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- TDS Newsletter May 2023
TDS Newsletter May 2023
*|FNAME|* Here is Your TDS Newsletter May 2023
in May’s Issue…..
Welcome message from Sally
Dementia Action Week - Join our Fundraising Campaign
Ghyll Head Carers Weekend - Last few Places
Brain Health Support
Dementia Carers Count Events
Anthony’s Story - The story of an LGBTQ+ Carer
Buy Yourself a Forget Me Not
Carers’ Social - Join Us!
Tips for Gas Safety Checks
Elders Mondays at Royal Exchange Theatre
Join the Wythenshawe Cycling Group
Our Dementia Group Leaders
Welcome to your May newsletter
I’ll keep it brief this time as I’d prefer you to read the article by carer, Anthony, below. He flags up just how difficult it is to understand and assertively navigate the care system, trying to get the best service for your relative. I will raise this in Manchester’s Dementia Steering Group, which is trying improve local services
As I hinted in the last bulletin, three voluntary sector organisations, of which we are one, have now been asked to lead on shaping the ‘Living Well With Dementia’ aspect of support in Manchester. We will be setting up a reference group so that everything that is currently available is reviewed by you and everything that needs to be there is decided by you. I hope some of you will get involved.
Finally, now that it’s finally getting warm and the days are longer, do consider how you can do something active - to look after your own brain health – and just to make you feel better!
We have a whole fundraising campaign coming up in Dementia Action Week (15-21 May). It involves asking people to ‘Pedal for People with Dementia’. We hope to get many of our members to Alexandra Park to use the accessible bikes. We’ll let you know the times and days in case any carers want to have a go too. Or you can come to Asda, Hulme on Friday 19th May where we’ll have 2 static bikes for us to take turns to pedal. We really want to raise £5,000 to get us closer to buying a new minibus to replace the not-fit-for-purpose Torneo.
As always, any questions, please contact admin below:
Fundraise with us
We're raising £1 for each of the 5,000 people living with dementia in Manchester, but we can't do it without you
We need funds for our vital services, and we need you to step up, saddle up and get pedalling! Join us for our Stationary Bike Challenge, or set up your own fundraiser and walk or cycle in your own time.
Currently, Together Dementia Support owns two vehicles. One of them, our Ford Torneo, is becoming very unreliable and desperately needs to be replaced. Between July 2022 and January 2023, it cost over £2,000 in maintenance and repairs!
The wonderful Edward Gostling Foundation will donate £10,000 toward the cost of a new minibus, but we need everyone to come together and help us raise the rest of the money! The minibuses are the only way many of our members with dementia can attend their Friendship & Activity support groups or access support services.
The money we raise from the Pedal Together for People With Dementia campaign will contribute toward the cost of a new vehicle, as well as the continued provision of our weekly Friendship & Activity Groups and Together @ Home service
Donate, fundraise or just come along and support us on the day from 10am-7pm on Friday 19th May. More info below:
Book Now for our Ghyll Head Carers Weekend - Last few places
Friday 30 June - Sunday 2 July 2023Two nights of fun, adventure and respite for you to reconnect with yourself and others!TDS is taking a small group of carers to the outdoor activity centre at Ghyll Head.Ghyll Head Activity Centre is set in the heart of the idyllic Lake District. You can try everything from canoeing to zip wires, or if you're a little less adventurous there are nature walks, rambles, or just peace and quiet.We have managed to keep the weekend as cheap as possible and it will only cost you £150. This includes:
Accomodation
Food
Transport
Payment accepted via cash, cheque, bank transfer or we can email you a link to pay by card online once your booking has been confirmed with Anna.Book via:
Email: [email protected]
Phone: 0161 226 7186
Brain Health
Did You Know……
Research suggests that up to 40% of cases of dementia are linked to modifiable factors we can influence ourselves.
For those who would like to improve their brain health, here we look at some of the changes we can make to keep our brains healthy and to reduce our risk of developing dementia.
