Dementia Action Week 16th – 22nd May 2022
My Mum’s journey with Dementia continues and each day that passes feels like a blessing and a worry all at the same time. Mum has stopped trying to eat and my Dad and her carers are daily finding new ways to get enough nutrition into her. From shakes made from protein rich beans, fruit and milk to trifle, they are trying it all. During my daily chats with Dad he says to me:
“She is in good shape”
and I wonder how good she really is. I put the phone down and think:
“How much longer will she stay with us?”
whilst in my heart I have missed her already for at least 2 years.
This is a snap shot of my experience with Dementia and during Dementia Action Week it feels important to share this to support the very many families who are also living with Dementia.
Cruel Mistress
Dementia is a cruel mistress who comes and strips away our loved ones cognitively piece by piece. With each piece lost those caring for them have to learn to adapt and learn again how to look after their loved one and how to manage their own emotions. It is a roller coaster of emotions no one wants to be on and it feels like there is nothing that can prepare you for it. With frustration, despair, sadness and anger often being felt, caring for a loved one can feel utterly soul destroying for the carer on top of the deep sadness of grief. If you are living with or caring for a loved one with Dementia there is help out there. I have some links at the end of this blog to help you find the support which I hope will be good for you.
Looking at Diagnosis
This year Dementia Action Week is looking at diagnosis. Recognising the early signs and getting a diagnosis early is important as it offers time before Dementia takes a grip to get things in order, such as a Power of Attorney or Writing a will. It gives you the opportunity for those difficult conversations. It may empower you to learn about Dementia and try to prepare for what is coming.
I wish I had time 10 years ago with Mum to talk to her about the future, her future, our future, but by the time she was diagnosed it was too late and she was in denial that she had dementia until she forgot who we all are! It made it so much harder for us looking after her. My Dad, who is a retired medic also put his head in the sand and ignored what was clearly happening before his eyes for 3 years because I expect the truth hurt too much! Whilst he shielded his heart from pain he also shielded the truth from most of us! I wonder how it might have been if her diagnosis had come sooner.
Dementia Awareness
Dementia awareness is so important and in my opinion, so too is courage. Having the courage to face the truth of what might be happening. Time is so precious, if you suspect you or a loved one has Dementia, talk with them and find the support you need. Contact Alzhiemer’s UK or Dementia UK for advice and support and as you walk into the unknown reach out for help every step of the way.
Alzheimer’s and Dementia support
If you are an Alzheimer’s and Dementia carer, you are not alone, there are many people who are here to support you. There are helplines and support groups who will offer support, below are some of those who can offer expert advice. I specialise in Counselling for Carers and counselling for Alzheimer’s and Dementia and am here to support you.
After a diagnosis of dementia: next steps – This checklist has been written by dementia specialist Admiral Nurses, to help in the early days after you or your family member has received a diagnosis of dementia.
Website: Steps to take after diagnosis of Dementia
Alzheimer’s Society
Provides information on dementia, including factsheets and helplines.
Phone: 0333 150 3456 (Monday to Friday, 9am to 5pm and 10am to 4pm on weekends).
Website: www.alzheimers.org.uk
Talking Point, on-line dementia and their carers: foum.alzheimers.org.uk
Alzheimer’s Research UK
The leading dementia and Alzheimer’s disease research charity.
Phone: 0300 111 55555
Website: https://www.alzheimersresearchuk.org/
Alzheimer’s Association
Lots of information on their site with links. They strives to improve quality of life for those facing Alzheimer’s disease and other dementias.
Website: https://www.alz.org/uk/dementia-alzheimers-uk.asp
Alzheimer Café UK
Website UK: http://www.alzheimercafe.co.uk/
Website Farnborough: http://www.alzheimercafe.co.uk/Farnborough.htm
Carer’s allowance
If you’re caring for someone with dementia, you may be entitled to certain benefits. This page will tell you if you’re entitled to Carer’s allowance: https://www.alzheimers.org.uk/get-support/legal-financial/carers-allowance
Carer Support and Dementia Advice Service for Hampshire
Provides advice, information and support to all carers aged 18 and above who provide care for an adult. The service also supports people with dementia and memory problems and is available throughout Hampshire.
