Mum passed away very peacefully on Wednesday night. I hope you don't mind the honesty of this post but I hope our experience may help another family.
Mum was cared for in a nursing home, she'd been there since late 2019 so through the pandemic and restrictions.
Her MSA deteriorated significantly over the last couple of months, her speech almost went completely, she declined her medications as her swallow just became too much work for her. Eating on the whole stopped about 6 weeks ago, liquids about a fortnight ago. Things just slowly got slower.
She had also developed a sore under her chin, as it progressed, the nerve endings were affected so thankfully did not cause her any pain.
As a family we had always talked about this stage and what she wanted. She was clear about no interventions, even down to no antibiotics and even close to the end she was able to indicate to the nursing team and GP what she wanted.
She wanted to be calm and comfortable - even before the pandemic we had worked with the local hospice and GP to make sure the 'pack' was at the home just in case. So when things changed quite quickly, we were able to access this with little fuss. And the syringe driver was ready when we needed it last week.
We had good conversations with the GP in preparation so later conversations were easier.
Mum didn't want a pressure mattress, she's had one in hospital 3 years ago and hated the movement, despite pressure sores appearing towards the end we were guided by her, she wasn't in pain, so it didn't arrive!
Over the last couple of years, knowing what we did about MSA, talking to other families and being very open about every stage meant this stage wasn't something we feared. We had the knowledge as ever to navigate it, make it as good as we could for all of us. To also help the nursing home team see the way MSA does progress.
The last week, however long and hard it was, I still don't know how mum kept going for so long, was a valuable, family, together time and something I will treasure.
I thank you all for the support over the last 3 years especially at the beginning, which was so hard, due to lack of knowledge, ours and also of the medical support we just didn't have. We are the experts on how MSA affects our loved ones, we shouldn't have to shout as loud as we do but this is the joy of rare conditions.
I just hope we can find a way through this to expand that knowledge. But let's keep shouting and however hard it may be, please talk about this stage, while the living time is so important, the end part is just as important. We are sad, but there is a peace that we did everything we could.
I will stay around, I'm always more than happy if anyone wants to get in touch.
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TK-67
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Thank you so much for posting this. Especially for all the details about what you did for your mum and how it worked out. You did well for her and it's an encouraging story for how you can deal with a sad but inevitable outcome.
In the last month thinking about end stage planning/palliative care has been on my mind. I believe it is important to know what it going to happen for the family as well as for the person with MSA. There is a tendancy perhaps to leave thinking about this and making decision until later. Unfortunately MSA is unpredictable and , as I have found out, you never know when it is going to speed up and throw some more symptoms and deterioration at you.
Coping with symptom management, multiple appointments with various NHS MDT professionals and just everyday living takes so much of the week up but I want to make a start on end stage planning. Where do you suggest I begin ? I'm up at the hospice once a week so maybe with the doctor up there ?
yes the hospice is a very good place to start. In case you can’t make the decisions make sure you have written plans and also LPAs. Don’t be afraid of making it clear what you want even if it feels a bit ‘mad’ … and talk to your loved ones so they’re aware. It is all about having a plan, MSA is a condition where that is so important, always having it so whatever happens it’s there. That takes away some of the fear.
What a lovely and informative post, so sorry to hear about your dear mum, our thoughts are with you at this sad time.Try and remember all the good times and look after yourself.
Thank you so much for taking the time to post this at such a sad and significant time in your life. Your words meant a lot to me as a “new starter” and I’m so glad you will still be around to share all your hard learned lessons. Take care.
Thank you for taking the time to write your post today. I'm so sorry for you on the loss of your Mum. But it sounds like you were there for her, & with her & her wishes all the way, ensuring what happened was her way. I used to work within a palliative care environment myself (admin), so know its possible to "have a good death" with appropriate planning, attention to the patient, their family, wishes and outcomes. It sounds like you were able to achieve this for her. Time to take care of yourself now during your grieving process and hopefully you and your family can still call on the hospice for support if you need to. Sending hugs. 💜
Hello and thank you for your frank but so helpful comments. You have, as you say, become an expert and that will be such a bonus for others if you “stay around”. You have been a fantastic support for your mum and so do take some time for yourself now.
