Last days (sorry)

Due to the covid / not covid, I hadn’t been in to see Dad for 13 days. I’ve been relying on staff to tell me updates which have changed each time even when they’ve been face to face. I thought I knew what we were dealing with after a long conversation with a doctor who thankfully had English as his first language. This is no disrespect to anyone who has EAFL but it often makes things even more confusing when you are trying to pin someone down to an actual action.

The plan was to get Dad ‘well’ using the IV fluids & glucose & another batch of antibiotics and then react quickly to get him out before another infection hit. Once back at the nursing home, he could be more ably assisted to eat & drink etc where possible but when another infection hit or the dehydration inevitably started kicking in again there would be an advance directive in place plus appropriate meds if necessary so that another hospital trip was avoided and he would pass away peacefully with loved ones around him. He said dehydration & kidneys failing in this way was peaceful because the toxins that would build up would cause Dad to become more & more sleepy rather than struggling & being in discomfort.

We visited yesterday, totally responsible for donning & doffing, staff walking around with no mask or it under their nose etc. Dad was calling out for his partner who died 10 years ago and apparently had been for some days but nobody knew who she was. I tried to talk to him but now they’ve lost his hearing aid as well. I removed two chunks of hardened discharge from his shoulder which had fallen out of his other ear. I tried to clean it but it’s such a mess inside and I couldn’t go in and out of the room. This means he can’t hear anything or see anything and STILL nobody realises this. They’ve also broken his St Christopher necklace & when I asked to turn him because he was saying his bottom hurt, I could see an open sore where he has been laying on a wet pad for too long.

We grabbed a doctor, of course a different one, and he said that they’ve had to change the antibiotics because he needed something stronger this time as it was a chest infection picked up in hospital which is harder to treat than one from the community. A consultant who I’d dealt with before was passing & saw I was upset so he joined in & it was clear that there wasn’t a plan to get Dad out. The plan now seems to be that a decision will be made tomorrow. If he’s stable / improving, they’ll continue the antibiotics which need 5 days, & then Monday start thinking about discharge. However, if he doesn’t respond by Friday or continues to deteriorate then they will arrange to discharge him Saturday back to the nursing home if possible. He was concerned they might not take him as he’ll probably need oxygen etc so he was going off to find out. Alternatively the plan was now to leave him to die in the hospital, on a ward of 6 people, with just 18 inches either side of his bed. I said no, perhaps a hospice but apparently there are no spaces anywhere. He MIGHT be able to get a room on his own (it’s a mix of single & 6 bed rooms there) but it’s a slim chance. I’ve been trying to get hold of the nursing home to see what they said but both the manager & deputy are out for the whole day. I know from experience that they rarely have either of them there on weekends. I want to find out what their response was because if they say no I will get PALS involved to try & advocate for a single room. Tomorrow may be too late. The chances of the consultant having made a note of their response if he even managed to call, is skim to none.

I wanted to tell my Dad that his Grandson has got his first cheffing job because he was so proud of my boy. I also wanted him to know that we’ve all but secured a buyer for the house at much more than he ever expected, but he can’t hear anything. Not being able to say goodbye properly is absolute breaking my heart.

Sorry this is even longer than my normal posts.

I would suggest ringing the hospital’s CEO’s office and complain about the complete lack of care and concern for a dying man. I have had to complain to the CEO in the past when mum was in hospital, and had an almost instant response. Amazing how quickly people can act if they think their promotion prospects are threatened!!

Henry’s Cat
Thinking of you and sending ((( hugs )))

This is the sort of thing that politicians should be forced to hear about before they put their hat into the ring to be Prime Minister.

So sorry to hear your Dad is nearing the end. Regarding his loss of hearing and your immediate need to get some information to him , could I suggest some photos or writing if he is able to understand. At least you will know that you have told him in your own way, he may well understand even if he can not communicate a response. Get some photos of your house and son and some big lettered notes “sold” and “new job” you can show him with simple words or smiley faces,

I’m sorry for what your Dad and you are going through.
Sending my thoughts and prayers.

Oh Henry’s Cat, I’m so sorry to read this. Your poor Dad and poor you. Sending you hugs and cyber support.


Sorry to hear the news about your dad.

I am so sorry to read this. He deserves dignity and he is not getting this - my heart goes out to you.

Thanks all. It’s been an absolute farce on so many levels. In theory, the home have said they can take him back as long as there is a full medical handover & advance directive. He has responded to the antibiotics so he’s fine to stay till after the weekend and hopefully be discharged early next week to say his goodbyes (not that we’ve told him because we don’t know how much he understands & don’t want to distress him but we have no idea if that’s the right thing or not).

