• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can access this area by going to the Health and wellbeing forum >here< or you can directly access the area >here<.

A lifelong friend and me

Palerider

Registered User
Aug 9, 2015
1,427
North West
Spoke to my niece tonight, her wedding is next week on Weds 30th October, she is upset that I may not be able to go. She has hardly any close family members left and it would mean alot to her if I attended and I am gutted to have to tell her that unless I can find 24hr care for her gran I won't be able to go. I haven't asked for much in this journey, but just for once I would like someone to waive a magic wand and let this happen
 

Splashing About

Registered User
Oct 20, 2019
405
Spoke to my niece tonight, her wedding is next week on Weds 30th October, she is upset that I may not be able to go. She has hardly any close family members left and it would mean alot to her if I attended and I am gutted to have to tell her that unless I can find 24hr care for her gran I won't be able to go. I haven't asked for much in this journey, but just for once I would like someone to waive a magic wand and let this happen
Sorry to read this. A complete lack of respite care was available to us as well
 

Lynmax

Registered User
Nov 1, 2016
370
Last November our case was considered urgent. I have dealt with temporary Case Workers and should have a visit from a long term one on Monday.
Our daughter emailed MP about a week ago, a reply was received from an assistant who asked for more details.
My daughter gave me a copy and said I could pursue if I wished.
I composed a email explaining the present situation and past history.
I feel it is important we take every chance possible because every time we loosen a brick in the wall it is important for everyone.
Remember the Berlin Wall? When it was built it seemed invincible then suddenly it fell.
We must keep chipping away, it is all so unjust.
I like your reference to the Berlin Wall, I remember at the time thinking that nothing would happen as a result of all the protests then all of a sudden there were pictures on the news of it being torn down.

I liken it to the power of water ( living in an area where roads are regularly flooded), it's surprising how powerful something as innocent as rain and running water can be in washing away barriers that have stood strong for years. Is it time for us all to protest for changes in dementia care and funding?
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
This was the response I got from the Minister for Social Care in September this year:

Dementia is a major health and care challenge of our time, and we are working to improve care and support to make this the best country in the world to live with the condition.
It will be interesting to see what she means by this....
my husband tells me that sarcasm isn’t effective in getting results so am now lost for words.....!!!!!

oh ok .......REALLY!! that’s all the minister has ....... come round to a carers home & do 24 hrs you’ll soon have more to say as a representative of the people!!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
I like your reference to the Berlin Wall, I remember at the time thinking that nothing would happen as a result of all the protests then all of a sudden there were pictures on the news of it being torn down.

I liken it to the power of water ( living in an area where roads are regularly flooded), it's surprising how powerful something as innocent as rain and running water can be in washing away barriers that have stood strong for years. Is it time for us all to protest for changes in dementia care and funding?
Yes I think that the time has come, too late for many people but at least our PWD will leave a legacy.
 

AliceA

Registered User
May 27, 2016
2,696
Yes, a dripping tap wears away the stone eventually. It is also a lesson a thing as soft as water has such an effect. Sometimes a soft approach works so much better perhaps like water it gets into the cracks?
Anger can be counter productive, people shut off in defence.
We need a modern Trojan Horse perhaps?
We could start an inventive thread on that!
I was in a peaceful demonstration once, the police came and were offered tea and cake? Some did not know what to do at first.
Not that many of we Carers have time to go to anything.
So any ideas anyone?
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
I think a mass emailing season to the health minister by as many from TP who want to participate. Co including with setting up a petition for parliament to discuss dementia, care policies & how it’s funded.

obviously after brexit as otherwise it will get lost in all the babble!
 

Palerider

Registered User
Aug 9, 2015
1,427
North West
Well just of the phone again, still nothing. They are going to chase again today. I think its the area as well, we are quite rural so there aren't that many CH's that would have immediate respite places I guess.

I spoke too soon on another thread yesterday -last night mum wandered round the house from midnight till daylight and is still wide awake, which means her behaviour will be exacerbated even more today.

Its my nieces wedding on Weds and it looks like I won't be going to that either.

