I think my mother is near end of life. I don’t know what to do.

[Person93369]

(Posting for traffic) Just this really. She’s at home. Has a rattle in her throat. Is bed bound. Incontinent. Totally immobile. Has a weakened swallow and today is not swallowing thickened fluids at all. I feel the decline since Xmas day is significant. Do I ring doc? They just don’t seem to want to know. Has anyone any experience they can share?

So she had a peaceful night. I managed to get her onto her side and a little encouragement got her to cough and swallow or spit the “rattle” out. She’s getting the antibiotics and is taking them in a syringe so I got some fluids into her using the syringe. Small amounts. I called the on call doc he said ring an ambulance but she doesn’t want that. Last time in December we had her in A&E with suspected stroke she was in an ambulance in the car park for 7 hours.
I see what today brings. Siblings will be coming too so there will be plenty of us to reassess and make a decision then. I could ring on call doc again. It will be a different person I guess.

Can you contact the local district nurses?

It's great that the night was better. It seems that you need a conversation with the GP about the plan going forward and if something like hospice involvement would be appropriate.

Once we got to that stage with my dad the palliative care team were assigned to us and they were amazing.
I'd try district nurse team if you have one. Carers may know a contact, or even social work

Does she have capacity to make medical decisions after 4 years of dementia? Patients will often refuse hospital care.

They can give drugs to dry up secretions and ease passing that are injected or in a syringe driver. She’s going to lose the ability to cough and you don’t want her choking to death on her own secretions.

What are the carers saying? I think you should call an ambulance at least for an assessment, I know she doesn't want it but it might make her more comfortable

All of our carers are new to this country and aren’t familiar with the NHS. They are very very caring and provide excellent care and help mum maintain her dignity but they are not in a position to offer advice regarding services. I could ring their office but they are so afraid to say the wrong thing I’ve discovered that through experience. It’s a bank holiday today so I think I could get the duty social worker and they might be able to help.

I’d phone 111, I’m a nurse and your mum might need meds to settle her such as midazalam and maybe pain relief as well, they will send a gp out then maybe referred to district nurse or hospital at home not sure they are nation wide or just in Scotland . You want your mum to be as comfortable as possible. Hugs to you it’s not easy as I watched my mum die as well

I don’t mean to alarm you but things might happen really quickly and suddenly, so please just be prepared for that.
My Mum had dementia and passed away Boxing Day 2022. She was in a rehab hospital ward at the time as they couldn’t find a nursing home bed for her. I saw her on Christmas Day and she had the throat rattle that you are describing in your Mum. Spoke to the doctors who obviously saw that frequently and was told that she getting near the end of her life but he expected it to be a week or so at least. We had my Dad round Boxing Day to just give him a break. The hospital called at 10am and told us we needed to get there asap (we are 40 mins away) so we go in the car and at 10.10 they called to say she had gone. I truly believe she waited until she knew my Dad was with me so he wouldn’t be on his own.
Sending you lots of best wishes, it’s a terrible disease.

This is so difficult @Person93369 . I hope you don’t mind if I also ask if you have a ReSPECT form or a DNACPR for your mum?

If she does pass away before you have other arrangements in place and you call 111 or 999 they are likely to encourage you (and actually be most insistent about it) to get her on the floor and start CPR. You will need to be very clear in your mind if you think that is the right thing for her and for you. If she has a DNACPR you will need it to hand to confirm with them on the phone; if you don’t and you don’t think a resuscitation attempt is right for her then you need to stand firm in her best interests while they send an ambulance.

I am another who thinks you should call 111 today. Urgent care teams will be working today. Even if they send an ambulance the crew won’t want to take mum to hospital and can arrange access to care and support.

That is a significant decline, I'm sorry you are both going through that @Person93369 .

That Dr's response is appalling!

Please call 111.
Beyond physical health checks, a Dr or paramedic can take action according to where you would like your Mum to receive end of life care.

Do you have any contact details for the district nurses/community nursing team? Having worked for these teams, they provide assessment and reassurance at a time like this. I also think a doctor needs to visit from a medication point of view as there might be a need for what is known as 'just in case' medications for end of life care if that is were you are

The doctor's response sounds like potentially rubbish communication. Anything related to the throat could mean an infection, so the go-to is to prescribe antibiotics. Communications need to be crystal clear in situations like this and the doctor should have asked for further clarity before prescribing anything.

I'm so sorry for you and your DM, OP. I'll keep you and your family in my prayers.

The GP what really awful with my dad. He also wanted to die at home. The palliative care team were amazing. Totally overrode gp ans hospital doctors and made my dad was as comfortable as possible. Im so glad they were there - i had a 24 hour help line and they would come and give him injections to clear up secretions and lorazepam to keep him calm. He said he wasnt pain but the district nurses said hes just used to it. Honestly I really urge you to call a district nurse out now. The GP were really not well versed in how to care for someone dying.

Is she under the palliative care team? If so call them. If not call GP

If the lady isn’t swallowing even thickened fluids antibiotics will be difficult. Tablets she couldn’t swallow and liquid would be too thin

I am sorry for your situation. Our GP informed the district nurses and the palliative care team at the local hospice. He also prescribed an end of life package - a whole carrier bag of drugs. Palliative care team sat with mum at night so we could get some sleep and district nurses were on speed dial if medication was needed. A nurse will be able to tell you how long your mother has to live. They said ‘not today’ several times and then it was ‘it will be today’. Best wishes and thinking for you.

Can you ask the gp if she’s suitable to be referred to a hospice? Our local one takes non cancer patients which I hadn’t realised until a friend was in there recently.

So your mum isn’t under the palliative care team and is still for active treatment, hence the antibiotics? You seem to be going against the medical advice of the GP which was to call an ambulance. That was good advice, an ambulance call out does not always mean she will go to hospital but they can assess the situation and ensure correct steps are being taken. I’m not sure why you are not following medical advice to be honest.

If your mother is end of life, she should be eligible for CHC funding - fast track funding, also if doesn’t meet criteria (3 months or less to live) you can ask district nurse to do a CHC checklist which is another path to nhs funding.

wishing you all the best x

Ambulance isn't always the best option in these circumstances, a GP needs to prescribe the end of life medications, paramedics won't be able to do this. There won't be much the district nurses can do either without these medications being in place. The on call gp sounds useless

OP do you have a local hospice you could contact? We have a local hospice at home service and when DP died at home I had one of the hospice nurses with me overnight . We did also have the district nursing team already involved and they arranged it.

I'm not sure if you can do this directly but it's just a thought.

I really feel for you. It's so hard not knowing what to expect.

Thank you all for your thoughts and replies. I’ve called their office on call doc again and explained the last few hours. He is going to call me back. He wants to check out history etc before he makes a plan. So I’m waiting on that. I went home for a while to get the dinner on and I’ve had a candid discussion with siblings regarding the next week and what it needs to look like. As in I need them here too. All in agreement so just waiting now. She’s comfortable and relaxed. Sleeping for long periods. I’m wondering am I being hysterical 😩

Is there a hospice at home service in your area? They can help with care but also things like hydration and oral care etc. sending love **

I don’t think you are being hysterical: all the signs are there and deterioration

its good you are making a plan with your siblings and getting the doctor involved

also remember there is only so much you can do, and that people sometimes choose to slip away when they have a moment alone

take care x