DM having terrors suddenly

[KeepingTrying]

Hi,

I wondered if I could ask advice about my mum who has dementia?

Since May she has been continuously delirious, but really happy.

She mostly sees lovely children in the garden who are not there, and sometimes they are in the house. She tells me that she meets lots of lovely men around the house, but it's clear that they are all my Dad. Sometimes people hand her tortoises while I am on the phone. When she watches tv sometimes she thinks she has actually been to the place on the tv.

She can hardly walk and can't sit down or go to the toilet with out help and is very very far on with it. But so far she has always been happy, with a strong voice on the phone.

But about four days ago something changed suddenly and she became terrified and was pleading with me to come and help. She said she was in a field and there were 5 doors and then she just started sobbing in utter despair. I phoned once a day for four day and she's been either in full-on terror each time or utterly exhausted from the terror.

Her voice is not the same as normal either and one night she was slurring her words. Tonight she just sounded very weark and so quiet that it was a bit like when she came out of intensive care two years ago from having pneumonia.

My Dad couldn't use the phone because he had his hands full with my Mum, so rang the doctor, and then an ambulance when the doctor didn't answer. The ambulance service sent a nurse the next day who looked her over and found nothing they could help with. UTI test was negative.

My Dad has a double appointment with the GP this coming Wednesday but my mum sounds so exhausted and terrified and frail, and I wonder if we should or could do something sooner.

I wondered if anybody might know what we could do? I did wonder if it was a stroke but I reckon the nurse would have spotted that.

There is no formal dementia diagnosis.

Thanks!

Hi,

I wondered if I could come back to this with another question?

My DM has been seen now and diagnosed with Lewy Body dementia, because of the hallucinations.

She never had parkinson's symptoms before it.

They are giving her Rivastigmine.

I wondered if that sounds sensible? I worry because she has an incredibly sensitive stomach and the docs say the drug messes with the stomach and might cause behaviour problems if she has to stop taking it.

My DF is alone looking after her and I can't help because of my own health problems and stuff.

It all sounds terribly hard. She was sobbing on the phone again yesterday because of the hallucinations.

It feels like a waking nightmare for all of us, but my DF trusts doctors completely and never presses to know what options there are.

DM was brought through bacterial peneumonia a couple of years ago in hospital and was on a ventilator for month. They knew she had dementia. I wish she had been allowed to pass away quietly without having to go through all this.

I wondered if you might know what happens next and what we are meant to do to reduce her suffering?

Thanks!

I am so sorry that you are all suffering with this dreadful illness. My mother had LBD and we did all want her to slip away quietly as her life became very miserable even though thankfully her hallucinations related to pleasant things ... she often saw children who were not there. It is very hard to offer help as hallucinations and delusions are far more tenacious than ordinary thoughts or opinions.
My late OH had Parkinsons and he suffered with appalling delusions ... he thought people were cutting him up and putting him down a sewer. I asked the psychiatrist how we should deal with these ... should we challenge or distract for instance? He explained that neither was very effective ... and he was right.
We did find that music helped, particularly pieces that evoked happy memories.
I am sending you a handhold. It is so distressing I know.

Thank you very much for explaining. It's really grim isn't it? I think my DF doesn't really understand that the only way out really is to go into palliative care at some point. I think he thinks the doctor will make it better if he just waits patiently. The doctor has told him that they will give her a drug that will make it better and he assumes this is true. I think in fact it is probably going to make things worse, but he won't believe me if I tell him. It's like watching a car crash in slow motion. Thanks for the virtual hand hold. Fingers crossed something here for divine intervention.

My Mum was put on Reminyl which was in a trial stage at that time, and it helped her enormously, but the rules of the trial were that it was only given for x weeks. She went rapidly downhill after it was stopped. But I think it is in the same class of drugs as the one your Mum is on, so maybe it might start to improve things for her if she is lucky.
You can only take things one day at a time. If the doctor is telling your Dad that the drug will help then I guess he will cling onto that.... and it may. I think it is best not to try and plan or think too far ahead. At this early stage it is probably best that she is at home where things are familiar and less frightening for her, and she is with someone she knows well. She needs things and people she knows around her.
It will be distressing for your Dad because he is watching her drift away, both in the sense that she is reaching the end of her life and that her grip on reality is slipping. It is very distressing for the relatives. My OH became a strange frightening man, as well as being immobile and totally physically dependent after fracturing his hip.
Does she have a DNR document in place that will stop heroic life saving interventions if she becomes physically ill? When my OH got pneumonia I refused for him to go into hospital and said he should be allowed to slip away peacefully, which he did. I was able to do this because of the Power of Attorney.
Take it bit by bit and try and enjoy the lucid moments. It us truly a cruel illness. x

My stepfather is on a cocktail of drugs now. He doesn’t have delirium anymore, but he has deteriorated in many other ways. He cannot walk, is doubly incontinent, can barely feed himself, is unable to communicate. He is in a dementia unit in his care home. Ironically, he actually looks more well than when he was admitted 2 years ago because he is regularly fed and given his meds on time.
He was taken to A+E just before Christmas because staff said he seemed to be having chest pains. After spending hours on a trolley in a corridor, and lots of tests, he was returned back to the home. The doc in hospital asked me what I thought the care home should do if it happened again, and I said I thought he should be allowed to pass away in familiar surroundings rather than being dragged back into hospital. He agreed.

I would say the medication is worth it to help with her distress.

But hard conversations are needed - it isn't going to 'make her better' in the sense of go back to normal, just hopefully reduce distress.

As a family you need to be thinking about DNACPR, whether there should be more hospital admissions, if there are should there be a limit on treatment given such as no assistance with breathing or artificial feeding, that at some point she is likely to need a care home and so on.

Hi,

Thank you very much, this is really helpful to know. I will see if I can ask for a discussion about it.

@Soontobe60 Can I ask how you got the drugs right to stop the delirium? That sounds good. If we had a dementia nurse visiting regularly would that help? I think part of the problem is that my DM isn't seen regularly by people who know what to do.

My Mum had some anti-depressants and sleeping tablets. Both helped with night terrors and allowed my Dad to get some sleep.

@ZoeyBartlett thanks that's really helpful to know. My DM has antidepressants and my DF thinks they knock her out because she does sleep extremely long hours. It's just before sleep time that can be tricky.

So is she Sundowning? I'd talk to one of the Admiral Nurses on how to deal with that. They would have lots of experience as so many people with Dementia Sundown

Treating delusions is very hard - they never did manage to alleviate these for my OH, and were honest that they did not think they could. This was one of the major reasons I made the decision for his pneumonia not to be treated as there was so little prospect of him being relieved of his mental distress.

@CadyEastman thanks, I will tell my DF about that