My dad is dying…

[Colouringaddict]

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?

I have no helpful advice, but just wanted to send . What a sad and frustrating situation. I wish you all the best with getting some peace for and about your dad.

I don't have any advice but didn't want to read and run. for you. This must be a really stressful time for you and your sister, especially as your disabled yourself. I hope you can get something sorted. I would definitely complain about the conduct of the carers, a row in your dad's room is just not on.

I can’t give much advice I’m afraid but you have my sympathy, it’s such a tough situation. My very elderly uncle needed a lot of home care towards the end of his life and, even though he was funding it, it was still very difficult to find reliable and genuinely caring home carers.

Maybe a hospice would be better, they could manage his pain and give him round the clock support? If your sister isn’t in agreement then can she come up with an alternative plan of action?

Hopefully somebody more knowledgable will be along shortly

I am so sorry to hear this and the service your father has received has been appalling. However it may be too late now to move him to a hospice if he is on a syringe driver. Please ask the palliative care team if there is a ‘hospice at home’ team in your area. And when you feel stronger later please tell the Continuing Care team about the experience with the carers, maybe they will stop using this company for their very vulnerable end of life patients.

Ah op it is so hard. You sound like you are trying your hardest for your dad. I hope he manages to find comfort and peace

Having cared for a couple of family members and visited a few more in their final days, I can tell you that pressure sores are unfortunately part of end of life. I don't know anyone who has avoided them. Do you think it's possible he's hallucinating a little? And that's why he's feeling anxious? Pain will also make him unhappy at being handled.

Personally, if he has asked to die at home I would try and respect that. Watching someone at end of life is traumatic...there have always been elements that I was unhappy with in the palliative care my relatives received from professionals with mine and my family's assistance. But it's hard to be objective in these situations and dying isn't always peaceful. Only you can judge whether you should be looking for alternatives. Carers having a row in front of you is highly unprofessional though I have to say.

Getting medication right I think is key to a lot of this. Regular bathing of wounds/ dressing changes..moving his position in the bed if you can. If all of these things are being done, there's not much more that can be done in my view.

I'm sorry you're going through this. I hope he will sleep more. Being able to hold his hand is such a blessing during this time. You're doing a better job than you think. X

District nurse came this morning to give him the next 24 hours of meds in his syringe driver. He was in so much pain he was crying, they tried to give him an injection, he was combative. Nurse asked me to call the hospice, they are not on top of his pain. I called and was told, it is Saturday all the Drs have gone home. We can’t change his dose until tomorrow!

111 have yet again come to the rescue and are coming out to increase his dosage.

He has told me several times today “ I can’t take any more, please help me”

This is just not good enough

I’m so so sorry that you and your dad are going through this OP.

You mentioned he has no memory etc - would be able to above a conversation with you about moving to the hospice at all, or is this not possible.

I would try my best to respect my parents wishes if they were comfortable and pain free. However, i would also consider what you think your dad would do if he knew and was more aware of his current situation. Do you think he would want to move to the hospice if he was fully aware of what was going on?

It’s so difficult isn’t it. We lost our mum just 4 weeks ago, it is devastating to see our parents in pain 💐

So sorry that you are going through all this and the impending death of your last remaining parent.
I think you might have no options but to try the Hospice. I found the hospice better than a hospital. A hospice will also be much more considerate and caring towards your father and all the family members. You have tried hard to follow your dad's instructions but the best thing now for your dad is to be as pain free as possible.

Are there any volunteers groups nearby that help with palliative people? About 15 miles to me is a no one dies alone group that will come in and sit with your dad.

Have you asked for a meeting with the manager of the company looking after him.

I am so sorry that you have to go through the stress.

If they cannot keep on top of his pain meds at home in his syringe driver then he needs to be moved to the hospice as an inpatient where they can keep on top of it. My dad had 2 syringe drivers by the end of his life.

His wish to be at home has been overridden by his wish not to be in pain now

@Colouringaddict Awwww, I'm so sorry, for you, AND your dad, and the rest of your family.

It's so cruel and heartbreaking to see our loved ones go through this. We wouldn't let an animal suffer like this. I don't understand why it's allowed with human beings. But that is a whole other thread.

Hope you are OK, and I hope your dad isn't suffering for much longer... I'm so sorry.........

your problem is the carers , nhs will send the cheapest care company and most of the time these carers have received the most basic training ever ! it's not good enough at all , I would get rid of live in carers they are no good at all ! you have other options , you can choose your own care company to come and they will sort out the funding from social for you . you don't have to put up with the shit care from the NHS ones x

This is so sad to read. Please try to get him into a hospice where his care needs will be met and you, your dad and the rest of the family will have the time you need to say your goodbyes without having to worry about his pain or comfort. That is what hospices do so brilliantly IMO, they give people precious quality time to die in dignity free from the anxiety and anticipation of pain.

I’m sorry to hear you’re going through this. I had a very similar situation with my mum who died of terminal bowel cancer. She was absolutely adamant she wanted to die at home but the amount of pain she was in coupled with her living situation (on her own, I’m disabled myself and have a disabled son and could only do so much) just meant it wasn’t a realistic situation. We ended up getting her into a hospice so at least she always had people around. Would that be an option? I’d ring your nearest hospice and speak to them and see what they can suggest.

