Is this end of life?

[Melles Belles]

My Dad is currently in a CH on respite suffering from Alzheimer’s and cancer which isn’t being treated. About a week ago he got a chest infection and had antibiotics which didn’t work. A doctor visited on Wednesday prescribed a different antibiotic and said he wasn’t end of life. He’s not really eating, only a yogurt and a slice of toast. He’s only averaging about 400ml of water a day. However when we visited yesterday dad was very agitated saying he would be dead by morning, asking us to pray for him (he’s an atheist), coughing up phlegm, too hot and then too cold. The carers have been struggling to get him to take his tablets and he’s calling them every horrible name under the sun.
Today during our visit the carers tried to give liquid paracetamol he did cough some of it back up. Still agitated and coughing up phlegm. The home called 111 to request liquid antibiotic which they think he might take better. The home just called to say a GP will come out today and he may have to go to hospital. We have already said we don’t want him going into hospital. We have both LPAs.
Also we have a permanent place at another CH for him and he’s supposed to move on Monday but we don’t think he will be well enough to travel. The current home cannot use syringe drivers
Dad has been losing weight for about 5 months. Last Saturday he was 7st 2lb and the week before 7st 9 lb and he says he has no appetite for any type of food.
How do you when someone is end of life? His quality of life is zero and he’s too weak to get out of bed

 

[AliceA]

I do not know. I do know that when people feel threatened they pray, it is if they have a sense of something greater than their self. I also know how some linger on when to others they have 'no quality of life'.
It seems as if there can be a period of inner working out of business unfinished.
They need reassurance that everything will be all right, everyone will be all right.
Time and time again at the end, what people say in their last moments is about love.
It does not matter what belief system got them through life, unbelief is a system too. Love is the closest thing to their heart. Reassure they have nothing to fear, they did well with the tools and opportunities given. That you love them and are grateful to them.

So often it is harder to watch someone else than actually experience things oneself.

 

[Melles Belles]

@AliceA thank you for your reply. It all makes sense. Yesterday he asked me to say the Lords Prayer with him which I did.
The on call doctor has just been and spoke to me. He’s prescribed liquid antibiotics so hopefully Dad will let the carers give it to him. It may work and it may not we will see. The doctor agreed a trip to hospital was not in Dads best interest. He’s going to ask his GP to refer to SALT team to assess his swallow ability but that may take some time.
We will decide on Monday whether he will move to new CH or stay where he is. The new CH is 5 minutes away from my sister. The current one is 15 miles away from her and both are over 100 miles away from where I live. Our brother is 500 miles away but luckily spent a week here seeing Dad at Xmas

 

[AliceA]

It is difficult being a good way away, it makes life so much more difficult.
Even doctors can not definitely say when end of life will be, antibiotics at some point do not work in all cases.
It the cancer is not being treated I am wondering about treating the chest infection.
Sometimes nurses have more idea. A doctor once told me he trained to cure people and really struggled to let them go.
I am not scaring you, but do follow your instinct. If you feel the need to visit, make that visit.
Life is not black and white I find.
The salt team will advise on soft diet etc. Whether your father will be able to remember techniques or not is a different matter.
I feel for you, you are in such unknown territory. Xxx

 

[Misstep]

My Dad is currently in a CH on respite suffering from Alzheimer’s and cancer which isn’t being treated. About a week ago he got a chest infection and had antibiotics which didn’t work. A doctor visited on Wednesday prescribed a different antibiotic and said he wasn’t end of life. He’s not really eating, only a yogurt and a slice of toast. He’s only averaging about 400ml of water a day. However when we visited yesterday dad was very agitated saying he would be dead by morning, asking us to pray for him (he’s an atheist), coughing up phlegm, too hot and then too cold. The carers have been struggling to get him to take his tablets and he’s calling them every horrible name under the sun.
Today during our visit the carers tried to give liquid paracetamol he did cough some of it back up. Still agitated and coughing up phlegm. The home called 111 to request liquid antibiotic which they think he might take better. The home just called to say a GP will come out today and he may have to go to hospital. We have already said we don’t want him going into hospital. We have both LPAs.
Also we have a permanent place at another CH for him and he’s supposed to move on Monday but we don’t think he will be well enough to travel. The current home cannot use syringe drivers
Dad has been losing weight for about 5 months. Last Saturday he was 7st 2lb and the week before 7st 9 lb and he says he has no appetite for any type of food.
How do you when someone is end of life? His quality of life is zero and he’s too weak to get out of bed