I'm on a downer today I'm afraid, feel rock bottom:(
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
Well just of the phone again, still nothing. They are going to chase again today. I think its the area as well, we are quite rural so there aren't that many CH's that would have immediate respite places I guess.

I spoke too soon on another thread yesterday -last night mum wandered round the house from midnight till daylight and is still wide awake, which means her behaviour will be exacerbated even more today.

Its my nieces wedding on Weds and it looks like I won't be going to that either.

I'm on a downer today I'm afraid, feel rock bottom:(
oh my lovely you & me both! We need a dance out ! A la Greys anatomy- when life gets sticky out some music on & dance like no ones watching- the dogs don’t count! Xx
 

Palerider

Registered User
Aug 9, 2015
1,427
North West
Confirmed, mum has a chest infection. More antibiotics, but it may explain last nights wandering, which is unusual for mum or it could be the disease as well
 

Palerider

Registered User
Aug 9, 2015
1,427
North West
Things are getting rediculous, now I'm wide awake and mum is sound asleep. Earlier my heart rate was racing and I was feeling 'odd', so I checked it 110 bpm roughly, took my bisoprolol and it did make me feel better, less fluttery. I woke about 20 mins ago and tried to roll over and go back to sleep, but couldn't -so here I am again. I think this is now down to the fact I am constantly worrying.

My work lead is coming to see me on Friday, social visit to see how I am and no doubt to try and help plan things from a work point of view, so thats a relief. I've missed being at work, in some ways its a sanctuary from this, but I can't leave here until I can make sure mum is safe and not alone.

Mum seems better tonight, so hopefully her abx are having some affect, heard her coughing a bit, quite rattly but she didn't wake.

I hate being like this, its so not a good place to be.
 
Last edited:

AliceA

Registered User
May 27, 2016
2,696
Hope you managed some sleep. Life is so erratic with dementia.
This 'rural' area has been use in our case too.
I feel it is a excuse supported but invisible county borders being in the mix. Perhaps it is not that there are no places but places at the right price for SS.

I hope your work lead has some good support in mind. Just wish I could help you more. Just remember you are doing your best, you can do no more. X
 

Woo2

Registered User
Apr 30, 2019
1,086
South East
I am sorry to hear how you are feeling @Palerider and also wished I could help you . As AliceA so rightly said you are doing your best . Thinking of you both . X
 

Palerider

Registered User
Aug 9, 2015
1,427
North West
Just off the phone to SS, they say if nothing comes in the next day or two they will step it up emergency respite from urgent. I am not quite sure what the difference is??
 

AliceA

Registered User
May 27, 2016
2,696
Good luck! I find the council only want use a commissioned bed because of price. Their pricing is unrealistically low. I am paying poker at the moment with ours. I hope it will not be too far away. X
 

ITBookworm

Registered User
Oct 26, 2011
456
Glasgow
Just off the phone to SS, they say if nothing comes in the next day or two they will step it up emergency respite from urgent. I am not quite sure what the difference is??
I would guess the "Emergency" rating is how they would have to react if you had fallen under the proverbial London bus and there was no-one at all to look after your Mum. The "Urgent" rating has allowed them to drag this out because they know you are there to do the caring. I am mad on your behalf because all this does is wear you down further and make it more likely that Mum will need full time care rather than respite :mad::mad: The councils only seem able to consider their budgets and not the real people who need help!
 

DesperateofDevon

Registered User
Jul 7, 2019
2,658
Lucky we don't have any dogs @DesperateofDevon

Its never ending, just noticed mums cough is worse and now she's really productive with it -so its back to the GP, waiting for a phone triage
It’s always a long wait
Good luck! I find the council only want use a commissioned bed because of price. Their pricing is unrealistically low. I am paying poker at the moment with ours. I hope it will not be too far away. X
How sad is it that best interests only apply after financial interests for SS. I couldn’t live with myself if I made those decisions daily. Sadly it’s finances & politics that dictate care plans - certainly not PWD bests interests!
 

Members online

Forum statistics

Threads
113,396
Messages
1,660,014
Members
64,268
Latest member
DebbieC61