I have included one or two suggestions that involve some cost but I would strongly advise you consider them.
*Prices as at 01/04/2021
* As at 01/02/2021
Personally I would suggest you start with:-
Age UK ( ageuk.org.uk ) who completed the attendance allowance and blue badge form for us.
Alzheimer's Society ( alzheimers.org.uk )
Dementia UK ( dementiauk.org )
Carers UK ( carersuk.org )
Your County Council and Local Council will also be able to guide you towards charities in your area.
For Dementia Charities and services local to you simply search (on Google):-
Local dementia charities near me, or
Local dementia services near me
For me, as a full time carer, the "carers only" group stands out.
Where you can share your own experiences, challenges and occasionally your deepest thoughts in a confidential and safe environment.
Not to mention those little and often not so little gems of information.
There are charities where a trained and vetted volunteer will come to your home and sit with the person.
Or perhaps take them out for an hour or two, just the two of them to a garden center of cafe or perhaps to a group of people with similar conditions which in our case was singing. Singing is often suggested because as well as joining in a group or simply listening to music helps with both social and mental stimulation.
Several Charities and Local Councils run Day-Care Centres where the person with dementia can get a change of company and often activities (and lunch) while carers can have half or a full day of respite. Search locally, some are paid for and some are free.
There are some things you need to think about, who can help
In the short term if you need to go to the hospital for 2 to 4 hours.
In the medium term for 2 to 4 days
In the longer term for several weeks or months.
And where are the contact details for these people and do they all know each others details.
The Red Emergency Folder with the persons care needs, medication and social preferences. Placed in a prominent position for the emergency services. Some health regions do different colored folders but the principle is the same.
The Lions Message in a Bottle Scheme is a simple idea that encourages people to keep their basic personal and medical details in a common place where they can easily be found in an emergency.
The information is kept in a bottle. The bottle is kept in the fridge, where the emergency services will expect to find it in the event of being called to your home.
They will know you have a bottle by a label. One on the fridge door and one on the inside of your front door.
The Lions Club British Isles Lionsclubs.co.uk supply the bottles free of charge to individuals and is supported by the following services:Ambulance Police Fire & Rescue, Emergency Doctors Primary Care Trusts.
Contact your local Lions Club or telephone Lions Clubs Head Quarters on 0345 833 9502, alternatively order a Message in a Bottle by emailing email:email@example.com
Write down your details.
Whether it is in the Red Emergency Folder or in the Lions Message in a Bottle.
The Lions club list is a great guide to what to include:
• Your full name and brief physical description
• Your doctorʼs name, Surgery address and telephone number
• A brief description of any medical conditions you are suffering from
• Allergies and allergic reaction to medication
• Location of your medication in your home
• The names, addresses and phone numbers of two people who may be contacted in any emergency
• Details of any pets that may be on the premises
They also advise that you keep your repeat prescription list with your medication, this is of great help to paramedics.
Complete THE HERBERT PROTOCOL.
This is an Adult at risk profile containing information intended to assist care workers , partner agencies and the police if the person it refers to goes missing.
It is very comprehensive as it includes a photograph as well as GP's contact details, Medical Information, any particular phobias, places they may go, jobs, interest and hobbies, weekly habits, travel, their daily routines and primary contacts.
Details can be filled in online or can be downloaded and filled in by hand. Completing the online version allows it to be distributed (emailed) to selected people you would want to be made aware should the person go missing.
It is just a 20 minute job and I think that it is very important that it is done before the need arises.
Fire & Rescue Services
Fire & Rescue Services throughout the UK offer Free Home Safety Checks. As part of the service they check any smoke alarms currently installed and offer advice on fitting smoke alarms to ensure an effective early warning of a developing fire.
Register with your utilities Priority Service Register.
Gas Supplier and Gas distribution services (0800 111 999)
Electricity Supplier (Tel. 105) and the Power Grid Priority Service (0800 169 2996)
Telephone Company (Register with BT via the "BT Inclusion Team" 0800 919 591)
Telephone changes presently taking place throughout the country
Please take time to read this as the changes that are coming may stop you calling emergency services.
If you or someone you care for is likely to be confused by new technology:-
Register yours or their needs with their landline telephone provider NOW.
If the person is not registered they could be changed over at any time.
My Wife has Alzheimer’s Disease and I thought we were registered, but I was wrong and we were changed over to the new system on the 8th November 2021 and we were left without any landline phone.
If you have previously registered with the landline telephone service provider’s Priority Service, check as this may have been deleted from their records following the introduction of the new Data Protection Act 2018.
If you register with their telephone service provider this should avoid being changed over before 2023 and without taking into account any needs.
BT Openreach, which manages the UK's 14 Million phone and internet network, is retiring the Public Switched Telephone Network (copper wired telephone lines) by 31 December 2025. That means home phone (landline) providers, such as BT, Sky and Virgin Media O2 are now moving customers to a digital technology known as “Voice over Internet Protocol” (VoIP), which carries calls over a broadband connection.
Telephone service providers are required to give 1 month’s notice to everyone before their telephone system is changed to VoIP. Unfortunately the notice can appear to be a “standard letter”
If you are registered with BT for your landline, BT has a special Inclusion & Dementia Team on 0800 919 591 to help smooth the process.
If you have a single telephone adjacent to a modem, on the changeover day simply plug it into the back of the modem but there is nothing to do until the changeover day.
If you have your phone plugged into a remote socket elsewhere in the house, or only have a cordless landline phone, they will stop working with VoIP so as soon as you receive the notification letter, people or carers should:-
1. Ask for 1or 2 free Voice over Internet Protocol (VoIP) phones.
2. Or ask for a free adapter that allows you to continue to use one existing corded phone. Existing cordless phones connected to the electricity will no longer work in remote telephone sockets.
3. If you are in an area prone to electricity power cuts:-
Ask for a Free Battery Back Up unit for the Modem/Hub.
This will allow the modem to continue to work for at least one hour following a power cut.
The new VoIP phones have a battery that can continue to work for up to 12 hours.
In a power cut, charged mobile phones and laptop computers will continue to work but after 1 hour they may have to rely on an alternative Wi-Fi signal.
4. If you are with BT, ask the BT Inclusion & Dementia Team for a Free Priority Fault Repair application form. The form needs countersigning by a doctor or consultant which may incur a charge. The form is also available at:- www.bt.com/content/dam/bt/help/including-you/BT_Free_Priority_Fault_Repair.pdf
5. Any existing landline only customers with BT that are changed over to Digital Voice (VoIP) will be provided with a Free Smart Hub 2 (modem) and they will not pay a monthly rental for the Smart Hub 2. Those customers will not have broadband and all the other services that come with the chargeable service such as BT Wi-Fi and BT Cloud.
6. Other landline service providers may have different policies which you need to check.
Pack Your Bags
Pack a bag each just in case either or both of you need to go into hospital even for just one night. Now is the time to do it because when you need it most you will have enough on your mind. Don't forget to tell others where the bags are.
Put in the bag the obvious but while you can think about it make sure you add something that will remind you both of home.
Knickers or underpants
Tooth Brush and toothpaste
That spare pair of glasses
A photo of the pair of you and that little something to remind you of home, a favorite soft toy, something you cherish but can be replaced
A little cash, just enough for a newspaper or a treat, not much in case it gets lost
Don't forget a list of phone numbers and a list of medications, simply the same as you have in your Red Emergency Folder or your Lions Message in a Bottle.