Anticipatory meds

[Keycode]

Hi, my mum's GP has decided that we should have some anticipatory meds kept at the house in case we need them. I know only to well that these are only used in the final few days of life after losing my mother in law to cancer only a week ago. I just find it strange why the GP has decided she needs to have these meds in the house now when her condition has not really changed a great deal. Just wondered if anyone else has had similar conversations and how they feel about it. I have spoken to the community nurse today who has tried to reassure me that they may not be needed for a while yet but still can't help worrying.

[Yanno]

I’ve heard this called a “just in case pack” and they are sometimes suggested months or years before being needed. They are there just in case.

I really wouldn’t worry but should you need more reassurance why not have a word with your MSA specialist nurse?

[Keycode in reply to Yanno]

Thank you xx

[Elletheelephant]

Hi. I

I too was a bit taken aback when we were given this pack , I didn’t think it necessary then. But we accepted it and put it away about 9 months ago. Last week we needed them and it was just easier for the medical team that we had them in the house , as it was in the evening and just made things quicker.

You may never need them , But if you do it is good to know they are on hand..

I hope your Mum continues to remain as well as possible, and wish you both reassurance

[Keycode in reply to Elletheelephant]

Thank you xx

[Kiwimagic]

Hi key code

We had them and did not need them, however,

I’d prefer to have them incase they were needed. Driving around out of hours trying to locate a pharmacy would only add to your stress.

Hope your mum continues to plateau. X

[Keycode in reply to Kiwimagic]

Thank you xx

[Hidden]

We have had them in the house now for the past 3 years. We broke into them last week for the first time because my wife was having anxiety problems. She was only givine a small injection to carm her down, but that is all she's had. Although they are used as end of life meds, they are also used as maintenance meds with MSA.

[Keycode in reply to Hidden]

Thank you xx

[Hellebelle]

Hi Keycode,

Dad's GP prescribed these months ago for dad as it is so difficult to predict when someone is end of life. We were upset at the time but now find it comforting that we have these ready should they be needed and there will be no delay.

The whole issue of death and dying is so difficult to negotiate and we are finding the conversations around it very upsetting and difficult but it does need to he talked about.

Wishing you and your mum lots of love.

Helen xx

[Keycode in reply to Hellebelle]

Thank you xx

[Yanno in reply to Hellebelle]

Hello Helen

At this week's Three Counties support group we had a discussion about just that..the whole end of life care situation. In that environment it wasn't as difficult as I thought it might be otherwise. We had a good mix of those with the condition and carers and this topic was discussed with the seriousness it deserved and yet in a positive constructive way.

You must come to one of meetings sometime Helen so we can put a face to your name!

Take care, Ian xx

[Hellebelle in reply to Yanno]

Hi thank you Ian. I would love to come but its usually on a day I work. My days off are Monday and Fridays.

I hope to be able to attend at some point.

Best wishes

Helen

[Yanno in reply to Hellebelle]

I know, sadly the hall we use is only available at certain times and we have opted for the last Tuesday in every third month. Next meeting 25th February when we are talking all things OT and physio.

[Hellebelle in reply to Yanno]

Hi, I might be able to change my days. I will have to see. Thank you for updating me. Helen x

[Hidden]

Just wanted to say I really appreciate this thread and am going to ask for one. You could be saving us a lot of stress! Kx

[heysunshine]

Hi Keycode,

Can anyone tell me more about these anticipatory med packs?

I live in Canada and am not familiar with any of this... in the UK you seem to be more advanced with the care of MSA patients. Most of the medical community here seems to barely know about the disease little line about treatment measures.

I'm ranting a little because I feel so helpless, frustrated and tired!

I just watch my wonderful husband of 30 years deteriorating before my eyes! He is able to move from bed to power chair but that is the extent of it under his own ability. We have ordered a power wheelchair with anticipating the next stage. He feels so bad to have to ask for everything he needs knowing I am feeling stressed working fulltime and carrying the load for the household. I feel terrible for being resentful of this disease for stealing our future together. I try very hard not to display my feelings or vent them in front of my husband. 😤 I know there is no fault to be laid... but this disease just sucks for all involved even when we try to be brave and be optimistic with each new day.🤬

OK. Rant finished. Thanks for giving me a place to express myself.

[Keycode in reply to heysunshine]

Feel free to rant I totally understand your frustration. This disease is horrible and cruel. My mum is much the same she is mainly bed bound but is able to tolerate sitting in her chair for a couple of hours a day. She can no longer talk which I find the hardest thing of all and know my mum finds it very upsetting. She was originally diagnosed with Parkinson's 10 years ago but then got rediagnosed with MSA about 3 years ago. Think the amount of support from medical professionals varies in the UK but we personally feel my mum's care has been very poor. No one seems to have any knowledge of the condition and getting any advice has proved very hard. The gp seems to only be able to treat general symptoms which are common to all patients such as bowel problems but anything that is more associated with MSA such as my mum's breathing and swallowing problems then they just don't know what to do and so can't help us. It's just horrible watching mum suffer and not being able to do anything for her. However the specialist nurses at the MSA trust have been a great source of support and have even advised the gp on my mum's condition but unfortunately the gp has not always followed their advice. The anticipatory meds are a set of medications which are kept at the house in case my mum needs them but they are very much something that is given at the very end of life to make things more comfortable for my mum and have to be injected by a nurse. Hope this helps sorry if I sound negative about it all. This site is great for sharing experiences and advice and everyone can relate to how you are feeling.

[heysunshine]

Thanks Keycode,

at least I can have a voice and know that people hear me and understand.

Much appreciated!

[phamwales]

HI

One of the biggest risks, explained to us early on, is the potential of a chest infection.

After the first infection we held the antibiotic on standby and as a consequence it was there in the fridge when the next infection started on a Saturday evening. It proved to be so helpful.

We also held the pack of support drugs, which just sat on a shelve and was never used.I guess we forgot about it but it was always there in case.

For most of us this is a journey that we've never had to think about or consider the twists and turns. So we decided early on to listen carefully to the folk supporting us. Now on reflection, i think that was the right thing to do.

[Keycode in reply to phamwales]

We also have a constant supply of antibiotics kept in just incase of chest infections. Luckily my mum hasn't had too many but when she does get an infection she is very poorly with it and her MSA symptoms are a lot worse.