I’m new to the forum and have joined as a way to reach out for support and connect with other carers.
A bit about myself and my mum: I’m 31 and my mum had an ischaemic stroke back at the beginning of March which has affected her left side. She is completely unable to walk at all, or stand unassisted. Her left arm has seen some improvement but it’s still a lot weaker and harder to control. She was in hospital for almost 7 weeks and had a really terrible experience, and is now at home. Sadly, it was something that most likely could’ve been avoided, however the paramedics and A&E staff failed to check her for a stroke after her legs first gave way, then sent her home (telling us she was medically fine) for 3 days to fend for herself, before she fell again and was diagnosed with a stroke. We are obviously really concerned that the stroke did significant and lasting damage over those 3 days.
My younger sister and I are currently providing round-the-clock care for her as she isn’t able to live independently and the re-enablement care they’ve set her up with isn’t enough. I travel from London and stay on her sofa for half the week and my sister lives in the same town but will also stay the other half of the week.
Mum has the re-enablement team visiting her at the moment but they only provide 19 days FOC and after that she has to pay. It’s very difficult as she needs far more care than someone popping in 3 times a day to take her to the toilet. She has tried using the she-wee style bottles but hates them and can’t seem to use them properly.
Both my sister and I are working full-time jobs alongside giving her full-time care (we are able to WFH) but it’s all incredibly exhausting and we’re left with zero time for anything else. It feels like there is so little support available unless you have ample amounts of money to spend, or your parents are elderly enough to go in a care home. She is only 63 so she in no way wants to relinquish her independence in that way and has been finding it emotionally devastating. We were told that a physio would be coming by in a couple of weeks but nobody so far, so my sister and I have tried to teach ourselves her exercises.
Any advice at all about the whole experience that anyone in a similar situation has to offer would be so appreciated; as I said, we’re both pretty young still (me 31, my sister 27) and this came out of the blue for my otherwise healthy mum, so we’re wildly unprepared and a bit overwhelmed…
This really is difficult for you. I can sympathise to some extent as a wife of one who has had similar experience with stroke and has more than mobility issues [sight is reduced, reading all but impossible, speech to some degree, and only a little sociability outside the house] .The hospital sent us home even without a paracetemol the first time it happened and only 4 months later recognised that he’d had one stroke already and then had a worse one and 2 years later another one. I have had to work from home and am having to be semi-retired for him. My income is vastly reduced obviously though he managed to get a PIP and social services help. As long as our savings are low enough, they contribute a lot to the care package we arranged; that is only2 times a day 7am and 8.30 pm and they don’t do much more than ensure he washes, gets dressed [lots of help needed] and I do the rest though get 4 weeks a year respite in dribs and drabs of time out. Your situation is hardly tenable for long and social services will have to be called in to assess financial aid and contributions for 4 visits a day at least; I hope your mum’s arm gets stronger. Physio is imperative but we had a mere few weeks and then had to arrange our own; it was too late really. So pester the Physio -direct or via GP until you get a regular attendance. There are online exercises from PACES - in Sheffield that work slightly but persistence and motivation are needed by the stroke patient and patience galore from them and you! My husband lost any motivation sadly. We gave up as it petrified him to travel to Sheffield and it cost a lot too for each session whether online or in person; since he didn’t practice in between he didn’t progress really. He really hates me driving him anywhere though in 4 years we have managed more recently to get him to go the shops once in a blue moon! Keep your mum motivated somehow. It need not be permanent. The brain is plastic enough to change routes to mobilise arms and legs but it needs constant exercise to do it and establish new nerve routes! May you have the means to find help beyond the two of you that really works. Persist. Pester. Find a local stroke group. I haven’t found one in our town. It is a huge shock to everyone’s systems. The forum can listen and somewhere there is someone who answers with some way ahead. Sorry I have no message other than persist in finding help! Keep hoping for someone in your mum’s town to help besides you and your sister. All strength and grace to you!
@maryjo239 welcome to the forum sorry to read about your situation. It must all be very difficult for you.
It sounds like you might need to get a social care assessment done for your mum. The situation you find yourself in is not sustainable long term as you & your sister will collapse with exhaustion.
Have you tried ringing the Stroke Association helpline? They should be able to provide some advice for you. You’ll find their details at this link.
@maryjo239 welcome to this group, sorry you had to join it. firstly well done to both you and your sister, you are both doing brilliantly. I suggest you contact your mum’s local council and speak with social care, start the ball rolling now, check what your mum is entitled to. Speak with GP find out if they have a community social prescriber, who can assist you all, they can help with grants etc. speak with the charity Dash as well as citizen advice bureau. Phone the stroke association too. chase hospital for any outstanding appointments, explain the situation regarding being sent home. Most importantly ring and speak to as many organisations you are given doctors consultants. just make your voice heard but calmly. PALS at the hospital are brilliant , not just there for complaints.
good luck
Chris