Insight into my Mum's last few weeks

[Blubetty]

Hi, I've been on this chatroom for a few years now and my first post was desperately trying to work out what signs to look out for so i had an idea how much time I had left with Mum. Mum passed away 4 weeks ago at the age of 82 and one of my first thoughts was, I need to share her last few weeks in the hope it might be useful for someone on here.I think Mum first started getting symptoms back in 2012, she kept falling and veering to the right. She wasn't diagnosed until 2019. She was completely bed-bound by early 2020 but then seemed to plateau until early 2023 when the final decline in speech, eating and drinking. Mum was only able to move her left arm slightly over the last year and her speech had declined so it was hard for her to have a conversation. Over the last 2 months she became very quiet. She could still swallow but had no interest in food whatsoever. She would eat a few mouthfuls then signal she didn't want anymore. The last two weeks the most physical sign something had changed was she couldn't close her mouth, it hung open like she'd lost the muscle power to close it. She was starting to refuse even one mouthful of food and struggled to swallow her medication and couldn't suck on a straw to keep hydrated. Her mouth became extremely sore, her lips swollen and this further inhibited her ability to purse her lips around a drinking straw. She slept a lot, some days it was hard to wake her. We eventually had her admitted to hospital to see if it was an infection affecting her rather than assuming she was giving up. They put her on a drip, gave her antibiotics and I got to spend a few days visiting mum in hospital where she appeared to be improving. She was drinking and eating a little, talking a little and her eyes were open. However, something was missing from her expression. I couldn't quite place it until we got her home and she immediately deteriorated again. I can only describe it as a 'parkinsons' type mask came down. She lost all expression, no smiling, frowning... Nothing. It was quite disconcerting to walk in and for mum to look at me with no sign of recognition or interest (it's the only way I can think to describe it). I knew she was in there but she couldn't communicate at all. The next day her eyes shut and never reopened. It was almost as if she was in a coma, but I will never know whether she could hear us or not. A nurse gave us some advice at this point saying, as a rule of thumb - if a person deteriorated week on week they had weeks to live, if they deteriorated day on day they had days to live. So we knew we only had days left. Every medical professional who saw her in the last few days said there were no signs she was in pain and that she looked peaceful. So Mum passed sometime in the early morning of 14th March, at home in bed, with my Dad sleeping nearby. I am thankful that she wasn't in hospital and went peacefully. She hung on till mother's day and her wedding anniversary had passed then let go. I'm sorry if this is an upsetting post to read but I know I wanted some sort of clues for what to look out for. If this is helpful to even one person out there it has been worth sharing. Thank you for taking the time to read this x

[janecbain]

Thank you for being brave enough to write that down , It cant have been easy. I lost my mum to Alzheimer's this time last year and it still hurts to think about it.

As to whether it is helpful to know the kind of demise that I may be instore for is another matter entirely! But I like to stay hopeful and active and I hope that my end will be swift and painless but who knows what is in store for us?

For carers of people suffering with MSA I would say that it may be helpful although I think its worth remembering that everyone is different? For us who have the unhappy luck of having the disease may find the details a little worrying but as I say everyone is different so lets hope that our demise is swift and painless come the time an in the meantime lets enjoy what time we have to the full!

[Kaye31]

thank you so much for sharing your personal story I’m sure it will help someone here. Lots of love xx

[Helenhooter]

It's very helpful,thanks. So sorry for you too xxx 😘

[Derkie54]

Hello,

So sorry to hear about your Mom , it must have been a comfort to you that she was able to stay at home as she wanted.

This is a very helpful post, many people ask about stages and it's a good example, thank you.

Remember all the good times and take care of yourself and your Dad now.

Kind Regards

Derek

[Lassie1331]

Thank you for giving us a bit of insight of what to expect. I know everyone is different but there seems to be some patterns. I find the forum helpful to hear of other’s experiences.

[Jolanes]

So sorry about your Mum xx

[Gill-C]

It was most helpful to me as an MSA sufferer. Sometimes hard to read, but I could have stopped at any time. I’m sure it was terribly hard to write and I wanted to thank you for your bravery and for thinking of us on the forum at this time. I send you my heartfelt sympathy. It is always hard to lose one ‘s mum x

[Hidden]

I also lost my mum to MSA recently and I also searched in this forum in the period before for information on how those last weeks, days might look given that visiting involved a lot of travel. In her final couple of days I was with her, she followed a similar path and finally passed peacefully. just want to thank you and other contributors for bravely sharing. thank you

[Blubetty]

Thank you for all your replies, as some of you have said, this horrible disease is different for everyone I apologise if I have upset anyone by my post, my main aim was to document my Mum's experience in the hope that some patterns in the progression of this condition may start to emerge over time that might help others. Mum lived with this for much longer than she was meant to and kept her speech and swallowing until right near the end - so hopefully this will give a little light to some people on this journey. Thank you for all your kind words, this chatroom has been vital over the last few years. Best wishes to you all x

[Derkie54 in reply to Blubetty]

Hello,

You won't have upset anyone, most people will have found it very helpful.

You said " Mum lived with this much longer than she was meant to " how long did she have MSA for if you don't mind me asking.

My wife was diagnosed in 2016 but I noticed big changes with balance etc etc more than 25 years ago.

Take care

Derek

[Blubetty in reply to Derkie54]

Hi Derek, the first big event that I can pinpoint was in 2012 when she fell heavily while walking home with friends, but she'd been suffering from 'vertigo' type symptoms for a few years before that. She wasn't diagnosed with MSA until 2019 by which point she was in a wheelchair. I think it's good to document these time periods to give others hope as I'm sure we were told lifespan on average was less than 10 years. My thoughts are with you both as you continue on this journey x

[Heartbrokengirl]

Thank you. Thank you. Thank you. 💕