Hi, my name is Mandy but it was already taken when registering.

[Oaktreebee]

I moved to Edinburgh last year to support my husband, a stroke survivor to help my MIL with onset dementia. I'm exhausted and have very little support. Yesterday the clinician rang saying she's sorry but the Alzheimer's society won't provide community support and she too now has to refer me to our GP and stop treating my MIL. because we all moved a mile up the road so she's no longer in their catchment area.
Social care have taken since September to provide an assessment to include her diagnosis and haven't increased her personal care
support hours so will still only receive an hour help each morning. This is on top of having previous payments suspended and still not reinstated or having received a report on her previous (frailty) diagnosis for her care needs, which was 15hrs personal care. Furthermore despite taking several months to be referred to dementia day care, those centres still haven't received the referrals so this making my 91yr MIL depressed as she has little social connections.
I've developed fibromyalgia and suffer with cluster headaches.
I don't know how to resolve the situation with social services, the medical team or obtain community support.
Unfortunately I have not had time to develop my own social network having no family or friends in Scotland.
Any recommendations or sign posting me on would be gratefully received

 

[Cat27]

Welcome to DTP @Oaktreebee
What an awful situation for you all to be in. I would ring the local Social Services Crisis Team & tell them that you just can’t cope anymore.
Please keep posting as you’ll get lots of support here.

 

[marionq]

Could you phone Alzheimer’s Scotland directly and ask to speak to a Dementia Advisor for your area. I have found them in the past to be excellent. These are difficult times but I don’t think they would let you down.

 

[Izzy]

I agree with @marionq - give Alzheimer Scotland a ring . Their website gives some information, along with their helpline number. You’d probably find local numbers there too but I think phoning the helpline might be useful-

Chief Executive update | Alzheimer Scotland

Updates from Alzheimer Scotland about our work during the coronavirus spread.

www.alzscot.org

I’m glad you’ve found this forum - keep posting.

 

[Oaktreebee]

Welcome to DTP @Oaktreebee
What an awful situation for you all to be in. I would ring the local Social Services Crisis Team & tell them that you just can’t cope anymore.
Please keep posting as you’ll get lots of support here.

Thanks Cat, unfortunately if I do that they'll just put MIL into emergency respite again. It cost us £1200 a week last time and she fell 4 times in first 6 days, I pulled her out after 10 days because she'd gone down hill both physically and cognitively. I called out her new GP, she'd got chest virus and slight fever. Think I need to go back to the MP again ?

 

[Oaktreebee]

Thanks Cat, unfortunately if I do that they'll just put MIL into emergency respite again. It cost us £1200 a week last time and she fell 4 times in first 6 days, I pulled her out after 10 days because she'd gone down hill both physically and cognitively. I called out her new GP, she'd got chest virus and slight fever. Think I need to go back to the MP again ?

Actually it cost total of £2400 for fortnight's care. She'd lost confidence and her mobility went right down too. Fortunately I've found brilliant physio, and I got her back on track with her hydration and using memory aids.

 

[Oaktreebee]

Welcome to DTP @Oaktreebee
What an awful situation for you all to be in. I would ring the local Social Services Crisis Team & tell them that you just can’t cope anymore.
Please keep posting as you’ll get lots of support here.

Thanks Cat, unfortunately if I do that they'll just put MIL into emergency respite again. It cost us £1200 a week last time and she fell 4 times in first 6 days, I pulled her out after 10 days because she'd gone down hill both physically and cognitively. I called out her new GP, she'd got chest virus and slight fever. Think I need to go back to the MP again ?

Could you phone Alzheimer’s Scotland directly and ask to speak to a Dementia Advisor for your area. I have found them in the past to be excellent. These are difficult times but I don’t think they would let you down.

Marionq I'm not sure how they can help ? Last time I rang to see if they could help the volunteer just signposted me onto others that I'd used before. I'll ring and try again tomorrow.
I'm just so tired and emotionally drained. Doesn't help with the present virus situation but at least I'm not the only person struggling with change ?

 

[Wordy]

You can make an appeal to social services to insist on a new assessment to meet her new needs quoting words such as duty of care. I had exactly the same experience. It won't be done until coronavirus is over but it may give you hope. I advertised for a private carer with up to date police checks who is coming to help my mum with personal care. This has helped my tolerance levels so I have energy to do some activities, structuring the day as mums are doing with home schooling. It's costing us £100 a week which is cheaper than agencies and can arrange times to suit mum rather than when an agency can fit her in. Visits are for the full time as well. I interviewed as I would any employee for their experience, qualifications and approach. Maybe worth a shot?