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Brand new carer, help! - Carers UK Forum

Brand new carer, help!

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Hello all, I'm a brand new carer for my father who has terminal brain cancer. I was told he would come home from the hospital with ten minutes notice last week.

I'm mainly on here for some advice if possible. Firstly the cancer makes him aggressive at times, particularly when we have the same conversation over and over again. An example is he is obsessed with selling his car, every half hour he will bring it up and every half an hour I will respond that it doesn't need to be sold yet. He gets more and more aggressive and ends up saying some quite hurtful things. How do I avoid the merry go round of having these repetitive conversations?

Secondly time. So most days this week I haven't been able to have a bath until about 4pm as I'm constantly running after him to make sure he hasn't left the house or I'm contacting social services. How do I make time when I get to the point I'm exhausted and end up sleeping as soon as he is off to bed

Thirdly, sorting out his finances. The power of attorney will take six weeks but I'm not sure he will be alive by then..

I can't leave him alone but I need to go out at times to do food shopping or get to the chemist, has anyone got any ideas on support available? The social services say they will provide care assistants to help with washing and dressing but they won't provide sitters. I'm his only child and 4 hours from where I live so don't know anyone near me.

I feel quite guilty as I haven't cried or been upset, mainly because I haven't had the time. Is this a normal feeling?

Finally is there any help around for taxi fares to get him to appointments?
Fidel, welcome to the forum no one wants to be a member of, because no one wants to NEED to be a carer. But here we are, and we have to deal with our situations.

First of all, I'm so sorry that your dad has terminal brain cancer. Is it a recent diagnosis, or have you had time to assimilate? The shock of a terminal diagnosis dreadful - I went through this with my own husband.

I'm sorry that he's been discharged to you at such short notice, and with zero support in place for him other than yourself.

Members here will know what 'the drill' is in terms of getting some support lined up. And also what role something called CHC (Continuing Health Care) should play - this is supplied by the NHS (rather than 'ordinary care' which comes via Social Services, and may well be financially dependent, eg, if your dad has assets or savings worth over £23,500 he will need to pay for any care-workers coming in to support you, UNLESS he is deemed to warrant CHC, in which case that may be 'free' via the NHS, or some of it may be, or the nursing element of it may be.)

Have you been in touch with his GP? There is a 'hospice' team 'out there' somewhere - for my husband when he was discharged from hospital in end-stage (basically, he came home to die - and I was so glad he could die at home rather than hospital) I had a mix of nurses from our local hospice charity, and the district nurse team, who seemed to co-ordinate matters between them (via the GP)

Secondly, what does his oncologist at the hospital think his prognosis is? You say he may not live long enough for PoA to take effect, but do you have any definite 'min-max' from his consultant? That said, they may not know - cancer can be very 'capricious' in many ways, and the rate of deterioration varied. He may hold out for much longer than the docs think, or, conversely, succumb more quickly.

If you haven't already done so, please do check in with the various support charities that apply to brain cancer. Is his cancer primary in the brain (ie, the only tumour) or is it secondary (ie, small tumours that have spread from a different primary elsewhere in the body, over long time)(this was the case with my husband - the cancer had reached his brain already by the time he was diagnosed, so it's not uncommon, alas.)

I ask because the impact on him now may be variable, depending on what sections of his brain are affected, and that may 'present' differently in his behaviour.

May I ask whether he is on any anti-convulsive medication (sadly, brain cancer can sometimes cause epilepsy as a 'side effect'.) I ask because anti-convulsive meds (typically Epinutin)(virulent pink liquid as I recall, but it may be in tablets now) can themselves cause aggression in patients, so I was wondering if that might be a factor for your dad. Or it could be just because the cancer is affecting that 'mood control' part of his brain. (Tumours can swell with fluid, putting pressure on other parts of the brain they are in contact with, and can 'leak' toxins as well.)

In terms of aggression, as well as pain management (if there is any - hope not), it might be that he is prescribed something like diazepam (my husband was on a variant, called Medazolam). It can be given as pills, though it can also be administered straight into the body, via a needle 'left in' the arm that feeds back to a little phial contined in a box that is kept usally under the pillow, or can be carried portably if the patient is mobile still - it's called a syringe driver.) I believe that pain killers like morphine can be administered too. (he shoud not be in pain, even if that means a high dose of morphine!)(sometimes administered with a skin patch to give constant relief, eg, Femantyl).

With brain cancer, he may also be on pills called dex (for short - dexamethasone I think is the full name). These are steroids that help reduce the swelling in the brain, by dispersing the fluid leaking from the tumours.

