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- TDS Newsletter October 2023
TDS Newsletter October 2023
Here is Your TDS Newsletter October 2023
Hello
In October’s issue:
Table of Contents
Hello everyone!
I’ll keep my intro short this time as there’s so much that’s interesting to read below. It’s been a great month for us here at TDS with new singing and music-making opportunities for our members at the Crumpsall group,
the Fallowfield group, and for the Trafford group who attended an event at the Bridgewater Hall.We’re excited about some small grants and donations. John Lewis has just made a donation to help us arrange a Christmas party for you all, and we’ve been awarded a grant from TFGM to purchase an electric tricycle and a bicycle for carers to borrow and use to exercise. Even in the midst of undoubted difficulties for many of you, there are fun and positive things you can do - so we urge you to take the plunge!The Carers’ WhatsApp group and the recent Zoom meetings remind me that you are struggling to get the help, advice, or equipment that you need. Thank goodness that you help each other and that volutneer expert, Margaret, is a font of all wisdom. Next week, we’re having a meeting with a range of professionals who work in the dementia sector and we’ll raise these problems with them. We hope to see you at one of our groups or events in October. In the meantime, perhaps the ‘Serentiy Prayer’ might help you:’God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.’~ Reinhold Niebuhr
Join the next Dementia Changemakers Meeting
The Dementia Chagemakers share experiences, provide crucial feedback about dementia services, and influence change within the city of Manchester for people living with, or affected by, dementia.
We hold regular face-to-face meetings every two months. This is our chance to make services better for everyone affected by dementia!The next meeting will be:
Wednesday 11 October 20231pm - 3pm
Whitebeck CourtMoorway DriveBlackleyM9 7HR
Please let us know if you hope to come, and also do let us know if you need help with transport. Contact Anna or Jo at Together DementiaSupport (0161 226 7186) or e-mail: [email protected] / 0161 477 6999
Cost of Living & Benefits Advice
We understand that it’s a worrying time at the moment and the Carers Manchester Network will do their best to keep you up to date with the latest developments on government help with rising bills over the next few months.
You can check you are claiming the right benefits now so you can claim before the winter period begins. In the meantime, we hope the following information can help you.
Help with your energy bills as a carer
At Carers Manchester Contact Point there is a Benefits Advice Worker who can support you with a benefits check to make sure you are getting everything you are entitled to. You can call them (0161 543 8000) to register and request an appointment.
Carers Manchester Network also run a monthly Welfare & Benefits workshop that will take you through what benefits you and your family are entitled to and is an opportunity to have any of your queries answered. You can book onto this through their events page (www.carersmanchester.org.uk/events) or by phoning them on 0161 543 8000.
The phone line is open Monday –Friday 10am – 4pm (except bank holidays), and 10am – 6pm on Wednesdays.
Hopefully, your relative withdementia receives either Attendance Allowance (if over 65 years of age) orPIP/DLA (if under 65years when they first claimed). If they are not receivingthis benefit please give us a call and we can order the forms for you and getyou help in completing them. Being in receipt of those disability benefits alsomeans that you can usually get a discount on your Council Tax bill. It’s calledthe SMI Discount. Phone us for advice and help in claiming that.
If you have Council Tax arrears you may be entitled to a Discretionary Council Tax Payment.If you have rent arrears you may be entitled to a Discretionary Housing Payment
Energy Advice
The Energy AdviceTeam are part of Citizens Advice Manchester and can support you with managing yourenergy costs, budgeting, fuel debt, accessing grants for essential householditems and energy saving adaptations.
They can also support you to applyfor the Warm HomeDiscount and advise you if your eligible for a Winter FuelPayment.
How to contact Citizens AdviceEnergy Team: Telephone: 0161 672 1234 Email: [email protected].
If you, or your relative with dementia, lives in Trafford local authority area, you will need to contactTrafford Carers Centre, as a starting point. Tel. 0161 848 2400 option 1
Don’t worry or suffer insilence, get in touch and help will be provided!
Save the Date! Tickets for our Christmas Fundraiser will be on sale soon
We are very excited to announce that our Christmas Fundraiser 2023 will take place at Manchester Cathedral! The Together in Song choir will be joined by special guests for a fun and festive performance in the historic heart of the city.
Tickets will be on sale very soon, so keep an eye out for our launch email and on our social media for your exclusive TDS member offers.
BBC 500 Words Storywriter, Niamh
Niamh has written a short story about her Nana for the BBC’s 500 Words storywriting competition. Her mum is one of our TDS carers and shared the story with us. If Niamh is a winner, she will be invited to Buckingham Palace to receive her prize!
