What is right to do?

[Red Geranium]

No one has said Mum is at end of life, but it is clear that her situation is very serious. Mum has stopped eating. This behaviour began with her taking food out of her mouth instead of swallowing and progressed to a point-blank refusal to eat. If by cajoling and persuasion she puts something in her mouth it remains at the front and she will not move it back to swallow. She has taken a few sips of water, but not enough to sustain life. She has been admitted to hospital and put on a drip and various investigations done. SALT says the swallow reflex is working. The latest thing has been an x-ray to see if there is any blockage in her gut. If there is it will mean more interventions which will be traumatic for her. It is my belief that there is some intention in her food refusal. It may have started with some medical issue, but now she feels so weak and ill she does not want to make the effort. She tries to refuse all help offered, even with maintaining oral hygiene and other help just for her to stay clean and comfortable.

Of course, the next few days should show if there is any cause for optimism, but if there isn't how long can she last like this? Is it right to keep her on a drip if it is just delaying the inevitable? Can her family ask for treatment to be stopped, and would it mean she dies in hospital?

 

[canary]

Im so sorry @Red Geranium ((((hugs)))))

I recognise this. I think that you need to have a very frank talk to the consultant about this. Mum stopped eating and drinking after a broken hip. She was taken into hospital and put on a drip, but afterwards she still would not eat. She was sent back to her care home and I talked to her doctor there as I too thought that putting her on a drip would only prolong the inevitable. She was placed on palliative care and passed away a couple of weeks later, surrounded by people she knew and who cared for her.

 

[margherita]

Of course, the next few days should show if there is any cause for optimism, but if there isn't how long can she last like this? Is it right to keep her on a drip if it is just delaying the inevitable? Can her family ask for treatment to be stopped, and would it mean she dies in hospital?

Your questions involve moral and legal aspects.
Re the legal aspects , I am not sure how they can be approached , since here in Italy things seem to be a little different .
Re the moral aspects, I can only say I am so sorry for you because any decision you may make will be equally painful.

 

[Izzy]

I'm sorry to read of your sad situation @Red Geranium.

My experience is similar to that of @canary. My husband was admitted to hospital following a choking incident. He developed aspiration pneumonia very quickly and was put on IV antibiotics. After a day or so it was clear that these were no working. The consultant took me to a private room and I was asked if I wanted the treatment to continue. I was told that if the ABs were stopped he would be put on palliative care and kept comfortable. It was clear that the ABs were not going to improve his condition. It was the hardest decision I ever made but I know it was the right one. He was admitted to hospital on a Saturday and he died just over a week later in the early hours of the Sunday morning. Plans were in place for him to come home and I was working with the SW department to ensure appropriate care for him at home. Sadly this didn't happen and he died in hospital. I remained with him while he was there and they provided me with a fold down bed beside his in the side room. I was with him when he died. Sad though I was I haven't regretted the decision as it was the right one for him. I'm glad he was free of this awful disease.

Wishing you and your family strength and wishing peace for your mother.

 

[love.dad.but..]

My dad was admitted to hospital with sepsis and a stroke. It was clear that when I was with him in his NH when he collapsed something serious was going on...he was mobile but had a few falls but interest in eating had all but gone. He was on iv fluids and antibiotics for a week in hospital...I stayed with him...it was clear that he wasn't markedly improving..had made no attempt to move his legs or eat...I knew he would not understand to maintain fluids back in his NH however I and the consultant talked for a long time and we both agreed the kindest thing for dad was for him to go back to his NH which I desperately wanted for him...and be given palliative care. He died peacefully 8 days later. I am proud of myself that I could make that very hard but right decision for my much loved dad. I hope you find a kind resolution with the medics if end of life is looming closer. I did have poa health for dad but frankly the lovely consultant I felt would have come to the same conclusion with a next of kin who didn't have poa for dad...sometimes just because we can keep someone alive doesn't necessarily mean we should.

 

[Primula1]

I am also in this situation with my mom. She has had a chest infection and pneumonia and is currently in hospital. She has vascular dementia and now is not eating and doesn’t seem to recognise anyone. I wonder on the rights and wrongs of trying to keep people alive in such situations, when it would be so much better for all concerned including my mom to be allowed to rest in peace.

 

[Witzend]

I had an aunt in her mid 80s with fairly late stage dementia who began to refuse food and drink after an illness. I was asked to make a decision about whether to send her to hospital, to be put on a drip, or to leave her where she was (in a very nice care home) to die.
It was an awful decision to have to make and I could only ask the GP what he'd do if it were his much loved aunt.
He said he'd leave her where she was, where they'd make her comfortable. Hospital and drips would only be putting off the inevitable, and furthermore would be distressing and disorienting for her.
Also, I was pretty sure my aunt's former self would not want her life - as it was then - prolonged.

Perhaps you could do the same - ask the doctors what they'd do if it were their loved one. And think of what your mother would want for herself, if she could still speak for herself.

