Grandad has lewy body dementia is this the end ??

[Sophia B]

Hello I'm just looking for some advice to help me understand and maybe come to terms with the fact I'm going to lose my grandad he has lewy body dementia and has had it for three years now at first he could still walk and sit in his chair but for the past 2 years he has been bed ridden, he would still be alert and responsive was eating and would still be able to try and hold conversation though he was on alot of medication. This past week he has declined and has got a nasty chest infection and isn' eating or having any fluids, he can't take his medication orally no more either so is now having them through a drip in his leg. We've been told he' going to die really soon but how and why he was fine just a week ago is it becaus he isn' eating so he' going to starve or is it because of the chest infection? I suppose I'm just wondering if anyone can tell me what the actual symptoms of end of life are in someone who has lewy body dementia.
Many thanks Sophia x

 

[Jessbow]

People tend to stop eating and drinking because their body is closing down, they don't usually close down because they stop eating and drinking.

That said, He must feel pretty poorly, so not eating and drinking is to be expected really.

Everyone's 'end of life' is different, and its Oh, so hard

((Holding your hand))

 

[Sophia B]

People tend to stop eating and drinking because their body is closing down, they don't usually close down because they stop eating and drinking.

That said, He must feel pretty poorly, so not eating and drinking is to be expected really.

Everyone's 'end of life' is different, and its Oh, so hard

((Holding your hand))

Thankyou I'm just finding it all so hard to understand and come to terms with I just don't want him to be in any pain I just want him to be better or just be in peace I know which one it will be it's just a waiting game and I'm expecting a baby which is making it so much harder thankyou so much for replying x

 

[canary]

Hello @Sophia B
A bad infection can often be the final straw for people with dementia.
When you get to the final stage the body closes down, but it closes down slowly and can take a couple or more weeks for this to happen. As the body closes down it cannot process food or fluid anymore so they stop eating and drinking.

Please be clear about this - he wont starve to death; he is not dying because he is not eating or drinking - he is not eating and drinking because he is already dying.

This is a natural process, but it can be distressing for relatives if they are not aware. The hospital or hospice/care home will not let him be in pain; they will give him pain relief in either a patch or a syringe driver so that he will get a constant supply and can pass away peacefully.

Having said all of this, I note that your dad is still having IV antibiotics. Mum was that stage with a chest infection and the doctors told me that she was unlikely to survive, however she did pull through and lived another year. You never know with dementia.

 

[Jackey]

Hello I'm just looking for some advice to help me understand and maybe come to terms with the fact I'm going to lose my grandad he has lewy body dementia and has had it for three years now at first he could still walk and sit in his chair but for the past 2 years he has been bed ridden, he would still be alert and responsive was eating and would still be able to try and hold conversation though he was on alot of medication. This past week he has declined and has got a nasty chest infection and isn' eating or having any fluids, he can't take his medication orally no more either so is now having them through a drip in his leg. We've been told he' going to die really soon but how and why he was fine just a week ago is it becaus he isn' eating so he' going to starve or is it because of the chest infection? I suppose I'm just wondering if anyone can tell me what the actual symptoms of end of life are in someone who has lewy body dementia.
Many thanks Sophia x

Hi, I understand your situation as my dad is in the same way, he has lewy body dementia and for the past three weeks has a chest infection which they are no longer treating but they are providing end of life care. I just keep crying as I watch him fading away. I have being informed by the care staff at the home the end. Could be at anytime now. But what I do find difficult to Understand is the care home would like me to attend a meeting as he is no longer in the. Right place as he is not displaying complex behaviour anymore. Why would they want him to more to a different care home if he is in the final stages of life? He has being at the care home for just over 4 years, now does not seem the appropriate time to look for a new home.

 

[Sophia B]

Hello @Sophia B
A bad infection can often be the final straw for people with dementia.
When you get to the final stage the body closes down, but it closes down slowly and can take a couple or more weeks for this to happen. As the body closes down it cannot process food or fluid anymore so they stop eating and drinking.

Please be clear about this - he wont starve to death; he is not dying because he is not eating or drinking - he is not eating and drinking because he is already dying.

This is a natural process, but it can be distressing for relatives if they are not aware. The hospital or hospice/care home will not let him be in pain; they will give him pain relief in either a patch or a syringe driver so that he will get a constant supply and can pass away peacefully.

Having said all of this, I note that your dad is still having IV antibiotics. Mum was that stage with a chest infection and the doctors told me that she was unlikely to survive, however she did pull through and lived another year. You never know with dementia.

