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Elderly parents

What to say or ask about an advance care plan for my mother?

6 replies

Choux · 18/09/2023 14:59

My mum is 90 with Alzheimer's and has been in care home since my dad died a few months ago. I have health and welfare POA.

I have been asked to attend a call tomorrow to discuss my mum including discussing an advance care plan for her. The call is with the Care Coordinator from the Local Primary Care team (which is the local team of GPs who attend calls to the care home and includes my mum's surgery) and the care home mgr.

I know they will guide me through it but I have no idea what I should be asking or saying. What am I even allowed to decide on behalf of mum since she doesn't have capacity?

I am ok with the DNR part as i had that previously about dad but do I need to give an opinion on antibiotics and vaccines (if vaccines are discretionary) given she has no current infections? All I know is that I want her to have as peaceful and dignified a death as possible when the time comes. And that means hopefully letting her pass away from something else before dementia makes her unable to speak, walk, toilet herself etc as there is no dignity in that.

Does anyone have any advice?

OP posts:
Nodancingshoes · 18/09/2023 15:32

We are about to do the same for my nan (98) GP has asked us to meet to discuss an end of life plan which I guess is the same? She is in her own home though. I'd be interested in any insights from those more knowledgeable also cos we don't know what to expect.

Lollygaggle · 18/09/2023 15:45

We had to do the same for a parent with dementia.
There are several things to be aware of and think of their and your wishes

obviously the first is a do not resuscitate order (dnr) so that no measures are taken to revive them if eg they have a heart attack

people with dementia , in the end stages stop eating and drinking. It is a natural way for the body to shut down. Many people take the decision not to continue with iv fluids or feeding and just have palliative care

The elderly and particularly those with dementia are prone to infections such as pneumonia along with other conditions . If they develop a medical condition will you want it treated eg antibiotics or other medication or perhaps an operation or do you just want palliative care eg control pain which may in itself hasten their end?

Alzeimer society link helps with some of the scenarios you might need to think over

Personally speaking I have completed for myself in my health power of attorney documents my wishes which are in the case of permanent mental incapacity no treatment of any kind except palliative , after caring for relatives with dementia and also after a devastating stroke.

Medication bottles on a table by the bed of someone dying at home.

Making Decisions for Someone at the End of Life

Being a health care proxy and making end-of-life care decisions for someone you love can be challenging. Learn what to expect.

wannabesilverfox · 18/09/2023 15:47

As her POA you are acting on your DM's behalf to try and ensure her wishes are followed. You sound lovely and compassionate as you do not want your mum to lose her dignity. Did your mum ever speak to you about what she wanted when she reached the stage where she couldn't make her own decisions any more?
The team meeting with you can give you advice on what sort of treatment / intervention could be an option for differing health issues your mum may experience. If your mum is still in good physical health and has a reasonable quality of life despite her dementia, then thinking about active treatment for treatable issues sounds like an option.
You'll be looking at the "ceiling of care" for her. So, if she became unwell and could recover with a short admission to hospital, is that something that your would want or do you think that it would be too distressing for her so she is best to be treated more conservatively at her home. You can chose for her to be admitted for issues that are reversible, but for her to be made comfortable for those that she is unlikely to recover from even with more treatment.
Your mum is 90 so will be frail. Get advice from the team about what they feel can be treated actively without distress, and what it is best to live with as an inevitable deterioration due to her age and condition.
As you said you already agree that DNAR is appropriate. Your mum's comfort and dignity are the most important things to consider now.

I think once your begin discussing it with the team looking after her health and day to day care, you'll find it easier to make the decisions. Good luck Flowers

Choux · 18/09/2023 16:09

Thanks for the replies so far. My mum for mist of her life has been sharp as a tack, active, adventurous and so loving. She still is loving but I think my mum as she was 10 years ago would be horrified at how she is today. And she is still relatively ok compared to how bad the dementia could get. She often said 'if anything happens to your dad I am finished' and 'I want to just pop off sometime'. But she does still tell me she is happy and she doesn't remember dad is gone now.

My mum volunteered at a hospice until she was into her 80s and she wrote a note to us all dated 2016 saying:

'I do not want to linger uselessly for weeks or months. I have seen other families endure such torment, their lives on hold. I want to spare you the misery of such a vigil. You must consent to 'let me go'. You must agree that I am released from a life that is not a life. Please honour my request'

OP posts:
Alonglongway · 18/09/2023 16:26

We did this for my dad who died from dementia in a nursing home last year and it worked well. The principle was that he should not go to hospital unless the home advised that it was something that was beyond their capability or would make a positive difference to his quality of life. There were a few occasions in his last year when the GP called me and discussed options for treatment when various illnesses cropped up and we always erred towards his peace and comfort. He died very peacefully in his own room at the nursing home and we were able to visit freely.

We were able to consent or not to vaccinations but antibiotics were not my call - it never really came up as a discussion and he had them a few times for chest infections. I always consented to all vaccinations as that was consistent with his decisions when he had capacity.

Tough stuff - hope it goes ok tomorrow

CMOTDibbler · 18/09/2023 16:37

It is really hard to do, and my thoughts are with you. For my mum, dad and I decided that any medical action had to make a difference to my mums quality of life right then, be something she could co-operate with or tolerate, but wasn't about extending her life.
So (things that came up) yes to her diabetes medication until right at the end as high blood sugar would make her life worse with uti etc. No to cataract surgery as she couldn't do the drops. Yes to antibiotics for skin infection or uti, no for a chest infection. No to investigations as to why she was anaemic as there would be nothing done about any possible tumour. Yes to pain management, no to statins. And so on.
When mum entered care, I told them that I didn't want her visiting hospital under any circumstance that wasn't unmanageable pain, and the GP reviewed all her medication to make it as simple as possible to keep her comfortable. I found it comforting that the GP said it was still them taking the ultimate medical decisions, and nothing was ever set in stone, so you can revise as time goes on.

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