I've also said I don't want my Mum to go to hospital. Fortunately, the GPs have been very supportive but if necessary, you might need to put this more strongly in terms of "he is NOT going into hospital". My Mum's expressed wish was to be allowed to die when she reached the point of existing, not living, which she has reached. At least one of the nurses at the CH is horrified by my decision, but I do think it's the right one. The difficulty is for us to accept it's time to let go of them. Your Dad has cancer, (which I've had). Given the choice between being allowed to die of a chest infection, or being treated and going on to suffer the pain of cancer, I know which I'd choose. To answer your question, I don't think anyone can guess the end of life until it's very close. My Mum was diagnosed as end of life almost a year ago & now they think she could live another 6-18 months. On the other hand, we were told my step-father wasn't end of life (with cancer) and he was dead within two weeks. I guess if you have LPA, you probably know what your Dad wanted for himself. Your job as attorney is to act as though you were him. Trust yourself with that & do what you know was right for him, not what other people believe.

 

[Melles Belles]

Thank you for your kind thoughts @AliceA and @Misstep

 

[Baby Bunty]

Thinking off you at this sad time..wishing you and dad and all your family strenght at this difficult stage.x have you asked about district nurse coming in..my mum is in a care home and is classed as end off life we have an advance nurse directive put in place so mum doesnt not return to hospital..also all medication stopped apart from pain relief and all end off life meds in place..district nurses from gp surgery have been really good ..and are supporting us in our wishes for mum.x.thinking off you all.xd

 

[Melles Belles]

Thank you @Baby Bunty.
Dad is a little better today taking his liquid medication, drinking a bit more and he ate a yogurt but refused any lunch. Still coughing a great deal but clearing his chest. He is still saying he wishes he was dead and the carers are cruel because he doesn’t wan to be fed, washed, medicated or moved. The home are now moving him every half hour because they are concerned that a pressure sore may be brewing in the place where he had 2 previously when he was in his own home and wouldn’t use his airflow cushion.
GP is supposed to visit tomorrow. Dad is supposed to move to local CH tomorrow but he’s not well enough so we will need to decide what to do about the move.
Dad is hyper sensitive to touch and complains his pants are too tight when they are so loose because he’s lost so much weight. When we arrived today he asked if we had scissors in our handbags so he could cut his pants off and was annoyed that we didn’t. Then he was asking for a sharp knife! And then a file. In the end a carer came and took them off but kept the pad in place.
This is such a terrible existence for Dad and too many others as we on TP know. I can only hope it ends soon because he says it’s torture.

 

[Melles Belles]

Dad is a little improved today. Less agitated, drinking fluid and has eaten teaspoons of porridge this morning but he was adamant he didn’t want any lunch. Somehow he has put on just over a kilo in the last week even though he’s barely eaten. The GP hasn’t visited but is increasing the strength of his pain patch and district nurses are visiting to monitor his pressure sore. GP visiting him on Thursday and hopefully he will be well enough to move to his new CH which is local. I’m going back home tomorrow but will probably be coming back on Friday to help my sister get him moved. Fingers crossed

 

[70smand]

My thoughts are with you, but it’s often so difficult to say for certain when someone is actually ‘dying’, as things can often change so quickly. And a persons condition can sometimes respond well to antibiotics. It sounds like you have a good GP on board, and if he is able to make the move then they may be more experienced in palliative care. If there is a local hospice that he can be referred to, if he hasn’t already, then they should be able to offer suppport and advice to the care home or gp if needed.
I dread the day my dad is at this stage and last time he took a turn I was so keen for him not to go to hospital, but luckily he responded to oral antibiotics. Such a rollercoaster!
I hope your dad is more settled soon x

 

[Melles Belles]

Thank you @70smand

 

[Amy in the US]

@Melles Belles, I haven't any advice or suggestions for you. I'm sorry. I can offer some (((((((((huge))))))))).

