Dementia friendly singing/book clubs in ED?

[tasha1]

I'm not sure if this is the correct section to post this, so apologies if it's wrong. I would really welcome some advice regarding dementia friendly groups in or around ED. My 76 year old mother is planning on moving in with me in the next couple of months. She has Alzheimer's, with her main presenting problems being language ( finding her words etc). She does have some symptoms of dementia. However, she still functions extremely well, has a positive attitude to life and wants to keep her mind and body as active as possible. She currently lives in Islington where services are incredible. She has amazing support and is very active in a dementia friendly choir and book group. She still attends a book group she's been in for years. They are friends of hers and very understanding but she's finding that group a bit too difficult now. She is an alto singer (non professional) and has only just had to leave her regular choir as she could no longer keep up. Although services and access to groups are excellently in Islington, she's adamant that she wants to move in with me while she will still be able to create an active and positive life for herself this side of the river. I've spent ages googling comparable groups in and around ED and come up blank. I would be so grateful if anyone has any knowledge of groups etc in the area as I don't want her to make the move and for her to find there's nothing appropriate for her to participate in. Many thanks

[hammerman]

Link Age Southwark based at Dulwich Hospital have a website and have groups for people with mid to mild dementia.

You could also contact the Memory Clinic based at King's College Hospital and they might be able to suggest some groups and activities for your Mum at this time.

[tasha1]

Thank you. I'll look into those

[Siduhe]

Have you looked at the Lambeth and Southwark Older Person's Information Directory - https://www.ageuk.org.uk/lewishamandsouthwark/activities-and-events/ ?

As it says, the directory was originally created to make it easier to find services for people with dementia. It's not the easiest to navigate, but this looks like the most relevant section for you - http://directory.ageuklambeth.org.uk/Pages/Subjects?KC=456

[tasha1]

Thank you. I'm not sure how I missed that. There aren't any choirs or book groups advertised but I'll phone them for more information

[curlylocks]

There's a singing group in forest hill if that's not too far

https://arts4dementia.org.uk/?post_type=event&p=1318

If you click on find events in the top right hand corner you can search for other stuff too

[Peckhampam]

There is also a dementia friendly monthly tea dance at West Norwood, just up the road

https://en-gb.facebook.com/singinganddancingforolderpeople/

[tasha1]

Thank you so much. Really helpful suggestions and very much appreciated

[malumbu]

Sydenham garden, actually also in Forest Hill. You may need to be referred by GP, mental health service, social services etc

https://www.sydenhamgarden.org.uk/event/sing-move-dementia/2017-10-20/

[tasha1]

Thank you. That looks perfect for her

[Alan Medic]

Hi Tasha1, I'm hoping to get some knowledge from you. My Spanish father in law is about 88. He often can't remember things like who my wife is when she goes home, for example. So his memory is not good at times. Recently he has fallen over a few from what I hear but it seems he can't see in one of his eyes. I don't know if there is a connection.

His memory loss has just been diagnosed as 'old age'. In your experience (or anyone elses) can that be correct? I have an 90 year old Aunt who is very bright. This 'old age' diagnosis seems harsh/incorrect given many older people still have their senses intact. What do you think?

[tasha1]

Hi AM. I've PMd you

[stringvest]

Alan Medic. Your father in law will need to be assessed. The trouble is, he needs to request it himself, or comply with you that he needs it ... if you go to the doctors and say he is forgetful and HE AGREES, send a mental health nurse from south london and maudsley to do a cognitive assessment. Its just questions like what day is it, who is the queen, what did you have for lunch and some word remembering in the middle. To properly assess his condition, if "not just old age" he will need a brain scan. This can tell if vascular dementia by looking for small bleeds in the vessels, or if its Alzheimers; blockages and brain shrinkage can be seen. Alzheimers is sticky proteins. My dads scored poorly 3 out of 30! They put him on memantine for AD, his score went up to 28 for a little while!

IMPORTANT INFORMATION FOR CARERS: Look after yourself too. I didn't. I couldn't. My dad got worse AD. My mum had vascular dementia (can't abbreviate that can I?) I looked after them both 7 days a week going home at night. They had a maximum social care package of 4 visits per day. BUT ... what were they both up to between visits- ALL SORTS (losing things, hiding meds, hiding soiled things, letting people in, getting lost, falling over ???. Were the carers any good? NO! Mums dinner in a used cat bowl, sitting in her own mess, no meds given - put in file that they were there 45 mins, but really only 10!. They were intruded upon, mum would give anyone that knocked money to go to the shops for her. Dad trying to find his old house and getting lost, looking for his mother ... leaving the gas on and not knowing wife of 40 years. They both got infections & sent to kings. Dad not allowed back, put in care. Mum "borderline capacity" sent home with pendant alarm. I was getting 24/7 calls, as mum pressing alarm for help, just wanted someone to make tea ... 10 ambulances a day. Calls at 3 am, 4 am. from Telecare asking me to go and check on my mum (what they are supposed to do). Carers can't get in 8am, so phoning me to unlock door, else will have to break in, several times a day??? She was locking them out, didn't want them. Neighbours were finding her, phoning me 2am. NIGHTMARE, Toilet blocked, social services wouldn't provide respite, they sent chemical commode in lounge for EVERYONE to use????? Mum wouldn't move from chair got dripping sepsis in legs and Social services had to section her and the police had to man handle her to remove her to the ambulance. She died. (So now all about pressured into selling house to pay care bills ...)

