Another downturn in Mum

[angecmc]

Hi, I've not posted for a while, a fortnight ago my Mum who has Lewy bodies dementia became unresponsive, so the care home called for an ambulance, they suspected a stroke and Mum was taken into hospital. After an hour or so, Mum was more responsive but her eyes were rolling and her face still slightly lopsided. They did a scan and decided from that it was not a stroke, but kept her in for a couple of nights, they did at first want to do an op to change battery in her pace maker, but we requested that they didn't as Mums quality of life is already not good, she has been doubly incontinent for two years or more, mobility poor, very confused and speech mainly incoherent. At first Dr wanted to go ahead with op, but after a meeting where they discussed what we wanted as a family and what I felt Mums wishes would be, they agreed to leave her be. They sent her back to the care home, where for another week, she was in bed mainly but talking to imaginary people in her room. Today they had hoisted her into a chair in the living room as she has had a few falls where she kept trying to get out of bed, so they decided it would be best to keep her where they could see her. She keeps trying to stand up, but there seems to be no strength. She is shouting out all the time, mainly numbers, occasionally family names. They put her rollator in front of her in case she managed to stand up and tried to walk, but all she did was put her feet onto the bars as if it was a bike?. We had to try and prise her hands of the handles as we were worried she might hurt herself, she started hitting us, we managed to get the rollator away, she then went back to shouting out numbers and reaching for things that weren't there. This seems like a further downturn in the dementia. We were told she was on end of life, but she seems very feisty to me. It is so hard to watch my dear Mum in this state, I just wish it would end for her, I'm so sorry to say that when I know there are people on here who would give anything to have more time with their relatives, but this has now been at least 10 years and even though we have been told end of life, I know this could go on for a few more years

Ange

 

[LadyA]

Can't say anything helpful, Angemc, just send you a hug. (((.)))

 

[Marcelle123]

Very sorry to hear this. What anguish to go through.

 

[angecmc]

Thank you for your comments and I will take those hugs Lady A, unfortunately Mum has now been taken back to hospital, so waiting game back on, she is unresponsive at the moment, but have been there before so we will see xx

Ange

 

[angecmc]

Acute renal failure syndrome

Well, Mum just been discharged from hospital, just read the discharge note it says diagnosis acute renal failure syndrome. Does anyone on here know anything about this please?
Ange

 

[Oh Knickers]

Hi agnecmc,

this seems a strange way of dealing with a vulnerable patient. It might be worth getting a bit more information from the hospital.

I hope this is OK with you, here is a link:

http://www.nhs.uk/conditions/acute-kidney-injury/Pages/Introduction.aspx

 

[angecmc]

Hi agnecmc,

this seems a strange way of dealing with a vulnerable patient. It might be worth getting a bit more information from the hospital.

I hope this is OK with you, here is a link:

http://www.nhs.uk/conditions/acute-kidney-injury/Pages/Introduction.aspx

Hi thanks for that, I have phoned Mums surgery and asked if a doctor can call me to discuss exactly what the diagnosis means, I do know that they have suggested Mum is treated at the care home with oral antibiotics if symptoms recur, she was given intravenous antibiotics and a drip to rehydrate her overnight, but they said due to her already poor quality of life, they wouldn't be doing any more treatment. She is in last stages of dementia. I don't mind as long as she is not in pain and is kept comfortable. Hoping to hear back from GP soon

Ange

 

[DMac]

Hi thanks for that, I have phoned Mums surgery and asked if a doctor can call me to discuss exactly what the diagnosis means, I do know that they have suggested Mum is treated at the care home with oral antibiotics if symptoms recur, she was given intravenous antibiotics and a drip to rehydrate her overnight, but they said due to her already poor quality of life, they wouldn't be doing any more treatment. She is in last stages of dementia. I don't mind as long as she is not in pain and is kept comfortable. Hoping to hear back from GP soon

Ange

Ange, so sorry you are going through this anguish right now. My FIL had AKI 2 or 3 times, recovered initially, but at the end of his life he succumbed to sepsis. He also had COPD and heart failure. If you want the hard facts (if you feel up to hearing it), perhaps ask the GP if there are any other significant readings, e.g. heart irregularities or inflammatory markers, as taken all together these might enable him to give you a meaningful explanation of your mum's current condition.

But as you say, as long as she is not in pain, that is the best you can hope for right now. Holding your hand, virtually. xx

 

[angecmc]

Ange, so sorry you are going through this anguish right now. My FIL had AKI 2 or 3 times, recovered initially, but at the end of his life he succumbed to sepsis. He also had COPD and heart failure. If you want the hard facts (if you feel up to hearing it), perhaps ask the GP if there are any other significant readings, e.g. heart irregularities or inflammatory markers, as taken all together these might enable him to give you a meaningful explanation of your mum's current condition.

But as you say, as long as she is not in pain, that is the best you can hope for right now. Holding your hand, virtually. xx

Thank you so much, spoke to GP today, Mum is definitely on end of life, they have taken her off all medication except paracetamol and risperidone, this is in case she becomes agitated again, he said they will still give antibiotics at this stage as responding a little to these. She already had atrial fibrillation and pacemaker no longer working. He says d it's just a matter now of keeping her comfortable and as pain free as possible, obviously can't tell us how long she has. At the moment she is sleeping more and more, but I know this might change. They and we want to keep her at he care home as she gets better care than the hospital can give as they are so understaffed. Luckily for us the staff at Care home are wonderful. Xx

Ange

 

[DMac]

Thank you so much, spoke to GP today, Mum is definitely on end of life, they have taken her off all medication except paracetamol and risperidone, this is in case she becomes agitated again, he said they will still give antibiotics at this stage as responding a little to these. She already had atrial fibrillation and pacemaker no longer working. He says d it's just a matter now of keeping her comfortable and as pain free as possible, obviously can't tell us how long she has. At the moment she is sleeping more and more, but I know this might change. They and we want to keep her at he care home as she gets better care than the hospital can give as they are so understaffed. Luckily for us the staff at Care home are wonderful. Xx

Ange

It sounds like she is in the best place, Ange. Do take care of yourself during this stressful time, as well. xx