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My dads got pneumonia and late stage dementia and I just need to hear some experiences and maybe a wee hand hold please1

(27 Posts)
Kenworthington Tue 24-Jan-17 17:53:55

Also posted on 'dementia' topic but not much traffic there. So sorry for duplicate thread.

What's thelkkely prognosis? I think I know that he's hnlikely to pull through this. Care home have been lovely. He's on antibiotics. But he looks ghastly, has a terrible rattle to his breath - which could be the infection?? He's a bit more colour in his cheeks today I think and they said his temperature has dropped off. Sleeping all the time and slightly trembly. He just looks so skinny and frail😢 last weds he was all perky and chatty and laughing. By thurs lunchtime he was in bed. Fri my mum was called to say he had a chest infection and that the gp had prescribed antibiotics. Today I visited again and spoke to the nurse in charge and she said its pneumonia and they didn't want my mum to worry confused he has late stage alzheimers and vasvular dementia. His warfarin was stopped a while ago. I don't know if this will impact in any way. I've called the gp for prognosis but he isn't available to speak to me now til fri mornjng. I just don't know whether this could be the end or not? And I feel terrible for hoping either way. Seeing him on weds enjoying life and being happy, but then again I'm alsways thinking why would I want to prolong his suffering you know. I don't know whether my mum is aware how poorly he is (she keeps saying 'I hope it doesn't turn into pneumonia' and it already bloody IS pneumonia. Also her mum died from it so I know she'd be terrified. Also I just want to be prepared. Mentally. I don't want to be shocked by a sudden unexpected phone call tellin. Me to go and say goodbye (or Worse that I've missed it). I also don't know what to do about telling the dc. Anyway sorry for the rambling of this. Just wanted to get it out and see if anyone might have any experience

LunaJuna Tue 24-Jan-17 20:31:12

So sorry you're going through this. Don't have any experience but didn't wanna read and run..
Virtual hugs flowersflowers

Footle Tue 24-Jan-17 21:25:43

Pneumonia has long been known as 'the old man's/woman's friend' because it often is the cause of death after other conditions can no longer be treated. No one here can tell you if that moment has come for your Dad, but yes, it could be the end for him. He's done well to have been in such good spirits so recently, and to have people around him who love him.

Ilikesweetpeas Tue 24-Jan-17 21:29:53

Could you perhaps talk to the care home staff? They will be experienced and know what the likely prognosis is, at least if you have a chat they will know that you want to be called asap should he deteriorate. I hope that your dad is comfortable, and that you are able to be with him.

MrsMozart Tue 24-Jan-17 21:36:09

No wise words, just offering you a hand to hold.

Gwilt160981 Tue 24-Jan-17 21:38:02

@kenworthington What have the care home said? My Nan had dementia she was fine the one day then she just went downhill. They just said to give gentle care. Mouth care and keep her comfortable. They ended up taking her off saline as it was flooding her body as her kidneys stopped functioning. She was 97. They gave her pain relief when it was needed. She couldn't talk we thought she suffered a stroke but it was end stages. All we could do was sit with her and speak to her. She lingered and faded slowly. Her health was up and down before she passed.

You're best to speak to the health care team who are looking after your dad. I am so sorry you have to go through this. All I can say is be there for your mom.

Kenworthington Tue 24-Jan-17 21:40:41

Thank you for all your kind words. Annoyingly I started a new job yesterday it's the worst timing. I could do with just being with my mum and sitting with my dad. Care home can't seem to say much but then they deal with this every single day a xthey are removed emotionally. Although they did say today they are trying to push his fluids as they love him and don't want to lose him. Which was bittersweet

thesandwich Tue 24-Jan-17 21:45:23

So sorry to hear this . Do talk to your new job and explain the situation- perhaps take unpaid leave?

Doilooklikeatourist Tue 24-Jan-17 21:49:12

My Father had dementia , and did last summer
From our experience , he'd been in hospital about 3 weeks before with a chest infection
He returned to the nursing home and made a recovery of sorts ( he was incontinent , blind , bed ridden and didn't know any of us , so in a really bad state )
He had another chest infection , sepsis and it was decided to keep him in the care home ( as the Blue light trip to hospital would more than likely be too much for him )
He died about 5 days later
The end of life care team took over his care , and he was calm , out of pain. In his pyjamas in his own room
It's a sad time , but it can be managed with compassion and care

Gwilt160981 Tue 24-Jan-17 21:52:33

I know about the "resigned look" they give. They don't want to give false hope. I had all that with my mom when she was put onto paliative care. It was the same with Nan. The home will try their best with your dad. Your dad sounds like he has alot of strong will in him. I know when a parent it poorly you cannot stop thinking about it. It's on your mind all the time. Take each day at a time. Try and take it easy. Even though right now you're probably on edge. It is a nightmare.

liger Tue 24-Jan-17 21:54:10

I agree with others to take your lead from the care staff looking after your Dad. Ask them to be honest with you if that's what you need.
When my Dad was in hospital with advanced dementia and prostate cancer (the combination of which had lead to kidney failure as he wouldn't drink enough) I just knew as soon as I saw him that he wouldn't be getting better. The doctors were very honest with us. We all stayed at his bed side as much as we could over the next couple of days, he slowly became less conscious. It was actually a very special process to just be there with him, and reflect and just be there. Our main active role was to support our Mum who was saying goodbye to the love of her life. I wasn't there when he took his last breath, but my Mum was and my brother was too. I have no regrets about that as I knew he had known I had been with him. I was able to be with my Mum and see him finally within a short time.
I wish you and your family strength and peace at a challenging time. Dementia is so very hard, and you've already grieved for the person you once knew for many years.

