She won't wake up

[Ankleblisters]

My mum, who is 71 and has late stage fronto-temporal dementia, has been asleep basically since Friday. Called 111 on Saturday late afternoon and they took her to A+E. We (she and I) were there for 10 hours and they couldn't find anything wrong except that she has an infection they can't identify (tests showed it was not a UTI or COVID). They released her with strong antibiotics but nothing has changed.

I live with and care for her full time but I am looking after her alone all this week because my father is away for work. This is also my absolute busiest time for work (luckily I WFH but I have clients coming here) and I'm exhausted with work and worry and failing to catch up on sleep after being in A+E with her all night on Saturday.

Trying to feed, hydrate and take her to the loo is incredibly hard because she is unwakeable and incredibly shaky and wobbly on her feet. She's been sleepy before when she's been under the weather but it's passed quickly and isn't this profound.

I'm really worried. I'm going to see if the GP practice will send us someone to come to the house. I can't think of anything else, I can't put her through the ordeal of A+E again.

I just need a handhold really. It feels like a horrible responsibility and juggling act.

I don't know if this helps, but when caring for my husband with severe dementia, a Rapid Response nurse came. She was brilliant but best of all she advised that I ask the GP for a Hospice nurse. I didn't even know about the possibility. The local Hospice had outreach nurses.

She came, talked to me, analysed the situation and basically took over. It was fantastic. She liaised with the GP's and the District Nurses to get extra care put into place and organised all his medication. She was at the end of the phone if I needed advice and eventually she applied for NHS Continuing Care which paid for extra carers towards the end of his life and allowed me to step back as his carer and just be his wife.

I am so sorry that you are in this situation but look onto what extra support you can get. It will help you and make your mum's time more comfortable.

My mum had fronto temporal dementia and had phases of exactly this, she’d be minimally responsive for a couple of days, then come round but each time her ability was less than before. We never got an answer as to what it was, the memory clinic thought it might be seizure activity, or just part of the disease process. After a few trips through A&E it was decided that she was fine to stay at home during an episode

@Ankleblisters have you as a family had a chance to sit down and discuss how you all see the future? Are you all aware of what the end stages of dementia involve and what that may look like for your mum ,how she is going to be cared for etc? You say you are terrified of losing her and I totally understand this… but there always comes a point where quality of life by far outweighs longevity of life. I have seen a family member effectively contribute to their parents death through aspiration pneumonia because they couldn’t accept the point that someone starts to naturally turn away from food and drink and start to sleep more and more as the brain starts to be unable to maintain all the functions that keep us alive. ultimately a high proportion of those with dementia die from complications related to infection…but this is a normal and natural process, and again I have seen people being given repeated courses of antibiotics that are only delaying the inevitable and can cause excoriating diarrhoea and pain in the process. I personally would rather die in a comfortable and familiar place surrounded by my family rather than alone in a sterile , unknown environment. She may well rally from this infection and become more awake again but it is still an opportunity for you all to think what is best for her…as anyone working in palliative care would tell you, death is not the worst outcome for someone at end of life, what is important is the care given to someone going through that process and the care and support given to family to make this time easier. So please ask your gp what support there is locally for you all, services vary hugely place to place.

Just want to echo what others have said here about being connected in with your community nursing services. Has your GP referred you to them? Do they provide you with any support? Do you qualify for regular carers to come in and help you and your dad? Taking on full responsibility for your mum's care is hugely admirable, but you may be able to get some additional support/help. Sorry, if you've tried all this already!

I am glad the paramedics were so helpful - I always found them brilliant when dealing with my mother. A hospital ward is an unfamiliar and frightening place for someone with dementia.

This may be a phase, or it may be a sign of the end being near, there is no way of knowing. But she is in the best place with you.

My mother survived the stroke and then clung on for another couple of years with no quality of life. She had fantastic care but she was incontinent, immobile and unable to feed herself. She died in her familiar environment of the care home. I hope you have support from the rest of your family, it’s very hard.

Thank you all so much. The paramedics have just left. They liaised with the GP but the GP continued to double down and insist that she go into hospital to identify the source of the infection. So I had to dig out the LPA and refuse. The paramedics also gave me a list of things to look out for so I know if I need to worry.

She is still asleep but I am at least reassured that she is not in immediate danger.

We are on the waiting list for a palliative care assessment, and also OT and physio re-assessment to see if they can provide any support re mobility and save our backs.

We've usually got a good system in place with care, I enjoy being able to do what I do for her - it's just this week that is especially hard. I know she's going, but it all suddenly being my decision it felt like that decision about her best interests was all on me and I had no one to talk to about it. You have all really helped by giving me that perspective. I would far rather she left us peacefully at home than in a hospital - but if her life can be extended a little longer without discomfort I would rather keep her. She does love being alive, despite the difficulties of dementia.

The discussion about Advanced Care Planning and DNAR is very much needed. It's difficult as both my sisters are always either overseas or working all the time. But the plan is to sit down and discuss this summer. I just hope we are all on the same page.

Thank you all for the hand hold - very much needed and hugely appreciated xxx

I'm lost as to why it's not in her vest interests? What exactly do you want to happen?
To keep her alive she will need to go to hospital. To let her go just leave her at home and let her stay asleep?

