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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

My dad is dying…

63 replies

Colouringaddict · 17/07/2021 03:04

My dad is currently at the end of life. He came home from hospital 6 weeks ago and he had a live in carer funded by the NHS. All was going well until last weekend, when something clearly happened and my dad refused to let him do anything. I got a call at 4pm from the carer to say he had called 111 and they had sent out a GP as my dad has been suffering for a very long time with massively swollen feet and legs. I was furious that he had done all of this without telling either myself or my DSis. We persuaded him to let him stay one more night and we would try to sort out another carer on Monday.

Monday morning at 8am, my DSis went to his house to see if she could solve the situation. My dad has had 3 massive strokes and is mobile, but has very little clear speech and pretty much no memory at all.
He was still insisting the carer left. Care company could not provide a carer that day and told us we would either have to do it or leave him alone. Monday night he was yelling out in pain, so I spoke to the palliative care team, who sent out an amazing GP, who really listened to us and took the time to explain everything. The fluid that was in his legs is now in his lungs, he has extensive kidney disease and none of this can be reversed. We decided that he would give dad a morphine injection, within minutes he was asleep and peaceful, we sat up all night keeping watch.
New carer arrives, not the person we were told was coming but another lady. We held nothing back, wanted her to have a very clear picture of what she was taking on. She decided to stay, but has never done end of life care, although she has studied it.
I wasn’t overly impressed but I am disabled myself and he needs expert care.
Fast forward to today, the extra carer came to wash him and change him etc, and I really don’t know what happened but the extra carer complained about the live in one, not helping to do all they needed.
Same carer arrived at lunchtime, saw he wasn’t wet and left. My dad is now on a syringe driver, which means a nurse comes every day to change it. The carer kept talking about my dad having pressure sore, but not to the nurse. Two hours after she left, carer decides his skin has deteriorated to such an extent, she wants a nurse back out to assess. That could take up to 6 hours, so she agreed to wait until tomorrow.
Then the other carer arrived, the same one that complained. They were having a full blown row in his room and it was loud. I wish I’d been more aware and reacted but I didn’t.
So, live in Carer’s are extremely difficult to find, AIBU to sack this one and hope? His care this week has been awful at times, he begged me to let him die in his own home, but at this point, I am tempted to look for a hospice place, my sister disagrees, but will hide behind me when anything like this occurs. I can’t change the care company, the NHS are funding and we don’t get to choose who they employ. This is traumatic anyway, he is our surviving parent. He has been so unsettled today, screams out when anyone touches him. His sister is a carer and will stay for the weekend, but has to return to work on Monday. She has been amazing today.
I was just sitting with him earlier, told him he was safe and he is totally adamant that he isn’t, heartbreaking.
Sorry this is so long, so if you’ve made it this far, does anyone have any advice please?

OP posts:
Original poster
Colouringaddict · 19/07/2021 22:35

He is now unconscious and pain free, his wish was to die at home, we now feel that we can manage this for him. He will now have a good death managed by us and the hospice at home team.

@Littlebendytoe, I am so sorry for your loss, cancer is about the only thing he doesn’t have, the cause doesn’t matter it’s the loss you have to live with that hurts.

OP posts:
Hotfootit · 19/07/2021 22:45

Good luck OP. Sorry that you and your family are going through this.

BryanAdamsLeftAnkle · 19/07/2021 22:58

Huge hugs. I'm glad the hospice at home team are helping. Sending you love.

Herecomesthesun70 · 19/07/2021 23:05

I'm so sorry you've had to go through this. Your dad must be comfortable now which must be a huge relief to you.
Love to you Daffodil

Hollywhiskey · 20/07/2021 09:52

I'm so sorry about your dad.
My mum used to nurse for Hospice at Home and Marie Curie and I was going to suggest them until I saw that's what you have now arranged.
My mum has always said how good a death that is, whether in the hospice or at home. They will manage your dad's medications so he can be pain free - when her own dad was dying and wanted to know what to expect she told him that dying while on morphine would be painless and like floating away gently on a cloud.
I hope the next bit goes as easily as is possible, which I know will still be hard, but I'm so glad you're properly supported now. Try and look after yourself, keep eating and sleep when you can. 💐

Cocolapew · 20/07/2021 09:56

I'm sorry you are going through this, my own Dad has been told he only has a few months left and I'm trying to organise what we will need for him coming out of hospital.
I hope your Dad is pain free and comfortable.
Remember to look after yourself too Flowers

Bonitalazenia · 20/07/2021 17:34

The battle you have fought for him shows that you are an amazing daughter.... hope you are ok xx

Original poster
Colouringaddict · 20/07/2021 18:44

@Bonitalazenia

The battle you have fought for him shows that you are an amazing daughter.... hope you are ok xx
It is the least I can do for the first man I ever loved. His colour has changed and his organs appear to be shutting down, the heart is the last thing and I think we might be at that point.

I have come home to lie on my own bed for a while, the lack of sleep is really making an impact. I have made peace with the fact that I may not be there at the end, but I have fought like a lioness to get everything in place for him, he knows how I feel about him, and I am sure my mum will be there to take his hand to encourage him to reunite with her.

