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A lifelong friend and me

Palerider

Registered User
Aug 9, 2015
1,932
North West
watkin.observer
@Palerider I hope you get a response soon. It is good that they are forwarding it on, just hope they are not passing the buck.
My Mum is now on end of life care and I and other close family members can visit, with prior arrangement. We have to wear masks, gloves and aprons and have our temperature taken on arrival. We can then go and sit near her in her room - she is now bed-bound.
We access the unit by a back route to avoid other residents.

Sadly Mummy has had a sudden decline and is now not eating or drinking. She may rally but we don't really know how long we have. I have to say the home have been great and I was able to visit as soon as I was notified of the decline. I feel so sad to be in this position but also for those who are not being able to visit.
I do wonder about the local interpretation of the rules by individual homes. Sadly, the recent national guidance wasn't a lot of help.
Hi @Helly68 Sorry to hear about your mum and glad you can visit as you please. Sadly the guidance is poor and non-directional so many CH's in the area are misinterpreting it. Hoping for resolution soon
 

Palerider

Registered User
Aug 9, 2015
1,932
North West
watkin.observer
Does anyone remember my campaign letter for improving social care? Well after many months I finally have a reply so here it is:

Good Morning,
Thank you for contacting me about adult social care.You make a number of valid points, and I have raised your concerns with the Department for Health & Social Care.
I believe we must all receive dignified care in old age, and the Government is committed to ensuring that the most vulnerable in society get the support they need.
While it is important to note that more than 4 out of every 5 people in care receive care from good and outstanding organisations, it nevertheless remains clear that more needs to be done to tackle this serious challenge.
This can be achieved in part by securing a long term funding solution. Since 2015 local authorities have had greater flexibility over the use of the council tax social care precept. This allows them to choose to raise extra money, as well as retain savings from the New Homes Bonus, totalling £240 million. In the Spending Round in September, an extra £1.5 billion was made available to councils for adult social care services. This funding should be viewed as a significant down payment as we move towards a long term funding solution.
Money alone will not fix the problem and reform is needed to encourage high standards across the whole country. It is vital for us to consider ways of better joining up health and care services, and the use of the Better Care Fund to assist local government and the NHS with the implementation of integrated health and care services is encouraging in this regard.
The Conservative Manifesto made it clear that we must build the same level of cross-party consensus on social care that we have already built on the NHS. I stand by this commitment, and urge my colleagues and constituents of all political beliefs to take part in a conversation about establishing a care system fit for the 21st century.
Thank you again for taking the time to contact me.
Kind Regards,
Esther

I have responded.
 

Helly68

Registered User
Mar 12, 2018
701
Hi @Helly68 Sorry to hear about your mum and glad you can visit as you please. Sadly the guidance is poor and non-directional so many CH's in the area are misinterpreting it. Hoping for resolution soon
Funnily enough, the care home are now backtracking.....need to speak to the manager tomorrow and see what she says.
 

Palerider

Registered User
Aug 9, 2015
1,932
North West
watkin.observer
In double digits, maybe?
😉😙😇
LOL
This is my response:

Dear Esther,
Thank you for your response at a busy time in government, and it is warmly received.
I sincerely hope that change does come in the next year and following years in the delivery of our social care system. I agree the solution is not just about money, but how social care is funded does have a huge impact on care and creates significant issues in what are some of the most difficult decisions and experiences people with dementia (PWD) and their families can endure.
Living with advancing dementia is one of the most challenging and all-consuming things a carer can do for a loved one. I tried to keep mum at home which was her own wish, but as in many cases I could not support that wish on my own with no real support in the home as her Alzheimer’s progressed. Solutions in dementia social care are difficult. Without adequate support which currently is thin on the ground or completely none existent, carers are left isolated with very significant challenges which penultimately lead to Care Home or Nursing Home placement. Few people take such a decision lightly.
In my own journey and experience I can say hand on heart after 30 years of working in the NHS, I have seen real inequality in how PWD are treated and this has to change. Dementia is a physical disease, not a psychiatric condition, yet those who suffer the indignity of this disease and their families are denied access to care that people with other physical diseases are entitled to.
I have had many conversations with other carers in the same situation as myself and hope this government addresses the need for change on the things that matter to PWD and their carers.
Regards
Simon
 

Lynmax

Registered User
Nov 1, 2016
553
Great reply, succinct but covers all points.

