Giving up driving...: Hi I just needed... - British Liver Trust

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Giving up driving...

RustyTractor profile image
31 Replies

Hi I just needed to vent a bit and ask for advice on how to handle something. My husband has decompensated alcohol related liver disease. Cirrhosis, regularly gets new varices banded etc. He has been seen by the QE transplant team but his UKELD score is only 52 so they aren't assessing him yet and anyway he isn't in good enough physical condition - needs to sort that out first, which I think is unlikely as he won't really do any exercise.

But the thing I am battling with at the moment is he is not driving, which is the right thing to do, as he is on rifaximin for HE, and hasn't driven since his haemorrhage last December. The QE consultant said he shouldn't drive again while on it. Which I understand. He still has some cognitive confusion, so would be worse if off it. And I get that the HE won't improve unless his liver does... which seems unlikely.

But he won't sell his car. It hasn't moved in all that time. Sat on the drive and now won't start. So he plans the get the garage chaps to come sort it out, MOT it etc. And of course its insured. And because he isn't working, effectively I am paying for all of this. I have my own car which I use to drive him to all his appointments.

Does anyone who has been in a similar position or can get into this mindset have any advice on how I can persuade him that he needs to let go?

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RustyTractor
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31 Replies
Lippy42 profile image
Lippy42

ste hasn't drove for same reason maybe if you suggest selling it as it's losing value sat on the front and once his health improves look forward to getting something else new car fresh start .. it's easy said than done ste had his own car but it annoyed him seeing it there so selling it was something he wanted to do good luck hope he can let go soon if its becoming a money pit

RustyTractor profile image
RustyTractor in reply to Lippy42

I think he thinks it would cost too much to get the same car again if you see what I mean. Its a big Merc. Like when you have get insurance write off value, you don't get enough money to replace what you had.... But "money pit" is deffo the way to go especially if they have to do a lot to it to get it going. It will be seizing up I'm sure.

Lippy42 profile image
Lippy42 in reply to RustyTractor

just another thing we have to cope with added to the list we need a new group for all the partners out there 😜 I sat in the QE the last time we went and looked at everyone in clinic thinking I wonder if any one of you are on this group if we have ever chatted vented to yet we all her sat like strangers

AyrshireK profile image
AyrshireK

He/you don't know how long his inability to drive will last - so the car could technically be sitting on the drive for years. My hubby went on Rifaximin in 2014 & is still on it. Hubby gave up driving himself in 2012 at time of first diagnosis because he knew he lacked concentration, is slow in movement and just knew he would be dangerous behind the wheel. He had just bought a new van for going camping in when going walking trips and his cirrhosis diagnosis put paid to that so the van went within days of diagnosis.

Katie

RustyTractor profile image
RustyTractor

That's my point Katie, but he just won't accept it. He won't even have a conversation about it. Which is pretty normal for him to be fair. Closes down any conversation he doesn't like. I guess I could try asking 'when do you expect to be able to drive again?'. That may force the issue?

AyrshireK profile image
AyrshireK in reply to RustyTractor

I know that's what you are trying to get through to him. I was just showing how long this can be. It's 10 years since my hubby has been able to drive - that's a hell of a lot of MOT's, Insurance money down the drain. Please feel free to share that info. with your hubby.

Yarkis profile image
Yarkis

I guess you have decide. Do you support your husband who is going through something terrible due to his own terrible decisions, or do YOU let go. I feel like this is a reach for validation but I'll agree that it's somewhat warranted. This forum is riddled with miracles. Hubby might be one. Or, his problem is/was too great for either you. Probably not what you want to hear. Hang in there. I'm sorry this happening to you guys.

nutrimar profile image
nutrimar

Can I offer an opinion from a male perspective? I had to stop driving when I had an episode of HE, I had my own taxi business at the time and it was the hardest thing to do.

Like your hubby, I wanted to keep my car and I had two reasons. Firstly as a reminder that it was my job that was a major contributor in exacerbating my NASH cirrhosis, so it became a point of contact to my past. Secondly, keeping it meant that I had a reason to fight the disease, because I wanted to get behind the wheel as soon as possible after I was well. In other words it became my hope for a better future. It gave me a goal to achieve.

