Sorry for the lengthy reply, but I felt I had a lot to share which I hope will be of some help…
Hi @Rach55 and @JenP.
I am not sure if we were unlucky, but when we approached AgeUk we found they were not very helpful at all. Maybe this is different depending on the local staff of AgeUK offices. We ended up going to Citizens advice and then doing our own research.
We did find the Stroke Association a lot more helpful including advice on trying to find the best option for care including “self-managed” care package when we were having difficulties with the carers from the council appointed care agency.
With regards to which option is best, our approach was based on what Mum wanted. Before she had the stroke, she had mentioned to us that if she were to fall ill, “under no circumstances should we put her in a care home”.
So this was her wish, but not something she necessarily had control over since if she lost the ability to make her own decisions, we would have to decide for her i.e. under Power of Attorney or Deputyship. As it turns out, following the stroke she did lose ability to make her own decisions and now all decisions are made for her by someone else and judged to be in her best interest.
Because of her stated desire, we opted to care for her at home, though we did initially look at care homes because we were told by the stroke consultants that caring for her at home might be extremely challenging due to the severity of the condition and that “there are some very good care homes out there”.
Trying to decide what was best for her, we visited a few care homes that were “recommended” but found them to be unsuitable for one reason or another. In our case, the council social worker assigned to Mum and the hospital were keen to get Mum discharged from hospital asap and we were being “pushed” to choose a care home. So effectively, by the time we had seen the third home we were told we had to choose one of these. Since we felt they were not going to meet Mum’s care needs as she would have wanted, we decided to go for the home care option.
For us this was a big challenge as the home was totally not suitable and needed adaptations to allow Mum to be cared for properly. But again, we were pushed to take her home and then the adaptations would be done once she was home. This is actually quite crazy when you think about it, but we got the feeling that the prognosis or expert opinion was “Mum would not likely be around for too long”, though they never used these words. Btw - nearly 3 years later and she is still with us and getting better by the day
Either because we were pressured, or because we got frustrated, we brought Mum home after some initial minor amendments to the home i.e. converting the downstairs living room into a bedroom for Mum (she had her bedroom upstairs but we felt she would be better off downstairs). To cut a long story short, then Covid struck and all visits etc. were effectively stopped and Mum was stuck in her downstairs room with adaptations on hold. It was a nightmare time with Mum effectively isolated in a 4m x 3m space that was filled with a medical bed, manual hoist, recliner chair and trolley.
We had help from agency care workers 4 x a day and Mum was/is totally dependent with everything. She is double incontinent and PEG fed (now coming to 3 years).
It was nearly 9 months after Mum came home that the minor adaptations finally got done – widen the door so a wheelchair can be easily used to take Mum in and out of the room and a ramp to allow her to be taken outside. This was a very stressful time for us and we can imagine for Mum too as she was effectively locked into the 4m x 3m room for the best part of 9 months with only care workers as her human contacts.
But despite this, we (the family) feel we made the right choice to bring her home. We believe, her condition is too severe for a “normal” care home to cope and she would not get the “personal” one-to-one she gets at home. Her care needs are very challenging and we can only guess how much they would cost if we were to find a home capable of providing the level of personal care she now enjoys. We can only say that for her, maybe she is lucky that the family is able to care for her with some help from agency care workers.
Just to add, it has been very stressful and emotionally draining at times and family relationships have been tested to the hilt, though we are pleased to say somehow we have managed to survive Covid and the stress and strains of looking after Mum and for us caring for her at home is definitely the right option.
We have had feedback from others who have said that they were not able to offer the same to their loved ones, or their loved ones chose to be cared for in a home etc. So from that, we conclude it may also be a personal choice thing coupled for affordability since it may require some sacrifices. Being a 24/7 carer means I can no longer go out to work and my social life is significantly different to what it was before I became a 24/7 carer. There are many things to consider.
Finally, from experience and from posts on this forum, help for SS and Carers varies widely even in the UK, so I guess each situation has to be reviewed based on needs and availability of support.
So home vs care home?