End of life care

[AnotherDifficultOne]

Hi,

I wondered if I could ask a question about end of life care for a dementia patient?

My DM is in a care home with dementia, and I think she is sort of coming to the end of her life. She can't feed herself, and they don't try to get her out of bed. She doesn't make eye contact and seems to be unaware when relatives are visiting except very occassionally. Sometimes she chats, but sort of randomly, without reference to the people in the room. Most of the time she is asleep. My DF visits daily and then comes to see me afterwards

The last few times he's been saying that she is a bit distressed and he feels bad that he can't do anything about it.

My DF has this idea that doctors and nurses know everything and see everything and that he must keep quiet and they will do what needs to happen. I think he thinks it's disrespectful to their authority if he asks a question or mentions that there is a problem.

Anyway, he sometimes sees that there is a problem but assumes that if nothing is being done then there is nothing that can be done, and I'm never quite sure if that is right.

We have filled in the respect form and it is agreed that "comfort" will be prioritised, with no more antibiotics or hospital admissions. The hospital gave the care home a lot of drugs so they are already to provide the right help so my DM is comfortable at the end,

I just wondered if you might know if we are meant to say something to the people at the care home if my Dad sees that my DM is distressed?

One time it was because the tv was up too loud and on the news, and he just lowered the volume and changed the channel and that made things better. He says he doesn't think she's really aware of the tv most of the time.

The next time he said she was just all upset and had kicked off her bed cover but was unaware that there was anyone in the room. My DF is never a worrier, but he was quite bothered the other day and saying that he wondered if there was anything that he should have done but hasn't. That is unlike him, and he wouldn't normally say that unless there was really a problem.

I don't go to visit because I can't handle it at all.

I wondered if you might know what happens at the end in this situation and if my DF is meant to mention to the care home or GP that my DM is having a hard time? He trusts the GP to know, but I don't think the GP has time to think about stuff like that unless told by a relative.

The care home are not accredited for the Gold Standards Framework, but it says on the website that they are working towards it. My DF chose the care home because it is in catchment for their usual GP surgery and he wanted to stick with them. The social worker who rang me said that she thought they were a good care home.

I would be grateful for any advice from folks who have been where we are.

Thanks!

What are the actual concerns? It's perfectly reasonable to raise them, though sometimes things that look like distress at the end of life actually aren't. I'm sorry you're going through this, dementia is a pig.

Thanks for replying.

I think the worry was that DM was tearful and afraid when DF arrived to visit, and nobody had noticed.

Her room is at the end of a corridor and they thought about moving her to a different room close the nurse's station, but they realised that they would have to get her out of bed to do that and gave up on the idea.

If people can look distressed when they're not, then how do we know whether she is or not?

I have worked for the nhs and for a care home. Your DF can ask for a meeting with the manager and matron/nurse in charge and ask for them to explain, what they are doing for her care and can they advise what is the process for EOL. It is not unusual for dementia patients to become distress in front of visitors and also your DF can go and seek help from the nurses station, if he wants to.
this is not unreasonable and also he needs reassuring your DM is seen frequently by staff.
I don’t understand why they cannot move your DM nearer to the nurses station, as most beds are on wheels, or at least use a hoist to manoeuvre DM perhaps into a wheelchair to move her .
could you phone and ask to speak to the manager or matron ? And arrange a meeting for your dad, perhaps you could go to the meeting with him . You would not have to see you DM, but give you DF some moral support ?
Dementia is awful disease and I do feel for you. The care home I’m sure will welcome, your questions. To help put you and your DF minds at rest. Unless anyone has experienced this kind of situation, it’s not unreasonable to ask for a meeting .

Sorry not enough info to go off OP, but, generally speaking...
If she has "lots of meds all ready to keep her comfortable", then yes, they are relying on someone to notice she is uncomfortable, speak up, so then the drugs can be given. They usually won't start EOL meds regularly until they see she needs them 'sometimes' (aka PRN). So you can't just rely on the doctor as they are only there for a few minutes.
Ideally of course the nurses will notice, and probably they will, but again they tend to flit in and out of the room, whereas your father is sitting there focused on your mum so will pick up on a lot more signs of discomfort.

And don't worry about having to interpret her symptoms, or being seen as 'demanding' drugs or anything. Your dad just needs to say to the nurse "excuse me but mum seems agitated, she won't stop moving around and I don't know why, I've fixed her blankets/ turned the TV down/gave her a sip of water etc, and she's still like it, can you come and have a look at her?".

Ideally at the very end of life, I want my residents completely peaceful. No pain, no agitation, no discomfort. So personally I am always grateful when a family member reports things, so that I can medicate if needed.

Hi OP
Sounds like there are two issues here.

1. end of life? Can mean anything from Dr's thinking someone is in last year of life to the person 'in the dieing process' ( its hard to phrase that nicely on the Internet but in last days. ) from what you have said it sounds like the Dr's wouldn't be surprised if she died in the next year but they do t expect her to doe next week. It's always good to talk to the care home about this because end of life is such a broad term. Your local hospice might also be able to help, give them a call and see?
2. being distresses is more common in later stage dementia but that doesn't mean that nothing can be done. She can't let people know if she is uncomfortable so yes if you can get your dad to mention to the staff if he noticed what is causing her distress and when she is agitated or distressed. Its not a complaint its just an observation. Also think about doing a memory book for her if she can still look at pictures or some sensory activities , like a hand massage with some lovely smelling hand lotion or just brushing her hair ( if this is something she would enjoy) or listening to some music together. Definitely still visit if you can she will be aware of ppl visiting, although this might be fluctuating

https://www.dementiauk.org/information-and-support/looking-after-yourself-as-a-carer/end-of-life-care/

Thank you very much for this advice. I have passed it on to my DF. It is really helpful to understand how the system works.

Hi,

My DM managed to get her head together enough to tell me over the phone that she feels absolutely dreadful. She was barely able to talk but managed just that much.

Is there anything that the care home can do about that if I tell them?

Thanks!