Henrietta - he’s totally blind so he literally has no way of communicating. However, I’ve located a gadget that looks like an old Walkman that seems to be working to help when we are there, we hide it when we’re not so that it can’t be lost or broken.

Thursday night I had one of those little tubs of orange juice taken away from me by a nurse I only remember seeing once before in 4 weeks. She lectured me about the amount of sugar in it & when I said I thought the idea was to get something, ANYTHING in him, she said things with sugar in were not appropriate for diabetics (what happened to patient choice? Why were they still letting him choose puddings on the menu? why did nobody listen to me when I asked them to help me get him to change his diet for the last 5 years?) Apparently they have managed to ‘wean him off insulin entirely’ now which I said was because he wasn’t eating and hadn’t for 3 weeks. She patronisingly advised giving him the yogurt top up drinks ‘when we’re at home’ and was rather surprised (she thought I was being ridiculous) to hear I didn’t think he would last a week. She gave him the stuff in little sips which amazingly they can do all day (funny that they don’t do that with water, people miss meals, people sit in bodily fluids for too long etc but they can keep giving him little sips of a drink he hates…) She told me he didn’t need the insulin now because his diet was so much better managed in hospital and he didn’t have access to things he shouldn’t be having. When I said his diet was fine at home she got REALLY patronising, raised her eyebrows and said that his table had been full of sweet treats when she came in the other day. I tried to explain doctor had brought in a selection of things to try and get him to eat because he was having a hypo but she didn’t believe me and went off to tell another nurse how ridiculous I was being suggesting that the doctor had provided inappropriate treats. I tried to talk to her about it but she just shut me down so I went to speak to the person in charge (the nurse she’d just spoken to…) She laughed at me for suggesting that she’d tried to blame me for mismanaging Dad’s condition and denied that diabetes was caused by food!! I’m taking it to PALS because it’s bad enough to be accused of lying, or that I didn’t do the right thing, but when you’ve actively tried to get the NHS to help & they haven’t & I’ve busted a gut to do the right thing by golly I was raving mad. I’m so proud of myself for not losing my shit entirely even though I was baying for blood inside.

They never listen to the carers and then to be patronising and insulting & accusatory like that was just the last straw.

Good for you! This is an extreme example of such a common phenomenon - the carer is treated as a disturber and paid no attention to.

The NHS makes great play of the fact that they expect their staff to be treated with respect or you will be ejected or prosecuted. They make no such efforts to ensure that staff behave in a respectful manner.

I’ve always found that very odd and disturbing. This is why I distrust the NHS. Whenever I can do so, I have gone to see better private specialists and consultants instead. The logic is flawed. I work in a church helping out part time and we do not behave that way towards our customers and devotees.

Hi Henry’s cat, Sorry to hear what you are going through. Some of the nurses are young and very inexperienced with life- and end of life. I remember when my father was admitted to a care home for his last 3 weeks, I knew he was in there for end of life, Dad had stopped eating and was being virtually force fed a tablet by an inexperienced nurse. I queried whether it was strictly necessary at this stage and she looked at me as though I was a murderer and retorted how the Dr had prescribed it and he must have it. The next day a senior nurse called us in to say he would pass in the next couple of days which he did. Sorry I know that is not a good news story- just saying that I know how you feel- trust your judgements and don’t let others rial you at this difficult time.

This particular nurse was older than me! I know in theory she might still be inexperienced but she had the way of a long timer about her if that makes sense.

Today his diet was mentioned again as I was leaving by a HCA who was querying the diet sheet. Despite the doctors assurances on Friday the rest of the team clearly don’t know he is EOL… or is he? It is only 2 consultants and us that are behaving this way, and only me because of what the doctor said! He’s not considered EOL by anyone who can help us apply for CHC so they won’t speak to me about it. He was clearly stronger today and being bothered by the lack of shower / hair wash which is a sure sign he’s on the mend! I was able to have a chat with Dad today in his more lucid moments and he said he wants to keep fighting and even to come back into hospital if needed.

Also, he was having his paranoid hallucinations about me again. This combined with him being stronger throws another spanner in the works (ironically) because he has the potential to become challenging again, perfectly timed for the nursing home to say ‘no thank you’.

Both of these things throw everything up in the air. He is now lucid enough to ask for continuing treatment which all the nursing staff believe is what we’re doing because he has a very treatable condition. In theory… Do we keep him in hospital continuing the circle of meds-gap-deterioration-meds knowing that at some point he’s not going to respond and then he’ll have nowhere outside of the hospital to pass away other than his own sofa? He can’t be treated for the dehydration anywhere other than hospital. They’re not prepared to put a PEG in or look at the deeper reasons why he can’t maintain his fluids & keeps getting infections.