For a healthy brain and heart:
· Don’t smoke
· Keep cholesterol and blood pressure under control
· Be active daily and exercise regularly
· Maintain a healthy weight
· Eat a healthy balanced diet
· Drink fewer than 14 units of alcohol per week
With this in mind, we’ve secured a grant from Dementia United’s Big Brain Health Fund. We’ve decided to use it to:
1. Enable more people living with dementia and carers to get out and walk
2. To perhaps lower your stress levels and improve your balance by learning TaiChi
Three of our Friendship & Activity Groups will have Tai Chi sessions provided by local Tai Chi teacher, John Higginson. John will also attend the Carer Training course and lead some Tai Chi there.
We’ll also record a Tai Chi session and put it on our website so that you can do the 20 minute routine whenever is convenient for you.
We’ll also be taking members who attend the North Manchester Friendship & Activity Group for walks in Crumpsall Park.
We know how hard it can be to make yourself step out and go for a walk as you’re tired, on your own, or feel too unfit to join a group. So we can offer a few carers some walks where and when it suits you.
You can have a one:one walk with, Anne, our sessional Support Worker between now and end September. If you’re interested, please ring the office to book a walk. Anne can come to you and walk with you for as long as you wish (up to an hour).
We really hope that all of you who are carers can make time during your week to do one small thing for your own health and wellbeing. And if we can help you increase your daily exercise please tell us how we can help.
Then share your positive stories. Let’s encourage each other to make the change.
If you want to read more about improving your brain health, click the link below.
Dementia Carers Count - May Events
Dementia Carers Count is a national Carers charity that offers a range of free services to help family carers understand more about dementia and to connect with others in a similar situation. They offer practical advice on the reality and challenges of being a carer. They have some sessions upcoming that may benefit you.
Dates
Friday,5 May 2023
Monday, 6 November
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Friday,12 May 2023
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Wednesday,17 May 2023
Monday, 17 July 2023
Wednesday, 20 September 2023
Friday, 17 November 2023
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Wednesday,17 May 2023
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Tuesday,23 May 2023
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Wednesday,24 May 2023
Monday,24 July
Wednesday 27 September
Friday, 24 November 2023
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Wednesday,24 May 2023
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Friday,26 May 2023
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Friday,2 June 2023
Friday, 22 September 2023
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Times
1:30pm
6:30pm
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10:30am
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1:30pm
6:30pm
1:30pm
10:30am
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7pm
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12:30pm
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1:30pm
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1:30pm
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Anthony’s Story - An LGBTQ+ Carer
My mum was formally diagnosed with dementia at the beginning of 2019, I have been caring for Mum since then including assisting with all her activities of daily living and in the last three years more personal care including preparing meals, shopping, bathing and showering, preparing her weekly Dossett boxes for medications, taking Mum to hospital appointments, overnight stays, and liaising with all the relevant community and social care aspects that Mum requires assistance with.
There are many agencies and support groups available but there is no one consistent key worker that can focus on Mum's long term care needs and therefore this is down to me! This means going around on a nearly day-to-day basis and the bi-daily phone calls to check she is safe and well. This is a constant struggle and truly exhausting to the point where it seems impossible to make any time to look after my own physical and mental health.
More recently in December 2022, Mum had a stroke which has been life changing for her and us as a family. For me personally being an LGBTQ+ carer makes me more vulnerable to this situation as I can sometimes be seen as an individual who has no other responsibilities or dependents and because I am a NHS worker, it is presumed by health & social care professionals that this should be my role rather than just being able to be my Mum’s son. On top of my full-time job, I am equally doing full-time hours caring for Mum to the point where I feel my life for the last 4 years has been solely around caring for Mum and my life has been paused. There has never been a time in the last few years when someone has been there for me, or asked how I am feeling or coping but instead I am expected to "just get on with it".
Getting support
In 2020 I was fortunate enough to join an LGBTQ+ carers project in Manchester where we have monthly online meetings and this feels like the only place where I was truly able to express myself as a gay man and a carer. Having a support network enabled me to give myself some time to focus on what is important to me, in a safe space where there is no judgement from other LGBTQ+ carers. It has made me reflect on the amount of care I do provide to my mum and that groups like this are needed massively to hopefully support all LGBTQ+ carers in the future and to provide social meetings, walks or even short breaks for us. Unfortunately, the network group I was attending over the last couple of years has had its funding pulled now, so not ideal.
