Hello again. Finally I have the time to discuss my case. Sorry it’s lengthy, but there’s no other way.
I live together with my mum (now 96) in a small mews flat in NW London. We have always lived together and we share many of the same interests. Mum has lived with osteoarthritis and osteoporosis for the past 13 years at least. She has had 2 knee replacements and a dynamic hip screw fitted some years ago. Like many people of her generation, mum is fiercely independent and extremely strong willed. Understandably, when she had a few falls and ended up in hospital with a small fracture beneath her knee joint (on 3 separate occasions) her life was thrown into turmoil.
We first encountered Social Services and Occupational Therapy, maybe 10 years ago. Nothing remarkable had occurred with them at that time. However, after spending some time in a care facility, following her discharge from hospital (on a previous occasion) mum returned home with a Grade 2 pressure ulcer, which became a Grade 4 within days! We were swooped upon by both a social worker and OT who made all sorts of demands regarding her care. It was deemed by OT that ‘mum would never walk again’ and that she ‘was of deteriorating cognitive function’. She went on to prove them wrong by the ability to walk with a frame after just 2 sessions with a private physiotherapist! This experience, though bad enough, was nothing compared to what was to come.
Having lapsed with her regular physio during the worst weeks of the Covid lockdown, mum’s right leg seized up as I helped her out of the bathroom one afternoon in late July. Although I did my best to support her, she ended up sinking slowly to the floor. Eventually diagnosed with a small fracture beneath her right knee replacement, she was put into a plaster cast and admitted into our local hospital where she stayed for some weeks. She was then transferred to a specialist rehabilitation hospital. I was led to understand that mum would receive intensive physio at this unit which would enable her to regain sufficient mobility to return home. She had been at that same hospital previously with good results. This time, however, she was the only patient I saw confined to a chair or bed with her leg still in a massive cast after 7 weeks!
2 weeks ago, I was contacted by Social Services and OT regarding mum’s ‘discharge plan’. She would either be discharged home or to an interim care facility. Both mum and I insisted on her returning home. It was obvious she was depressed and confused. Also, she was refusing the food they served at the hospital. A week later, a social worker and an OT invited themselves into my home to ‘inspect the premises’. They looked into mum’s bedroom, the living room, and the bathroom. They were measuring every inch of those rooms and taking photographs. After 30 mins they left.
I was then invited to take part in a telephone conference to ‘discuss mum’s return home’. Among those attending that meeting was the social worker, OT, the ward sister from the rehab hospital, and mum’s GP. I was advised that mum had ‘made little progress with her rehabilitation due to the fact she had to be moved with a hoist and was displaying signs of cognitive deterioration’. It was decided that she should return home as soon as today (Sept. 14), even though an admin error had prevented her from attending the vital appointment back at the fracture clinic. She was STILL in a cast from her foot to the top of her thigh!
I was told she’d need ‘a hospital bed, a hoist, with 2 carers coming in 4 times per day’. Her bedroom was obviously too small for the equipment so ‘it would be installed in the living room’. My initial reaction to this was one of total disbelief! Our LIVING room???!!! They had seen the size of the rooms in our flat! When I told this to my mum, she nearly had a fit! I had designed and decorated our living room about 7 years ago. We both see it as a peaceful space which we can enjoy with our 3 pets and all the things around us which we love. How anyone in their right mind could even imagine a hospital bed and hoist could ever fit into that room (with all our furniture and belongings in it) simply beggared belief! I told them this was lunacy and that NO hospital bed or hoist would be coming into our home.
I was then told that, ‘I’d have to make compromises’. Impossible, as there were no compromises to make! It was even suggested that the bed and hoist be installed in MY bedroom!!!
As far as I could see, absolutely nothing had been done for my mum since the day (2 months ago) her leg had been put in a cast. She was still non weight bearing with no sign of that hospital appointment.
As much as she needed to come home, was she really fit for discharge in her present state? They may as well have sent her home 2 months ago!
It was at this point, the bullying and intimidation began. I was being told that the bed and hoist WOULD be installed in our living room. I was supposed to meet with the social worker again at the rehab unit last Friday. As I saw little point in keeping that meeting (before I’d sought legal/professional advice) I emailed her and cancelled. On that same afternoon, I’d got a visiting slot to see mum.
When I arrived on the ward, instead of mum being brought out to be with me, I was ambushed by one of the care team. I wasn’t sure of her capacity, but I reckon she was one of the senior nursing staff who had been part of the telephone conference. She beckoned me over to the far end of the room and began lecturing me on the details of mum’s imminent discharge. I reminded her that I had come to visit my mother and that my allocated time was being wasted. I demanded my mum be brought out to see me. She then asked someone to fetch my mum but continued to lecture me about ‘my mum’s needs’. Another of the care team was sitting close by, a physio I assumed. All I was receiving was a barrage of information as to how ‘unfit, mentally, my mum was to make any decisions on her continuing care’. When she learned that I was also using the living room 24hrs a day as part of my workspace (during the night) I was accused of ‘allowing my own agenda to override my mother’s best interests’! I told her that she knew nothing about my mother or the life she led with me. I assured her that I had cared for my mum for years in the best possible way any daughter could, and that I found her remarks extremely offensive and misjudged. She then turned to her colleague and asked if she could ‘be there at the flat on Monday to start moving our furniture to make room for the bed and hoist’. I advised her that the only person to be entering our premises on Monday was my plumber who was scheduled to arrive at 2pm sharp!
‘Start moving our furniture’???!!! What was this, the Gestapo? I’d like to know how they planned to gain entry to the premises?
She then began to threaten legal action. I counter advised her with the same on my part. She continued to argue that my mum’s stay at the unit was over. When I asked why my mum’s future progress was being judged on her current non weight bearing state, I was told that she ‘had failed to benefit from any of the physio she had received at the unit’. Physio? With a heavy cast up to her thigh and totally immobile? ‘Yes, up to 80% of patients in my mum’s position regain some degree of their mobility with the physio they receive at the unit’.
Oddly enough, mum had denied having had any physio whatsoever. They had mentioned previously that, ‘if she couldn’t be moved successfully with the aid of a slide sheet, her immediate future would have to be totally reassessed’. I know that mum hates the slide sheet and is absolutely freaked out with the hoist. Her stress levels are at breaking point with both.
It was then when the subject of an interim care placement was mentioned. Obviously, this was the last thing either of us wanted as we both expected mum to return home when she had regained sufficient mobility to move about with her frame. From that point she would have had the very best physio and rehabilitation treatment available at home from her private physio team. This is an accredited medical facility, often working alongside the NHS. Better still, it is almost directly on our doorstep. Not only am I terrified of Covid, but also the likelihood of mum not receiving the correct degree of pressure care. Unfortunately, it was now looking to be the only short term viable option. I was told that ‘the whole proposition would have to be run by the social worker … who she was unable to contact on her mobile at the moment’. All the time she was repeating the accusation that I was putting my own interests before those of my mum’s.
The interim placement idea had been mentioned when my mum was first admitted to the rehab hospital. Why only revisit that option now? They knew neither of us wanted this. Or was this all part of the greater plan? Threaten us with a totally non viable option in our home until we’d agree to the original one?
If mum did go to an interim placement, how likely could I visit her there? Could her private physios visit her? And what would be the chances of me ever getting her home? What if Social Services and OT started to impose more obstacles even if mum’s own physios pronounced her fit to return home?
I am living a life of hell. I cannot take much more. I have been told they are out to unnerve me and that I have to stand up to them. What do I do if they turn up at my place today? This cannot continue.