Thanks for your feedback - much appreciated.
There is frustration and there is also some anger which I am trying to channel. I am definitely of the opinion that Mum is amongst the forgotten and I am not sure how many there are in this category. In dealings I have had, I get the distinct impression there are pigeon holes and once you are classified in a certain category that is how you will be treated despite each of us being individuals and having different needs and abilities etc.
Mum is not your average nonagenarian. Before the stroke, people used to be amazed when they found out her age as most would have guessed she was 20 years younger. Even today, when people see here they are surprised how well she looks considering her age and the severity of the stroke she has had. Her GP and others when they finally agreed to meet her in person always said “They were surprised to see Mum the way she was i.e. they found her much stronger and fitter than they had expected from the discharge notes which were way out of date and did not reflect her true condition. Even today nearly two and half years after the stroke, there are agencies who still go by what the discharge notes say rather than her present (true) condition and this is quite a problem and why she does not get the care and support she needs.
With regards to carers, taking into consideration the shortage etc. the problem we have found is that Mum is not able to communicate “normally” and a family member always advocates for her. The advocate is accepted everywhere e.g. with GP, hospitals etc. but for some reason agency workers and their management are of the opinion the advocate “gets in the way” and they can’t do their job without feeling uncomfortable. This poses a huge problem since Mum is unable to explain or say what she wants and the carers are unable to understand her needs. The end result is a stressful care session for Mum. Just to be clear, she is very cooperative and helpful when family tries to do the care that the agency workers do, yet the opposite seems to be the case when the carers are doing their call. It has been suggested that Mum knows it’s the family or carers and behaves/reacts accordingly. We don’t believe this to be the case and to be fair we can’t categorically say she even knows the family other than they are faces who care for her.
Though Mum’s care needs have been assessed and commissioned carers are provided, the package that is delivered is nothing like the package that has been commissioned and there seems to be no accountability. Agencies simply walk away if they are challenged saying they cannot provide the commissioned care package, yet they are more than happy to carry on if we keep quiet and allow them to do as they wish.
Mum has a dedicated social worker but she has not been of any help. If anything she has caused or further exacerbate the problems. She keeps telling us that carers or physios are professionals and we should let them get on with their jobs. This even when a clear and distinct level of incompetency has been displayed. The social care element of the care team is just as shambolic if not worse than some of the other parts. It’s all about ticking boxes!
As mentioned earlier, for a very long time the GP had assumed (wrongly) on the basis of the discharge notes from the hospital that Mum was a palliative care patient and so she refused to offer any support for rehab. For a very long time (even before the Covid days, she refused to come and do a home visit. She did not even come to visit her post discharge to do an in initial assessment – this despite being her named GP. When she eventually did come and visit, she remarked how pleasantly she was surprised to see how well Mum looked. Sadly by then the windows for early rehab and post stroke care had long since passed.
The the SaLT is unable to approve the transition to food because the assessment they use is always coming out negative and their windows are small. So for example, they will visit and if in the 15 minute window they see no sign Mum is able to convince them she can safely swallow they will not move forward. They usually offer Mum some tea or drink and ask if who would like to drink. Mum always refuses and so they say she is not ready. I don’t know why Mum always refuses but I know she able to swallow and the reflex is strong. She is always swallowing during the day when she is having her PEG feed etc. The juices that build up in your mouth at meal times and during the day, the spit etc. she never spits it out. But she always fails the test. I don’t know if this is because is NEVER hungry or thirsty since she is fed and watered throughout the day. She has a liquid feed quota and a fluid quota and it is always given in a timely manner so her natural bodily functions of hunger and thirst are never triggered. That is the only explanation I can offer.
Not sure I can afford to pay for care privately and I am not even sure if that would be any better. Sometimes I think money is not the answer. I have paid for things at the top end of the market and found them to be no better than those available at mid or bottom range of the market, though there is a saying which may be true that “You get what you pays for”. My apologies for the even longer reply to your reply.
Wishing you all the best and thank you again for your input to my post.