Scared and feeling alone

Hello; my name is Loz. I've come here in the hope that talking to someone about what I'm going through will help, because right now I'm falling apart :cry: I'm sorry if I'm not meant to post this here, but as it's my first post on the forum I didn't really know where else to put it, so if it's in the wrong place I apologise. 

This is a long story, but I'll try and keep it as brief as possible. 

Basically my Dad has been ill for around two years now. It started with pain in his kidneys and blood in his urine, and this was constantly being diagnosed as a kidney infection by his doctor. Dad would take antibiotics, things would clear up for a few weeks and then it would come back again. The doctor went from one diagnosis to another (infection, kidney stones, etc.) and would keep sending my dad for ultrasounds, CT scans and biopsies, all of which either found nothing or were inconclusive. But we were told at one point it was almost certainly not cancer. Fast forward to a year later, when Dad was still getting pain and blood in hs urine and it was getting progressively worse, and the doctor finally sent him for a PET scan. This showed a shadow on his kidney, which took another two months to be diagnosed as a tumour. The doctor then said the best course of action would be to remove the kidney and any cancerous lymph nodes surroundng it. 

So Dad had his kidney removed in April this year (2018), and although he was in intensive care for a few days after due to there being more blood loss than was expected during the op, everything seemed to be going well. The consultant said they'd removed the kidney containing the tumour as well as a few cancerous lymph nodes; however he did say they couldn't remove all of them as it was more dangerous to do that than to leave them in, and as a result there was a chance the cancer could still spread. But dad was slowly recovering and after a week he was discharged from hospital. 

The following morning, he had a stroke and was instantly readmitted to hospital. He'd lost the use of his left arm and leg, but otherwise was fine; his speech and mental ability weren't affected at all. So, counting my lucky stars, I headed home and trusted he would be okay in hospital. 

Later that same night, he had a cardiac arrest. It took them fifteen minutes to resuscitate him and he was taken immediately to intensive care, put on a ventilator and kept sedated. The doctors told us that after the op, a blood clot had formed in his leg and travelled up to his brain and lungs, which was what had caused the stroke and cardiac arrest. He was in intensive care for a week, then moved on to a stroke ward for another two weeks, and then spent a month or so in a stroke rehabilitation hospital. But eventually he was allowed to come home, and he's been home now for a month or so. 

In that time, we've been told that his cancer has spread, and last week we were given the news that he has between 3-6 months left to live :cry::cry::cry: He's taken the news quite calmly, and is of the opinion that if it's going to happen, it's going to happen and there's nothing we can do except make these last few months happy ones. But I'm devastated and terrified of what will happen when the time comes. :( It's just me and him at home; my parents divorced ten years ago and I have no contact with my mother, and my only brother lives about two hours away and can't get home very often. Dad has six brothers and sisters, most of whom have offered to help when and where they can, but I still feel so alone in this because no one understands what he's like when it's just the two of us. He isn't very mobile due to his stroke; he's lost so much weight over the last few months that he's as weak as a kitten, and he's constantly complaining of his pain. The doctor has given him morphine, tramadol and paracetamol, which is helping a lot with the pain, but it's leaving him very confused and out of it; he constantly talks to himself and is forgetting things like what day it is or the fact that he's divorced from my mum; it also makes him say things I know he doesn't mean, but it's so hard to hear. I'm just so worried about leaving him alone when I go to work or I have to get the food shopping; he takes a lot of medication and I don't know how much longer I can trust that he knows what he's doing with it. 

I'm also terrified of what will happen when he passes away; I know the house is going to be shared between me and my brother so I don't have to worry about that, but it's the paperwork and official stuff that scares me. I have absolutely no idea in the slightest what any of it means or what I have to do when; I just feel like I can't face any of it but I'm the one people will be expecting to have everything in control as I was the one living with him. 

Just feel so utterly helpless and upset for Dad too; it's so cruel that in the past year, he's had a kidney removal, stroke and cardiac arrest and come through them all, only for his cancer to rob him of his life anyway; it's not fair :( 

Any help or support anyone can give me is very much appreciated and thank you so much for taking the time to read this.

Loz.

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    Hi Loz,

    You have posted in exactly the right place, so nothing to worry about there.

    What an awful time you and your dad have been going through. It really has been a case of one thing following another. Looking after your dad on your own is an awful lot to ask. Although you feel that his family don’t really know what is involved in looking after him, you should take any help that is offered. This would be useful for you, even if only to allow you out to do your weekly shopping.

    If you still find things difficult even with some help, have a word with his GP as he could have the district nurse coming in to see that he takes his medication and carers to wash and dress him. This is usually arranged through a social worker and I’m sure that your GP could arrange this. It depends upon his actual needs as to how often the carers come in, but it can be 3-4 times a day if needed. This is free of charge.

    Have you spoken to your brother about the paperwork that is worrying you so much? Even if he is living 2 hours away, it sounds as if he needs to help you out more and give you some support. Would he be willing to look through the paperwork now and make sure that it is all in order before your dad passes? There is still time to sort out anything that needs to be changed.

    Do either you or your brother have Power of Attorney for your dad? This allows you to do things for him if he is not able to do all that he once was. This has to be arranged via a solicitor, but it is handy to have in place for things like dealing with household or banking matters. Power of Attorney dies with your dad, but might ease things for you both in the meantime.

