Hi, I’m Richard. I’ve just become the fulltime carer for my 81yo Mum. I moved in with her last October, but since May she has had mobility issues meaning she is currently unable to walk and can barely stand with assistance. The past 4 months she has been in hospital 3 times for over 70 days in total - the first was to investigate her mobility issues, but no conclusion was reached. However, she was started on insulin injections for type 2.
After a few days from discharge the first time, she was rushed back in with sepsis, for another lengthy stay where a little more testing was done on her mobility, and a suggestion of diabetic neuropathy. She got an occasional visit from a physio who would keep asking her to lift her legs into bed, despite Mum being clearly unable to, and then the physio would go. A mobile commode was delivered to the house to save Mum having to need to walk the 5m or so between her chair and her en-suite, which she was losing the ability to do.
Just under 2 weeks from discharge the 2nd time, she went back in with a kidney infection and contracted c.diff whilst in hospital, so the 3rd stay was again quite lengthy. This time she was struggling to stand, let alone move her legs, so she was introduced to a rotunda, and the physio this time (a much more attentive physio on the ward Mum was on this time - apparently there are ward physios?) was patient with Mum and worked her through some bed and chair based exercises, as well as getting some orthotic boots to help support her left ankle. A rotunda was delivered to the house before Mum was discharged.
So Mum was discharged after her 3rd stay, just over 2 weeks ago. I am just about managing to help her use the rotunda to swivel from her reclining/ejecting chair to the commode and back, but she seems to be finding it more difficult especially the past few days. Carers usually just do washing and dressing as Mum doesn’t need to go when they are here… Luckily Mum has a urostomy (for over 40 years now) so doesn’t need the commode to pass water.
At the weekend she was showing signs of another infection. She refuses going back to hospital on the not unreasonable assumption that it is hospital giving her the infections. The GPs (does anyone have a consistent GP nowadays, or just a rotating bunch of them from their surgery?) were waiting on a blood test, which we mistakenly thought was done last Friday by the district nurse, but that was actually for B12 and folate deficiency, and not for inflammation markers indicating a possible infection. So no antibiotics, but I do think Mum is getting over this latest infection just by waiting it out.
She is very despondent though - although we have this diagnosis of diabetic neuropathy, it was the stroke doctor telling us that after he looked at a nerve conduction study results, but he caveated that it was not his speciality, which leaves some doubt in our minds naturally.
I have pushed for an appropriate expert (neurologist) to explain what the long term outlook is - will Mum regain mobility if she gets some decent physio and puts the effort in, or is this as good as it will be and is likely to worsen to a point where she can’t even stand up to use the rotunda? If that happens, then what? How can we cope? Do we need a hoist? Make the bungalow wheelchair friendly?
At the moment Mum spends 24/7 in her chair, and is getting a sore bottom naturally. She refuses to use her bed because she can’t move herself - her arms are too weak and her legs, especially the left, have very limited movement and strength. She has just bought an electric bed that can raise the head and/or feet, but so far not even touched it, let alone used it.
She is also crying out in pain and occasionally confused during the night which wakes me as I have to go and check in case I am needed. It is very hard seeing my Mum so upset and angry with herself and her new limitations. Our only other family are over 200 miles away and most of them in their 80s too, and no friends nearby, so I find it difficult to feel I can leave Mum to head out to shops or the gym.
The STEPS care package is for 2-6 weeks, intended to help someone settle back into home life, but they are beginning to struggle because my Mum can’t stand to use the rotunda without significant help, and they are not allowed to physically help lift (for fear of back injuries which is fair enough although less than helpful). I am waiting for a callback from the case manager to see what she can suggest going forward.
All the best to everyone, Richard