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My Mum's continuing nightmare situation - Carers UK Forum

My Mum's continuing nightmare situation

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I have been contacted by the Care Agency recently, as they are demanding a Review. I asked them what it's for and why now. Besides them saying they're going round their Client's doing reviews, the Care Co-ordinator stated to update my Mum's weight amongst other things; they know full well it's impossible to weigh my Mum. I have asked they send out details of what they have implemented from the last Review, as nothing's improved for the better - they've ignored me. I've got an MP dealing with this. Yet again they're taking the upper hand in dictating as they see fit, when they neglect my Mother's health.

My Mum has now lost a considerable amount of weight coz the care agency's attitude is she refuses to eat, when they're not equipped to support her Dementia. Nevermind informing me sooner than around last Christmas, as 4 stone does not just drop off like that.

I have been trying to see if I can get a personal budget to get an independent Care Agency that would be more supportive and focused on my involvement. But my Mum may need to have an updated Care Needs Assessment for them to assess if there have been changes to hours involved (in me checking the Carers file, the times they're at my Mum's are the same). That would mean a Social Worker involved, when they haven't been any useful in the past. Surely they could go off the current Care Agency's Care Records and invoices?

Alternatively I'm considering Crowd Funding, as my Mum has been denied vital NHS Continuing Health Care that would facilitate this.

So unfair all what's happening to my Mum. She's suffering enough with all the hoo-haa so called 'professionals' create.
New section on the main CHC / NHS CONTINUING HEALTHCARE thread may help ... together with an existing one :

https://www.carersuk.org/forum/support- ... read-35998

DEMENTIA ?

CHC : APPLIED FOR BUT REFUSED ?
You do need to go back to Social Services, to get better care.
Might be worth explaining about the urgency, given the 4 stone loss.
I'd also ask for another Continuing Healthcare Assessment, this sort of weight loss should raise alarm bells, surely?
What does mum weigh now?
How old is she?
My next suggestion may seem distressing, it's just I haven't seen an explanation written better.
Google "Signs of Dying" and you will find explanations about how the body slowly shuts down, over the last few YEARS of life. I'm NOT saying mum is dying at the moment, it can be argued that we are all on the same slippery slope of life, just at different stages.
I have also read somewhere that sometimes people with dementia just don't remember how to eat any more.
Does mum have any fortified drinks?
Has the GP asked for the involvement of a dietitian?
bowlingbun wrote:
Thu Sep 26, 2019 10:17 am
You do need to go back to Social Services, to get better care.
Might be worth explaining about the urgency, given the 4 stone loss.
I'd also ask for another Continuing Healthcare Assessment, this sort of weight loss should raise alarm bells, surely?
What does mum weigh now?
How old is she?
My next suggestion may seem distressing, it's just I haven't seen an explanation written better.
Google "Signs of Dying" and you will find explanations about how the body slowly shuts down, over the last few YEARS of life. I'm NOT saying mum is dying at the moment, it can be argued that we are all on the same slippery slope of life, just at different stages.
I have also read somewhere that sometimes people with dementia just don't remember how to eat any more.
Does mum have any fortified drinks?
Has the GP asked for the involvement of a dietitian?
It's complicated with social services, as they've constantly undermined my involvement. I have emailed the commissioning team my complaint of how the current Care Agency has neglected my Mum's health, and how the 'Care Manager's' excused of my Mum refusing to eat justifies them not supporting her Dementia.
I've got Beacon involved now with the Continuing Health Care issue, they're assisting with from last 'review' done underhand July 2018. The CCG reject everything, based on them claiming my Mum doesn't have nursing involvement.
My Mum used to weigh 14 stone around 2014 when she went to Day Centre. Last time was weighed in hospital after mini-Stroke May this year - around 10 stone....but last time Dietician came out it's dropping further. My Mum is 84. The doctor at hospital did fill out a DNAR form, and I discussed it with the Surgery Manager, as may be End of Life scenario. She's yet to get back to me.
Dietician was referred to by District Nurse earlier this year when they came out for Vit B12 injection.
The GP came out around last winter to examine my Mum, and concluded then it was Bladder Cancer, as there seemed to be swelling lower abdomen. His exact words were, 'You do know it's Bladder Cancer?', he justified it as my Mum 'was old'. Even with me asking him how he came to that conclusion without there having been any tests.
My Mum is prescribed nutritional milk drinks to hopefully keep her weight stable.
That's disgraceful, blatant ageism.
Mum should at very least have a scan to confirm such a serious diagnosis, so that measures can be put in place to give her all the support she needs. Or has a consultant already made a diagnosis but not told you?
bowlingbun wrote:
Thu Sep 26, 2019 3:17 pm
That's disgraceful, blatant ageism.
Mum should at very least have a scan to confirm such a serious diagnosis, so that measures can be put in place to give her all the support she needs. Or has a consultant already made a diagnosis but not All told you?
All tests came back negative. The named GP was the one who came out to examine my Mum - I hoped he was more sympathetic than the female GP; but alas they're all the same. Even with this Surgery on a bungalow estate, that has older people and is supposedly providing the highest quality in our area.
The combination of not eating, weight loss and swollen abdomen suggests bowel problems sorry I am not an doctor or expert but do have a lot of experience.
So a scan is the first thing they should be doing.
It is very common for the elderly to have bowel problems, constipation due to medication or other issues.
The doctors should be setting up a proper treatment and care plan.
Londonbound wrote:
Thu Sep 26, 2019 4:15 pm
The combination of not eating, weight loss and swollen abdomen suggests bowel problems sorry I am not an doctor or expert but do have a lot of experience.
So a scan is the first thing they should be doing.
It is very common for the elderly to have bowel problems, constipation due to medication or other issues.
The doctors should be setting up a proper treatment and care plan.
The female GP that came out way before last Christmas, seemed to put the not eating down to something may have been wrong with the Kidneys; blood tests came back OK.