 

[Primula1]

Hi following my earlier post, my mom recently died in the end with pneumonia whilst in hospital and although I am sad it is also a relief as she is no longer suffering and I also feel a great unburdening. We chose in the end to stop treatment as nothing was working and mom died the same day. I thank everyone who posts on these forums as the posts helped me understand that I wasn’t alone in dealing with a person with dementia.

 

[Amy in the US]

@Primula1, thank you for your update. I'm sorry to hear about your mother. Please accept my condolences, and very best wishes to you and your family.

 

[Primula1]

@Primula1, thank you for your update. I'm sorry to hear about your mother. Please accept my condolences, and very best wishes to you and your family.

Thank you - another stage of my life starting now.

 

[70smand]

Hi following my earlier post, my mom recently died in the end with pneumonia whilst in hospital and although I am sad it is also a relief as she is no longer suffering and I also feel a great unburdening. We chose in the end to stop treatment as nothing was working and mom died the same day. I thank everyone who posts on these forums as the posts helped me understand that I wasn’t alone in dealing with a person with dementia.

So sorry to hear this. Sending my warmest wishes to you and your family right now xx

 

[Ithuriel]

I am so sorry to hear Red geranium's story, and it sadly chimes with my own; my mother ( 88 and diagnosed with Alz in Sept 2014) was admitted to hospital with a chest infection and the fact she had refused to stand and walk. Up to that point we were managing very well, 3 care calls a day enabled me to go out to work ( mum lived with me in a shared house many years before she developed dementia) She was doing fine but on the 4th day in hospital it was as if someone had flipped a switch and she plunged in to Delirium which she hasn't really surfaced from. It fluctuates - 2 weeks ago she couldn't stand people touching her as she thought it was painful, that has now gone but for the last week she is refusing all food. I can get fluids and (with a struggle) one of the fortified high calorie liquid supplements down her. Speech and language Therapy cannot examine her to see if it is any Dysphagia ( which most doubt) as she won't try to take anything when they are there for them to measure the response and becomes aggressive (as much as she can from her bed) towards them. I had a meeting with the consultant yesterday and as discharge to home keeps being mentioned I stated bluntly that was she being sent home to starve to death? "Well, it's that or frankly starve to death in the hospital" was the response. It may be a defiance, it may be taste has changed, it may be a form of forgetting how to or that her stomach had shrunk and is anorexic. All I know is up until the day she went in she ate 3 meals a day and was a very very different person. The commencement of this failure or resistance to eat was described very similarly, with food being pushed to the front of her mouth and allowing it to tumble out uneaten. It does seem that anything transferred to the mid palette is resisted or makes her gag ( a simple small pill at evening is often placed on her tongue and she gags instantly). There is something going on here al to familiar but what? I am mentally preparing that this is the beginning of the final chapter, but when you have sacrificed so much of your own life to live with and look after a parent it is so hard to bear to face everything and the future alone.

 

[canary]

Hello @Ithuriel I am so sorry to hear your news - I can hear the pain in your words.
When mum stopped eating before she passed away it was because her body was slowly shutting down and she could not process the food anymore. When this happens, they are not starving to death - they are actually already dying and this is why they stop eating. This happened to mum after a broken hip, but a chest infection (pneumonia) will often lead to end of life too.

If this is what is happening to your mum, please dont beat yourself up thinking that if only you can get her to eat/drink all will be well - what she needs now is peace and comfort. Mum was discharged back to her care home and passed away in familiar surroundings with family and cared for by people who knew her.

(((((hugs))))

 

[Duggies-girl]

Hello @Ithuriel I am so sorry to hear your news - I can hear the pain in your words.
When mum stopped eating before she passed away it was because her body was slowly shutting down and she could not process the food anymore. When this happens, they are not starving to death - they are actually already dying and this is why they stop eating. This happened to mum after a broken hip, but a chest infection (pneumonia) will often lead to end of life too.

If this is what is happening to your mum, please dont beat yourself up thinking that if only you can get her to eat/drink all will be well - what she needs now is peace and comfort. Mum was discharged back to her care home and passed away in familiar surroundings with family and cared for by people who knew her.

(((((hugs))))

I read all of these posts with such sadness. We are not at this stage yet with dad but he does have cancer and is on palliative care only. He is well at the moment and able to eat again after having a stent in his oesophagus. The oncologist said that chemo would probably make dad very ill and it would not cure him. She was worried that it could possibly shorten his life and also that aggressive chemo does not mix well with dementia. I understood what she was saying and so did dad and we agreed with her. Better to be well for a shorter time than ill for a slightly longer time I suppose. It is so hard though and dad has forgotten all of that and thinks he is fine again.

I hope and pray that dad just passes away in his sleep before he gets too ill with the cancer but he is a very strong man who never gets even so much as a cold. What a wicked evil illness this dementia is and I feel for you all on here.