Thank you so very much for your beautiful comments.

OP posts:
Whatwouldnanado · 20/07/2021 18:52

Nothing to add to the advice above but sending you love. Nobody could've done more than you have. Remember all the happy times.

Purplepeoniesdroppingpetals · 20/07/2021 19:19

Wishing you the peace and space to remember your dad with love and no more struggle.

Feelingbad2 · 20/07/2021 19:36
Flowers
EKGEMS · 20/07/2021 20:40

I'm sending you a big hug and wishing you and your sister comfort and your dear father peace in his transition from this world

MrSnowmansCarrotStickNose · 20/07/2021 21:59

Ow OP my heart is breaking for you. Flowers

Justgorgeous · 20/07/2021 22:21

Sending love and peace 🌸

Baycitystroller · 20/07/2021 22:26

Sending love. End of life is so hard. You’re so brave.

Milkteefs · 20/07/2021 23:05

The 'first man you ever loved'. That's lovely. I lost my dad this year - different circumstances, but I know what you are feeling. You've done a very kind thing for him. Much love to you x

Notimeforaname · 20/07/2021 23:32

Thinking of you,your dad and family op.Flowers

What a credit you are to him and your mum. Fabulous care from you.💕

olidora63 · 20/07/2021 23:39

Am thinking of you and your Dad. Just be aware that hearing is the last sense that most people lose .Sending you love 💕 💐

Original poster
Colouringaddict · 21/07/2021 09:18

My warrior dad grew his wings and marched into heaven at 8.05pm last night. I missed him by 10 minutes, but I had made peace with it.

Then spent the next 12 hours waiting for someone to verify his death and remove his morphine driver. Another night of fighting, everyone I spoke to agreed it was appalling, but nobody seemed willing to change it.

I held it together until I had to sign him over to the undertakers. That was unexpected.

He is at peace now, I hope I made him proud, all I could do was my best, and I gave that unconditionally.

Thank you all so much for your lovely messages. I am sure they will bring comfort in the next weeks and months.

OP posts:
Cocolapew · 21/07/2021 09:32

I'm so sorry for your loss Flowers

MintyCedric · 21/07/2021 09:34

Sending you a huge hug.

I lost my dad 8 weeks ago after 18 months on end of life care and everything you've written resonates so much.

I also missed his passing by 10 minutes...GPs applications to the local hospice for at home care were declined so we had to make the difficult decision to move him to a care home for the last few weeks. They called us in the early hours but we missed the call, however he slipped away so quickly after we wouldn't have made it.

Be prepared to be unusually together until after the funeral...everyone's different of course but that's definitely when it hit me like a ton of bricks and I could barely function for a couple of weeks.

I hope my dad is waiting to greet yours with a pint somewhere Smile. Take care of yourself.

Original poster
Colouringaddict · 21/07/2021 11:28

Oh Minty how awful for you! I have had unlimited access to him since he came home. I doubted we would get through it at times, but today, the feeling of relief tells me we did our very best for him.

My name was the last name he ever said, even if he did shorten it for the first time ever!

OP posts:
MintyCedric · 21/07/2021 11:50

I'm so glad you're feeling at peace with everything.

I realised a couple of days in that Dad would have had a much more peaceful passing where he was...my mum is very highly strung and would have insisted in being there but no doubt hysterical.

As it was, the nurse told him we were coming (even though he wasn't conscious as such) and held his hand and stroked his hair which is exactly what I used to do if he was having a rough patch.

The home and not being there isn't what I'd have chosen in an ideal world but it was the best thing in our circumstances.

The last time I saw him he was quite out of it, but I sat and gave his hand a squeeze and he squeezed mine back and we sat doing that for a few minutes...it's a lovely memory to have.

Flowers
JudgeJ · 21/07/2021 12:22

@Colouringaddict

My warrior dad grew his wings and marched into heaven at 8.05pm last night. I missed him by 10 minutes, but I had made peace with it.

Then spent the next 12 hours waiting for someone to verify his death and remove his morphine driver. Another night of fighting, everyone I spoke to agreed it was appalling, but nobody seemed willing to change it.

I held it together until I had to sign him over to the undertakers. That was unexpected.

He is at peace now, I hope I made him proud, all I could do was my best, and I gave that unconditionally.

Thank you all so much for your lovely messages. I am sure they will bring comfort in the next weeks and months.

Don't woryy about missing him be 10 minutes, when my mother was in a Hospice my OH stayed with her all day until I came home from work. In the 15 minutes I took to drive him home, planning to return, she died and I was so upset that no-one had been there but the staff said it was very common, often the patient died when the family member had gone to the loo, it's as though they waited to be alone. Once the funeral is over and the necessary things have been done you must sit down and say 'I did everything I could for him' and be very proud of yourself.
Bonitalazenia · 21/07/2021 12:26

Everything that @JudgeJ said. I'm a Nurse and I see this so often. So sorry for your loss.