We are so done.
What on earth were we thinking when we said we would bring my mother home to live with us from the care home?
I’ll tell you.
We were thinking that despite Camden Social Services not supporting us in 2017, when she was diagnosed as borderline diabetic (by a private GP that we had to take her to because the NHS one who serviced the care home she was in, was reading her test results incorrectly and causing other serious issues by taking her off medication that she needed), the care home she was in told the doctor that they would NOT put her on a diabetic meal plan. They then proceeded to feed her biscuits, cakes, sugar and sweets in front of me when we visited (which was often).
Instead, Camden downgraded Mum’s care (having already stated that she didn’t have enough capacity to choose me to be her Power of Attorney) and moved her into an assisted living flat. They assured us that Mum would be fine, that she would have 24/7 care, that she would have her meals personally cooked for her and so on.
It was a worse nightmare than we could have ever imagined: she was ultimately left alone for the majority of every day that she was there, sitting in the dark and perched on the edge of a sofa; a sofa that she had no idea she owned.
Mum was starved. When she was fed, she was given frozen salmon from the freezer, or eggs for every meal (presumably because that’s all the ‘carers’ could be bothered to prepare), or food that had been opened at an undisclosed time because the ‘carers’ did not label anything, nor wrap it appropriately. There were raw beef meatballs that were left in their (uncovered) for over a month until we finally threw them away. Fortunately, as Mum had no idea that she was in her own flat and paying a great deal for it, she wouldn’t open the fridge and help herself.
That same fridge became filled with black mold that was causing a stench like a burst sewer that you could smell from 50 feet away. The ‘carers’ did nothing and instead said that they thought we had bought Mum some smelly cheese. Mum’s specific ‘carer’ demanded that we give her money to take Mum to the cinema, zoo, theatre, restaurants etc. and also told us that she would get on to Mum’s bed at night with her.
It literally was a never-ending nightmare of absolute horror and instead of helping us with it, the Camden social work team who had thought this was a good idea, were vile to us, useless and obstructive, even resorting to shouting down the ‘phone at me, “Why don’t you look after your own bloody mother?”
We then moved Mum in 24 hours after seeing in the notes that a ‘carer’ carelessly left on the table that Mum had been fed half a pita bread, a banana and 6 coffees over the course of THREE DAYS.
Again, Camden got away with that.
At this point (possibly because Mum was starved and underweight but more hopefully due to us only providing healthy foods for the ‘carers’ to cook), Mum’s blood sugar levels were totally in the normal range – no longer prediabetic.
I explained that Mum had been borderline diabetic and that we wanted to ensure that she was put on the diabetic meal plan that the new home said that had. They agreed! Hoorah! It had taken us viewing 60 care homes whilst Mum was in the assisted living place to find just one that had agreed to feed Mum properly.
Needless to say, six weeks after moving in and literally a minute after the Camden social workers left from carrying out their review of the home, we were told that Mum’s blood sugars were sky-high. The care home manager assured me that Mum was on the diabetic meal plan and that nothing she ate had added sugar. She wasn’t interested in understanding that refined carbs or any excess carbs are also broken down into sugar.
I immediately emailed the Camden ‘reviewers’ and explained what had happened and asked for their help. They, at this point, clearly knew the issues regarding Mum’s blood sugar issues and my insistence that it be taken seriously. No response.
Some months later, after trying to deal with the situation myself, I emailed a senior member of the social work team and asked for a ‘best interests’ meeting to be carried out, so that it could be established that Mum did not have the capacity to choose the appropriate food for her condition, when she was presented with offers of cake, biscuits, sugar etc.
Again, I was ignored.
Fast forward to September 28th, 2020. Mum had been having all sorts of horrendous diabetic symptoms that were also totally being ignored: dramatic weight loss, passing out, dehydration, excessive thirst, UTIs etc. It took me – separated from Mum because of the CV19 regs, to request a test for diabetes when the ‘experts’ in the home wo were with her 24/7 saw nothing – which obviously came back positive. There was no diabetic meal plan at the home. Not only that but the actual manager overseeing this horror is herself diabetic and has been dieting and exercising for at least the past 3 years to reverse her own condition. You. Could. Not. Make. It. Up.
I obviously called in what I thought were the ‘Big Guns:’ Camden, Safeguarding in both Camden and Hertfordshire (where the home is located), the CQC, the home’s head office, the GP surgery and requested their help in reversing this and getting Mum fed a healthy and SAFE diet. Really? Who feeds a diabetic the foods that not only caused the condition but will also kill them? Answer: all of the above people who have chosen to specifically accept a wage for keeping the most vulnerable amongst us safe.
So, back to where I started – in so many ways.
Here we are, eleven days in to having Mum at home. She hasn’t been bathed yet and now stinks of s*it. It is making me gag. I have tried bathing her but initially and possibly still, we do not have the appropriate equipment to bathe her. Mum refuses to sit on the bath lift which finally arrived 36 hours ago; she is afraid of it. She will not allow me to undress her – goes in to full on panic mode – screaming/aggressive and trembling with a look of terror on her face. We flagged bathing as an issue over a year ago to the same team when we were asking to bring Mum home for a week or two on a trial basis fearing that this situation might occur. Oddly, that request to bring her hoe for a week or two seemed to fall by the wayside but the one stating that we would actually bring Mum home didn’t and here we are.
We requested to bring Mum home – stupidly, it now seems – so that we could save her life. It was the only way to get her off a highly refined carb diet and medications that were clearly making her unwell (not that any of the ‘carers’ or GP noticed) and to feed her real food. Can you imagine that? All of the ‘caring’ services were happily witnessing a diabetic being fed constant sugar and thinking that it was acceptable because she was being given medication rather than healthy food to control it AGAINST HER OWN WISHES.
We recorded Mum when she had more capacity to understand the situation years earlier to make her wishes about diet clear. She stated that she would rather be healthy than eat cakes and biscuits. Even a women with dementia knew that her health was the most important thing. Not only that but I, as Mum’s legal representative, her Lasting Power of Attorney, was blatantly ignored when requesting Mum’s condition be controlled and reversed with diet by her GP.
We also brought Mum home because of the unrelenting PTSD caused by having a loved one in a care home, knowing that they are being harmed and not having any way of stopping it – other than doing what we have done.
This morning she has gone crazy. She IS crazy. It is distressing for us all. Apart from screaming repetitively and being incredibly abusive, she has refused to get out of bed, refused to eat anything (including a Huel chocolate shake, so that I can administer her medication), is making ongoing groaning noises to get our attention and did I mention that she really stinks?
Camden are ignoring our pleas for help.
I have even sent them copies of my severe complex PTSD diagnoses (three in total), which outline in black and white that my mother is my biggest trigger. No response at all. Bearing in mind, I already spoke with their own consultant psychologist earlier this week who said that she understood that it was triggering my c-PTSD, nothing.
They are yet to organise someone to come in and bathe her (now day 12 without being cleaned because she will not let me near her) and whilst the sun is shining brightly in a blue sky, we are being kept imprisoned because a) the care home gave her back to us with feet covered in sores that are so painful Mum hasn’t been able to walk and b) she is now so filthy and stinky that I can’t bring myself to take her out in public, if she will even allow me to dress her to do so.
If you know what we can do in an emergency to get Mum moved from here, which is clearly causing us all horrific distress to already traumatised people, please let me know. Her social worker has thus far done what appears to be next to nothing, if not less.
Toula Mavridou-Messer 