Personal Care of DF - devastated

[Mother87]

DF 90 palliative care...not long to go... Have I made a huge mistake? Inbetween hospice@home/carers/night-sitters it's just me looking after DF for a few hours (sent DM to mine each night as she's just not coping) Have had to help DF with toiletting - handled quickly/as 'discreetly' as possible... but he's in/out of being lucid... had 'terminal agitation' yesterday and said terrible terrible things to me. I've been told it happens/it's upsetting but 'normal' And tonight for the first time during this god-awful process, i tried to help him to pee in a bottle (been a commode so far/easier to shield the view somehow) and he looked at me in total disgust/shaking his head as to why we're both in this horrifying position... Have i done the very worst possible thing to my very dignified/proud DF by trying to be here every second... I'm devastated

No, my dear , it’s love. You’re doing what you can. I’m so sorry about your dad. Look after yourself too. 💐xx

You are doing this out of love, and your dad if well would love you for it. Please don’t be devastated that you are doing this, though I am sure the reality of your dad having a limited time left is terrible for you.

He would not be saying terrible things but again it’s very hard for you to hear but he won’t remember any of this.No words of advice just sending love and admiration for you x

Namechange/hero - thank you for responding... i thought i'd googled lots if info about this situation - I didn't appreciate how gruelling it would be - or that my beloved DF would say such terrible terrible things to me... and the look in his eyes when I was trying to help him... at the moment I feel like i'm going to die from crying and heartbreak... the marie-curie night-sitter has just arrived so i'm sitting in DF's bedroom, have been smelling all his beautiful suits and looking at letters from the 1950's about job's he was doing... i don't know how i'll survive this - I know people do though... sorry, thanks for reading xx

I am crying reading this remembering the last week with my DF. It's so hard for you at the moment but in the future you will look back and it will be important to feel that you did all you could to help him. Also bring there for you DM and letting her get some rest. Sending a big hug.xx

You should be proud that you have helped the overall care plan for your DF, and spared your DM. Do make sure that you have absolutely all the care that is due to him from the council/hospital/hospice. It’s really hard to step back from the picture of him now, and replace it with the father you knew/loved. What a great idea to look at his suits/letters. I do really feel for you - I have been through similar and it’s hard.

Pennow/ox136 xx

It's love.

You and he are the sum of all moments, all parts. These are just some of them. They all matter.

You've made all these decisions out of love for your dad. He knows you love him regardless of anything he has said or any facial expressions now. Go easy on yourself, this is such a hard time

It's a horrendous awful situation you are going through. But there will come a time when you will look back with maybe pride maybe relief, that you were able to do this for him. I went through very similar for 10 days with my father before he passed away. Please make the absolute most of your time with your dad. You are brave and strong, what a fantastic job he did raising you to be so very loving and compassionate.

Thank you cherry/gooseberryall of you... i know this happens in different ways to everyone... and DF is a 'good age' - we were due to go back to his exotic homeland in November to see the family... i know everyone wants more time/one last chance... how does anyone ever ever recover from this? Am lucky to have had my parents for so long - and I usually see them nearly every day, and they've been incredible GP's to 3 DC's - I just can't imagine how I'm going to 'manage' or to ever be happy ever again... i know I'm sounding pathetic/unhinged but until just a few weeks ago all was fine...

Thank you sosig... to all of you, who've been through this/similar...

I have pm'd you. Keep putting one foot in front of the other is the saying that helped me. One hour, one day at a time - deflect long term for now and just focus on what is happening here and now.

The world is a better place for having loving women like you in it OP

Thank you cherry/vulcanxx

OP
Apologies if I’ve misunderstood
Are you saying there are other options for his care? My dad died in a hospice. I was relieved that hospice at home was never even suggested to us but I know it can happen due to lack of spaces.

I really have to go to bed but I will check back the morning.