So very sorry for your loss. Thank you for taking the time to share this post with us. I found it so informative. As others have said it is now time for you to grieve and rest. Your good work is done and your dear Mum is at rest. God Bless xx
Thanks for this wonderful post which must have been very difficult to write. As the sufferer I can't tell you how relieved and reassured I feel as I am beginning to get a little frightened.I won't say I'm sorry you lost your mum because the relief that shhee won't be suffering now must be prevalent in your mind.
we lost my dad march 2020 just before lockdown , he didn’t want to carry on , no quality of life , couldn’t talk anymore , he stopped eating and went peacefully, miss him every day , his lovely smile and great sense of humour , even when going through it all
have lovely memories of him
try and of the lovely memories before the illness , that’s what I do
Thank you so much for taking the time to write this post at such a difficult time for you and your family. My mum has MSA and is slowly deteriorating (no mobility but can still talk and swallow). I must admit you have made me realise how unprepared we probably are, we are not lucky enough to have lots of MSA experts around us so, like you say, have to fight for an understanding of what Mum needs (thank goodness for MSA nurses). This is a wake up call for me to make my mum's passing as peaceful as possible. I saw the link you posted below so will start there and brace myself to start talking about this with Mum. Your post really is very important to write so thank you, sending you and your family love and prayers as you move forward. ❤
My husband is suffering with this condition and is thankfully at home. His eating habits have changed particularly over the last 6 months. I think it true to say everything is such an effort for him. He has a plan and hospice is his preferred eventual place, as are his wishes with GP and hospice team. Can you confirm what kind of actual care and nutrition were given when your mum couldn't eat and drink? I have this awful fear that when the end comes it's a literal starving to death. I can't bear the thought of any suffering, our family members have already suffering enough with MSA . I try not to think of the end phase too much but your post has pointed out a possible outcome.I feel for your loss and my condolences to you and all your family. My thoughts and prayers are with you. Big hugs.
i read somewhere that slow starvation is not difficult..i think it was a reference to Indian practices. when my husband died he had eaten and drunk minute quantites for several weeks and was nothing but skin and bones but he slept lot and seemed to be very calm and content.60 years ago i had hyperemesis gravida ans was in hospital on a drip--literally slow starvation and perfectly happy!..I heard a nurse say we are going to lose this one ...It woke me up and made re realise that I was ill and needed to fight but i had literally no idea things were so bad until she spoke.I can only imagine that is what it nay be like for them as well
That sounds reassuring. When Peter passed it happened quite quickly. He did have subcutaneous fluids and morphine to ensure he was comfortable. We couldn't get his gabapentin in. I know he had a lot of pain if he missed his meds. So this was important.He too ended up sleeping alot and went on to die peacefully. For which I am so grateful for. I would have hated for him to have suffered. MSA had already taken so much from him.
I'm so sorry to hear about your mum but it's obvious that you were with her every step of the way and I have no doubt that she will have been aware and comforted bythis. You could do no more than you did and your mum sounds a very courageous lady.
I was diagnosed with possible MSA in 2019 and to be honest I wasn't convinced that this was any more than an undiagnosed vitamin b12 deficiency 20 years ago which had damaged my nervous system. However, this year two things have happened that have me more concerned that apart from the untreated b12 deficiency (for about 3 years before starting b12 injections 20 years ago) that I may indeed have also contracted this condition. Firstly I found that I developed REM Sleep Behavior disorder. I found myself jumping out of bed, as I was jumping in my dream and once hit my wife on her back when I believed something in a dark room was coming towards me. But in line with your mum my voice has changed in the last 3 months. Sometimes it's very whispery, sometimes lower or gravelly than normal and even occasions when nothing really comes out, sort of like air, until I push harder. I'm not going to pretend that I'm not anxious, I can't sleep some nights. I've just had my first Grandson and the thought of not seeing him grow up ties my stomach in knots. I suppose my reason for writing this, apart from my sincere condolences, was I wondered how your mum's voice started changing and eventually went. If you can bear to talk about that it might make my mind up one way or the other, but if this is too hard to talk about I completely understand.
Thank you so much for posting this. I feel for your loss and my condolences to you and all your family.
My mother was diagnosed with Parkinson in 2016. As her symptoms got worse in 5 years , In 2021 doctor diagnosed its Parkinson plus(MSA) , within next 3-4 months she started having swallowing issues and doctor suggested for PEG(October 2021). Last week she undergone tracheostomy because of breathing issues. She is on wheelchair , 100% assisted from last 3 years. Its getting difficult for us to see her suffering. She can't move , speak , eat , this disease has no boundaries. I feel so helpless seeing my mom in this condition. My father is taking good care of her with 24 hr. helper. I came back from United states to India in 2020 to be with my parents but its getting difficult to see my mom suffering. I am praying to God daily to end her suffering. I also lost my sister in 2017 because of colon cancer(diagnosed in 2015) , not sure why god is giving my family terminal illness diseases which are incurable.
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