    Another thing to consider, if you haven’t already done so is a DNR. This is a document stating that in the case of your dad taking more punishment to his health, his care teams are not to struggle to resuscitate him. This doesn’t mean leaving him to die. It means not using extreme measures to keep him alive if, Heaven forbid, he takes another stroke or cardiac arrest and is left even more debilitated than he is at present. His GP or district nurse should be able to facilitate this for you. Having said all this, this is not something that you have to do. You have the choice and it is always a hard one to decide.

    I am sorry to be so blunt about these services, but many people only hear about them after a loved one’s death, when it is too late.

    Do please stay in touch and remember that we are always here for you.

    Thinking of and praying for you both.

    Kind regards,

    Jolamine xx

  • Hello so sorry to hear of you problems & wish I had the words to say to make things better.

    Jolamine is giving the best advice I can think of.

    But I send a big hug & best wishes x

  • Thank you both for your replies. I forgot to mention that Dad has been referred to Loros and Macmillan; they've both arranged appointments to see him on Friday and next Monday, so hopefully something will be sorted then with regards a carer coming in. I'm not expecting much though because we had carers coming twice a day after he had the stroke, and they barely did anything :( Also, he's been referred to the District Nurse in case his pain gets too bad; we're supposed to call her and she will come and give him an injection. As for my brother, he's coming to visit on Saturday, so Dad wants to leave the majority of paperwork talk until then so he can speak to us both, but I'm just worried that he won't be lucid enough to do it then. I've tried to research what it is that I'll have to do, as we're both currently executors of the will, but it's just so much and so confusing. My aunt was the executor for both my grandparents when they died though, so she's offered to do it if we can get the will changed, or at least she'll be able to help me, hopefully. Neither of us has Power of Attorney, but Dad is talking about doing things like changing his bank account to make it a joint one between me and him, so I'll be able to access any money I need straight away after he's gone. I don't know about the DNR thing; they asked me about that when he was in intensive care after the cardiac arrest and I refused, because I was sure he'd want them to do everything they could. But now I don't know; he's always said he doesn't want to end up in a state where he can barely do anything for himself, so I think I would have to consider the situation he was in if I was asked about that again. Thank you for all your lovely and thoughtful advice xx
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    Hi Loz,

    I am glad that Macmillan and Loros are both coming out to see you and your dad this week. Don’t forget to tell them exactly how difficult you are finding it to care for your dad since he had his stroke and cardiac arrest. The change in his temperament is normal in these circumstances. My hubby is the same since he took a stroke after his quadruple by-pass 10 years ago. It is so difficult and upsetting to bear the brunt of his frustrations as his nearest and dearest, but this is a total change from his previous laid back demeanour.

    It would make some difference to you if you had a spell throughout the day where you could get out and do your weekly shopping. Even without carers, this is the sort of thing that his family members could do.

    I sincerely hope that your dad is having one of his more lucid days, when your brother comes up at the weekend. If not, you’ll just have to wait until one of his better days, when you can discuss your concerns with him. Being an Executor of a will is an important role, but it will be so much easier if you have everything in order before he passes. You still have time to do this before your dad passes.

    It is a good idea to get a joint bank account with your dad if you want access to his account after he passes. The DNR seems an awful thing to have the responsibility to do on someone else’s behalf. Your dad has been lucky that his speech and mental capacity are still there, but would he want to be revived only to live in a vegetative state? Have a discussion with your brother about this. You don’t need to wait to be asked again by one of his care team. You can arrange this very easily via his Gp or nurse.

    Thinking of you all.

    Kind regards,

    Jolamine xx

  • Thanks Jolamine. 

    I really want to talk to Macmillan about how tough things are, but as we only live in a small house and Dad will be able to hear what I say in every room, I won't be able to say anything to them without him overhearing, and I don't want that. I'm hoping they come when he's asleep so perhaps I can have a quick word with them before he wakes up, maybe. 

    He's gotten worse over the last day or so; he's rarely lucid enough now for a proper conversation and I'm worried we won't be able to get the bank account sorted before he passes away. I'd do it myself if I could, but I think you have to actually visit the bank and Dad would need to come with me, which is almost impossible as our nearest branch is about half an hour away by bus and then a ten minute walk, which Dad wouldn't be able to manage :( 

     

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    Hi Loz,

    If you were internet bankers this would be easier by BACS transfer, but I presume that you're not. The only other way that I can think of to get around this is for your dad to give you a cheque of sufficient value to cover the initial expenses after he's gone. If he could sign his name on the cheque you could then put it into your own account, but you would need to do this before he passes. Perhaps you and your brother could sort this out when he is with you on Saturday? - it's going to be a busy day for all of you!

    With Macmillan. Could you write down how hard things are? You could give this to the person who visits you at the beginning or end when you are seeing them in or off. If your dad is asleep when they come you don't need to give it to them, but if talking is difficult, at least they'll have your concerns to address.

    Sorry, two unconventional approaches I know, but there's a way around most problems.

    Regards,

    Jolamine xx

     


  • Hi Loz,

    I haven't heard from you for a while and I was just wondering how you got on last weekend? It would be good to hear from you if you get the time.

    Kind regards,

    Jolamine xx