How long will this go on

[Millsa2]

Hi, I’m new here.
My dad has early onset Alzheimer’s, he was diagnosed at 55yrs and is now 69yrs.
He’s in full time care as Mum couldn’t cope anymore.
12days ago he had a mini stroke which didn’t seem to affect him too badly but then a week ago he was admitted to hospital via ambulance for dehydration and a chest infection. He had stopped eating and drinking after the stroke. The hospital started antibiotics and put him on fluid infusion for 24hrs and then without a word of warning to my mum they discharged him back to his care home for “end of life care”
A day later he started eating and drinking again if someone feeds him and his chest is sounding better but the palliative care team are now on call and have been called to give him morphine for pain. He doesn’t actually communicate and hasn’t done for years so I think they assume his loud moans and holding and shaking his head means that he’s in pain.
The palliative care team today discussed with my mum about him going on a morphine infusion which she has agreed to. We just want him to be peaceful and not in pain (if he is)
Sorry to go on but my real question is does anyone know how long this period lasts for while he’s still eating and drinking as it’s tearing my mum apart.
Thanks for any replies

 

[canary]

Im afraid that it is difficult to be precise. When mum was put on palliative care she survived for 10 days afterwards. By morphine infusion I am assuming that you mean a syringe driver which delivers a constant supply of pain killer. If this is right it is usually used at the end of life so that they can pass away pain-free and most people are only on it a matter of hours or days.

((((hugs))))) to you and your mum in this difficult time.

 

[Millsa2]

Im afraid that it is difficult to be precise. When mum was put on palliative care she survived for 10 days afterwards. By morphine infusion I am assuming that you mean a syringe driver which delivers a constant supply of pain killer. If this is right it is usually used at the end of life so that they can pass away pain-free and most people are only on it a matter of hours or days.

((((hugs))))) to you and your mum in this difficult time.

Hi, thanks for your reply.
Yes I mean a syringe driver. Excuse my ignorance but I just don’t understand how he can pass away while still eating and drinking small amounts??
I live 200 miles away and have young children so I can’t drop everything to be there constantly.

 

[mumsgone]

Hi, I’m new here.
My dad has early onset Alzheimer’s, he was diagnosed at 55yrs and is now 69yrs.
He’s in full time care as Mum couldn’t cope anymore.
12days ago he had a mini stroke which didn’t seem to affect him too badly but then a week ago he was admitted to hospital via ambulance for dehydration and a chest infection. He had stopped eating and drinking after the stroke. The hospital started antibiotics and put him on fluid infusion for 24hrs and then without a word of warning to my mum they discharged him back to his care home for “end of life care”
A day later he started eating and drinking again if someone feeds him and his chest is sounding better but the palliative care team are now on call and have been called to give him morphine for pain. He doesn’t actually communicate and hasn’t done for years so I think they assume his loud moans and holding and shaking his head means that he’s in pain.
The palliative care team today discussed with my mum about him going on a morphine infusion which she has agreed to. We just want him to be peaceful and not in pain (if he is)
Sorry to go on but my real question is does anyone know how long this period lasts for while he’s still eating and drinking as it’s tearing my mum apart.
Thanks for any replies

Hi milsa2, Looks like you are on the rollercoaster of end of life. There is no definitive answer to the time it will take for your dad to pass away. My mum was put on painkilling patches on my insistence as i assumed by her actions like your dads that she was in pain. She finally stopped eating and drinking completely and it was nine days before she passed. The NH staff told me that she was hanging on because i was visiting her every day and she knew i was coming, so the next day i didn't go and she passed that evening! It is and always will be hard to watch someone suffer the way your dad is but ultimately the choice will be his as to when he is ready to go. Be strong xx

 

[Amethyst59]

I am so sorry for your very sad circumstances. When I have been in your position (with parents and husband) I asked the nurses to tell me when they thought the end was near. With Mum, we knew...with Dad they told us to be prepared...and with my husband the nurse told me, I don’t think he will still be here in the morning...and she was right.
I can completely understand you will want to spend as much time there as you can...and I am betting your dad would have told you to put your children first. As @canary says, so often a loved one passes when they know that THEIR loved ones are not there. I see it as a final act of love, they protect us to the end.

 

[Ann Mac]