I'm in contact with the Surgery Manager about various things, and will mention my Mum needs proper treatment + care plan.

Thanks
The doctor sounds unprofessional to me. Why are they not taking this whole issue seriously?? Can you find another specialist or not? What area of medicine are the consultants trained in?

Insist on another scan just to be safe. Speak up and advocate for your mom. Ask for a referral to a dietitian as well. You’re also right to be concerned about her sudden weight loss. They should also be able to support and advise you. Good luck!

Go back to your local social services department. Beg literally for another assessment to be done. This is dangerous. Perhaps you can change care companies? Is that a possibility? Research care companies online. Find out as much as possible. Look at their website. Or call them.

The whole thing indicates your mom has serious bowel and bladder issues. A urologist deals with people of all ages who have serious bowel and bladder problems of all kinds (babies and children included) on a very frequent basis. Get a referral to a non pediatric urologist who specializes in adults with bowel and bladder cancers. Try not to give up either. Make sure that all of your questions are answered. Explain your mom’s issues and symptoms too and see what they say. Keep us posted.
Not eating and drinking is commonly associated with Dementia, I often have to remind my Mum to drink.

She has a cup of coffee and if it's not touched after 15 minutes "Mum don't let your coffee go cold" , she'll reply "Oh yes, I forgot", then drink it down in two minutes.

Between Nov 17 and Mar 18, I went to hell and back with Mum's eating, I was literally begging her to eat. Thankfully her carers were doing the same. One cup a soup a day would sometimes be a success to me. The GP was regularly coming out, mention of PEG feed etc.

One day I ordered pizza for us, I gave Mum hers and sat at our table to eat mine. Mum soon put the box to one side and I almost plead with her to eat more. She lifted up the box to show me she had eaten three quarters of it. The best nights sleep I'd had in months.

Your Mums carers should be doing more to encourage her to eat. But persevere and hopefully there will be light at the end of the tunnel.