End of life

Hi Laura. Please don’t apologise for your post. The issue you raise is something all of us cancer patients live with. You are not being insensitive but I see you’re looking for practical help. There are a few forum members here who have nursed elderly parents through to their dying. They may pop on with some advice. Meanwhile there is a forum for supporting somebody with incurable cancer here https://community.macmillan.org.uk/cancer_experiences/supporting-someone-with-incurable-cancer-forum

i hope it’s not to hard for you and your dad. Hugs 

Hi Laura, I read your profile, you have so much going on, my lovely, my heart goes out to you and yours. I'm a retired community nurse, so supported  a number of patients and their families during the last stages of life. I'm hoping you have a good team applying the syringe driver, who will be able to keep your Dad comfortable, adjusting the medications as necessary to help keep him pain free and peaceful. Patients often stopped eating and drinking but that's OK, you can help keep his mouth moist with flannels etc. We used to keep patients clean and dry with pads, as the end gets near people don't pass much urine and poo. Sleeping most the time is very usual too. Keep chatting around your Dad and holding his hand, he will know you are there. Let us know how you go. Take care.Bissell. 

Thank you so much for that. I'm kind of dealing with things at the moment pretty well. I know I can do this bit having done it for my nanna 5 years ago, however she was old, and different location. tend to make light of things with dark humour, that's how we've always been as a family, but from the outside, we must look so cold.

I asked my dad earlier, before I took my mam to chemo, if he wanted anything. 'I want to die, but it's taking too long' was his reply,  and we chuckled. 

As I said goodbye this evening, see you tomorrow pops, his reply, 'hopefully I won't be alive then'. ! And you know what? That doesn't upset me in the slightest. I just dread the thought of some of the things I've been told are a possibility of happening, actually happening, because I know how awful that will be for him primarily, but also my mam and sister(33yo). I'm prepared for it, obviously hoping not, but prepared at least. 

Our support team from DN and Macmillan teams is incredible, second to none, I just don't want to ask them the difficult questions of realistically how do we think it will progress,  in front of my mam, because she can't deal with it, she's very poorly herself too! 

Thank you so much for your lovely words, I feel like I can't share what's really going on in my life with people at the moment, because it's the awkward moment when they ask how I'm coping, and I sound cold and heartless when I say I'm fine!

Not quite sure why I've just blurted all that out on you, but I feel better before I even hit post. 

THANK YOU!

Thank you for your reply, it means so much just to know I can just pick up my phone, and someone is there, without being on the phone and potentially overheard by the kids! 

There's some really good comments from that link you shared, so thank you again 

Laura, if you are ok with phone chatting for support contact the Swallows Head and Neck Charity Website and Phone number They have excellent carer support and the phone is answered 24/7 by a person, usually Sharon Curtis who is the CEO's wife.

Hi Laura Some years ago I was my mother's primary carer and a short while ago my uncle's so I understand what you are going through.  We all have to face this situation - either as the patient or the carer so you should make no apologies for asking the question as I am sure your question will help others too scared to ask.

Some of this will be practical and blunt - sorry in advance.

The first thing I would say is that you need to look after yourself.  If you are tired and unable to deal with things you will be of little use to your parents. 

Hopefully you have Power of Attorney in place for both your parents.  Having that will make life so much easier for everyone.  If you don't then the process will take too long for your father, but try and start it for your mother.  You DO NOT need a solicitor for this as the Gov website holds your hand through the process. If you don't have these in place make sure the clinical teams write in the records that your parents consent to you acting on their behalf.

It is never too late for a will if one is not in place.  It makes the whole legal process after death so much easier.  Generally a simple on line one will suffice.

On a practical level if they have joint bank accounts - or even separate ones try to move money to your Mother's own account as your father's will be frozen on death and that may leave your mother short.

Please try to find out what your Father's wishes are for funeral arrangements etc.  Again that will make life easier and you will know that you are fulfilling his wishes and gain comfort from that.

Hopefully you have plenty of clinical support in the home.  If not get hold of the GP and make sure you are properly supported.

I would 100% recommend getting in contact with the local hospice.  That does not mean sending your father to the hospice as they will probably have outreach services delivered in his home.  These people are experts in helping the patient AND the family through the last stages of life.

Unfortunately for many people the body is incredibly resilient in the last stages of life and this process can take many days and can be distressing as the body shuts down.  At this stage people like the hospice and GP can be invaluable in helping you and your Mother cope during this phase.

Finally I would say that from what I glean about you, your father is so lucky to have you there for him and he will be very comforted by your presence and knowing that you are there for him and your Mother.  You have your own family to look after as well as your parents.  If commitments allow try and spend as much quality time with your father as possible as you will again gain comfort from that.

I am more than happy for you to PM me if there are any other issues you want to pick my brains on - not necessarily clinical, but the practical things you need to do after he has gone.