For me the biggest challenge to date is trying to get a key worker to help Mum and myself go through all the complex challenges along this journey such as making sure Mum is receiving the correct benefits, holistic support from the GP and wider community services to enable Mum to continue to live at home independently. To have access to one social worker rather than this constantly changing to on-call social workers who do not understand Mum’s care needs and therefore me having to explain Mum’s situation every time we ring them. Getting adequate and supportive care packages in place to keep Mum safe in regards to her activities of daily living. The amount of paperwork that I have to fill in is so difficult and complex to understand including things like financial assessments, arranging power of attorney forms, and applying for support with funding for essential care that Mum needs. It all feels very invasive and improper, yet the carer is just left to it all which has had a profound impact on my own health and well being and continues to do so.
More needs to be done
There needs to be more support and places where carers can continue to do their role but at the same time be able to look after ourselves and more importantly our mental health and well-being. Even though I am registered as an unpaid carer with my own GP they have never contacted me to see how I am. I have been taking Mum to the same GP as me for the last 10+ years and although I have had a Carers Assessment this needs to be offered to all carers to give them the best emotional and financial support that is needed.
To summarise, my mum is currently in a nursing home as she now needs round the clock care but this doesn't take away any of the daily stresses that I face. For me personally this has proved even more challenging than before Mum’s stroke when she was at home. I now spend most days, more so than before, chasing follow up calls to doctors, the nursing home, and health & social care workers who have assessed Mum as not having a "primary health need" and therefore Mum is now most likely have to pay for her own care going forward which will involve selling her home that she has lived in for more than 60 years.
The one thing that sticks out to me is that there is minimal support out there, not only for LGBTQ+ carers, but for all carers and we are just left to it without any professional, emotional and physical support for our own mental health and overall well-being. Therefore, we continue to struggle being carers and without the support, understanding and financial backup from local councils this will only get more difficult until carers are heard and treated fairly. My beautiful Mum did not choose to have dementia or a stroke and yet I have to fight to get my mum the best care she deserves without any help and so our journey continues.
More from Anthony is also below:
The struggle to understand and navigate the system of ongoing care
For us, I think the stressing factors happened from when Mum was in hospital and the hospital couldn’t even do a full Best Interests meeting with a Social Worker present due to lack of resources and therefore this was done by a nurse from the discharge planning team, OT & Physio.
Mum was not even assessed or reviewed by the Dementia Specialist Nurse whilst in hospital for 6 weeks as this post hadn’t been filled.
There was a lot of pressure put on us as a family from the discharge planning team to find Mum a discharge to assess bed in a Nursing home but we were told we had to find one suitable for Mum ourselves and then we had to let them know where we had chosen to make sure the NHS would agree to the home we chose. This all had to be done in a very short space of time (7days).
Even once we found Laurel Court, we still didn’t know what would happen next until a Social Worker got in contact 4 weeks after Mum was there. We didn’t know who to contact initially re advice and guidance about Mum’s options going forward and if we were going to have to pay for anything.
After I pushed for Mum to have a mental capacity assessment done and a review in the nursing home by the OT & Physio (to see if mum had improved or not) we were told Mum could not return home as it would be safe, but there was still nobody to support us as a family with this to understand and get our head around all the health & social care jargon.
We then asked for a Continuing Health Care assessment for mum to be told she wouldn’t pass this from the beginning. However, Mum did pass the screen which triggered a full CHC meeting to go through the decision support tool which determines if Mum should receive full CHC funding.
No support again was given to us for this meeting and we had nobody in the meeting to support and advocate on Mum’s behalf to help us through this massively stressful meeting which lasted 3 ½ hours. The decision was made by a nurse from CHC, Social Worker, and an agency nurse from the nursing home who hardly new mum.
After 10mins they brought us back in to say Mum did not qualify for funding except for the nursing care component (£209). Since then we still have no support and three weeks later are still waiting for the written assessment report. We’re also waiting for a financial assessment to see how we will pay for Mum’s care.
Mum never chose to have Dementia or a Stroke yet this doesn’t seem to be important enough to qualify for NHS funding.
Do get in touch with Anna, our Carer Support Lead, if you need help in understanding this complex system of finding residential/nursing care.
