End of Life

Jorbin

Registered User
Jan 30, 2018
103
0
when diagnosed with early on set altzheimers .

Do you think we should have the opportunity to discuss and with whom and how soon after the diagnosis.
 

Canadian Joanne

Registered User
Apr 8, 2005
17,710
0
70
Toronto, Canada
Yes, I do feel we should have that opportunity, if it is wanted. You are in a rare position, as usually the person diagnosed refuses to accept the diagnosis. You are a very unusual person and I admire your strength in facing this head on.
 

Jorbin

Registered User
Jan 30, 2018
103
0
Yes, I do feel we should have that opportunity, if it is wanted. You are in a rare position, as usually the person diagnosed refuses to accept the diagnosis. You are a very unusual person and I admire your strength in facing this head on.
Thank you Joanne. I do get a bit irritated by the Memory Clinic who keep on and on about living well with dementia because having dementia doesn’t make us stupid. We know what is best for us.
 

Kevinl

Registered User
Aug 24, 2013
6,050
0
Salford
Everyone should make their end of life care known whether they have AZ or not, all the decisions about what they want to happen to them if the worse did happen.
My dad died very suddenly from a heart attack and my mother's biggest concern was what he would have wanted, they'd never discussed it so every decision was "what would your dad have wanted? Cremated or buried, would he give his organs for transplant, although he had no faith would it be OK if mum went for her preferred option of a Christian funeral?
The questions were endless so some years later when my mum had to have a major operation she sat my brother and I down and told us what she wanted to happen if it did go wrong, she didn't want to be resuscitated if it meant she may be brain damaged, if she did die then they "can take anything they want if it's useful to someone else" so organ donation was what she wanted, I think the idea that her living on as someone else's heart, liver or kidneys mad her think she'd be living on too in a strange way.
I've done the same with my kids, they know what I want should something happen be it AZ or I get knocked over by the 29 bus, they know where the deeds for the house, my will and all the other things are, they know I want to be cremated and where I want my ashes spread.
Some parts of the question like DNR are things that need to be the NHS need to be aware of but most of what you want to happen to you is personal so it's a family matter as the family are the ones that will most likely have to deal with the situation at the end.
The longest I can remember on here still posting was a man 16 years after diagnosis, he came on and posted some really interesting things not least his recipes until he passed away from another cause, many people in the post diagnosed section on here were diagnosed years ago but they can still come on here and post some inspirational stuff and are living life to the full.
I wish I'd had quite a few discussions with my wife but by the time she was diagnosed (about 55) she went into total denial in a very aggressive manner, now I have to make all the decisions and have to guess what she'd want or what I'd want if the positions were reversed.
I'd tell her that if someone else came along then go for it, I don't feel that as she never said that I can give permission to myself to do that, lots of little issues that I'd have liked to know what she wanted if they happened but it's too late now to ask.
I go and see her everyday because I know she'd never have left me alone and when I'm asked for my input on medical decisions and her physical caring needs I just have to guess what she'd say if it was me in the home.
Everyone should make their future wishes known otherwise it's a bit like not writing a will, no one knows what you actually wanted to happen, so tell them, now.
K
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,443
0
Kent
I`m sure you could discuss your wishes for end of life care with your doctor @Jorbin.

I discussed it with my GP and his surgery has a copy of my advance directive as has my son.
After my husband`s funeral, my son asked me what I would want for mine and I was able to tell him I want the same his father had.
 

emp

Registered User
Jun 27, 2018
34
0
Hi Jorbin

There's nothing to stop you from making your own advance care plan, you don't need to wait for the medical professionals to instigate a conversation with you. If I can, I'll try to message you directly with some examples, but essentially all it really needs to contain is what is important to you, who is important to you and ideally what you would like to happen. It doesn't have to be in a set format and it can be as long or short as you like. When you've written it, keep a copy of yourself and pass a copy onto anyone else currently involved in your care. If you change your mind, just rewrite it and make sure everyone has the most up to date version. Bear in mind it isn't legally binding (because things may happen that is out of people's hands, much like a birth plan) but it is a statement of what you would like if at all possible should become unable to express yourself. Some info here: https://compassionindying.org.uk/ma...nning-ahead/advance-care-planning/making-acp/

For the legal stuff, you might need to take a look at DNAR (Do Not Attempt Resuscitation) and ADRT (Advance Decision To Refuse Treatment) if you feel you would like these put into place. These would be conversations with your GP which would then be put on your records

EDIT: There's a link here with some good examples of Advance Care Plans: http://advancecareplan.org.uk/examples-document-templates/
 
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