The one thing I do wish I’d done is ring 999 more when my mums pain relief wasn’t right. There were too many delays with doses and drivers and it wasn’t good enough.

I'm so sorry for you and your dad
I think it would be better if you could find a hospice for your DF. We nursed our father at home about ten years ago when he was terminally ill but then DFIL was ill a few years ago, we found the services had deteriorated considerably. It's difficult to find continuity of care now, and that was even before there was a pandemic to factor in.
Hospices are designed to provide a safe and calm environment. It will allow you space to face the emotional impact of your dad's condition rather than getting caught up in logistics of trying to manage care. My DMIL is currently in a hospice and it has been a humbling and heartening experience. The atmosphere and the standard of care have been amazing; and it is very much geared to the individual patient and family.

I have spent 10 hours on the phone today trying to get him some effective pain relief. I am now in his room, in his very posh recliner chair watching him sleep. It’s not a peaceful sleep. Hospice at home team are supposed to be ringing me in the morning, with a ? On admission. He will put up a fight I am certain.

The 111 dr came out this evening and all he did was write a prescription. They can’t raise his morphine too quickly because “ that is what Harold Shipman went to prison for!” We ended up with 2 emergency nurses here at 10.30 and they managed to give him an injection and he is a bit more peaceful now.

Losing a parent is hard enough, but to be totally unsupported by the experts is so frustrating!

I am sorry you are going through this. We did too with my Dad earlier this year as he was approaching the end of his life. He too has advanced COPD, and other associated issues. We too were largely unsupported by the NHS professionals after his last spell in hospital for pneumonia and it was extremely traumatic, not to mention frustrating.

I do hope that you can manage to get his pain relief sorted out soon. It is very distressing all around.

I think you should consider lodging a complaint about those two carers if and when you feel able to face doing so. Having a row in your Dad's room was extremely unprofessional and unhelpful.

I have been there. My DP died at home. It wasn't kind or dignified. It wasnt what my DP meant when they asked to die at home. The reality is very very difficult.

Talk to the experienced professionals tomorrow. They will not advise you but I found they will answer direct blunt questions. It is not a time to be decorous or polite. Tell them your fears. What will happen when the pain gets worse? Who do you ring for help? How long do you wait for it? Who will sit beside your Dad while you sleep? Make sure they know your carer does not have end of life experience. That is important. She should have shadowed another carer before being left solo.

I wish I had fought for a hospice place. They are designed for exactly this, dealing with the physical burden while you deal with the emotional one. You say you are unsupported by the experts. This is where you will find them. They can regularly move your Dad to ease the pressure sores, pain relief can be monitored and adjusted without waiting endless hours.

If the assessment recommends hospice care you should know that you have tried to respect your Dads wishes. You have had him home for as long as you could. If you want to go against him now its ok. The greatest kindness left to give your Dad is pain relief and a peaceful death. You have tried but its not fitting together in the circumstances that currently exist around you. Wishes dont matter now, only the reality of here and now, hour by hour. Speak to the assessment team and look for the most supported treatment. You are going to need good, reliable support. Know that if you decide the hospice then you do it out of love, because you want to help his pain, and dont let yourself feel guilty. These are such difficult decisions and they can resonate for years. Any choice you make will only be the lesser of two evils. Stay at home but maybe struggle with pain relief, go to hospice for pain relief but then you’re not at home. I suggest you focus on what you can do to keep your Dad comfortable and compare your choices on that basis.
Take care OP, our thoughts are with you

Keep calling 111 or 999 for additional pain relief if needed. An ambulance will come out to assist you. He should be sleeping peacefully if the pain relief is adequate. I hope the hospice can help you.

Totally agree with what @rainbowmantis says....placing your Dad in a hospice may be the last and greatest gift you could have given him....
A 'Good' death.... and that is what the hospice is expert in...

Do you have access to Macmillan nurses? If yes, they are able to prescribe and deliver morphine, so call them now. We only discovered this after my mother died and it is the one thing that I always tell people who have friends and relatives with a terminal diagnosis.

So, we now are on top of his pain meds, they also increased an anti anxiety and added another. He is unconscious all the time, he hasn’t moved at all, not made a sound or wriggled away from any injections. He was rattling last night, so nurses came out and gave him a mucus reducing injection, and again today. He now squeaks with every breath, we are now just waiting for the inevitable, but he is stubborn to the end. An emergency nurse told me that this could go on for days, I so hope not for his sake. A week of none or very little sleep, meant I kind of hit a wall this morning and I slept deeply. We have returned home to bath and chill for a bit, I bid him goodbye before I left just in case.

I do feel that we are managing his care far more. Have an amazing carer, who is looking after all of us.

I just hope he passes soon for his sake.

I am proud to be his daughter for the battle he has fought, but it really is time for him to reunite with my mum, in peace and pain free.

Thankyou to everyone that have responded to this post, it is a big comfort

Ahh you poor thing, this is just the most horrible thing to go through. Sending big hugs.

So sorry you are going through this. My dad died on Friday afternoon, also cancer. All I have to offer is that we managed to get him a room at a hospice and they were amazing. His care was personal and he was kept comfortable until the very end, plus we were allowed (my mum, brother and I) to stay with him constantly. All of the staff were so sweet and caring. I would recommend a hospice if you can get him a bed. Sending love x