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

You are giving your df the greatest gift a child of any age can give. Your total love, attention, compassion and care.

His outbursts are not meant, just the angry ramblings of a medicated brain and his illness.

Your son will understand his grandad comes first right now.

Gentle hugs remember to care for yourself as well x

Minx - thank you

Bless you 💐 what a wonderful daughter you are.
Maybe as a pp has said a couple of photos to make him smile, or some music? something to move on from the 'toileting incident'
Life is hard at the end, but to have our loved ones with us when we are most in need is truly a blessing.
I have been where you are with my DM. You are doing so brilliantly, please be kind to yourself.

Chicky- thankyou... yes we've put a small 'gallery' of lovely pics & we've been playing his favourite music...even saw his feet tap once... honestly apart from that... i'm finding it utterly gruelling/worrying about him being in pain - i keep thinking he's trapped in hell unable to speak sorry!! I had to say that because i've been beside myself again tonite... he's having sedation but is so agitated when it wears off & keeps looking at me like a wounded animal... sorry - i don't know who to talk to

Oh my, how sad.
Such a tangible sense of sadness, grief and love in your posts Mother.
I have no magic wand or words of wisdom but wanted to post so you dont feel quite so alone.

You sound so lovely, and loving.
I honestly think whatever decision you make at this stage will always make you question the what ifs, in the future.
It's a shitty situation op, and there is no 'one size fits all' answer.

In my parenting I can look back with hindsight and think "I should have..." but now I aim for doing the best I can at the time. What more can a loved one ask for? It eases my self chastisement because i know that whatever decision I made, was made with love. As long as you act with love in your heart you cant go too far wrong.

I wish your father an easy passing, and your son a great time doing his masters, and I also wish you some sleep, some nurturing and hopefully very soon, some peace in your heart.

You sound like a wonderful daughter and you’re doing your best. That’s enough.

I remember my darling bil getting cross with me when he had a day left in the hospice. I knew he was drifting and was worried he was going to spill a drink down him and surprise himself. I did the wrong thing and he was so cross - I can smile about it now, but it made me feel guilty, down and so worried. His wife told me recently that he’d said so much worse. It was just his illness.

There’s a nobility in helping the people we love and if it helps, I’m with you and wishing you calm and peace and support.

NoClue/Sarah - thank you xx

No, you are being a good daughter. Your dad is safe with you and you know the carers who help. We did the same for my mother in law, it is difficult for them but after a while they accept and are glad to be comfortable and cared for in familiar surroundings.

You're a compassionate woman .

Total respect to you Mother87. You are being there for him 24/7 in every way possible and making your own sacrifices to do it. I was in the same situation with my own df whilst also trying to support dm. Often left my 13 year old daughter alone at home in tears to be with him so I understand your feelings about your son. You must feel awful when he seems angry with you but I think in my dad's case he was angry at his own helplessness and this sometimes came across as angry with me.
You are going through the most awful time but your love really shines through. Try to find support for yourself where ever you can with carers and if no where else at least on these boards. It can't help in any real way but know that strangers on the internet are with you in spirit tonight. Again ..total respect to you.

Oh op. I read this while up in the middle of the night feeding my baby. My parents are your age. I'm too young to have faced what you're facing. I dont know if it's a weird hormonal thing but I swear I have somehow become less able to handle emotions since becoming a mother. I sometimes wonder, if I can't handle watching David Attenborough documentary, how am I going to handle the rest of what life has got in store for me? You are strong, even if you dont feel like it. I hope I can find similar strength if I ever come to needing it. Every respect to you.

Sending sympathy to you all. I’ve been a home carer as a job, and now full time for my disabled mum. When it comes to personal care, I can only advise being as matter of fact as possible while trying to preserve dignity. I find wearing disposable gloves and apron adds an extra barrier, both physical and mental. Covering the area with a towel as much as possible and getting rid of bottle as discreetly and quickly as possible. Some people like to joke, others to chat about something else and others prefer to stay quiet, close their eyes and pretend it’s not happening.
It might be worth speaking to district nurse/continence nurse it it is very distressing for him and likely to be a regular occurrence. Pads/conveen (like a condom attached to a leg bag) catheter etc are all options that can be considered depending on all other options.
Well done for all you are doing. It’s not an easy time-please don’t waste time feeling guilty, you are doing everything you can. Give yourself a pat on the back, get yourself some treats and ask for help when you need it.