It's not in her best interests because all her vital signs are absolutely fine and she is basically not in any danger.
Taking her to hospital will make her extremely distressed and all they would be doing is trying to find the source of the infection, which she may well fight off on her own at home with the antibiotics and without that all that distress.

Gently @Ankleblisters it sounds like you are doing an amazing job but I suggest summer may be too late. I had to arrange a zoom call with my siblings to discuss dm- they hadn’t seen each other for many years.
doyou have a local hospice? Can you self refer? As others have said, these folk are amazing at giving all family support.

She’s In the right place. You’re doing absolutely the best thing for her. You’ve had the paramedics visit and as long as she is getting some liquid and is comfortable she’s doing fine for her stage of dementia. My mum was similar when she had advanced dementia. Just slept. Went through stages of waking up and talking, then slept again. She had a very peaceful end at home and we were very grateful she didn’t go back to hospital

That @thesandwich. I don't think we are at End of Life yet. She is still fairly robust. Frail. But strong in herself.
She has been doubly incontinent for five years but she is still able to interact with us and she goes for a walk every day (except the last few days when she's been sleeping all the time). Her mobility is tricky because she has a knee problem but it tends to make transfers (getting out of bed, out of a chair, in and out of a car) really hard but her walking, although intermittently and increasingly stiff and wobbly, is still okay.
I think she has a bug she is fighting off and I called the GP panicked and called an ambulance. But I don't think she's actively, immediately dying.
I was struggling with the decision making - I love her so much and want what is best for her, but I also don't want to lose her, especially through something avoidable and through my own inaction. It suddenly felt like her life was in my hands all by myself and it was frightening.
But I'm reassured that letting her sleep it off is the right thing to do.

In the slightly longer term, the palliative care team have got the referral and we are on the waiting list. But I agree, we should have the conversation sooner rather than later. My father will be home in a week and there's a chance my elder sister (who is the hardest to pin down) will be coming with him (his business trip happens to be to the country she lives and works in) so we should be able to find a time when my younger sister is also free and discuss it properly.

I just felt incredibly alone today and incredibly unsure of the right thing to do. It felt like everything was happening at once as well as I had a lot of important work happening earlier on but I have cleared my schedule for the rest of today.

Because keeping someone alive with late stage dementia isn’t always in their best interests (to be brutal)
I have signed a form that I do not want any life extending or life saving treatment if I am diagnosed with dementia so no antibiotics etc
We refused further treatment for my mum when she developed sepsis

You can care for someone and keep them comfortable etc without going in all guns blazing with treatment and ambulances and hospital

@theickisreal Agreed. That is why the paramedics did not want to take her to hospital, they deal with these situations every day and they believe it's in her best interests to stay at home.

My lovely MIL had dementia and had several episodes over the last couple of years of her life where she would be basically sleeping for several days, and then would rally though she would decline slightly each time. There was never any real cause found, although she would be given antibiotics for suspected UTIs and chest infections; it just seemed to be part of the ongoing dementia process. After the first time, the family and medical team agreed that it was not in her best interests to have her admitted to hospital for these periods.

Could she have had a TIA? My grandparent began having them more regularly when the dementia progressed. They can cause sleepiness

Agree that further admission and somebody who feels “we should do something” is not in her best interests. Priorities are to keep her safe and comfortable as far as possible, that is minimise any symptoms like pain or breathlessness.
My concern is that support you need may need to be ramped up. Is that where the GP or the rapid response team may be most useful?

My wife had vascular dimentia and you need help . Contact local authorities ( council ) has lovely lady been diagnosed by the hospital and you have it in writing . Doctor can put you in touch with county Council social services . My wife had 3 carers a day until she passed . I am not saying mum will pass away....... you and dad need support though . Also county Council will advise on other help you can get l hope this helps .

You sound lovely @Ankleblisters

To keep her safely at home your Mum urgently needs suitable pressure relieving products (especially a mattress), manual handling equipment and support from carers. I really hope that the referrals that have been made can sort these things before any complications occur.

Is she on lorazepam or any other sedatives

She’s in late stage frontal dementia - this is exactly what happens.

@Ankleblisters Big hug for you. My parent has vascular dementia and I live in too. I feel for you, it is terrifying when you are on your own and something like this happens. I understand your conflict, it's a horrid place to be. Just wanted to offer you some virtual hand holding.

Has anyone suggested Admiral Nurses to you? It might be worth seeing if you have any in your area. You can ring the helpline too for advice although it's not 24/7. Your local memory clinic should have a 24 hour emergency helpline though.

I hope you are ok. 💐

My Dad is in hospital just now with the same symptoms. He was diagnosed with Hypo active delirium. The body shuts down to cope with an infection. 10 days later and lots of antibiotics and IV fluids he seems to be coming out of it and was out of bed walking with his zimmer today. I know hospital is often not the best place for someone with dementia but I honestly believe he would not have got better at home.

It could be a delirium. Has she been passing stool and urine normally? If she’s very sleepy and not eating well constipation is likely and can cause hyperactive delirium in patients with dementia. It can take a while to resolve even after the initial cause has been rectified. I would definitely ask about hospital @ home, they can do a bladder scan/pr to check for this

If they didn’t take her blood at the hospital then they won’t know if she has an infection or not. I wonder if you’d be able to arrange bloods somehow

@Ankleblisters Could you request the GP asks the District nurse to give her a catheter temporarily? For skin integrity as well as comfort and safety?