DAD GROOMED: Alzhiemers got worse. Whilst at home with mum. Friendly neighbour said would take paper in mornings and make sure they were ok. I thought this was very nice and give me a bit more time to shop or get to the doctors. Got OVER-FRIENDLY and WEIRD. Was there all the time, spying to be there when I wasn't. Being dads new best friend and telling him he hadn't got AD, didn't need carers and that he would dispense him painkillers and put cream on his bottom instead of the nurses. The neighbour started putting his name down as "go to person/next of kin" with social services ,care agency, district nurses behind my back etc. I got a call from a nurse looking for the neighbour so she could discuss my mothers incontinence with him. My dad started treating me with suspicion because the neighbour was grooming him and telling him people were lying about his forgetfulness etc. I thought it was very odd and got in touch with social services. I asked the man not to be there so much but he told ME to F off and prove to him my parents illness????? I GOT THE POLICE ON HIM 3 TIMES to remove him, they told him to stay away.

I lost nearly 3 stone, exhausted, mentally fried, rashes - VERY ILL at this point, the grooming thing nearly finished me off.

Dad recently died of AD. He got to end stages when they stop eating or functioning. Very cruel. The hospital would hydrate him every other day, to try to discharge him to end of life care (they got all that wrong, phoning me to say they sending him to a home I hadn't agreed to or seen), they said they were discharging him on the day he died? MORE STRESS ....

Social Services: well meaning most of the time, but clueless in reality and make a lot of things worse.They think they always know best, and act in the "best interests of their client" when doing so leads to all the above .... mostly interested in how you are paying for it, and keeping people at home cheaply and poorly. If you have two parents with mental illness, they will each get a community mental health nurse, a social worker each, district nurse so you have six people to deal with regularly, then theres their doctors, solicitors, carers, ambulances, neighbours, police. They will tell you to take your dad to a centre miles away, pay ?47 per day - who is looking after mum? They will tell YOU to go for counselling to help you deal with your stress and join a carers group, whilst no-one is looking after your parents? If either have hospital appointments, you get to them for 7am to get them both ready, cos you can't leave either alone .... then get back at 4pm? Then do it again the next day.

THINGS YOU DO FOR ALZHEIMERS/DEMENTIA - cook, clean, bath, correspondence, shop, pay bills, gardening, laundry, see to pets, protect, write their xmas cards, take to hospital, call doctors in, be at meetings with social services, fix boilers, supervise tradesmen, get prescriptions, decorate .... supervise delivery of aids, commodes, grab rails ...

As they age they get more ill, falls, hearts, chest clinic, cataract ops, pacemaker checks, bone clinics, fracture clinics, glaucoma clinics, elderly persons clinics.

Carers: Had one or two good one in two years. The rest were total rubbish. Some found arguing over their shifts instead of doing things and one rooting round the china cupboard.

VERY IMPORTANT INFORMATION:::::::

CARE FUNDING A BIG SECRET: They WILL NOT tell you what you need to know. DO NOT GO ALONG WITH WHAT THEY SAY AND MAKE YOU SELL YOUR PARENTS HOUSE, like I was made to. There is social care paid for by the council (for people with no money or property, or can be cared for at home with home-helps etc), there is nursing care paid for by the NHS.There is also residential care and EMI residential care (elderly mentally impaired). If your relative needs residential care they may be eligible for Continuing Care Funding, their needs to be an assessment by the Commissiong care Group (CCG),ASK FOR IT, THEY WILL NOT VOLUNTEER IT the assessment takes into account, cognitive, behaviour, nutrition, safety, risks (falls, infections) , welfare, medication. If your relative has to go into care because they are incapable of living alone, them you COULD be eligible for funding. You may not have to pay ANYTHING. I am seeing a solicitor, having sold the house and paid ?90K, for dads care. ITS A MINEFIELD. If you are told you are not eligible and need to defer payments: this means the council pay the bill for you until you deal with the estate. THE COUNCIL are charged LESS than PRIVATE FEE PAYERS.. for instance woman sitting next to dad, costing council ?2400 per month. Dad paying his own ?4040 per month for same care. Then if you are private funded you will have to pay for carer to accompany "dad' to appointments ?20 per hour/?100 per visit. If you are council funded YOU GO FREE?

Being an only child, it was all down to me. No-one to share the load. I hope this information is of help, I cannot be a good example of how to do anything, I am more of a terrible warning of the reality I am afraid.

If you have any questions, please ask. I might know.

Best of luck.

[Alan Medic]

Thanks stringvest. Sounds like you went through a nightmare.

[Pugwash]

Kings have a very good team of Dementia Nurse Specialists and are based in the Betty Alexander Unit. GP can refer.

Mental Capacity Assessments can be carried out by GPs/Nurses/Social Workers/OTs as to whether person is able to understand, recall, weigh up and communicate decisions. If GP feels after seeing the older person, that they do not have the capacity to make decisions, then in the person's best interest - they can be referred to a specialist clinic.

I recommend that anyone who wants to find out more about care and nursing homes, the costs, whether they are eligible for social services funding, what happens if you are owner occupiers, deferred payments, 12 weeks disregards etc to seek out Age UK fact sheets. You can down load them or request copies. Also recommend Independent Age publications.

Telecare is more that just a pendant alarm, you can get various door alarms, movement sensors, etc - GPS tracking systems etc.

Personal Budgets - If want to provide own carers - ask for assessment by social services for this, they will calculate how much care your relative needs i.e 4 hours per day and calculate this into a weekly budget which means you can employ carers of your own choice. Obviously I am simplifying this information but there is a lot of information out there (especially on line) which goes into greater details.

[curlylocks]

Hi Tasha this is starting up soon, not sure whether dementia friendly though http://www.loughboroughjunction.org/new-free-singing-group-at-longfield-hall-starts-thursday-26-april-2018