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Carers UK Forum • Last days (sorry)
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Last days (sorry)

Posted: Thu Jul 14, 2022 1:01 pm
by Henrys Cat
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.

Re: Last days (sorry)

Posted: Thu Jul 14, 2022 2:04 pm
by bowlingbun
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!!

Re: Last days (sorry)

Posted: Thu Jul 14, 2022 2:19 pm
by Pet66
Henry's Cat
Thinking of you and sending ((( hugs )))

Re: Last days (sorry)

Posted: Thu Jul 14, 2022 3:38 pm
by Charles_2112
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.

Re: Last days (sorry)

Posted: Thu Jul 14, 2022 5:21 pm
by Henrietta
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,

Re: Last days (sorry)

Posted: Thu Jul 14, 2022 5:53 pm
by Jolanta_1901
I'm sorry for what your Dad and you are going through.
Sending my thoughts and prayers.

Re: Last days (sorry)

Posted: Thu Jul 14, 2022 6:11 pm
by Melly1
Oh Henry's Cat, I'm so sorry to read this. Your poor Dad and poor you. Sending you hugs and cyber support.


Re: Last days (sorry)

Posted: Thu Jul 14, 2022 7:49 pm
by David_2112123
Sorry to hear the news about your dad.

Re: Last days (sorry)

Posted: Sat Jul 16, 2022 1:17 pm
by helena_1512
I am so sorry to read this. He deserves dignity and he is not getting this - my heart goes out to you.

Re: Last days (sorry)

Posted: Sat Jul 16, 2022 11:04 pm
by Henrys Cat
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.