Thankyou so much for your reply he has a syringe driver I think just wasn't sure what it was called I feel really reassured by your reply as I couldn' get it out of my head that he was going to starve I definitely think this is the end as he has deteriorated so much in the past 2 days I just want him to be out of his pain I looked into his eyes today and could see how fed up and sad he looked it's horrible x

 

[Sophia B]

Hi, I understand your situation as my dad is in the same way, he has lewy body dementia and for the past three weeks has a chest infection which they are no longer treating but they are providing end of life care. I just keep crying as I watch him fading away. I have being informed by the care staff at the home the end. Could be at anytime now. But what I do find difficult to Understand is the care home would like me to attend a meeting as he is no longer in the. Right place as he is not displaying complex behaviour anymore. Why would they want him to more to a different care home if he is in the final stages of life? He has being at the care home for just over 4 years, now does not seem the appropriate time to look for a new home.

Isn't it just awful to sit and watch and just not know how long they are going to suffer like this my grandad is at home as we couldn' find a suitable care home for him maybe they mean putting him in a hospice but if it's going to be anytime soon they should just leave him in peace moving him may just really unsettle him it's not fair they wouldn't let an animal suffer like this so why are out loved ones having too. It's nice to know I'm not alone my thoughts and love is with you at this awful time thankyou for replying xxx

 

[canary]

If hes on a syringe driver @Sophia B then I think you are looking at being very near the end. When mum passed away she had been on a syringe driver for 3 days. They will make your dad comfortable and TBH, I doubt that they would want to move anyone on a syringe driver.

Other signs of the end are that his arms and legs will go cold and his breathing will change. There will be times when there will be long pauses between breaths and then he will suddenly take in a deep breath - its called Chayne Stokes breathing. Mums eyes went very cloudy at the end too.

Please dont be frightened by any of this. The waiting is awful, though. You feel like you are in a twilight world where nothing else is happening and you both yearn for the end to come and, at the same time, dread it.

(((((hugs)))))

 

[canary]

Hello @Jackey
Im sorry that your dad is in a similar position
I wouldnt have thought that it would be a good idea to move someone at that stage either.
I hope you can put your point of view across at the meeting.

 

[Jackey]

Isn't it just awful to sit and watch and just not know how long they are going to suffer like this my grandad is at home as we couldn' find a suitable care home for him maybe they mean putting him in a hospice but if it's going to be anytime soon they should just leave him in peace moving him may just really unsettle him it's not fair they wouldn't let an animal suffer like this so why are out loved ones having too. It's nice to know I'm not alone my thoughts and love is with you at this awful time thankyou for replying xxx

The care home asked us to look at different homes which I have not done. The nurse has told me the. Doctor has giving them meds for if he gets to distressed at the end, my dad was a big man (6"4) and 18 stone, he has lose so must, the last time he was weighed was 3 -4 weeks ago and he his down to 11 stone, he has lose more since then. The home have agreed he is to ill to move so why distress me with trying to arrange a meeting for a man they say will only life 2 - 4 weeks. I hope you can come to terms with this horrible illness as I am having difficulties but after reading all comments on this blog , I can see we are all in the same boat.

 

[Jackey]

Hello @Jackey
Im sorry that your dad is in a similar position
I wouldnt have thought that it would be a good idea to move someone at that stage either.
I hope you can put your point of view across at the meeting.

I told the care home that I would not be attenting the meeting as I felt it was inappropriate, but if my dad was still with us in a months time I would be happy to work with them to find a new home.
Thank you for your reply

 

[Sophia B]

If hes on a syringe driver @Sophia B then I think you are looking at being very near the end. When mum passed away she had been on a syringe driver for 3 days. They will make your dad comfortable and TBH, I doubt that they would want to move anyone on a syringe driver.

Other signs of the end are that his arms and legs will go cold and his breathing will change. There will be times when there will be long pauses between breaths and then he will suddenly take in a deep breath - its called Chayne Stokes breathing. Mums eyes went very cloudy at the end too.

Please dont be frightened by any of this. The waiting is awful, though. You feel like you are in a twilight world where nothing else is happening and you both yearn for the end to come and, at the same time, dread it.

(((((hugs)))))

He has all of this I'm just glad to know that hopefully it won't be weeks he's like this his breathing is awful i sat looking at his chest yesterday and kept wondering if he was still alive or not because the pauses were so long it' so scary I just want him to be at peace now I just wish he got to meet my daughter there is only two weeks until she's born it's just happened at the wrong time thankyou so much for your support xxx

 

[canary]

((((((hugs)))))) @Sophia B
Yes, I think the end will be very soon now - perhaps only hours

 

[Sophia B]

((((((hugs)))))) @Sophia B
Yes, I think the end will be very soon now - perhaps only hours

He's still holding on but I would almost rather him be at peace he looks awful and has deteriorated so so much x

 

[canary]

My goodness, hes a fighter.
((((hugs))))

 

[Sophia B]

He's still holding on but today he went into a coma so I just don't know what's going on or what this means x just wish I knew x

 

[Sophia B]

My goodness, hes a fighter.
((((hugs))))

He's still holding on but today he went into a coma so I just don't know what's going on or what this means x just wish I knew x