Hold your head high you are a wonderful daughter..I lost my parents far too young..you will always appreciate this time even if it’s 😢

Rosa - we were told there 'might' be space at the hospice... but the palliative team have been amazing... and we've just started hospice-at-home (from tomorrow) & the carers/night-sitters have just started... the 'problem' is that during one of the gaps when i was alone today i had to help DF having a wee (somehow before this the carers helped/me and DD managed it 'discreetly' with a commode) This was different as i had to use a bottle etc etc... i feel like i've caused huge distress to a very very proud and dignified man by 'allowing' him to be in that position with his daughter - when maybe I could have 'pushed' for the hospice/worked something else out... the families intentions were 'good' of course - to keep him at home, which is what he wanted... i feel like I'll be traumatised forever with the memory of his expression, whilst being unable to communicate properly or barely move. I honestly felt like i'd been torturing him - and i can never ever make it up to him now... i feel like i've truly let him down by not working out any other plan to save his dignity - this will haunt me forever and I was supposed to provide comfort... DM has fallen apart/panics generally... DD 25 has been incredible but this happened in a gap with no-one around...

Nannythis was never going to be a 'happy' thread was it... life can be so cruel xxx

Better to adapt a matter-of-fact approach to helping him with toiletting, you gave him his dignity by providing him with what he needed, rather than letting him wet himself and all the indignity that would have caused. It’s happened now, you made him physically comfortable by putting his needs first. It’s a loving sacrifice in a way.
Don’t dwell on it. Today is a new day, focus on that. Xx

Hero - thank you - yes sort of trying not to take anything 'personally' with him now... this isn't him/these aren't normal circumstances i know x

I had this with Mum, I know it's not quite the same as with your Dad but she was very modest and private and I had to do everything for her. We had a couple of terrible moments where she was furious and even aggressive with me but I don't dwell on them because overall she was better off at home and died in her own room where she wanted to be. In a lucid moment a couple of days before she died, she told a nurse that nobody could look after her better than me. At another point she said to me 'you're my Mummy now' which in a way was helpful because I could think of it as returning some of her parental care. Don't dwell on the look he gave you, it's shocking at the time but it's not really him. Let the carers do as much of the personal care as possible, you can't help it if you have to plug an unexpected gap. Remember he's fortunate to have a loving daughter with him to see him safely to the end.

Same happened with my dad too. It was very distressing for both of us. He had a significant toileting accident and we had to change him, the bed and wash him too.

I think now on reflection it was good for me, it prepared me and helped me understand what he was going through, good and bad. He had cancer and was at the end of life that this happened. I think it gave me an empathy and respect for life that I never had before and i really understood the fragility of life.

Whatever your dad said or did in that moment, please please don’t take it personally. Try and detach from that and put it in a box of practical activities that aren’t related to the Heart or soul your lovely dad. The body betrays us.

Perhaps today you can look through some old pictures with him? Have some nice moments.

I hope you got some rest and today is a time for you and your family to spend together looking after each other. Favourite stories/music/whatever helps.

SalitaeAtaluneCherry - thank you for your support - am taking it all onboard...yes trying to understand the those terrible moments were just that... i've had nearly 60 years of his love, protection and support... am sleep-deprived/zombie-like now... but he was smiling this morning... the hospice nurses suggested more Midazalam sp?now to ease him along & DD/I (think we) managed to catch him alert and asked him if he wanted medicine to help him dream and sleep forever (which he'd expressed in not so fluffy terms last week) We asked the question in many forms and he said 'die' a few times... told him we'll meet him again one day in his far-exotic homeland and that he was the best daddy & grandad ever... so i suppose it could be a while... thought i'd run out of tears by now DS21 is leaving for uni tomorrow, first time away from home (stayed at home to do his degree - off to London for masters tmroow) So am also wailing inside about that, even though 'it's time' except there's no space - he's just been the best kid ever, like my big shadow who makes me laugh and we've always done fun stuff together even though it's not cool with your mum so i had planned to take him/make a weekend of it - told him i'll catchup with all of that soon & apologised for not being home this week to mollycoddle help him get packed etc... everything is aching😢😢😢

Your son will understand his grandpa has to come first for now.