If I wait until he’s delirious again and stop them from taking him to hospital, I’ll be going against what he has now said. His final word about it was that I would know what to do when the time came. Cheers Dad…

I wish medical staff would remember sometimes that whilst an elderly patient may be new to them, it’s someone we have known and loved since birth.
All we want is the best for them, comfortable and not in pain as they near the end of their lives.
Often we have been caring for years and years, putting their needs before our own wellbeing.
We are worried, tired, and scared. A bit of compassion would be so good.

So sorry you are both going through such turmoil and disgraceful care.
How on earth have they lost his hearing aids? Can PALS assist?
This is attrocious, he is blind and needs his hearing aids to communicate.

Do you have power of attorney? Can that be used when he is not himself?

He’s passed the decisions onto you, that is meaningless without POA, the authorities will decide, they will step in to act in his best interests, being a daughter, carer, next of kin counts for nothing, they will be his decision makers. However, if they do include you, that is a bonus but if they don’t like your decisions/you disagree with them, then you probably won’t have any sway.

The hearing aid loss is about par for the course, Breezey. Mum went into hospital with her hearing aids three times, and three times they were lost. We warned them that she had dementia, and that she was great at misplacing the hearing aids - she had some really inventive hiding places for it, not that it was deliberate - but they still managed to lose them. One time we got the empty case back. Classic.

I can see how it happens so easily. In Dad’s case I think it’s probably come out when moving him around and then got swept up in the sheets. My mum lost her teeth when she put them on a napkin on her table and they picked it up thinking it was rubbish. There’s very little space anywhere and if there have been any ‘incidents’ I can walk in to an absolute mess on his cupboard & table with wrappers and bits and pieces of medical devices etc. It drives me potty that people don’t clean up after themselves. I found 3 nasal tubes in his bed Tuesday.

With the POA, they only seem to want to know about it if you disagree with something or they think you might act against them in some way. When Dad went into hospital the first time after coming out with his back, the paramedics didn’t even ask of I had one. The nursing home thought he should go in, the paramedics thought he didn’t need to. I didn’t want him to because I knew he’d likely be in for ages and get worse. The GP said it was up to me (she also hadn’t asked about POA) as long as I understood he might die. The next time he went in I wasn’t on the premises so they just called the ambulance and arranged for him to go in anyway.

When the doctor called me just over a week ago to say that they thought this dehydration was just going to keep happening so what did I want to do, he never asked me about POA then either. He’d spoken to my brother (records that haven’t been updated…) and he said “speak to my sister”! Now that Dad’s already back on fluids and hasn’t even left the hospital, but he’s not considered EOL, if I asked them to stop treating him I think they’d have me sectioned.

I just don’t know if the right thing morally is to have them keep fighting it if he goes out and then comes back in again. He can’t tell me if it’s more important for him to ‘have another go’ (his words) or to be sure he can be out of hospital to pass away. Even in his most lucid phases, he doesn’t understand where he is or what has gone on. He has no concept of being in hospital for 5 weeks even if he does for a moment understand where he is. Does it ever become more about the family, especially in cases of long term dementia? It sounds awful, and I feel so guilty, but swinging from ‘days left’ to ‘he might be okay for a few weeks / even months’ is by far the worst thing we’ve been through. I feel like my life has been on hold and will be until he actually passes because even if he gets out and is well for a few days, I’m always going to be wondering when the next episode of dehydration will kick in or the next infection catches him. We’re supposed to be clearing out our welsh house the first week in August and the buyers have been chomping at the bit to get in for months. I don’t have to be there, but I desperately WANT to be there. I’m the one with the biggest emotional attachment to it & I know we will never go there again after this. It will feel like unfinished business if it’s not me that locks the door, especially if I don’t get to say goodbye. It’s just too many goodbyes all fighting with each other! I know one is my dad and the other just a place but you can’t help how your head works can you?!

You are going through so much and the turmoil of your dad’s health will be exhausting, the doctors will have to abide by their practice and treat him, that is my understanding and it is not nice to see your father going through all of this, it must be very tiring and harrowing.

The house is more than just bricks and mortar, it is symbolic and sentimental to you.

You need to go and see to the house and get that off your shoulders, if your fathers health holds out for you to get there. You need the closure on the house. The buyers can stew in their own impatient juices if you have to delay it.