My dad is dying.

[Honeypot1980]

My dad was diagnosed with advanced Lung Cancer on the 1st October. He is only 62 and is also in his 7th year of Alzheimers disease.

We placed him in a care home in June this year as we thought his Alzheimers was declining so much we could no longer give him the care he needed. He collapsed in the care home and was rushed to hospital where a CT scan showed a massive tumour in the right lung with secondary cancer in the lining of both lungs. The consultant said he believed that the cancer will have spread to other parts of the body including the brain but due to the Alzheimers we agreed no further tests or treatments and decided on a care plan to make him comfortable. The Dr felt that my dad would not be with us at Christmas.

I would like to hear others stories of palliative/end of life care as I am really struggling with watching my dad fade away in front of me. The care home have agreed to allow us to visit once a week due to his end of life diagnosis. My dad has been non-verbal for almost a year now so cant tell us how he feels, if he is in pain etc, the nurses are going with facial expressions for measuring his pain and prescribing oramorph. He started taking seizures last week (probably caused by the brain mets) followed by episodes of severe agitation and he was given Midazolam. He has lost so much weight and looks so frail, he is not eating or drinking much either.

I hate to see him suffering but then in the next moment I feel so guilty as I wish he would just sleep away and no longer be in pain. My head is all over the place, I am constantly waiting on the phone ringing, trying to be a wife and mum and carry out my work as well. I know its not about me just now but I feel as though I am drowning.

Sorry for the long rambling post!

My dad died in April, at home, of various cancers, having only been ill since January.

Ask the care home how you will be notified. Think about whether, if he goes in the middle of the night do you want to know then, or wait until morning? I was with mum at home and the overnight carer came up at three thirty in the morning to tell us he had gone.

We were very lucky, he was only sedated for a day and just quietly stopped breathing in his sleep. The carer was there, noticed, went to check and he was gone. We had dnr etc in place so no silliness trying to revive him.

I hated seeing hmm so frail, I said to my sister he wasn't like my dad, he could have been any elderly man at that stage. But now and then I saw a glimpse of the real him.

I'm very practical so I had already looked into who we needed to tell, how to get death certificates etc, how to contact undertakers, what we could do re funeral (given we were right in the first lockdown).

Just try to keep yourself busy, but take time for yourself and reflect. Tell people if their demands are too much, even people checking how he was doing was getting to be such a burden near the end.

I'm really sorry, your dad is too young to have been this ill for so long, and it really sad you're losing him this way.

I'm so sorry you are going through this. My mum died in a care home in April, and had end of life care with them - she had severe dementia but stopped eating and drinking and eventually tested positive for covid but had no symptoms of that apart from one day of fever, her body just shut down.
The GP prescribed an emergency palliative care drug box for them to hold with an as needed prescription so that they had instant access to what they needed to manage pain, agitation or whatever. I made very clear that the emphasis had to be on mum being comfortable above all else, and in her last 2 weeks she didn't have her regular medications apart from painkillers. The last day, a nurse asked if there was anything that might give her extra comfort apart from her toy cat, and the lovely nurse sat and said a rosary for her in case that got through.
Its awful, but you will need to know which funeral directors you want to use as they need to be able to call them, potentially in the night.

The waiting was almost worse than the end tbh. Mum herself had died long ago, and this was like her body catching up. Now I am much more able to remember the vibrant woman she was before dementia

Wishing you strength in the days to come

So sorry . Didn't want you to think nobody cares here, we do

I'm so sorry. I don't have anything helpful to add but wanted to give these

I didn't want to run without firstly saying how sorry I am to hear off your news.
I have been a nurse for many year and currently a manager in a nursing home. The homes I have worked in over the years tend to provide excellent end of life care often going above and beyond for the residents.
Rest assured your dad will be well looked after with tender loving care in his final weeks.
If you haven't already now might be a good idea to discuss an end of life plan with one of the staff, if you want to called if at all possible once death is near, religious views and if your dad would have wanted a religious representative to visit and say a prayer, choice of funeral directors and if your dad would prefer cremation or burial and any other special requests you think dad would have wanted at this time. Although not easy to talk about it's easier now than when the event takes place and emotions are high.
I am here if you need any further advice xx

So sorry you are going through this loss. It's quite normal to wish death be speedy, nobody wants the end to be drawn out. It's normal that someone dying loses their appetite and thirst, the nurses can help keep their mouth moist. They may be able to give lip balm for dry lips. Look after youself, no-one expects you to be yourself and on top of everything when you are going through such this. I hope your Dad's last days are peaceful, he's been through a lot

My OH died in a nursing home in February following years of PD decline and a fall that fractured his hip and sent him into an impossibly fast decline that left him paranoid and fearful all the time. When he acquired a chest infection we made the difficult decision that he had no quality of life at all and that the merciful thing to do was to not send him to hospital for heroics, but to let him die peacefully in his nursing home room - with us around him - this was just precovid. It was in one way an easy decision - no-one would want their partner to suffer - but in another difficult as he was relatively young. Not an old man by any means.

Midazolan was an absolute godsend during his last weeks - he was mostly unconscious but at the slightest sign of distress he was given a dose and slipped into a peaceful sleep once more. The home was being supported with visits by the local hospice nurses to give them advice.

I was reassured to see that everyone was on the same page - keeping him comfortable and out of pain, but not going in for heroics. He was gently tended - kept clean, turned to prevent pressure sores, gentle mouth care, always talking to him and telling him what was going on. I could not fault them.

It is a painful process and I know that my DDs found it hard, as of course did I, but be reassured that you are doing the right thing. You are following medical advice - there is nothing more that you can do.

I know that sense of guilt of wanting him to just slip away peacefully, especially as, in our case, I had taken the decision to basically let him die. Bu there is no place for guilt here. Bizarrely I found comfort in the knowledge that dying is just a normal part of life, and that this is happening all round the world millions of times a day. And his dying was more comfortable than most.

I am sending you love and strength and a hand hold for the days to come - no guilt please - your desire that he should sip away means that you understand his life is drawing to a close and that prolonging it is pointless - and it is a merciful thought not a bad thought.

Nothing to add but my dad is dying of a lung condition too so I know how hard it is. I also secretly hope that he will just pass away quickly with no pain and no suffering but at the same time I don't think ill ever be ready to let him go.

@2ndtimemum2
It is such a mix of emotions- you want them with you fit and well to enjoy life and when that’s no longer possible you hope their remaining time is calm and without discomfort. Wishing for them to slip away is through love - you want a peaceful end for them.Your world changes but you will be ok, take one day at a time

We lost Dad in 2019 after a five year battle with lung cancer - he got a few extra yeas thanks to a drug trial and got to meet my first son and passed shortly before the birth of my second little guy.

I hope you are coping ok. All I can say is that in the end you feel happy for them that they're finishing their journey and you can appreciate the good time that you had.