The rollercoaster continues... - Multiple System A...

Multiple System Atrophy Trust

1,640 members1,295 posts

The rollercoaster continues...

TK-67 profile image
3 Replies

After my first post following my mum's re-diagnosis. our lives continue to be traumatic. Firstly thank you to everyone who responded, it really did help to know there were other families out there who understood.

Since then we struggled with the nursing home making any attempts to understand mum's condition, she continued to suffer and experienced extreme Sleep REM problems, daytime hallucinations and challenging behaviour. After one fall we flagged to the home our concerns and unfortunately a week later mum fell again and this time broke her hip, resulting in a hospital stay and surgery. On a good note this has opened up access to a new set of experts and finally her drug regime has been overhauled and we have seen some improvement, however some of the more challenging behaviour is creeping in again.

We have though made the decision for mum to not return to the home due to their lack of care and understanding. We've found another that we hope can meet her now very complex needs - she's also now experiencing some blood pressure problems too and we have the challenge of getting her mobile again.

We're all feeling bruised by the experience - that we got it wrong for mum and she ended up in hospital - her worse nightmare. We're also finding we're having to pay a premium to get the right care, we're keeping everything crossed that due to the complexity we will get some funding. Far from fair though.

Has anyone else experienced the behaviour challenge - mum gets very sad, then angry (sometimes verging on violent and not like her at all) and then quite rude, she's been mocking the nursing staff today?

Tx

Written by
TK-67 profile image
TK-67
To view profiles and participate in discussions please or .
Read more about...
3 Replies
Kiwimagic profile image
Kiwimagic

Hi Trudy,

Sorry to hear about your mum.

I got books from the MSA trust when my dad was in hospital and I gave them to the staff to read so that they could learn about the condition.

The different personalities are a trait of MSA and although it’s horrible for the family to watch your mum can’t help it and the staff should understand.

I hope her hip heals and that she is soon able to mobilise.

Sending you positive thoughts and prayers.

X x

TK-67 profile image
TK-67 in reply to Kiwimagic

Thank you - It’s so hard to watch, there are elements of mum just so extreme. I’m going to speak to the consultant again tomorrow.

Trudyk, sorry to hear of the problems you are encountering. A great idea to get a new home that can cope with the condition. Unfortunately MSA is rare and therefore not many know about the symptoms and challenges and we have to educate professionals. I hope the new hope is better, monitor and educate them.

Behavioural challenges are not usually as a direct result of MSA but more to do with changes in environment, drugs and frustration by the sufferer as the condition robs them of life.

Keep up the good work.

Paul

You may also like...

5 weeks since diagnosis - managing the rollercoaster

rapid deterioration in her symptoms. She moved to a nursing home 4 weeks ago for some respite and...

NHS Continuing Care

thread for this subject. I wrote a about the continuing care (cc) application we had made a couple...

Care at home after brief trial in nursing home

regarding arranging nursing home level of care at home for their loved one. My Mum has MSA - she...

Pain relief - what's best?

been touched. Now the nursing home team are using it, she's very different to how she was then, far...

Next steps: living will, DNR and options

received my Mums new diagnosis of MSA-P and I was in complete shock. Mum is now out of hospital...