It’s been an extremely busy and stressful couple of months. We finally got the thumbs up from our local authority to bring Mum home from her care home, after they made her diabetic, refused to put her on a diabetic safe diet (i.e. continuing to feed her an abundance of sugar: cereal, bread, cake, biscuits, bananas etc) – all with the permission of the local GP who steadfastly refused my request as LPA for my mother to control Mum’s condition with diet. We even sent the GP a video that Mum had made when she had more capacity, where she stated that she would rather be healthy than eat a high carb diet. Not only that, the scare home and GP missed all of the very obvious signs that Mum was diabetic, and despite not being able to see Mum because of all of the abhorrent regulations keeping families away from scare homes, whilst ‘carers’ had the freedom to do as they pleased, ultimately bringing in the virus to the home more than once, it was clear that Mum had the condition.
Mum had regular UTIs – one of which they didn’t treat for almost THREE weeks. Mum was clearly going out of her mind with pain and discomfort, had suddenly become incontinent, was extremely agitated, up all night and roaming the corridors of the scare home constantly. The manager (who insists on feeding diabetics a continuous diet of refined carbs/sugar all day) had decided that Mum’s symptoms were ‘long Covid.’ The untreated UTI has left Mum with permanent cognitive decline. Mum also had delirium for many months caused by this. Again, the same manager argued that the delirium was also ‘long Covid,’ after not actually knowing what delirium was (even though it is very common amongst dementia sufferers) and despite being informed that one of the leading neurologists in the country (and Mum’s dementia doctor) that it was definitely caused by the UTI. Mum also lost a great deal of weight, was continuously thirsty, totally dehydrated and peeing all of the time. Mum also passed out numerous times. A&E said it was from dehydration. The lack of fluid in her system was causing low blood pressure, so when Mum stood up, there wasn’t enough volume of blood to keep her upright, so she passed out. Witnessing this happen was terrifying. It looked like Mum was dying. She turned deathly pale and literally fell to the floor. The scare home manager denied that Mum was dehydrated despite the proof from the hospital and the physical changes in Mum (pic attached showing what 3 years in this scare home did to Mum physically). Meanwhile, the GP surgery denied that they had missed the symptoms of diabetes and argued that with me – even though her test came back POSITIVE!
Incidentally, the CQC, two local authority’s safeguarding teams, Mum’s social workers, the scare home head office et al did absolutely nothing to help us. They actually denied that there were any issues at all.
There’s much more that I could tell you but by now I am sure that you have the gist of the situation.
So, having been ignored when we asked to bring Mum home from the scare home in March 2020, we tried again and again, finally getting the thumbs up at the beginning of this year (2022). It wasn’t for us, or Mum, of course. It was because the scare home gave Mum notice – which they would rather do than just feed her a diabetic safe diet and actually care for her properly.
Knowing that Mum was coming home, we have had to do a ‘Challenge Anneka’ on our home and make it habitable for her (and us); a task easier said than done. To start with there is NO storage at all in the property (Mum’s property). Then, there’s the issue of the amount of things we have here: Mum’s stuff, our stuff and all of the extra furnishing and ‘stuff’ from the assisted living place that we had to purchase and then remove. We gave various items to charity but there is much we want and need to keep. Finally, the local authority has put a compulsory purchase order on the entire estate so that they can knock it down and rebuild it (at some point). This situation has been ongoing, as far as we know from other residents, for around 20 years but with no signs of any actual progress. Residents have therefore been wary of spending money on their properties knowing that at some point their homes will be demolished. That’s where we are. We have been trying to create storage space without spending a fortune, so now have numerous vacuum bags, under bed storage and numerous pieces of portable furniture from a well known Swedish store filling the property. I have no idea where anything is BUT Mum’s room (which we were using to store everything) is now empty, steam cleaned, newly decorated and about to be furnished with more practical furniture to store all of the things Mum has accumulated over the past 7 years that also need a place to live.
We have also taken delivery of some specialist furniture items from Mum, are awaiting a visit from a company who will (hopefully install various alarms and alerts around the property to let us know if Mum is up and about, or opening doors to leave etc), changed her GP to a local one – who incidentally has removed the Metformin (diabetes drug) from her prescription as we will be feeding Mum a diabetic safe low carb diet (as outlined by Dr David Unwin from the Public Health Collaboration). Our intention is to reverse the T2D without medication and get Mum back to optimum health. Talking of which, I have also consulted The Realm of Caring in the US and have been advised about the use of CBD in treating many of Mum’s conditions (dementia/Alzheimer’s, Rheumatoid Arthritis, depression, anxiety etc) and have literally just ordered a load of CBD gummies to start Mum on when she gets home. We will also be making sure that Mum walks at least 5K steps per day to rebuild her physical strength, oxygenate her blood, improve circulation and to have fun!
The Realm of Caring furnished me with a number of scientific papers about the effects of CBD on the conditions Mum has so we feel comfortable with pursuing this line of treatment and if successful, lowering or stopping conventional medications that are highly toxic and putting excessive strain on Mum’s liver and kidneys. We are doing this with the full knowledge of her new GP and will be getting follow up blood tests etc in 3 months from now.
Once Mum is home, I will post regularly with her progress – positive or otherwise – so that you can consider whether what we are doing might be of interest of help to you or your loved one. Once someone has been diagnosed with dementia/Alzheimer’s – a terminal disease – care from ‘the system’ pretty much stops (unless you pay extortionate fees – Mum’s current scare home group post profits of £14m per year and have done for a number of years, which explains the basic ‘care’ and meals they provide), unlike a diagnosis of a terminal disease like cancer, where so many incredible services kick in to support and help…providing exceptional care for free. Instead, we will be providing our care for free whilst being unable to work as Mum needs 24/7 care and living on the breadline (or below it), although the local authority was coughing up £1,000 pw to the scare home. You couldn’t make it up…and you don’t have to.
LINKS: *I have no relationship with any of the following other than contacting them for advice – so this is purely informational and not a recommendation.
Public Health Collaboration: https://phcuk.org/
The Realm of Caring: https://realmofcaring.org/
Toula Mavridou-Messer 