Anthony is going to get free advice from a national charity called Beacon. They specialise in giving advice and advocacy around CHC funding
There’s also a great factsheet, produced by Age UK, that explains all aspects of how care is paid for. Ask us if you want us to e-mail or post it to you.
Carers Fitness Video Sessions
We know that when it comes to being active, time constraints and other barriers mean it can sometimes be challenging to be able to do full-length exercise sessions or go to leisure facilities at a fixed time every week. So Carers UK created a series of short video workouts and bitesize functional exercises that feature real carers alongside instructors. The videos will help you to be active in a way that works for you, and at a time that’s convenient, while offering an inclusive and fun way to feel the physical and mental benefits. These video workouts cover a range of activities and are inclusive of all ages and fitness abilities.
Buy a Forget Me Not
Only £15.99!
Loving memories cast in steel by the British Ironwork Centre.
These beautiful Memory Blooms have been exclusively crafted for Together Dementia Support.
We have a limited number and they may not be re-stocked once sold out. Order yours today and brighten up any corner with the memory of your loved one.
Carers’ Social - Join Us!
Thursday 18th May at 7.30pm
Some carers are getting together for a meal and chat.
If you’d like to come please let us know so that we can book a big enough table.
Venue: Christie Fields (Beefeater restaurant), (corner of Barlow Moor Rd and Princess Parkway), 7 Derwent Ave, West Didsbury M21 7QS
If you’d like a short walk first, you can meet Sally and others in the car park of Chorlton Water Park at 6.45pm for a lap around the lake before going for the meal.
Again, let us know if you plan to come for the walk.
Top Tips for Gas Safety
If you're thinking about doing things differently at home to bring down the price of your bills, it's important to remember to do so safely. Remember to:
fit a working smoke alarm on every floor of your home, so you’re alerted quickly if there is a fire
make sure you know the quickest route out in case of a fire and ensure it is clear of clutter
ensure you have a gas safety check each year for your boiler or appliances
find out if you are eligible for a home fire safety check https://www.manchesterfire.gov.uk/your-safety/hfsa/
Elders Mondays at Royal Exchange
Want to meet new people and feel more creative? Curious about theatre? Want to feel inspired?
Then Elders Mondays Inspire at the Royal Exchange Theatre might be for you.
On the first and third Monday of the month (excluding Bank Holidays), Elders Inspire sessions 11:00-11.40am are a chance to chat with some of our Elders, take part in creative activity (don’t worry you don’t need to be an expert) and find out how you can get more involved.
“Coming here, you’ve got a sense of purpose, it’s about belonging to something.”
“I feel so happy, so confident, so creative, and I feel so safe and respected. You have helped me to shine”
To find out more and arrange a visit, call Katrina on 0161 615 6721 or email [email protected]
Inspire sessions are free to attend and we may be able to help with travel costs through our Arts Pot.
Join the Wythenshawe Cycling Group
A small friendly group of older people who enjoy cycling for fun are looking for new members. The group cycle twice a week from Wythenshawe Park Athletic Track, on Tuesdays and Thursdays at 10.00am. Cycling is mainly off the road and the group always stop for a drink and a chat.
The numbers have decreased recently so new members are very welcome to help keep the group going.
Bikes and helmets can be provided if you need them but you must know how to ride a bike.
A nominal £1 is charged each ride to fund the bike storage and pay the annual insurance cost.
For further information please contact Christine Alase on 07443492641
Our Dementia Group Leaders
Daphney Thompson
‘Games for The Brain’ Friendship & Activity Group at Old Trafford.
Dorothy is away from work at the moment and is not contactable. Daphney, our Dementia Support Worker, will be covering this group.
07579 831 791
Jo Brizland-Cullen
Together @ Home Project Co-ordinator
South Manchester Friendship & Activity Group
Fab Forgetful Friends
Zsuzsi Földes
Moss Side Friendship & Activity Group
East Manchester Friendship & Activity Group
Anna Hulme
Carer Support Leader
Dementia Cafés
Carer Training
Rukaiya Pandor
Pyaari Yaadein Friendship & Activity Group
Mike Taylor
Walk & Talk - Alexandra Park
North Manchester Friendship & Activity Group
Wythenshawe Friendship & Activity Group
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