This story is grounded on my day to day acquirements with dementia. Hello! I’m Niamh, and my nana has dementia. It was suspected she had dementia when she kept saying there were people in her shed, therefor my mum was really worreid and decided to look inot it, after a couple of months we realised she had dementia. Now OBVIOUSLY dementia is a horrible thing but in every horrible thing there are great things, you just need to look at it positively and sometimes upside down. So here are some funny moments that i have experienced with my nana. Since she is in a care home now we cannot do this as often but every Sunday she use to come over to have some SUNDAY DINNER and we give her carrots or vegetables and after she eats them her face curls up and she squirms like she’s eating worms as a child even i don’t pull my face that much while eating veggies! This moment probably isn’t that funny to you guys, but as eye witness of this i can assure you it was hilarious. It was a lovely day and i was outside painting an I gave her a canvas and she drew a strange looking thing almost a teacup that fell over then stole half a birds head, yes THAT strange i asked her as nicely as i could what it was. ”Blob” she said. I didn’t know how to reply so i muttered under my breath “well you blob looks…lovely?””Its not a blog!” She state rolling her eyes. I think you can probably tell how i was feeling by now. Here is one that still boggles me to this day. We were having an amazing dinner at perfect restaurant and the staff were super nice, we finished our meals and we were getting our bill when we remembered we needed to tip my mum didn’t have any change and neither did I. It was all up to nana Jackie she reached into her bag and rustled about. Like a hero in the act, she pulled out what we thought was £2 but nope it was a watch battery and a euro. Now these funny moments have come to an end but i really wanted to give out some advice for other children who have relatives with dementia, i was really worried i felt like I couldn’t share my feelings but you just need to know there will always be someone who is there even if you know it or not but if you are feeling down and don’t know who to look to for help you could write down your feelings! I know many people suffer with dementia and many people ahve passed away because of this disease but no matter if you have dementia or not be safe and good luck in the future.
We wish Niamh the best of luck with her entry and know you will all love her work as much as we do.
Famileo - a fun way to keep in touch with loved ones
I’ve found Famileo when I was looking for a way to help all our family stay in touch with my Grandma Margaret. She lives alone and doesn’t use any social media. She only really hears from our relatives that live far away or abroad once or twice a year, and we tried linking her up with an Facebook Portal device but she doesn’t like using anything internet-based.
Famileo is a great solution, because all our family members all around the world can submit photos and messages wherever we are, and once a month the Famileo app sorts the messages into a newspaper that is printed and posted to Grandma’s house. It tells her who has contributed to the issue, and which birthdays are coming up next. I found the service really cost-effective, too. We pay £5.99 for a gazette containing 28 messages to be sent to Grandma every four weeks, but there are other plans where you can pay for more frequent issues, or issues with more pages for more messages. You also get a digital copy of every issue to keep or share however you like.There isn’t a limit to how many people can contribute to the gazette, either. We have 20 relatives around the world who are now sending messages for her gazette each month. The Family Kitty feature also means we can all put in a few pennies toward the cost of the subscription, and this can either be by paying for a certain number of issues in advance or putting in a custom amount. I really do recommend the service for anyone looking for a way to keep in touch and stay connected that doesn’t involve someone not confident with apps or the internet trying to navigate finicky technology. If you’d like to give Famileo a try, you can use our referral code DF7EE348 to get your first issue free.You can learn more about Famileo or sign up for the service on their website, www.famileo.com
A Successful Afternoon Tea Fundraiser
Our lovely Jessie put on an “Afternoon Tea” in the garden at her home in Denton on Saturday 9th September and raised £666 for Together Dementia Support. There was a raffle, afternoon cream tea and a tombola. Her friends and neighbours all rallied around to help her and local businesses donated vouchers for the raffle.
Jessie has been raising funds for dementia services for the last few years due to her own experience with dementia – looking after her husband with dementia - and she found she had lack of support so wants to change things for others!
You are a superstar, Jessie!If you have an idea for how you can raise funds for Together Dementia Support, have a look at our Fundraising Pack to turn your idea into reality!
Advanced Care Planning -
a story from our amazing carer, Wendy
Wendy, carer for her mum with dementia and other long-term health conditions, has had things very tough, especially throughout the last year. She has been dealing with her mum’s decline in health and hospital admissions, alongside her own health issues, as well as the pressures of being a 24/7 carer while trying to hold down a full-time job.
Here is part of that story …
“My mum went into hospital just before Christmas 2022. The week before this we had received a phone call from my mum’s surgery about signing a DNR (Do Not Resuscitate). Mum and I discussed this and had informed the surgery we were considering it; they said they would come back to us in the New Year.
Whilst in hospital Mum’s pulse rate dropped very low and the crash team were called in case she had a cardiac arrest. It was later discovered that she had been given a new medication that had caused this potentially fatal reaction. Her medication was changed and eventually she came out of hospital.
I am so glad I hadn’t signed the DNR as I don’t think the crash team would have been called and my mum might not have been here today, bossing me around and still enjoying trips to the park when she feels up to it....I do worry about myself. I have no children. It does make me wonder what will happen to me in my old age. Will what happens depend on money? Or on someone’s decision on whether they want me around?”
