The end for my dad, feeling helpless

[HooBoo]

I joined this forum some time ago, when my dad was first diagnosed, but have rarely posted before.

My dad has been in residential care home for 3 and a half years and was moved from low dependency to medium dependency unit a year ago.

During the past month he has gradually been losing his appetite and in the last week has been losing the ability to swallow. The GP has been called out to him and has said that nothing can be done. I understand that this is the final stage of Alzheimer's, and that the GP is correct.

This evening my dad has coughed up some blood and so paramedics have been called and he has been taken off to A&E. Apparently the paramedics believe he has some indicators of having sepsis, and they have found fluid on his lungs. So... the hospital are now going to attempt to drain the fluid from his lungs and fill him with antibiotics.

I'm so, so sad. I hate that he's going to be in hospital in unfamiliar surroundings with unfamiliar staff. I am worried they won't meet his needs, such as changing his incontinence pads, etc, and that he'll then get skin breakdown, etc. I just don't want my dad to die in pain and discomfort like that. It seems that every possible way this horrible, horrible disease can punish him, it is doing so.

I'm not even sure I have a question. Just needed to vent to someone who understands. I hope things will end quickly for him now.

Much love and admiration to all of you coping with similar.

Kate.

 

[Izzy]

I'm so sorry to read about your dad. It's good that you came here to share - you know that people are here to support you.

I can understand your worries but hopefully the hospital will be alert to his needs. If you're able to go to the hospital tomorrow I'm sure you will be able to talk to them about these needs. It's different circumstances but my husband was admitted to hospital following a trauma which led to him choking. I couldn't fault the care he got for hospital staff but I made sure I was on hand to make sure his needs were met. Sadly he died after a week but I was happy that he had been well cared for.

Thinking of you and wishing you strength.

 

[canary]

(((((hugs)))))) @HooBoo

When mum reached that stage before she passed away she was taken to hospital bedause she had had a broken hip and there was concern that it was healing properly. I spoke to the doctor and said that mum was in final stage of dementia and I didnt want any heroics to try and keep her alive. The hospital sent her back to her care home and I spoke to her GP there. It was decided then that mum should not be sent to hospital, but should be kept comfortable and pain-free. She passed away at her care home surrounded by people who knew her and in familiar surroundings.

I cannot tell you what to do in your circumstances, but I do think it would be a good idea to speak to the consultant about your dad, explaining the stage of dementia. I would be concerned that he would find having his lungs drained distressing and I dont know what quality of life he would have afterwards. Please speak to the doctors - sometimes doctors in hospitals feel that they should preserve life at all costs..

 

[yak55]

(((((hugs)))))) @HooBoo

When mum reached that stage before she passed away she was taken to hospital bedause she had had a broken hip and there was concern that it was healing properly. I spoke to the doctor and said that mum was in final stage of dementia and I didnt want any heroics to try and keep her alive. The hospital sent her back to her care home and I spoke to her GP there. It was decided then that mum should not be sent to hospital, but should be kept comfortable and pain-free. She passed away at her care home surrounded by people who knew her and in familiar surroundings.

I cannot tell you what to do in your circumstances, but I do think it would be a good idea to speak to the consultant about your dad, explaining the stage of dementia. I would be concerned that he would find having his lungs drained distressing and I dont know what quality of life he would have afterwards. Please speak to the doctors - sometimes doctors in hospitals feel that they should preserve life at all costs..

I agree with canary, I plan this for my mum if the situation arises

 

[HooBoo]

Thank you so much for your replies. It helps to know that others understand.

I am going to go to the hospital tomorrow and I will talk to them in as much detail as I can. It would have been nice to be able to go this evening, but i have young children plus he's 50 miles away.

At each stage of my dad's alAlzheimer, I have thought I knew how things would go, even down to thinking that he would be allowed a relatively peaceful death in his care home. If there's one thing Alzheimer's has taught me it's that you never really know anything about the future.

 

[malengwa]

Just thinking about you at this time. With mum it was all so quick but I was relieved she didn' linger on. It' 6 months now and I miss her terribly but I wouldnt have wanted her to still be here in the state she was in.
Look after yourself at this time

 

[Cat27]

I wish you strength at this difficult time.

 

[Duggies-girl]

I joined this forum some time ago, when my dad was first diagnosed, but have rarely posted before.

My dad has been in residential care home for 3 and a half years and was moved from low dependency to medium dependency unit a year ago.

During the past month he has gradually been losing his appetite and in the last week has been losing the ability to swallow. The GP has been called out to him and has said that nothing can be done. I understand that this is the final stage of Alzheimer's, and that the GP is correct.

This evening my dad has coughed up some blood and so paramedics have been called and he has been taken off to A&E. Apparently the paramedics believe he has some indicators of having sepsis, and they have found fluid on his lungs. So... the hospital are now going to attempt to drain the fluid from his lungs and fill him with antibiotics.

I'm so, so sad. I hate that he's going to be in hospital in unfamiliar surroundings with unfamiliar staff. I am worried they won't meet his needs, such as changing his incontinence pads, etc, and that he'll then get skin breakdown, etc. I just don't want my dad to die in pain and discomfort like that. It seems that every possible way this horrible, horrible disease can punish him, it is doing so.

I'm not even sure I have a question. Just needed to vent to someone who understands. I hope things will end quickly for him now.

Much love and admiration to all of you coping with similar.

Kate.

