I’d appreciate help in dealing with my dad being end of life

My dad was diagnosed with cancer in April,luckily he's had an operation and is on watch and wait as he didn't want radiotherapy..he's almost 80.Re you joining up the dots with the medical folks I found the cns nurses and care co ordinators a brilliant source of help ,advice and a sounding board when I needed to ask questions .

My sister passed away six years ago,bowel cancer that went to her brain...we had palliative care in the home provided by Sue Ryder hospice...was brilliant and pain free.

A️s for the stress I've no advice ,as a family it's just one day or second at a time.

Thanks for taking the time to respond and share your experience. 

I think the issue is we have no idea who the CNS is and I’ve no single point of contact to answer my questions so I will follow that up. 

Take care. 

Hi Jayne, Im sorry to read about your situation, it is awful, exhausting etc but you are not alone. 

Does he have a resoect form that says ge wishes to be cared for at your home, or do you have Power of Attorney for heath? 

Has he been told there is no further treatment available or is he still receiving treatment?  Reason Im asking is that when my husband was at the point of no more treatment, he was signed off from oncology to be cared for by GP and hospice. If you are not yet connected into a hospice, try to be, mine were amazing towards the end. You can often refer yourself in. My husband died last ywar from a rare aggressice sarcoma and wanted to die at home, which he did. He had a catheter too so you will need to see the district nurses to have that changed. I got them to come out to show me how to change the bags and straps etc as I was nervous about doing it. 

Do nag your dr surgery if nothing is forthcoming, they have a duty of care to him and also you.

Is there any other family or friends you can draw on, if so, just do lean on them because caring at the end of life is linely and exhausting. Try to find some time for something you enjoy, for me it was choir.

Do also chat here, there are many of us dealing with or have dealt with similar and it helps x

Thank you for taking time to respond. Things are moving quickly. 

The palliative team are now involved and a referral has been made to a hospice with the intention of hospice at home care. My dad is awaiting discharge to come to me. He is bed bound and his loss of mobility has happened so suddenly. 

A Respect form will be done. That’s going to be hard as my dad doesn’t realise where we are time wise, yet he’s a very smart man. There is definitely pride and dignity stopping him talking about the situation. I’m finding that hard. 

We discovered we had two LPAs for wealth and not the health one so had to do one quickly. It’s with the office of the public guardian to be finalised. I added a note about his terminal illness to help expedite the process. 

For his care package, they’ve said they’re working to 3 months and under but that’s not his prognosis so I need to ask the palliative care team for their view.

My mission is to get my dad out of hospital. Knowing how long my dad has will help us plan better and give the best care and support we can.

I’ve an amazing family but my brother lives a couple of hours away and has a young family so he’s no help. 

I think I need to take things day by day so my anxiety is not overwhelming. Seeing him in hospital is so heartbreaking. I just want to give him the dignity he deserves. 

Absolutely, you want to do everything you can to make wgatever time is left as goos as it can be. My husband lost a lot of mobility quickly too. He went from driving, going for shirt strolls or rides on his scooter, to having a downsrairs bed shuffling with a frame in less than  a week. He also didnt want to talk about it, he always believed he was going to beat the odds. It was me that wanted to know the prognisis and wanted to know things like his passwords etc.

If hes over 65, he will be entitled to attendance allowance, the hospice or macmillan will do it for you if hes not getting it.

Day by day is all you can do. Enjoy the time you have, get phone calls with people who he would like to speak to, and do things ge wants to and can. Mu husband slept a lot whuch enabled me to do jobs cleaning, washing etc, then when awake we would chat, watch tv togethervetc.

If youre working, get signed off too if you can. X

I just wanted to let you know that you are not alone on this awful journey. My dad is also terminally ill and receiving palliative care. He went into hospital last Tuesday with a UTI that wasn’t clearing, and on the same day diagnosed with primary lung cancer, spread to bones in pelvis and hips, stomach, and lymph nodes in the neck, chest and groin. He too was having falls at home and continence issues which we associated with his UTI. He now has a morphine driver in place and is administered medazolam PRN. We were told he wouldn’t make it past the weekend, but he has soldiered on. He is displaying what we think could be “terminal agitation” and the hospital are giving him medazolam to try and settle him. It’s extremely difficult to watch. I feel this overwhelming anticipatory grief and it makes me feel guilty that I am missing him when he is still here. 

We have been spending time with him over the weekend looking through photo albums and listening to his favourite bands, talking to him about our favourite memories of him and funny times we had together. The majority of the time he is highly sedated but we just keep talking to him and letting him know we are here and we love him. When he has been a bit more awake we have been asking him for life advice and what his greatest achievements have been, if he would have changed anything about his life and what would he have loved to do again. 

Xxx

Oh my gosh, I am so sorry you’re going through this. 

Yet I also feel connected to you and that I’m not alone. 

My dad loves his 60s music. We keep adding songs to a Spotify playlist.  

it’s so hard to process such a massive sudden decline. My dad was such a sharp guy and head of chemistry at a school, He’s 81 and had a good innings. We list my mom 22 years ago suddenly to heart fibrillation and I thought thet was awful as I was two weeks off giving birth to my son. Shock is awful but seeing somebody go downhill is heartbreaking. 

I just want my dad home  so we can give him the love and dignity he deserves. 

not sure how I’ll cope but I. Feel such a massive sense of going the right thing for him. 

Sending you a huge hug. You’ve made me feel stronger, knowing I’m not alone x 

There is a strange sense of comfort to know you are not going through this alone. Sometimes it feels like you’re the only family in the world going through this hell. The hard thing is watching life go on round about you when your life is falling apart. 

We had a meeting with the palliative team this morning and we’ve now been told to take things hour by hour. My dad has had some difficulty with the morphine side effects causing muscle spasms and itching so he’s been moved onto oxycodone. He is in so much pain. He is only 6 stone and has had so much pain medication and yet it doesn’t touch the sides. This disease is so cruel. 

Sending hugs xxx 

Oh my gosh, that must be so hard. Taking it hour by hour is hard to comprehend. 

I agree, being able to reach out and know you’re not the only person going through this makes it less isolating. 

It’s such a rollercoaster and yet when the decline starts it’s only going one way. I’m so sorry.

My dad is now coming home to me tomorrow with a package of care. I don’t know how it’s going to be but I know it will be hard. 

He hasn’t talked about it at all. I need to take it step by step with him. 

Has there been anything over the last few weeks that has helped you or connected you with your dad? Wondering how to best fill that uncomfortable void. 

Sending you strength x 

That is so beautiful. 

I’ve clearly read your messages in all the wrong order. I’m sorry. Just in and out of hospital. Multiple calls re meditation, oncology, equipment and trying to hold a job together. 

it’s so hard seeing a loved one decline so quickly, 

They also have such pride and don’t want to ask for help. 

Your experience is strangely helping me though and you’re so strong for sharing it.

I know listening to music will be something he enjoys. And I’ve questions about happy times in the past and want to cling on to the time I’ve left.

So sorry you’re going through this but it’s clear you live your dad so much, as do I.

If we can help each other, that’s a good thing x