Abraiid2 Tue 24-Jan-17 22:01:33

My father, 86, recovered from pneumococcal pneumonia in October. He also had a UTI and has a dodgy heart.

He is still fairly sharp mentally and I did wonder whether that encouraged the doctors to work hard on him, if you know what I mean. I hope that doesn't sound awful and it isn't meant to be. Some of that generation are very tough boys.

scrabble1 Wed 25-Jan-17 20:45:20

Had exactly the same situation with my dad a couple of years ago. He was at end of life stage. The staff and the GP were very open and honest. Sending you my thoughts and please send me a PM if you want to talk xx

PoshPenny Thu 26-Jan-17 00:56:38

If he's been given antibiotics then surely the infection is unlikely to kill him? Your mother is his next of kin, maybe you need to have a full and frank discussion with her about your worries and then together you talk to the care home staff. Perhaps your mother would rather not know if he's dying though.
When my uncle got pneumonia, I don't think he received any treatment for it as he was going downhill so fast - a decision was made to keep him comfortable and anxiety and pain free and let nature take its course.

PoshPenny Thu 26-Jan-17 01:04:59

Oh and with my children, who were about 10 and 11, we had told them he wasn't well (they saw a lot of him) and then when it was bad I was very honest and said that the doctor and nurses in the home had said he was dying and that they ought to come and say goodbye. I explained he was sort of dozing but could still hear everything and that it wasn't scary, so they came and kissed him goodnight and told him they loved him and anyway he died later that night. They were very glad they had been then - they had been a bit hesitant and had taken a bit of persuading it would be ok if I'm honest, but I felt they were old enough to cope, which they were.

LazySusan11 Thu 26-Jan-17 01:06:32

Hand to hold here, I'm spending the night at my mums bedside she's in the late stages and her breathing is raspy which the dr has said sounds distressing but mum isn't suffering.

Wish I had some words of comfort, instead I shall send you an un mn hug flowers

Kenworthington Thu 26-Jan-17 13:45:50

Sorry to hear about your mum lazysusan. flowers and hugs to you too.

KurriKurri Thu 26-Jan-17 15:22:27

How is your Dad today Keningworth?

I understand how difficult this is, as I went through similar with my Dad. He had late stage alzheimer's and sadly died from pneumonia. He had antibiotics, but we had decided no other intervention (such as rescusitation etc) as we felt that would be distressing for him.
But he had also had a stroke and not able to eat well. So he was not strong before he got the pneumonia.

If it is any comfort at all my Dad died very very peacefully in his sleep, there was no pain or distress for him.

I hope very much your Dad pulls through, and am holding you hand x

Kenworthington Thu 26-Jan-17 16:28:44

Thank you. I went and saw him today but he was in and out of sleep so I don't stay long. The doctor had been and prescribed a second stronger lot of antibiotics. We have previously discussed interventions and I have already agreed to dnar and no to aggressive interventions. Nurses don't seem too concerned but I find it hard to judge. His main carer did say they just can't say a prognosis . He's been accepting fluids and apparently he had a little ice cream yesterday but I am a bit hmm about that!

MegGriffin Thu 26-Jan-17 17:26:48

knworthington, I have just been through the exact same thing with my dad. He had Alzheimers end stage and caught a chest infection. He was admitted to hospital and aquired pneumonia. He wasn't really eating or drinking, just a bit of yogurt or ice cream. They did give him anti biotics but they did not work. We were told to expect the worse boxing day but he rallied until the 9th of Jan when he sadly passed away. It was very hard but he had no quality of life before he even got ill. We used to visit him at the care home and he was non communicative and slept most of the time. I hope it all turns out ok for you but I wanted you to know I really know how you feel and send you hugs and strenth.

LuluJakey1 Thu 26-Jan-17 20:40:32

If they have prescribed antibiotics they must think there is some hope. My aunt had vascular dementia and pneumnia and the Dr and care home asked my cousin to decide if she should be taken to hospital or not. They would not give her antibiotics at the care home because she could no longer swallow properly. They said if she recovered it would happen again bcause of food ending up in her lungs. My cousin made the decision to leave her in her bed being looked after at the home on end of life care and she died very peacefully and comfortably a few days later. They are treating your dad so must think he could recover.

PoshPenny Sun 29-Jan-17 19:18:31

How is your father getting on kenworthington?

Kenworthington Mon 30-Jan-17 21:36:58

Hi posh thanks for asking. We haven't been allowed to visit since the end of last week due to infection control. There's a lot of poorly residents at the moment apparently. Anyway my mum spoke to the senior nurse today and she said he appears to be improving and is starting to eat a little. So tentative good news!

KurriKurri Mon 30-Jan-17 21:42:53

It's good he is eating a little, that suggests he is feeling a bit better in himself. I hope the ban is lifted soon and you can visit again.

PoshPenny Mon 30-Jan-17 22:39:23

Oh that is good news!

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