Good morning all. I hope you are coping in this never ending lock-down! I'll start by saying a big well done to carers who are managing to fulfil care duties during this pandemic.
I am 29 and currently caring for my mum. My mum is 62 and was diagnosed with Alzheimer's in September 2019. Although she was displaying symptoms since around 2014 when my dad (her husband) tragically passed away. I am an only child, so it is just me responsible for all her care needs and financial matters. I have done all the right things (I hope), such as: becoming her LPA for health and welfare and property/ financial affairs. I am now legally allowed to act on her behalf when dealing with DWP. She moved in October to rented accommodation in Bury (Greater Manchester) as she was not coping in her own house anymore. I arranged with a private care company a carer once a day and to see how things progress. Since moving to this rented 'sheltered' (not assisted living, all she has is someone who carries out maintenance+ utilities) accommodation (far away from her old house and brother) , I have noticed a massive decline in her mental health.
Four weeks ago, I was informed by her landlord that my mum had wandered into the car park of the building and was delirious, delusional and hallucinating. I drove up north (London to Manchester/Bury) as soon as he told me and began caring for my mum full time in her home. As it is lock-down I have been asked to work from home, I am a primary school teacher. On consulting the doctor about her sudden delirium we agreed that she probably had a UTI so we were prescribed antibiotics. She finished the course and symptoms still persisted so we were given another set of different antibiotics, she finished the course. However, she was still delusional and hallucinating all day and all night. I couldn't get a urine sample because of her eyesight so she gave a blood sample, which came back all clear. This week the hallucinations have become very distressing for her. She spends all day having conversations with people who aren't there, sometimes she argues with them. She follows their instructions. They ask her to have showers at 3 am, they ask her to get out wine glasses and make them a drink. This often results in smashed glass on the kitchen floor due to her poor eyesight (an apparent symptom of the Alzheimers, no/depleted vision in her left eye). Around 3.30pm daily the hallucinations get more intense and she often tries to leave the house, telling me that she is going for a walk with her best friend (totally imaginary). Other times she tells me that she has to run away as the house is built on an Indian burial ground and the ghosts of the past are haunting her. These things/people she is seeing try to stick corks up her anus and urinate on her apparently! When she gets restless and agitated I usually take her for a walk until she calms down. (sometimes difficult in lock down as she wants to walk for hours).
In the past couple of days the hallucinations have not improved, in fact they've got worse. She is in state of distress from the moment she wakes up, to the moment she tries to go to bed. Often, running around the house shouting and screaming that people are stealing her clothes and hiding her things. She has carers once a day (even with me looking after her 24 hours) as I need to do some work and teach my children via the internet. Sometimes she responds well to them, but often she wants me to be with her as well. She thinks the carers are drugging her and stealing her makeup. The carers are doing a great job, they are so patient with her and often get her smiling and laughing. The carers seem concerned that it is just me caring for my mum and her needs are becoming more and more complex.
My mum was prescribed Donezpil which she was taking at night, but we changed it to the morning due to nightmares. Sometimes she takes it, sometimes she doesn't. I don't think I should force her to take it. The doctor has lowered the dose. For the hallucinations she has just started taking risperdone. She is also taking Citalopram for her anxiety and depression (diagnosed when husband died). So as you can imagine, when it's time to take her medication in the morning it is an ordeal. I have had to become increasingly forceful and heavy handed because she does not want to take 3 tablets. She believes she is fine and that the house is haunted, she doesn't have Alzheimer's in her opinion.
My mum is incredibly controlling and before we had an Alzheimer's diagnosis her treatment of me was verging on psychological abuse. 20 phone calls a day, while I was working. Lots of tears and tantrums when I was visiting her. Lots of emotional bribery, things like, "I looked after you when you were a baby, so now you have a responsibility to look after me. I don't need carers or a care home I need you because you are my son." Obviously she says this less now as she lives entirely in her head. Often sitting with her eyes closed or talking to hallucinations. She only engages with me properly when I am making food for her and making her eat (she cannot prepare and food of hot or cold drinks), helping her get dressed or putting her in bed.
Next steps. I have asked social services numerous times for a care needs assessment. Each time they ask if it is an emergency, to which I reply, yes. They ask if she currently has carers, to which I reply, yes. They ask if we are self funding. When I tell them that we are, they pretty much hang up. They tell me that because we are self funding I should arrange some extra care visits for when I am back in London. I asked for their advice on nursing homes in the area- they said because I am a self funder I should approach nursing homes myself. I am finding that nursing homes/care homes are not responding to me during the pandemic, for obvious reasons. My patience is eroding quickly and I am certain that my mum needs a team of people around her due to her complex needs. I feel that I have done all I can, I want my mum to be somewhere where there are professionals, before I am pushed to my limit.
Is it the case that I need to wait for my mum to wander off or have a fall before social services intervene? Is there another line of reasoning that I should employ when I call them?
Thanks for your time.