Hi Milsa,

I am so sad to read of your circumstances at the moment. Like you, we have been told by my Mum in laws CH that they are putting palliative/end-of-life care in place for Mil, and there is no doubt that she has deteriorated massively over the last few weeks. And like you, we have no idea how long this stage will last for. Mil has had a long, horrible and complicated journey with this foul illness, and to be honest all we are hoping for now is a calm and peaceful end for her. Two days ago, we visited and found her refusing all but a small amount of food and drink, horribly agitated for some of the time and hitting out at staff and us with a strength that is unbelievable given how frail she now is. She was mostly unable to speak coherently (though the swear words are still extremely clear) . But in between all that, there were periods where she smiled and was affectionate. Yesterday we found her calmer, but frailer, with lips cracked and sore and refusing food again at first. However, having applied a copious amount of vaseline to her lips (and making sure that staff have now agreed to see that is done several times a day), which made her more comfortable, she eagerly drank down two glasses of pop, perked up, smiled, laughed, even said some clear sentences - and then ate a bowl of soup and a small trifle. She is mostly now non-complint with her medication for her angina, COPD and dabetes, so isn't having them a lot of the time. Her breathing is definitely deteriorating. She has days where she eats, but then is dreadfully sick and is now being given regular injections to ease the nausea - that isn't about 'making her well', again, its all about minimising her distress and making her comfortable. There is no sign of any infection. On her bad days, staff talk in terms of days or even hours. On the good days, it changes to 'maybe a few weeks'. Some days, she is so damn fiesty that I think 'She isn't going anywhere'. There are to be no hospital admissions, because the distress it will cause her outweighs the minimal benefit and because we all know its time to let nature take its course. She has a pain relief patch, but there is talk of replacing that with morphine, as there are often signs that she is in pain. A DNR is in place. And basically, we are just waiting, like you and your Mum, with absolutely no idea of when or how long.

Its a horrible heartbreaking situation, a rollercoaster and (as @canary has said elsewhere) 'limboland' for us all. Sending you and your Mum much love and support, and hoping for all to be calm and peaceful, however long it takes xxxx

 

[canary]

Hi, thanks for your reply.
Yes I mean a syringe driver. Excuse my ignorance but I just don’t understand how he can pass away while still eating and drinking small amounts??
I live 200 miles away and have young children so I can’t drop everything to be there constantly.

People with dementia are constantly surprising. Mum was up and in the lounge chatting right up to 3 days before she passed away. I have a photo of her with her great grandson and they are both banging teaspoons on the table and laughing their heads off. I looked at her at the time and thought "how can she be on end of life care?", but 3 days later she had passed away.

Your dad might actually bounce back! Twice before mum passed away I had been told that she would not survive - once after pneumonia, and then after a stroke), but she did. Its a real roller coaster. I began to think that she was indestructible and would outlive us all, but nevertheless, her time came.

 

[lemonjuice]

Your dad might actually bounce back! Twice before mum passed away I had been told that she would not survive - once after pneumonia, and then after a stroke), but she did. Its a real roller coaster. I began to think that she was indestructible and would outlive us all, but nevertheless, her time came.

Indeed. I often think dementia almost provides some sort of immunity to a downturn being fatal.

My mother was at 'end-of-life' palliative care only for those last 2+ years of her life and 'survived' (if one could call it survival?) 19 emergencies during those last 18 months. I know because I was taking a note of the date of each one to produce at a CC assessment. Actually it counted against me as they argued that as she had 'indeed survived so many 'near-misses' there was no definitive way to actually tell that my mother was in the final months of her life and I was refused even a 'Fast Track assessment'. The assessor wasn't even prepared to fill in the form!

 

[Millsa2]

Hi milsa2, Looks like you are on the rollercoaster of end of life. There is no definitive answer to the time it will take for your dad to pass away. My mum was put on painkilling patches on my insistence as i assumed by her actions like your dads that she was in pain. She finally stopped eating and drinking completely and it was nine days before she passed. The NH staff told me that she was hanging on because i was visiting her every day and she knew i was coming, so the next day i didn't go and she passed that evening! It is and always will be hard to watch someone suffer the way your dad is but ultimately the choice will be his as to when he is ready to go. Be strong xx

Hi,
Thanks for your reply. I’m now back home and my mum and sister have gone to see him this morning. He’s had more morphine overnight.

 

[Millsa2]

I am so sorry for your very sad circumstances. When I have been in your position (with parents and husband) I asked the nurses to tell me when they thought the end was near. With Mum, we knew...with Dad they told us to be prepared...and with my husband the nurse told me, I don’t think he will still be here in the morning...and she was right.
I can completely understand you will want to spend as much time there as you can...and I am betting your dad would have told you to put your children first. As @canary says, so often a loved one passes when they know that THEIR loved ones are not there. I see it as a final act of love, they protect us to the end.

He’s had more morphine overnight and starts the syringe pump today.
Yes Dad would say put my family first. Sometimes I hate living so far away. I’ve said can they call me if he deteriorates suddenly so I can get back up and I’ve warned the kids schools just in case. Thanks for your reply

 

[Millsa2]

