom with the door open - they were in their garden. Needless to say, I refused to have him back - the agency were not too pleased with him either!
Another neighbour was worried when he saw Jim trying to climb over the fence at the back of our garden and came round to tell me - I had gone shopping - and he found the carer quite happily sitting in front of the television. She had no idea what Jim was doing and could not understand why I was so cross.
First priority before anyone sets foot in your door is to photograph any valuables - especially jewellery - and lock them away. Despite the CRB checks - some ‘visitors’ cannot be trusted. We lost £3500 worth of jewellery belonging to my Mum and Jim - hidden in two different places.
Should you not be happy with the carers supplied via Social Services / agencies, there is another option.
This is called an ‘Independent Living Trust’
It is set up by Social Services in conjunction with A4E, who are specialists in the field.
It is not for the faint-hearted though. If the person needing care is capable, they can administer the trust.
If - like me - you do not have an Enduring Power of Attorney - it will require three trustees, a trust deed, a new bank account [required anyway] and quite a lot of paperwork to be completed.
It is an ongoing job, with monthly returns, sourcing carers etc, but A4E are past masters and will provide all the help needed.
The one over-riding bonus is being back in charge and getting the right carers for the job. The downside is loosing your social worker - now deemed not necessary. That was the worst part for me - she was one of the family by then.
I was able to keep two of the best carers we’d had - Debbie & Lyn- they came to us through an agency originally, but the agency did not have them tied into any contracts.
Another was already my very good friend Hayley -who gave me a vast amount of help on a daily basis - despite working full time and also being member of our All Weather Eastbourne Lifeboat Crew. The fourth was a fabulous guy - Paul - from a previous agency. We lost him because his agency was given a block contract by Social Services, and we were outside their post-code area.
This wonderful man came with 35 years of experience caring for Alzheimers sufferers, and is a registered trainer. He has remained a very good friend.
All the websites listed are extremely useful.
CARE FOR THE CARERS - An independent charity covering the whole of East Sussex. It’s aim is to improve the quality of carers lives by enabling them to source a range of services and support they require, including one-to -one support, back care advice and a free bi-monthly magazine. They can also supply an emergency alert card and a care passport as well as links to other services.
THE ALZHEIMERS SOCIETY - invaluable - training courses for carers, fact sheets, books, advice on every aspect of Dementia. They also have many local branches and the staff will do all they can to help.
CROSSROADS - A charity of great integrity. They will provide sitters / carers to care for someone on a regular basis without charge. Their training is first class and the carers provided are extremely reliable. In great demand and there is usually a waiting list.
DIRECT.GOV- A very big site with all the information needed regarding Carers Allowance, Attendance Allowance, Council Tax reduction etc, with links to local councils for Blue Badges etc and necessary forms for other allowances.
THE DOH HOMECARE CHARGING POLICY - This web-site explains the government rules for Social Services when making charges for home care. It is well worth reading if you are advised a financial revue is to be done. These rules are supposedly conformed to by all local authorities, but I have found this is not the case. Some areas will cap charges, others have different costs they will allow etc.
CARERS UK - A brilliant site for all aspects of caring, with extremely helpful staff. They fight for the rights of carers, and when contacted, will respond immediately.
A DIGNIFIED REVOLUTION - Ensuring that Older People are cared for with dignity and respect in hospital.
This notice was placed on my Mums bedside table in hospital - the day before her 90th birthday. Quite meaningless to her, but very upsetting for our family.
ACTION ON ELDER ABUSE - Who are they ? Action on Elder Abuse (AEA) work to protect, and prevent the abuse of, vulnerable older adults. They were the first charity to address these problems and are the only charity in the UK and in Ireland working exclusively on the issue.
These photos are bruises on my husbands hands - resulting from two staff at the day centre trying to change his clothes. He had been looking for the toilet and sadly couldn’t find it - and soiled himself.
Apparently every member of staff had tried to change him and he became increasingly distressed, so they called me. Our carer Paul met me at the centre, took Jim to the bathroom, and ten minutes later he appeared - happy and clean.
The day centre had repeatedly been told Jim could not cope with ‘two to one’ help, it confused him too much - but those were their rules - and they were going to stick to them.
CARE QUALITY COMMISSION - [ Was CSCI ] - The Care Quality Commission is the independent regulator of health and social care in England. Its aim is to make sure better care is provided for everyone, whether that’s in hospital, in care homes, in people’s own homes, or elsewhere.
They regulate health and adult social care services, whether provided by the NHS, local authorities, private companies or voluntary organisations. And - they protect the rights of people detained under the Mental Health Act.
AGE UK - Are an amazing charity formed from Age Concern and Help the Aged.
They provide Information and advice for the elderly about benefits, care [hospital, home and residential] age discrimination and computer courses - amongst many other subjects relative to the elderly.
YOURS MAGAZINE - A magazine published every two weeks, and well worth reading. They have a dedicated section relevant to carers, and run a “Carers in Touch” scheme, which has been an enormous success.
I met my friend Pam through this scheme - from the first list published. She only lives ten minutes from me, and has been a carer in the community for many years - and was one of our trustees when we set up the trust for Jims care.
Finding a good nursing home for a loved one can be very traumatic, and it is well worth visiting as many as possible prior to making a decision. The way you are greeted makes a big difference - the decor and lack of unpleasant smells can tell you a great deal. If staff and residents appear happy and cheerful that is very good news. spend as much time as possible observing - make notes, and have a list of questions at hand. There should always be someone available to show you around and give you the information requested - without any rush to get you out of the door - that is vital.
I was very lucky, as I picked one for my Mum from a web site and the minute I walked in the door - I knew it was where I wanted her to live. All the others I looked at were not even a possibility. It is a decision I have never regretted, I know she will be loved and given the best possible care for the rest of her life.
This beautiful home is called Bay House - in Bexhill on sea, and their web site is Bay House