Our hearts go out to Wendy and all of you in similar situations. If anyone wanted to read the full version of Wendy’s story please let us know as she has agreed that carers can read the full version.
If you are worried about anything you have read here in Wendy’s story, here’s a link to information about advance decisions in care planning so you can stay informed:
The Herbert Protocol
There is nothing more frightening or distressing than a family member failing to return home when they should. The Herbert Protocol aims to give you some peace of mind, and make sure youknow what to do should the worst happen. For people living with someone withdementia, this is a huge worry.
The initiative is named after George Herbert, who was a veteran of the Normandy landings and lived withdementia. George died whilst 'missing', trying to find his childhood home.
The Protocol consists of a formthat is given to the police should a person be reported missing. It is complete with a recent photo and vital information to help locate the person.
You will need to:
1. Download the form using the link below
2. Print off a copy and fill in every detail you can
3. Attach a recent photograph to the form
4. Store it securely
In the event you need to report your loved one missing, make sure that you tell the police about your form when you call them. They will instruct you whether to take it to a police station or hand it to a visiting officer.
We will have copies of the form at Dementia Cafés in the future. Anyone can ask their Dementia Support Co-ordinator for a copy if you are unable to print the form at home.
Our new patron, Tony Husband
We approached Tony to ask if he would become a patron knowing that he has a special interest and concern for people affected by dementia. He has worked with dementia charities before, helping to visualise their concerns with seriousness - and with great humour! Tony lives in Greater Manchester and is happy to attend some of our events so that he can share his talent and support. Tony’s own father lived with dementia and Tony drew cartoons illustrating funny and sad experiences that they had together.
Tony also feels the injustices experienced by people with dementia. Tony remembers that his Dad had to use his life savings to pay for all his care needs, when a friend’s parent had his care free of charge because his illness, a brain tumour, is NHS-funded.We look forward to a fruitful relationship with Tony over the next year, and we will be sellign some of Tony’s excellent cartoon books at our fundraising events.
GPS Trackers and how to get one
Manchester City Council's Technology Enabled Care are offering GPS Trackers to those at risk of going missing. You can refer your loved one, refer yourself, or Together Dementia Support could make a referral on your behalf.
The tracker looks like a pebble,and has an SOS button in the middle. It is a small item that could be put on a key-ring, worn as a pendant, or placed in a pocket or bag. The person'slocation is then available on a secure app.
To ensure the person is safe andtheir Human Rights are not infringed, a Social Worker will assess each case. This includes a Needs Assessment and a Capacity Assessment.
Call Manchester Contact Centre to get more information about GPS Trackers andhow to get one.
Manchester Contact Centre 0161 234 5001
Do you need advice on looking at care homes?
Did you know….?
That when you’re looking for a suitable care home you need to ask about “Top-Ups”? A top-up is an amount of money (could be £80 or £100 pw) that the care home can’t charge to the resident (your relative) or to the council but will ask you to pay personally. You might not be able to afford this – and we’re sure you will feel aggrieved that you are having to pay additional money so that your relative can go to a nicer care home.
Did you know…..?
That when your relative is having a financial assessmen tdone – to see how much they must pay towards the care package - you should always list all the disability-related expenditure that you incur. You might be spending extra money for food delivery each week or for continence products. Think ahead of everything extra that the household pays out fo rbecause of the disabilities your relative has. Carer, Norma, found that this reduced the council bill for her Mum considerably
Did you know….?
That the value of your relative’s property is disregarded for the first 12 weeks of their stay in a care home. This is to give you some time to decide whether you are selling the property. After that 12 weeks, you will be asked to sign a ‘deferred payment agreement’, contracting you to pay back the care home fees that the council is paying once the home is sold.
It can be very confusing and stressful when you discover these things for the first time- when you’re already upset about your relative’s move into a care home. We have some good factsheets that we can send out and our staff can explain these things as well.
However, other TDS carers who have been through this process are great experts too. We’ll be discussing all your care home questions at our next CARERS’ ZOOM on Tuesday 7th November at 7pm. Please do join and ask us your questions in advance so that we can find out the answers!Email [email protected] to get the joining details.
South Manchester Carers Trip to RHS Bridgewater
Are you acarer living in South Manchester? Would you like to spend time in the Bridgewater Wellbeing Garden and experience a craft session with the resident artist?The Wellbeing Garden is designed to invite relaxation and reflection, with dedicated areas for mindfulness. You can also bring along the person you care for if you wish and it’s free entrance.
The trip is planned for Tuesday 14th November 2023 from 1.30pm to 3.30pm, but places are limited so please get in touch with Sue on 0738 4784262 or email Sue at [email protected] by Monday 6th November 2023.
If you find it difficult to get to the Bridgewater Garden then we can offer transport.
For information on this and other social events organised by Carers ManchesterSouth go to https://www.carersmanchester.org.uk/events/
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