Nearly end of life question

[NotReallyAnyMore]

Hi,

I wondered if I could ask a question about how it works when a dementia patient is in the hospital and nearly at end of life, but medically stable?

My DM has been deteriorating rapidly for about three weeks in her Lewy Body Dementia condition. She has basically zero quality of life now. She can't feed herself, has to be moved with a sort of crane thing, doesn't recognise us, can't speak. She's had wild hallucinations for several years. Now she just sleeps or stares into space. We see her condition deteriorating from day to day and it is very marked.

She is in the hospital because she basically stopped being able to do anything.

However in hospital, she is medically stable and all her observations are fine. She is about four stone overweight so can potter along for quite a while without eating.

My DF and DB are dashing around looking for a care home for her, but we feel as though the end is fairly imminent and we're not sure it makes sense to put her through the upheaval of a move, if she will only have a few weeks left.

I just wondered if anybody knows what happens in this situation? If the patients' observations are stable and it is just the dementia that is deteriorating rapidly, then would we be expected to move her to a nursing home to end her life?

I tried to ask the nurse today but it is the bank holiday weekend and the doctor won't be in until Tuesday. The nurse said we have to wait to see the doctor. My DM has had nothing to eat or drink since yesterday so I'm not sure she is going to be in particularly good nick by Tuesday. The nurse said if her observations deteriorated before then, then they'd call us, but it's very stressful not knowing.

I wondered if anybody might know what happens?

Thanks!

if she is deteriorating daily i imagine she will stay in hospital or put in a hospice

Well, I can only tell you anecdotally, but for the dementia patients I have known at end of life, they sleep more and more, eat and drink less and then just die, or sometimes a stroke and then die. My mum just got weaker and weaker and then just slipped away. It was most peaceful.

I work in a dementia unit. As the previous poster said, patients usually just sleep and don't eat or drink. The district nurse visits and they get a morphine driver so they just slip away. We are very experienced in this and it is respectful and peaceful albeit dragged out. She would almost certainly have her own room and you would be allowed to come and go as much as possible. She may get a room as end of life for no charge but not sure what the rules are in these circumstances. We often take patients from hospital who only last a few days. It would probably be a nicer environment for everyone concerned. Sorry you are going through this.

Thank you very much for explaining. When you say "Dragged out" how long do you mean?

Hello,

I wondered if I could ask one more question?

It there something that we need to say to the doctor to convince him to stop active treatment of my DM and switch her to palliative care? The hospital always seem to have to continue treatment even though her mind is gone, she can't do anything and she has no dignity or quality of life left at all.

I just wondered if there might be some correct thing that we have to say to allow them to move her to the different pathway where she can then just be allowed to die and not forced to keep ploughing on?

Thanks.

Hi OP, sorry your DM is in this position. My MIL had DLB and died last year after not eating or drinking for over a week, she’d been asleep almost the whole time.

It would be worth you (or your DMum’s NoK or PoA) having a conversation with the doctors to say that they don’t think further active treatment is in your mum’s best interests, that the family think she should be having palliative care only. The hospital might want her discharged and moved to a care/ nursing home which would likely be a much calmer environment than a ward for her at this stage. Best wishes to you.

Hi,

Thank you very much for all of this kind explanation. My DM has been asleep almost continuously for the last few days and we are very much calmer about that having read this thread. We didn't know before that this was how it was meant to work. Now that we know that this is the right thing, it's easier to relax and just know that it's all as it should be.

The doctor will be in again today as the bank holiday is passed, so we should get to know a little more about whether she needs to go to a care home or just stay put.

Thank you very much.

@Haulage Thanks, this is helpful.

My Dad is arranging to have a respect form signed so their would be no more medical interventions. Then a care home. I think it then just depends on how long it is before she sleeps all the time and stops eating. At the moment she seems to have lunch about every other day, but without especially waking up to do it. She is asleep the rest of the time.

Do you have any idea of how long it takes to get from there to the end of things?
Our family has been coping with this for a bit more than 11 years and I want a bit of peace. It does my head in that the hospital seem to think she's fine because "her OBS are stable".

I’m sorry I really wouldn’t know how long it’s likely to be, my MIL had other things wrong already before the lewy body diagnosis and I think that will have weakened her a lot. She had about 6 years from the diagnosis, the last 18 months or so she would have periods where she slept all the time and then got okay-ish again. I think it was a form of delirium. It’s a hideous condition, awful for the family. I hope your DM settles well in the care home and that eases the strain a bit for you all.

@Haulage Thank you very much. It really is so difficult when someone is ill but can't communicate, isn't it? Thank you very much for explaining.

This is almost exactly what happened to my dad, who had Lewey Body. He then developed a chest infection as his swallow deteriorated and he inhaled food. The medical team asked us if we wanted them to insert a feeding tube or not. We agreed that we didn’t want any further treatment. He was moved to a hospice and died three days later. It was a wonderful hospice and it was a privilege to be with him at the end of his life. We are now going through something similar with my mum. It’s a tough disease. I hope your mum slips away peacefully.