Dementia and sepsis

[animals19]

Hello! I’m new here and I’m a carer for my 80 year old dad who has dementia and ataxia. He has been bedbound for 4 years and I suspect he is in the late stages of dementia. He doesn’t have a formal diagnosis so I don’t know which type it is. He also has carers 4 times a day for his personal care.

He had been quite unwell for a few weeks with intermittent fever and looking very unwell. Last week he took a turn for the worse and I had to ring 999 because it sounded like he was choking and couldn’t cough up the fluid he clearly had on his lungs.

He’s now been in hospital for 6 days and has been diagnosed with pneumonia and sepsis. His covid swab was negative on admission. He also has some COPD.

I’m not coping too well to be honest. The day after admission a consultant rang me and suggested it may be kinder to withdraw active treatment and put him on end of life pathway. This came as a huge shock and I didn’t know what to say, but when she asked me what he would want I said please treat him, I don’t think we’re there yet and I think he would want to be treated. So that was agreed.

Because of covid no visiting is allowed, so I have to rely on the relatives’ phone line. Unfortunately, all they give you is brief information, mainly his latest observations. Within 2 days he was off oxygen and his O2 sats were stable in the mid 90s. I felt encouraged by this but now every time I ring one of his obs has changed hugely and they all seem to be fluctuating all the time. This is causing me huge anxiety. His blood pressure is all over the place, though his O2 sats seem quite stable.

Today I was told his resp rate was at 24 and it’s sent me in to a bit of a meltdown state. All this information is no use to me out of context. I don’t even know if he is responding to treatment. I’ve spoken to ward staff twice but they seem more concerned about his eating and drinking, which has been assessed as risk feeding due to dysphagia. As far as I know he is still on IV antibiotics and fluids.

I was wondering if anyone else has been through something similar and can tell me if these fluctuations are normal in the recovery phase. I’m slowly losing the plot with the uncertainty.

Thank you for any information you can give me.

 

[karaokePete]

Hello @animals19 and welcome to the forum. I hope you find this to be a friendly and supportive place.

I don't have experience of this but am aware that hospitals may have a Social Worker and/or patients representative so it may be worth trying that route to explain your anxiety and need for better information.

I wish you and your dad the strength to see through this difficult time for you both.

 

[animals19]

Hello @animals19 and welcome to the forum. I hope you find this to be a friendly and supportive place.

I don't have experience of this but am aware that hospitals may have a Social Worker and/or patients representative so it may be worth trying that route to explain your anxiety and need for better information.

I wish you and your dad the strength to see through this difficult time for you both.

Thank you very much for your warm welcome and for such a kind response.

I will look into what help is available at the hospital. I’m stuck in a dark place in which I need more information and dread it at the same time.

 

[Bezzy1946]

Thank you very much for your warm welcome and for such a kind response.

I will look into what help is available at the hospital. I’m stuck in a dark place in which I need more information and dread it at the same time.

Hi all hospital have PALS that you can ring. I get an update every day on my husband who is in hospital at the moment. The Family Liaision person rings me every day when the doctor has done his round. Hope this helps, good luck xx

 

[animals19]

Hi all hospital have PALS that you can ring. I get an update every day on my husband who is in hospital at the moment. The Family Liaision person rings me every day when the doctor has done his round. Hope this helps, good luck xx

Thank you very much. That sounds excellent and like it may help me to put my mind at rest (easier said then done). I will contact PALS tomorrow.

Good luck to your husband and to you.

 

[Jale]

My Dad had sepsis (not dementia though) and he was in hospital for a month before it was diagnosed. For him then it was too late - I'm sorry I don't want to upset you but you need to get a proper picture of what is happening. You say you have to rely on relatives - who is your Dad's next of kin because they should be the one who has the information. Hope you can contact PALS and that you get the proper information you need,

Take care x

 

[animals19]

My Dad had sepsis (not dementia though) and he was in hospital for a month before it was diagnosed. For him then it was too late - I'm sorry I don't want to upset you but you need to get a proper picture of what is happening. You say you have to rely on relatives - who is your Dad's next of kin because they should be the one who has the information. Hope you can contact PALS and that you get the proper information you need,

Take care x

Thank you for your reply and no it hasn’t upset me at all. I know how brutal sepsis can be and I’m so sorry to hear about your dad.

I am the next of kin but I have been talking to hospital via the phone line they have set up for relatives of patients. And this only gives you limited information about their condition.

 

[Palerider]

Hello! I’m new here and I’m a carer for my 80 year old dad who has dementia and ataxia. He has been bedbound for 4 years and I suspect he is in the late stages of dementia. He doesn’t have a formal diagnosis so I don’t know which type it is. He also has carers 4 times a day for his personal care.