Hi Milsa,

I am so sad to read of your circumstances at the moment. Like you, we have been told by my Mum in laws CH that they are putting palliative/end-of-life care in place for Mil, and there is no doubt that she has deteriorated massively over the last few weeks. And like you, we have no idea how long this stage will last for. Mil has had a long, horrible and complicated journey with this foul illness, and to be honest all we are hoping for now is a calm and peaceful end for her. Two days ago, we visited and found her refusing all but a small amount of food and drink, horribly agitated for some of the time and hitting out at staff and us with a strength that is unbelievable given how frail she now is. She was mostly unable to speak coherently (though the swear words are still extremely clear) . But in between all that, there were periods where she smiled and was affectionate. Yesterday we found her calmer, but frailer, with lips cracked and sore and refusing food again at first. However, having applied a copious amount of vaseline to her lips (and making sure that staff have now agreed to see that is done several times a day), which made her more comfortable, she eagerly drank down two glasses of pop, perked up, smiled, laughed, even said some clear sentences - and then ate a bowl of soup and a small trifle. She is mostly now non-complint with her medication for her angina, COPD and dabetes, so isn't having them a lot of the time. Her breathing is definitely deteriorating. She has days where she eats, but then is dreadfully sick and is now being given regular injections to ease the nausea - that isn't about 'making her well', again, its all about minimising her distress and making her comfortable. There is no sign of any infection. On her bad days, staff talk in terms of days or even hours. On the good days, it changes to 'maybe a few weeks'. Some days, she is so damn fiesty that I think 'She isn't going anywhere'. There are to be no hospital admissions, because the distress it will cause her outweighs the minimal benefit and because we all know its time to let nature take its course. She has a pain relief patch, but there is talk of replacing that with morphine, as there are often signs that she is in pain. A DNR is in place. And basically, we are just waiting, like you and your Mum, with absolutely no idea of when or how long.

Its a horrible heartbreaking situation, a rollercoaster and (as @canary has said elsewhere) 'limboland' for us all. Sending you and your Mum much love and support, and hoping for all to be calm and peaceful, however long it takes xxxx

Thank you, it’s awful isn’t it. My dad is. I longer mobile and hasn’t communicated in any meaningful way for a few years. My youngest son who’s 6yrs doesn’t really remember him any other way.
We have a DNR in place and have said he’s not to go to hospital for anything as we just want him to stay peaceful where he is.
I hope your mil gets a peaceful end to this horrible cruel disease.

 

[canary]

I’ve said can they call me if he deteriorates suddenly so I can get back up

Yes, thats the best thing to do, The nurses/carers usually know when they are truly at the end and you will probably still have several hours to get there

 

[Millsa2]

Yes, thats the best thing to do, The nurses/carers usually know when they are truly at the end and you will probably still have several hours to get there

Thanks. In good traffic I can be there in 3.5hrs. His breathing is still normal and when I visited I took my oxygen sats monitor and his sats were 91 asleep and 95 awake. His temp was 37.4 but tbh the room was hot.

 

[fullmoon]

Thanks. In good traffic I can be there in 3.5hrs. His breathing is still normal and when I visited I took my oxygen sats monitor and his sats were 91 asleep and 95 awake. His temp was 37.4 but tbh the room was hot.

Been reading through your post wondering how your dad is faring? As he found peace yet?

 

[Millsa2]

Been reading through your post wondering how your dad is faring? As he found peace yet?

Hi, sorry for delayed reply. I’m just about to post a new post. He’s still hanging in there. Although I think the end is very close now. X

 

[Herewego]

Reading the posts above reminded me of when I flew home to be at my dad's bedside before he died. As noted below I have other family members that will be passing on at some point in the next few months or years (that I know of).

My view is that death comes when it is ready no matter what the cause Dementia or other illness/disease - we and the medical professionals can guess and sometimes we can see it coming but we never really know the when.

My father died @65 of Cancer - 3 weeks to the day after we were told he had inoperable cancer. For the last 2 weeks Dr's were saying he must be a strong man (heart etal) as they could not understand how he was still hanging in there. He was only on morphine and was not able to eat or drink.

My BIL's father died at 103 - 7 years earlier the family had been told to come right away as he would not last the night.

My mom is 93 and still with us - mentally fit for her age, but her body is a wreak - has had osteoporosis for years and broken most bones in her body at some point, along with loads of other health issues, on several occasions due to her health issues we (and she thought) the end was neigh but (I am thankful) she is still with us.

My MIL (who had been living with us) had Vascular Dementia when her final time arrived, like some of the others it seemed she waited until the son that lives an 8 hour flight away had arrived - she passed less than 24 hours later, no family present and 5 days after going into hospital.

My OH has Dementia (Lewy Bodies we think now although was initially diagnosed with Alzheimer's) - while only diagnosed last year based on the symptoms for Lewy Bodies and the fact that I saw signs of it in 2011 - he was further along at diagnosis than most (I think). He has deteriorated quite rapidly over the past few weeks - it has made me think about the final days - even though he is someway off of that yet, or so I think. My children are finding it quite difficult - especially the youngest who lives a 24hr flight away. None of them like seeing their father as he is now, but they also do not want to face the fact that his life will be shorter than they had hoped it would be. Having lost my father at a similar age as my children are now I do empathise with them - but tbh I don't think we are ever really ready to lose a parent no matter what they have, although once it is only a physical shell that remains and the mind has gone perhaps it is somewhat easier - I guess we will find out.

On top of that my sister has Stage IV Lung Cancer that has spread and is everywhere - we know it is only a matter of time - the mean survival is 8.5 mths post diagnosis (when diagnosed at Stage IV) we are at 14 months now and she is now on a new chemo med that has been shown to extend survival - to up to a mean of 18 mths - as I said at the beginning - death comes in its own time...........