End stage/End of life... how is this possible?

[Linbrusco]

So I’m really quite confused now. Mum 78 has had Alzheimers 6-7yrs, in her care home coming up 3yrs.

Since Sept last year, Mum has had a massive decline.
Hardly eating or drinking, sleeping more, talking much less. Will no longer wear her false teeth. So on soft foods. Another UTI.
Lost all mobility.
Recovered, regained mobility.
Eating & drinking but still less.
Another UTI, back to no mobility.
Rapidly losing weight.
GP decided to keep her on a daily low dose antibiotic.
Recovered a little, able to walk a short distance unaided.

By January things were already looking quite grim, then a chest infection, but got over it quite quickly.
Now needs a hoist, unable to support herself or sit as she slides down, so permanently between wheeled lazy boy chair or bed.
Barely eating & drinking again.
Sleeps 23 hrs a day. Communication minimal.

Mum was moved from Dementia Care to Hospital care beginning of Feb.
All her non necessary meds ( cholesterol/bladder) have been slowly withdrawn over past year, as it was getting difficult for her to take them, due to swallowing, compliance and not eating, as often difficult to hide in foods.
Donepezil was stopped beg of January.
Her quitiapine that she has been on for past 18 mnths, has gradually been reduced also.
In fact Mum has been so much calmer, no hallucinating, anger or aggression that she has gone from 75mg of Quetiapine a day to 12.5 at night.

So Mum has been much the same since January, until visiting this week.
She is responding more and talking although not always intelligible.
More often when we visit she is awake.
Yesterday she laughed at one of the carers telling me “ shes rotten” and tapping her feet to the music.
Eating & drinking is still a struggle down to 57kgs from 71 ( over 2 stone) in December.
Carers told me that they had Mum walking a bit, aided of course, from her bedroom to the lounge.
Before she could barely manage 3 steps.

So does all of this sound typical of end stage?
I know any infection is going to set her back again, but just cant beleive how much she seems to have rallied around.

My siblings are quick to blame the Quetiapine for it all but Mum showed no drowsiness or cognitive decline for a good year she was on it and 75mg a day is considered a very low dose.
Its now only 12.5mg at early evening, but they are reviewing it in another fortnight.

 

[Kikki21]

Who has said that your mum is at end stage? I know everyone is different but it seems quite typical that even at end stage, the PWD can stage a rally.
Apparently most people with dementia don’t even get to the end stage as a further complication causes them to pass away.
The best thing to do would be to speak to a medical professional but they might not even know! I would just enjoy the time with your mum in this rally.

 

[Louise7]

The best thing to do would be to speak to a medical professional but they might not even know!

Very true! It's all very odd but my Mum walked into A&E last year for treatment for a cut eyebrow following a fall and (very long story) she ended up spending 3 months there. She wasn't being treated for any other health problems prior to admission, just dementia. A DNAR was put on (without our knowledge) and Mum was left in bed for weeks, was subsequently unable to stand up/walk, stopped eating & drinking and seemed at death's door. The medical team appear to have decided that she was at 'end stage' when in fact they had missed a fractured spine (hence the mobility problems) and when they finally gave her pain relief (without finding out the cause of the pain) they over-sedated her so that she was unable to eat or drink. They said that this was 'the best course of action' for her. Thankfully they subsequently stopped the over-sedation when the family complained about what they were doing. Since leaving hospital 10 months ago Mum has been eating & drinking really well - as per before her admission to the hospital. Unfortunately she has lost her mobility due to the spinal fracture not being identified/treated but she is generally happy, and there are no signs that she is at 'end of life' stage.

It's a difficult thing to gauge though, particularly when a variety of health issues are present.

 

[canary]

Id just like to point out that being at End Stage is not the same as being at End of Life.

People with dementia can reach end stage and stay there for some time (sometimes even years) before reaching end of life. Once you get to end stage this is often marked by a roller coaster ride of deterioration and rallies. When mum reached this stage I was told 3 times that she was at end of life only for her rally. When she finally did reach end of life I kept expecting her to recover again.

I would just enjoy the time with your mum in this rally.

Wise words

 

[Louise7]

Id just like to point out that being at End Stage is not the same as being at End of Life.

Yes, I know that but I'm not sure that all medical staff do!

 

[canary]

Yes, I know that but I'm not sure that all medical staff do!

I know you do, Louise - the comment wasnt specifically aimed at you, but for the benefit of anyone reading who assumed it was the same.
xx

 

[Louise7]

Yes, I understand. My response was for the benefit of those who may think that hospital staff (even those on elderly wards) are familiar with dementia. Unfortunately there seems to be a real lack of knowledge/understanding in some places.

