A frustrating update

[TK-67]

I haven't posted an update on mum for a while. She's spent the last 20 months being looked after in a nursing home, sadly we weren't able to look after her at home for many reasons. We've also been through what so many have thanks to lockdown and continue to with limited, quality contact.

Her condition has significantly deteriorated over the last few weeks, with major issues with behaviour and cognition. All the normal culprits like infection have been explored and her drug regime is being reviewed but this time it feels very different.

Sadly her home as decided that she now has too many dependencies and they are no longer able to meet her needs so we're now looking at her options - not sure what those even are!

As ever with MSA we're coming up against so few people really understanding the nuances of the condition. Thankfully the MSA Trust and our neuro specialist nurse is helping as we try to explore the next move, as we have no idea what will come next or how we meet those needs. And for the first time after sorting everything ourselves for the last couple of years I've asked for a social worker.

I guess the reason for my post is just to have a good old shout about how awful this condition is - without a pathway, social care is a minefield and us families have to shout so loud for our loved ones.

And I lost a local review of our CHC application last week - due to the pandemic this had taken 10 months from the original assessment. And ironically given the last couple of weeks things have changed a lot but we have to start all over again! How soul destroying is that process - we are truly set up to fail!?

It really is just exhausting - sending out support to all of us having to live with this. We'll carry on for mum, we have no choice in that but boy is it hard!

[Hellebelle]

So heartbreaking to read this. I am so sorry you are having so much trouble navigating the system. I think it varies so much depending on where you live. We were so lucky to get a person from Social Care whom understood the condition as she had come across it before. She helped us with our CHC application and it was relatively straightforward. I realise this is not the experience of many and it shouldn't be down to luck.

When dad had care at home however after he was successful with his CHC application, the carers were not familiar with the condition and we were not happy with the care he received. There really should be more training for carers dealing with these complex neurological conditions. When dad was eventually admitted into the hospice for his final few weeks, we could visibly see him relaxing and looking relieved. It seemed that he knew that he was in good hands as the staff knew how to care for him and meet his needs.

I wish you strength in the days ahead. Let's hope you can find a way through this. 💕

[TK-67 in reply to Hellebelle]

thank you for responding, our neuro nurse has been amazing today and she's initiating another CHC assessment immediately. It's such a roller coaster - totally agree that more training is needed - we can all see examples where it can be done! Our hospice had been supporting me - its been invaluable.

[Helenhooter]

Keep fighting, chin up XXX 💪😊

[StephWx]

I feel for you so much. It’s so emotionally draining fighting against people that don’t understand the condition! Me and my family are currently going through all care options with CHC. My Nan was granted the urgent CHC funding to have full time care at home, but it’s been an absolute nightmare. A carer started that had no clue about the condition, she thought my Nan would get better in her care and we were really upset with the care my Nan was receiving in her hands, so she left. We have now just been told a specialist nursing carer will be starting this afternoon, so we are keeping our fingers crossed this works out and she answers our prayers! It’s an absolute rollercoaster and I’m just glad we have this platform to be able to share our experiences on here, we are not alone, sending love and I’m hoping it all works out for you and you’re mum xx

[TK-67 in reply to StephWx]

Goodness, I hope the new carer is better! I guess we're just so disappointed at how this is just so hard, thankfully the specialist nurse is now trying to sort things but even she says she has so many battles around even just basic understanding! Sharing does help though!

[Annietutt]

Good luck with it all. You are right to rant, we shouldn’t have to fight so hard. Caring for someone is exhausting enough without having to use precious emotional energy to deal with “ the system”.