 

[Melles Belles]

@Amy in the US. Hugs always welcome in hard times. Thank you

 

[molliep]

My Dad is currently in a CH on respite suffering from Alzheimer’s and cancer which isn’t being treated. About a week ago he got a chest infection and had antibiotics which didn’t work. A doctor visited on Wednesday prescribed a different antibiotic and said he wasn’t end of life. He’s not really eating, only a yogurt and a slice of toast. He’s only averaging about 400ml of water a day. However when we visited yesterday dad was very agitated saying he would be dead by morning, asking us to pray for him (he’s an atheist), coughing up phlegm, too hot and then too cold. The carers have been struggling to get him to take his tablets and he’s calling them every horrible name under the sun.
Today during our visit the carers tried to give liquid paracetamol he did cough some of it back up. Still agitated and coughing up phlegm. The home called 111 to request liquid antibiotic which they think he might take better. The home just called to say a GP will come out today and he may have to go to hospital. We have already said we don’t want him going into hospital. We have both LPAs.
Also we have a permanent place at another CH for him and he’s supposed to move on Monday but we don’t think he will be well enough to travel. The current home cannot use syringe drivers
Dad has been losing weight for about 5 months. Last Saturday he was 7st 2lb and the week before 7st 9 lb and he says he has no appetite for any type of food.
How do you when someone is end of life? His quality of life is zero and he’s too weak to get out of bed

Hi Melles Belles,
I don't know if it's of interest to you but the first ever Macmillan Dementia Nurse Lorraine Burgess is hosting a Q&A on Talking Point on Wednesday if you had anything you'd like to ask her. She supports people with both dementia and cancer and their families with one-to-one help, post-diagnostic education, advice on future planning and emotional support; and works alongside cancer specialists and nursing staff helping them to understand the needs of those with dementia and cancer.

Here is a link to the Q&A thread: https://forum.alzheimers.org.uk/thr...-–-wednesday-30th-january-2-30-3-30pm.113825/

Thinking of you and your Dad

 

[Melles Belles]

My Dad died yesterday morning. Last Friday his chest infection had improved enough for my sister to move him to a permanent care home in the town where she and Dad lived. After Saturdays confusion he then settled. Monday the district nurse and GP visited and felt he didn’t have long left and may need a syringe driver. However on Tuesday morning my sister was called to say he’d taken a turn for the worst and had vomited blood like coffee grounds. They had called an ambulance but checked his care plan and realised we didn’t want that fir him so cancelled it. My sister was only 5 minutes away but didn’t get there in time though 3 carers were with him when he died. She said the home were wonderful when they washed, dressed and shaved him they were so gentle and talked to him throughout.
I drove up from London at lunchtime we saw him at the CH. A friend of hers father died 9 days ago and recommended a local funeral director (across the road from the CH) collected later afternoon and we cleared his room yesterday too.
Today we arranged the funeral for 22nd Feb and to register his death tomorrow. All the registrars local to us are booked up this week so we are going to Norwich office tomorrow. Apparently opening hours have been cut drastically. Also arranged for house valuations for probate. Banks next week.
We are just relieved that Dad’s suffering is over. He was complaining about being tortured which I suppose he was because of Non Hodgkin Lymphoma, Alzheimer’s and pain because he was so thin with no padding.
The medical certificate says cause of death NHL with Alzheimer’s contributing which we agreed with.

 

[canary]

Im so sorry to hear about your Dad @Melles Belles
You have got a lot organised - please be gentle with yourself
((((((((((((((((((((((((hugs))))))))))))))))))

 

[Theresalwaystomorrow]

So sorry @Melles Belles x
At least he is now free from this terrible disease x

 

[Melles Belles]

Thank you @canary and @Theresalwaystomorrow. Dementia (of all types) truly the worst disease robbing us of our loved ones and making them anxious and afraid.

 

[Amy in the US]

I am so sorry to hear your sad news, @Melles Belles. Please accept my condolences and some ((((hugs)))) at this difficult time.

 

[Izzy]

I'm sorry to read your news but I'm glad your dad's suffering is over.

Sending my condolences and wishing you strength.