End of Life Care pathway

Nsims 1 year ago

1 reply

Hi. Don't know where to turn for advice information. My mother who has alzheimer's (i think marie curie will help with all things?) and was put on pathway yesterday, and today the nursing home has already started a drug to calm her, she was very distressed. It has all seem 2 happen very quickly. Considering a week ago they were trying lots treatments and looking at bladder scans and bloodtests. Dr told me on Friday he has seen lots of this in elderly people and was looking bad. I don't know where to go or what will happen or how long. I am trying to go see her every day , I have POA for her and don't won't her to have any invasive procedures as I her care plan and her wishes, just seems very fast. I live nearest 45 mins away , rest of family over 1 hour and half. So I doing everything, and I don't know even what happens in the end like funeral directors or what happens to the body. My father, divorced long time ago, but phone each other regularly, not power of attorney, is not being realistic . My brother has not try to visit since this. And doesn't speak to me. My oldest sister is being sympathetic but her mother in law has serious problems recently too and she would travel here anyway. My youngest sister has shared and separate POA with me. Is going holiday 2morrow for 2 weeks and I cannot tell her this b4 she goes. She always says to me do what ever u think is best. She will not visit either. I don't know what to do. I want to visit every day , have told nursing home to phone day or night for updates, but I have rheumatoid arthritis and FIBROMYALGIA along other health conditions, and am afraid I will be exhausted if care pathway is long. Can anyone give me any guidance or advice Thank you N sims

Brigette 1 year ago

Hello Nsims, I am sorry to read about your mum and everything that you are experiencing. It sounds like mum is going through lots of change at the moment.

 It also sounds like you have a very good understanding of what sort of treatments or procedures that mum would or wouldn’t want. I am pleased you have been able to have those conversations with her. Knowing what our persons wishes are can make it more comfortable for us to make decisions on their behalf when we need too. 

Being a loved one’s primary carer can feel like a lot of responsibility and I am hoping that others reading your post will be able to share their experiences with you. But we don’t want you to feel alone and want to let you know that our Support Line is here or you- whether we talk here, via webchat or on our freephone number.

We also have lots of information which you may find helpful. You can look at here: http://https://www.mariecurie.org.uk/help/support/being-there

Please remember though that for you to be able to support your mum you also need to look after yourself and your own wellbeing. So please do take some time to meet your own needs too. 

And feel free to ask questions here or update us on how you and mum are doing.

Take Care

Brigette- Support Line Officer