End stage Parkinsons


#1

Hi I am new here and looking for support or help. My Mum is end stage Parkinsons. Actually Parkinsonism due to medical misdiagnosis 9 years ago. Mum never went through the early stages of Parkinsons but went straight into terrible symptoms due to huge doses of anti psychotics which were later admitted to not be needed. Mum is now end stage.The specialist tells me she is surprised Mum is still alive and has not aspirated etc. I have found this entire journey devastating and now I am finding Mums suffering almost unbearable. My Dad died quickly 8 weeks ago and I am living in his flat and visiting my Mum every day. My Mum now is completely rigid and cannot move at all. She needs total care with every aspect of living. I feed Mum her lunch everyday. She has trouble breathing ( is on a nebuliser), she is quickly losing her swallow ( even on pureed food) and is going blind. She is in so much pain. Her anxiety is through the roof however whenever I request PRN anxiety medication it is usually refused ( she is in a private hospital). Same with her pain. She is on a Fentanyl patch but her pain is overriding that now.( She has morphine PRN but the nurses will not give it to her). Sinemet is no longer working. Obviously I am heartbroken for my Mum. Her greatest fear was going blind. If anyone is in a similar situation I would love to hear from you. Hospice is involved however because Mum is in a private hospital they have limited input. Thank you to anyone that replies. i might add because this is a UK site that private hospital here means a young nurse and a doctor once a week who never visits Mum. I guess I am just looking for someone who understands the devastation of this disease.


#2

Hi @sunshinel,

A warm welcome to the forum.

My deepest condolences go out to you and your family for the loss of your dad. I can’t imagine how hard it must be for you to witness your mum’s health decline in addition to losing your dad - if you ever need any emotional support, there are over 350 volunteer - led local groups throughout the UK that offer peer support to anyone affected by Parkinson’s. There are also counselling options that you may wish to explore, there’s more info on this here, https://www.parkinsons.org.uk/information-and-support/emotional-support-and-counselling.

We also have a great team of highly trained advisers via our free and confidential helpline that can offer you more help and support with the care of your mum. Feel free to give them a call on 0808 800 0303.

I hope you find this information useful.

Best wishes,
Reah - Forum Community Manager


#3

Hi Reah,
Thank you for such a warm welcome to the forum. Unfortunately I don’t live in the UK ( wish I did!). You seem to have good support services there. I have just got back from visiting Mum. I had to leave early as I started uncontrollably crying when Mum said she just couldn’t take anymore. The dam burst and thats no good for Mum. So hard to be strong for her all the time and she can see right through me. I am living in a city with absolutely no support so all the time alone is not helping. Anyway, thank you again for your good work.


#4

Hi @sunshinel,

No problem and you’re welcome.

I can understand the rationale with wanting to leave so that your mum doesn’t see you distressed, however, I can imagine how hard this must have been for you. Even though you’re not based in London, you’re still more than welcome to call our helpline for more support.

Do take care.

Best wishes,
Reah