He had been quite unwell for a few weeks with intermittent fever and looking very unwell. Last week he took a turn for the worse and I had to ring 999 because it sounded like he was choking and couldn’t cough up the fluid he clearly had on his lungs.

He’s now been in hospital for 6 days and has been diagnosed with pneumonia and sepsis. His covid swab was negative on admission. He also has some COPD.

I’m not coping too well to be honest. The day after admission a consultant rang me and suggested it may be kinder to withdraw active treatment and put him on end of life pathway. This came as a huge shock and I didn’t know what to say, but when she asked me what he would want I said please treat him, I don’t think we’re there yet and I think he would want to be treated. So that was agreed.

Because of covid no visiting is allowed, so I have to rely on the relatives’ phone line. Unfortunately, all they give you is brief information, mainly his latest observations. Within 2 days he was off oxygen and his O2 sats were stable in the mid 90s. I felt encouraged by this but now every time I ring one of his obs has changed hugely and they all seem to be fluctuating all the time. This is causing me huge anxiety. His blood pressure is all over the place, though his O2 sats seem quite stable.

Today I was told his resp rate was at 24 and it’s sent me in to a bit of a meltdown state. All this information is no use to me out of context. I don’t even know if he is responding to treatment. I’ve spoken to ward staff twice but they seem more concerned about his eating and drinking, which has been assessed as risk feeding due to dysphagia. As far as I know he is still on IV antibiotics and fluids.

I was wondering if anyone else has been through something similar and can tell me if these fluctuations are normal in the recovery phase. I’m slowly losing the plot with the uncertainty.

Thank you for any information you can give me.

Its hard not being able to see your dad and make the judgement for yourself on how he is. I don't think just giving a persons observations which vary over 24 hours is the west way of conveying information as these are just numbers which together tell a story for the medical team. Drips of specific information on the telephone can cause unecessary anxiety when conveyed in that way. It might be best to ask for an update from the team when they have time to put everything into context for you and help make sense of the information you are being given on observations.

 

[Lemondrizzle]

My MIL had sepsis and dementia. I agree that just giving you numbers is meaningless as they will only cover the moment they are taken, not give you a global view. Mum was astonishingly stable overall but looking at her charts, there were moments you would take fright if you did not see the whole picture in front of you. MIL recovered from the sepsis despite having had a heart attack mid-treatment. I think it unfair that you were asked to make a decision about palliative care in the manner and at the time you were. It was never mentioned when mum was in hospital although a DNAR was placed on her file with my OH's consent in case she had a further heart attack but that was after a full discussion of her health. She continued to be treated and made a full medical recovery and returned home.

 

[canary]

I think it unfair that you were asked to make a decision about palliative care in the manner and at the time you were.

Doctors do not suggest palliative care lightly.

When mum reached End Of Life I too was phoned and asked whether I agreed to palliative care. It is usually quite an urgent thing that cannot wait until visiting and in todays circumstances when visiting is not generally allowed, phoning may be the only way to contact next of kin.

@animals19 - I think you need to book an appointment to see the doctor at the hospital and have a very open and frank discussion about your dad. If you cant get through to the ward then PALS will help, but please dont put it off.

 

[animals19]

Thank you all for replying.

I think the main problem with the palliative care question was that it was so soon after he had been admitted and he had barely started treatment. She suggested it because he was agitated, which is not surprising with his illness and being in hospital. It was also quite brutal and skewed towards the negative, eg how high his CRP was on admission, that his o2 sats were still only 92 on 2 litres of oxygen, that he may have double pneumonia, low blood pressure - she said all his vital signs were ‘on red’. I know none of these things are good but he’d only been there a matter of hours.

Before he was was admitted he had still been talking, eating and drinking well, watching tv, making clear when he wanted something. Although I know he can’t recover from dementia, I didn’t think we were at the end of life stage yet. So I thought it was premature to be suggesting it. She was only seeing a snapshot. I didn’t have a problem with being told by phone.

Thanks again for your kind responses. By the way his O2 sats this morning were 98 on room air and all the other obs within the normal range. I know it’s still a snapshot but it’s a bit more of a positive one. I’ve yet to speak to the ward but I have tried.

 

[animals19]

My MIL had sepsis and dementia. I agree that just giving you numbers is meaningless as they will only cover the moment they are taken, not give you a global view. Mum was astonishingly stable overall but looking at her charts, there were moments you would take fright if you did not see the whole picture in front of you. MIL recovered from the sepsis despite having had a heart attack mid-treatment. I think it unfair that you were asked to make a decision about palliative care in the manner and at the time you were. It was never mentioned when mum was in hospital although a DNAR was placed on her file with my OH's consent in case she had a further heart attack but that was after a full discussion of her health. She continued to be treated and made a full medical recovery and returned home.

Thank you, you’ve summed up exactly what I felt about the situation and why I found it so difficult. I’m very happy for you that your mother in law made such a good recovery.