Phone: 01264 332297
Email: enquiries@andovermind.org.uk
Care Choices
Committed to helping people who need information on social care and support. Find the Care Home or Care Solution that’s best for you – get information, guidance and reviews. Phone: 01223 207770 Website: https://www.carechoices.co.uk/
Dementia Guidance
An independent dementia guide intended to provide a guide to free services available throughout the UK to people with dementia and their families.
https://www.dementiaguidance.co.uk
Dementia Friendly Hampshire
An independent charity, working to make Hampshire a county where people affected by dementia can live a good life.
Phone: 07388 668332
Email: jane.ward@dementiafriendlyhampshire.org.uk
https://dementiafriendlyhampshire.org.uk/
Dementia Friendly Hampshire – Advice and Information
This is a helpful list of things people who have dementia need to consider having in place.
Website: https://dementiafriendlyhampshire.org.uk/advice-and-info/
Dementia Talking Point – Alzheimer’s UK online community. Have you or someone you know been diagnosed with dementia? Join Dementia Talking Point to share experiences with other people affected by dementia.
Website: https://www.alzheimers.org.uk/get-support/dementia-talking-point-our-online-community
Find a Dementia Café or dementia service near you
Dementia Cafés offer a place to socialise, learn more about dementia and local services, and enjoy something new each session. Follow this link to find your local Café:
Website: https://www.alzheimers.org.uk/get-support/your-support-services/dementia-cafes
Alzheimer’s Drug Discovery Foundation
Website: https://www.alzdiscovery.org/
Brunel Care
Local Charity caring for older people across Bristol, South Gloucestershire, North Somerset and Somerset.
Phone: 0117 914 4200
Website: https://www.brunelcare.org.uk/
DEEP
DEEP stands for the Dementia Engagement and Empowerment Project – it is the UK network of dementia voices. DEEP consists of around 100 groups of people with dementia – groups that want to change things.
Contact Rachel Niblock – UK Coordinator for DEEP network.
Email: niblock@myid.org.uk
Phone: 07720 538851
Website: https://www.dementiavoices.org.uk/
Dementia Action Alliance
Support national and local for dementia support
Website: https://www.dementiaaction.org.uk/ / https://nationaldementiaaction.org.uk/
Dementia Adventure
Charity supporting people with dementia to get outdoors, connect with nature, themselves and their community, and retain a sense of adventure in their lives.
Phone: 01245 237548
Email: info@dementiaadventure.co.uk
Website: http://www.dementiaadventure.com/
Dementia Connect Helpline
Phone: 0333 150 3456
Wales and West Midlands
Dementia UK
Telephone or email advice and support for family carers, people with dementia and professionals provided by experienced Admiral nurses.
Phone: 0800 888 6678
Website: www.dementiauk.org
Royal Airforces Dementia Support
Phone: 0800 018 2361
Email: dementia@rafa.org.uk
Website: https://dementia.rafa.org.uk/
NHS Information
An overview of Alzheimer’s disease. Signs and symptoms of Alzheimer’ disease
Website: https://www.nhs.uk/conditions/alzheimers-disease/
Play List for Life
Charity founded by Sally Magnusson after death of her mother who had dementia. Music for everyone living with dementia which can make it easier and happier
Phone: 0141 404 0683
Email: info@playlistforlife.org.uk
Website: https://www.playlistforlife.org.uk/
The Wide Spectrum
Dementia education resources
Website: http://www.thewidespectrum.co.uk/default.htm
Young Dementia UK
Support for those with early onset dementia. Young Dementia UK have teamed up with Dementia UK.
Dementia Helpline UK: 0800 888 6678
Website: https://www.youngdementiauk.org/
Counselling Directory – https://www.counselling-directory.org.uk/dementia.html
This list is by no means comprehensive so if you know of other support available I will be very grateful if you will let me know so that I can add them to the list for others to find. Email me please. carolineellisoncounselling@gmail.com
Written by your local counsellor in Fleet, Caroline at Caroline Ellison Counselling – this is my experience and these are my opinions. Carpe Diem.