 

[Kikki21]

Very true! It's all very odd but my Mum walked into A&E last year for treatment for a cut eyebrow following a fall and (very long story) she ended up spending 3 months there. She wasn't being treated for any other health problems prior to admission, just dementia. A DNAR was put on (without our knowledge) and Mum was left in bed for weeks, was subsequently unable to stand up/walk, stopped eating & drinking and seemed at death's door. The medical team appear to have decided that she was at 'end stage' when in fact they had missed a fractured spine (hence the mobility problems) and when they finally gave her pain relief (without finding out the cause of the pain) they over-sedated her so that she was unable to eat or drink. They said that this was 'the best course of action' for her. Thankfully they subsequently stopped the over-sedation when the family complained about what they were doing. Since leaving hospital 10 months ago Mum has been eating & drinking really well - as per before her admission to the hospital. Unfortunately she has lost her mobility due to the spinal fracture not being identified/treated but she is generally happy, and there are no signs that she is at 'end of life' stage.

It's a difficult thing to gauge though, particularly when a variety of health issues are present.

I can really identify with this.
My mum was taken to A&E only a few weeks ago complaining of sickness & being sick & in pain. We have gone from this to her actually being on end of life meds.
They seemed to think she had an infection somewhere but were not sure where. So kept her in. She doesn’t do well on antibiotics. And they didn’t seem to be working - from this she lost mobility, not eating & drinking.
Then got aspiration pneumonia.
She was definitely on the later stages of dementia but has rapidly deteriorated to end of life stage.
Was this precipitated by hospital admission? I’m going to say it is debatable but hasn’t helped.

 

[canary]

She was definitely on the later stages of dementia but has rapidly deteriorated to end of life stage.
Was this precipitated by hospital admission? I’m going to say it is debatable but hasn’t helped.

Could be, but infections (esp pneumonia) can progress dementia very quickly.
In my mums case it was a broken hip that needed repair under anaesthesia that finally did it.

 

[Kikki21]

Could be, but infections (esp pneumonia) can progress dementia very quickly.
In my mums case it was a broken hip that needed repair under anaesthesia that finally did it.

As far as the drs are aware then they think that her primary infection was in her leg ( the cellulitis) which was causing the vomiting but the aspiration pneumonia is the secondary infection.
Both infections have severely impacted on my mum’s kidney function.

 

[Kikki21]

Yes, I understand. My response was for the benefit of those who may think that hospital staff (even those on elderly wards) are familiar with dementia. Unfortunately there seems to be a real lack of knowledge/understanding in some places.

It’s not so bad in this hospital but I think there ought to be specialist dementia hospital wards in every hospital with specialist nursing care but some people are incredibly ignorant.

 

[Louise7]

It’s not so bad in this hospital but I think there ought to be specialist dementia hospital wards in every hospital with specialist nursing care but some people are incredibly ignorant.

I agree, but just having some basic knowledge of dementia would be helpful. Mum was refused an x-ray, despite arriving on the ward covered in bruises following a fall, and the medical team then referred me to the dementia team "so they could make me aware of late stage dementia". When Mum was suddenly able to walk again 7 weeks later - after her pain medication was doubled - the medical team told the physio that this was due to 'fluctuating dementia' Good to hear that the hospital your Mum is in is better informed.

 

[Moose1966]

I’ve posted on here previously but now need help / advice , mum is 86 and 100% bedridden everything is done on or in bed . She’s been deemed end of life CH have the pack , they say she’s still palliative care for now and have told me today that she needs to move to nursing home . I appreciate she is very time consuming and sleeps all the time with very little limb mobility . I’m worried a move may be too much for her . I have no idea where to start I was happy where she is and she knows the staff , been there two years . Any advice?

 

[Kikki21]

I’ve posted on here previously but now need help / advice , mum is 86 and 100% bedridden everything is done on or in bed . She’s been deemed end of life CH have the pack , they say she’s still palliative care for now and have told me today that she needs to move to nursing home . I appreciate she is very time consuming and sleeps all the time with very little limb mobility . I’m worried a move may be too much for her . I have no idea where to start I was happy where she is and she knows the staff , been there two years . Any advice?

It depends if the care home has the capacity in terms of staffing to look after your mum & whether or not they are classed as a nursing home. I agree it doesn’t sound like the best plan of action to move her as it will be very confusing for her. You need to speak to the care home manager & social services/palliative care team why this has come about.

 

[canary]

Mums care home looked after her to the end. She had an end of life box prescribed by her GP and the care home organised District Nurses to come in to administer them and to sort out a syringe driver.
I dont know whether every care home can do this, though

 

[Paty]

Its not the end stage, It the beginning