I wrote to my mums MP and to mine just before Lckdown to express my concerns about how people with dementia were going to cope. I had an email from Mums MP ( Labour) which although thoughtful, did not suggest anything helpful. I only had an automated response from my MP ( Conservative) and heard nothing else. I was not surprised as she is rarely seen in the constituency!

I feel the need to write to them again about the social care funding issue. I wonder if my MP will bother to reply this time?
 

Pete1

Registered User
Jul 16, 2019
866
Great response @Palerider to what I will only say, that after many many months in preparation, is an expected reply from the MP.

Have you got any closer too seeing your Mum?
 

Palerider

Registered User
Aug 9, 2015
1,932
North West
watkin.observer
Well the solicitors are talking to each other after the house sale, so it won't be too long before an exchange takes place. I feel saddened but also relieved that finally I have almost completed the last big job of sorting mum (and what was once dads) affairs. The thought of the equity release being resolved eases my conscience and removes a big weight from my shoulders, consequently my feelings are mixed at the moment as I look for a new home.

Mum isn't very well and is repeating the same behaviours -won't eat and either sleeps all day long or tries to shuffle-wander around with no great achievement in distance covered. I can just imagine her trying to get to where she wants to go, convinced she is absolutely fine :rolleyes:. Her nurse tells me she is not distressed and quite content, but her legs are now so bad she is getting breakthrough pain so its time to review pain relief. We can't fix the dementia but we can sort out her pain. There is an inkling of allowing visitors but the CH still can't resolve how best to facilitate it, so waiting to see what they come up with -should have an idea by Thursday
 

Woo2

Registered User
Apr 30, 2019
2,650
South East
I hope the sale proceeds smoothly . You have done a great job. Sorry to hear about mum , I hope to get to see her very soon 🤞
 

Palerider

Registered User
Aug 9, 2015
1,932
North West
watkin.observer
Well that was a long week of work -yup in everyday Mon-Fri long days. I guess its kept me occupied rather than thinking about mum and not being able to visit -still!

Today I have agreed the buyer of the house can come and measure up, even though no contracts are signed. I am beginning to regret it as I now would have liked today off with no interuptions.

With working all week I haven't looked for somewhere new to live, so had best get on with that chore this weekend
 

Pete1

Registered User
Jul 16, 2019
866
Sorry to hear you still arent able to visit Mum @Palerider, that must be very difficult.

Good luck with the house hunting. I hope you find some time to decompress....you probably need it. All the best.
 

Sarasa

Registered User
Apr 13, 2018
1,689
Hope the prospective buyer doesn't impinge on your day too much and you can get some proper rest as well as looking for somewhere to move to.
 

Palerider

Registered User
Aug 9, 2015
1,932
North West
watkin.observer
Thanks guys. Just wanted to announce that I have met the new buyers and they are a family with thier first new born -so I am delighted at the outcome as its what mum would have wanted 😁.

Just to say I now have new varifocals which are my first pair and can't see a damn thing when typing -so apologies for mistakes and typos
 

Jaded'n'faded

Registered User
Jan 23, 2019
885
High Peak
I have those - the ones they call office lenses or some such thing. They certainly take a few days to get used to. The first ones I got were totally unsuitable and gave me tunnel vision - I could read text on my computer monitor but only by continually moving my head! They went back.

The ones I have now are really good and I can even see close up things - filing nails, sewing, reading, etc. The main problem I find is depth perception so if I look down to see my feet as I'm climbing stairs it's a bit.... funny.

As for blaming your poor spelling on new glasses..... 😁🤭😜