In a previous post, I mentioned the spectre of social care – our first encounter with this was during the process of establishing suitability for discharge for my mother from hospital in 2018. My mother had lived with us for years, and as her primary support in navigating the care system, I was her informal carer. But at home, the entire family played this role in one way or another. Before being admitted to hospital at end of 2017, I had already partitioned a fair amount of my ‘bandwidth’ and time to being my mother’s informal carer.
With a large part of 2018 spent between hospital wards, we were familiar with the healthcare system. However, we had little dealing with non-medical care and I didn’t really differentiate between community/district care and social care. In any case, patients had to be discharged to a suitable home. And my mother’s condition had degraded so much during her various ward tours, that she would need considerable ongoing support. I therefore started asking questions and doing my research as the information I was being given by ward staff was not clear. At this time, we had been seeing so many other families despairing while going through the same process in hospital (my mother outstayed everyone so we met a lot of people) I started sharing what I learned with them.
I contacted an ageing charity who got me started on researching the difference between continuing healthcare (NHS funded) vs social care (funded through individuals and local authority social care budget). This required extensive reading and calls. But it all required to be started with an assessment. So someone from the hospital had start the process with an occupational therapist to inspect our home, ask questions to determine suitability. In parallel, a social care liaison at the hospital would liaise with the local authority social care team to determine budget and offer. A provisional ‘offer’, would need to be put together (i.e x nurse visits a day , 15 minutes each etc.) to help the patient – in between these visits, we as the family would either need to care for her ourselves, or bring in help. Not only is the level of support a variable, but effectively, who pays for this support – NHS, Social Care, or the individual/family. The content of many reports on the care sector in this country.
In any case, our home was assessed to be unsuitable given my mom’s needs. Especially since she now needed considerably more support. The next challenge was availability. While plenty of facilities were potentially available (and the pricing of this is well addressed in many social care sector reports), local-authority negotiated places were in shorter supply. My mom’s mobility status also meant that staff ratios came into play, with many homes already stretched with the level of support they could offer. It took a while for the team to find something but we were fortunate to find a lovely care home very close to ours. I mentioned how that went in a previous post.
Finally, after another hospital ward tour, we lucked out and received an offer from a hybrid nursing home. This facility, in a semi-rural setting is now my mother’s new residence. I’ve had to try to adapt to their capabilities – supplying meals every week, equipping her room with everything she needs and making her as comfortable as we can. Communication technology has been the hardest, and with poor mobile connectivity and no broadband, giving my mother the ability to video call her family in India and speak to us daily has been a challenge.
The priority here is comfort, rather than recovery. So, after a few tries, any attempt at helping her mobilise have been abandoned. The few steps she took between bed and chair now part of a forgotten past.
The nursing staff have been great, and my mother’s cognition and mood has improved. She remains bedridden, but her friendly, singing self seems to be back and the staff take good care of her. And speaking to her daily and liaising with staff regularly, we try to make sure we keep on top of anything she needs. The home has a GP that visits once a week, and my mother made it clear she never wants to see the inside of a hospital again.
My focus now is to gradually tweak all the little things that need to work – not only for her, but for us a family in our efforts to support her. From adapting big button phones to work in patchy mobile signals to having signs to stop the cleaners unplugging devices we need to keep her alert, to adapting her favourite meals to comply with kitchen hygiene regulations, we’re making her new home, home.