I'm sort of throwing this all at your head, so apologies. It's a lot to take in and not all of it may be relevant to you and your father.

The most important thing now really is to get carers in to help the daily care burden on you. Someone to 'take your place' when you need to get out, either for things like shopping (you may need home deliveries for him) or just for an essential breather for yourself. A gruelling time is ahead, alas....as you are discovering.

Although your first port of call should be your father's GP, as above, you may simply want, if he can afford it, to phone up a local private care agency, and get a paid care worker to come in for periods. Expect to pay about £20 an hour, but others here will know better. If this is beyond you or your dad, then hopefully SS will step up to the mark and provide free careworkers.

I'll stop now as it's probably too much info.

Kindest wishes, at a horrendously stressful period for you, Jenny
What an awful situation - I'm so sorry.
One member here says that she has been her caree's 'appointee' at the bank, I think. You could try to see if your father's bank will help you without PoA.
I think you should have had help from the hospital for the period following his discharge (sounds like an 'unsafe discharge') even if this is followed by paid workers - paid out of your father's money if he has over a certain amount - but others will know more about this.
Fidel, first a big (((HUG))) as you and dad have completely and utterly been let down by the system. I can't imagine what they were thinking of at the hospital, there is a long list of things they must do before any discharge where the patient is vulnerable. Ring the hospital Chief Executive's office tomorrow, you will probably speak to his Personal Assistant, and really lay it on thick. You need help NOW. He should never have come home without any discussion, they should have done a Continuing Healthcare Checklist Assessment, or made a "fast track" referral as he has so little time left.
Be sure to tell them about his aggressive behaviour, again, they should never have sent him home until this was under control.
Now you have to decide if you want him to end his days in a hospice, or nursing home, or keep him at home. My dad had the most wonderful support from our local hospice, this would definitely be my first choice. Every hospice is different, so find out where your nearest one is tomorrow, and ask for help.
Dad will be entitled to fast track Attendance Allowance - he doesn't need to know you are applying under these circumstances.
There's a lot to think about now (and I'm just about to cook tea right now) but feel free to ask the forum about anything and everything. Maybe write down a list of everything that's worrying you, then put it in order of priority.
Fidel, it's PERFECTLY normal not to 'feel' anything at all right now. You're in shock, and your brain has gone into 'self-preservation' mode. It knows you can't cope with emotion right now. It's a self protective measure.

Emotion will hit at some time, but hopefully, in a way, not yet, because you have things to sort out first.

As for the car, we are always advised her, when it comes to dealing with any 'delusions' (in most cases on this forum caused by dementia, but I would say it applies to your father as well because of his brain cancer), not to 'disagree' with the patient. But to find a way of 'placating' them, and changing the subject (even if they then come back to it repeatedly)

So, rather than saying that his car doesn't need to be sold, just say 'Good idea - we'll do that when you're a bit more settled. We don't want to sell it in a rush for a less than good value price.' Or something like 'Good idea, lets get an idea of what it could fetch. I'll look it up on the internet after supper'. After all, you can go so far as to finding these things out, but not actually selling it. (You've enough to do!).

May I say something you may find a bit weird, but I'll put it forward anyway, just in case. When my husband was sent home from hospital for 'end stage' he was, initially, while he could, very keen on 'keeping going' with various projects he had. He worked in IT, and he wanted to log on to his system, and so on. Now, whether or not he did actually have this particular project going (prior to his hospitalisation), I don't know, but it was noticeable that he kept telling me, when he had his laptop open, that he needed to 'fix the database'. The problem was, he rapidly forgot his password. (Probably just as well - though of course, his office knew the situation with him, so probably wouldn't have let him access anything in his state). So in the end, he let it go, but he did refer to it quite a lot, that something needed to be 'fixed'. And you know, one of the things I wondered was whether in his mental confusion, what he was actually wanting to be 'fixed' was his brain...himself.

So I'm wondering whether your dad's obsession with his car might also be 'psychological' or 'metaphorical' or whatever?? That his car 'symbolises' something very important for him. Maybe, for all we know, his car is his 'cancer' and he's trying to sell it to get rid of it.

The other thing might be that with brain cancer, he's unlikely to be legal to drive any more, so maybe he thinks that's why he has to get rid of the car urgently? Does he tell you why he needs to sell it? Do you think he 'knows' that he is dying? (Sorry, awful, awful to say -but if he does, then selling his car may be part of that dreadful 'Putting your affairs in order' that terminal patients are advised to do....)

Finally, for now, do you have any family or friends that can 'rally round' even if only to be there on the other end of a phone line or text or email? I do very much hope so.

Kindest wishes to you at such a devastating time - Jenny