Been there. I seemed to detach. He wasn't my Dad as I knew him, more someone I cared about very much and would help all I could, but my Dad had already gone. The odd nice lucid moments I somehow managed to separate as moments in time. I think it was my brain's way of protecting me.

Sending you a hug and a handhold lass.

Cleanmywindows... i was always definitely'less able' to handle emotions after 3DC... i've given in now with the 'be strong' stuff... i'll just try not to cry for the rest of my lifesorry, that's the way it feels right now... congratulations on new-ish?baby xx

Trockodile - thankyou... we seem to have moved past that stage rapidly now... probably last few hours/day or so at most... trying to rationalise the 'reality' of the last few days in my head... very reassured by all of you on here - i know i'm not alone.... he's comfy now xx

Shiningstar - thank you

Told daddy it's ok to go... we're all taken care of because he looked after us so well... Told him he'll be with his mum in a far-off exotic land... (sorry if am repeating myself) Told him i'll meet him there one day on Orchard Rd, we'll go and eat satay like we used to... and go to Pagoda St to his favourite tailors to order more shirts...
DC21 left for uni at 7.30am - loaded up with enought supplies for a zombie-apocolypse as no food or terrys choccy oranges etc available in london of course
Daddy seems comfy now - can still feel the brylcreem in his hair from just the other day...such a beautifully dressed man with his tailor-made suits and cufflinks and hats...this seems to have all happened so so quiclkly - am sure everyone says that... i was complaining to him in just July as he didn't want to come on the holiday we'd booked - he said he didn't 'feel well' and he'd lost weight... just days ago he was eating and cooking and bossing mum around

I am in the same situation caring for my OH. My DDs have had to do some things for their Dad that I never dreamt they might have to do - but needs must. I understand your concern; but, even though it feels undignified for him, it is an act of love and you are doing the right thing.

Take all the help you can get - you matter too. And let his irritation with you wash by - my OH sometimes believes I am trying to poison him - I know it is the illness and not him speaking.

- good luck with all this - and well done.

Oh bless you Mother. You will come through this I promise, and yes, you will be happy again. Its not the same, of course not, but you will learn to accommodate his loss with time, if that makes sense? Anyway, that's all for the future.

You must be glad he's comfy and peaceful now. You're being a wonderful daughter to him, caring for someone you love so much is gruelling isn't it. Hard as it is, it is also a chance to say all the things that you want to, and for him to hear them. That, alongside all the loving care you are giving him, will comfort you in the days to come. Take care

I'm so sorry you're going through this. Crying isn't a sign of lack of strength in my book. Have you got some support around you? It seems like you are propping everyone else up. You are doing an amazing job, you are enough. Wishing peace for your dad op.

Thank you all... sorry for those of you who have gone/are going thru similar... i guess we all understand each other... Daddy peacefully sleeping & comfortable... i suppose it's a 'vigil' now... but all calm xx

I am so sorry to read your pain through your posts. Your love comes across so clearly. You are doing the very best you can.

I went through exactly this with my Mum in March this year. She was 69 and died of bowel cancer. I was so tormented in those last few weeks / days. There were times I ended up sitting outside the hospice room howling on the floor unable to go in again as I just couldn’t bear to see her look so awful, and I knew the end was coming.

Something I will say that really surprised me was that when she actually finally went I felt almost elated. Which seems such an awful thing to say but she had suffered so much and been in so much pain, and I had already spent the last few weeks in total grief and bereavement. It was like I had already done a lot of my grieving before she even went and that’s something that I can feel coming through your posts so please don’t feel surprised if you find yourself feeling quite different afterwards to how you expect. I had counselling and talked it all through and the counsellor said there is no right or wrong way to miss someone or come to terms with someone’s death. Be kind to yourself.

Fairylea - xxx

Don't know if anyone's around... or i may have worn out your sympathy.. we're still here - another "anytime - probably in the next few hours" day - had a few more unsettled moments yesterday which honestly were harrowing (for us) - but the nurse assured us he was 'comfy' and upped his meds... Am 'unable' to leave as I don't want to miss a second... and i'm wondering - how does a daddies girl live without her daddy? Cannot imagine a way forward yet...

I’m so sorry, try to focus on now, hour by hour. The future will happen, but it must seem full of dread. X