Hi @HooBoo So sorry to hear your dad has reached this stage and I understand completely that you want it over for him. This is a cruel and horrible disease that takes so much and then some more from us. My dad has dementia but is not at this stage yet. He also has cancer of the oesophagus that will likely kill him before his dementia does. A month ago he could not swallow anything other than liquid so they fitted him with a stent and things improved greatly with dad tucking into shepherds pie and scrambled egg and all sorts of goodies. It was so nice. Now over the last few days I have noticed that he is eating less because he says he is full and I suspect his tumour has grown. If so it is back to the hospital for a bout of radiotherapy to try to shrink it and then god knows what.

I pray that my dad will slip away in his sleep one night before these two diseases inflict pain and suffering on him. He does not deserve it and yes I feel like he is being punished in the worst possible way. He is the nicest, kindest and most unselfish man I have ever known and what makes it worse is that he does not even know he is ill.

I have a funeral to go to later this month. My mums younger sister has died after a fall. She had dementia and after the fall she spent a week in hospital in great distress not knowing where she was before suddenly dying. Would have been so much better if the fall had killed her but no it doesn't work like that. Evil disease. It eats away at us and I feel that it has changed me somehow.

I hope you find the strength needed and I also hope that your dads suffering ends soon and peacefully. I am so sorry we have to go through times like these.

 

[canary]

((((hugs))))) @Duggies-girl
You may eventually find that the treatment for the tumour is worse for your dad than leaving it untreated.
We live on a tightrope

 

[Duggies-girl]

((((hugs))))) @Duggies-girl
You may eventually find that the treatment for the tumour is worse for your dad than leaving it untreated.
We live on a tightrope

@canary No they are not treating him, just palliative, hence the stent and possibly one week of radiotherapy to shrink the tumour when it grows again but this may or may not be possible as he has a pacemaker that is quiet close to that area.

We saw the oncologist and she felt it would not benefit dad to have chemo which was exactly what I expected and dad agreed although he soon forgot about it.

It's the swallowing that I worry about, I can just see it getting worse and worse until he can keep nothing down and then what. It is so unfair and cruel and I know it is coming but dad doesn't have a clue. I pray that he just slips away in his sleep one night before then.

 

[HooBoo]

Thank you for your kind words of support. It must be dreadful for you @Duggies-girl and I hope there can be some peace and relief for both our dad's soon. Your dad's situation sounds so cruel. I have read that in the case of Alzheimer's disease destroying the part of the brain that controls the swallow reflex, it is usually the case that the part of the brain responsible for hunger and thirst is already gone, and so there is no desire to eat and drink. This certainly seems to be the case with my dad, and it is a tiny blessing among many curses.

I have read articles, reports, information, watched documentaries on Alzheimer's til I'm full, but somehow I still naiively thought my dad would die before things got so bad.

I went to the hospital today and saw him. I think he recognised me very briefly. He was asking for a drink of water, but he is nil by mouth. He wanted to drink the hand cleansing gel at the foot of his bed. So, so sad and very hard.

I spoke to the ward sister who was lovely and very understanding. She is intending to discharge my dad back to the care home tomorrow afternoon, once he's been seen by the SALT team, as she said it would be against professional protocol to discharge him whilst he's still nil by mouth. The only snag might be if his infection markers are still raised, in which case he may have to stay in to complete his course of IV antibiotics.

I'm hoping for the best and that he'll soon be back in familiar surroundings to finish out his time in relative peace.

 

[Duggies-girl]

Thank you for your kind words of support. It must be dreadful for you @Duggies-girl and I hope there can be some peace and relief for both our dad's soon. Your dad's situation sounds so cruel. I have read that in the case of Alzheimer's disease destroying the part of the brain that controls the swallow reflex, it is usually the case that the part of the brain responsible for hunger and thirst is already gone, and so there is no desire to eat and drink. This certainly seems to be the case with my dad, and it is a tiny blessing among many curses.

I have read articles, reports, information, watched documentaries on Alzheimer's til I'm full, but somehow I still naiively thought my dad would die before things got so bad.

I went to the hospital today and saw him. I think he recognised me very briefly. He was asking for a drink of water, but he is nil by mouth. He wanted to drink the hand cleansing gel at the foot of his bed. So, so sad and very hard.

I spoke to the ward sister who was lovely and very understanding. She is intending to discharge my dad back to the care home tomorrow afternoon, once he's been seen by the SALT team, as she said it would be against professional protocol to discharge him whilst he's still nil by mouth. The only snag might be if his infection markers are still raised, in which case he may have to stay in to complete his course of IV antibiotics.

I'm hoping for the best and that he'll soon be back in familiar surroundings to finish out his time in relative peace.

@HooBoo Let's hope that happens and he gets back to the care home, I don't think hospitals are good places for dementia patients. Not being allowed to drink must be so hard, I can't imagine how that must make you feel. You have my sympathy and admiration and I am dreading what is to come.

On a brighter note I have visited dad twice today (yes he is still living on his own in his little bungalow) and this morning he was not hungry but this evening he had made his way through two large bags of chocolate buttons and a big glass of whisky while watching the football so perhaps he is not as bad as I thought. I think I will have to stop trying to get him to eat what is good for him and let him eat what he wants which will be pots of custard and chocolate deserts. I also moved the whisky to a different place. He usually has a tot before bed and I keep a check on it so today was a bit of a surprise but it is Fathers day.

I am hoping that you have as good a day as possible tomorrow and that your dad soon has some peace. Hugs for you.