It might be the same for your hubby, so don't force him to give up his hope!

On a more humorous level: never forget that men are natural hoarders 😁😉🤓🤠

RustyTractor profile image
RustyTractor in reply to nutrimar

Thought I had replied but can't see it... Yes, I understand this mindset, and is the reason I haven't pushed too far. However he is not much of a fighter thus far. He does well with his protein intake but otherwise is stuck to the sofa, not pushing himself to do the other things he has been advised to do.

Readlots profile image
Readlots

could you SORN it so that you don’t have to tax it and could reduce the insurance? That way he still has it but you don’t have the costs?

RustyTractor profile image
RustyTractor in reply to Readlots

I've raised this point several times but he refuses to SORN it either!

Positive001 profile image
Positive001 in reply to RustyTractor

Personally I think he is being very selfish. He's made himself ill therefore doesn't work, doing nothing with his time to help his condition, you're working and paying all the bills presumably, caring for him and running him to all his appointments. So what right does he have to dictate to you regarding SORNing his car. I think it would be the perfect opportunity to bargain with him, put your foot down and tell him to SORN the car until he helps you out, takes control of his condition, gets exercising and improve his health until he is fit enough to drive again. Give him that goal to work towards. You are being very tolerant. When l was in your situation l sold my husband's car no messing. He was too much of a risk to be on the road.

Readlots profile image
Readlots

Oh dear… Is he entitled to any additional disability benefits that might cover the cost of keeping it? Citizens advice might be able to help with that.

RustyTractor profile image
RustyTractor in reply to Readlots

Good point, to be honest we haven't looked into that, he has a small private pension that has already kicked in and I'm employed so we are ok financially really, I'm just resentful if you can understand that?

Readlots profile image
Readlots in reply to RustyTractor

Absolutely! But honestly it’s worth looking into PIP and any other help you can get so that you feel as if he’s contributing and it’s not all on your shoulders. Your grieving the life you and your husband had and anger is a normal part of that process.

RustyTractor profile image
RustyTractor in reply to Readlots

Thanks, yes I will get him to look into it, I am certainly resentful of his loss of independence and reliance on me to take him to his appointments and on his once a week trip out of the house to the supermarket. I have no desire to go anywhere else with him for pleasure.

KulG20 profile image
KulG20

Decomensted without HE is borderline

There may still be a risk of variceal bleed at any moment

However HE then shouldn’t drive at all?

RustyTractor profile image
RustyTractor in reply to KulG20

Yes his consultant was quite clear that anyone treated with Rfaximin for HE should not be driving at all.

KulG20 profile image
KulG20

the other thing to consider in it’s hard to recover if everyone tells you you are no good anymore. I had that when I did everything for everyone then had a blip in my life. People forget very easily and your own life is only worth it if you are proud of something.

RustyTractor profile image
RustyTractor in reply to KulG20

Thank you that is a really helpful perspective.

Oldbits profile image
Oldbits

my hubby was banned from driving (drink driving) he was decompensated and had been advised not to drive but still did it. His ukeld was 54. He agreed to changing the insurance so I drive his car once a week to keep it going. His car is his love and joy and one of the few things he had control over when everything else was going wrong. As you say his car was also worth more as a part exchange so selling it wouldn't have made much money. The insurance company protected his no claims and took him off the policy. If you feel up to driving his car maybe that would be a solution. Good luck

RustyTractor profile image
RustyTractor in reply to Oldbits

I am insured on it already and have offered to drive it but he didn't seem bothered and said it was fine just sat on the drive. I prefer to drive my own car and I'm not going to put myself out for him, I just want the thing gone and not to have to pay for it out of my earnings.

Oldbits profile image
Oldbits

thats a shame he didnt seem bothered and very frustrating for you. Maybe when they give him a quote for repairs ask them for a valuation at the same time? And show him the quotes.

I know it's hard to get them to think logically, especially when they feel they have no control over their lives and this is one of the few things they can make a decision on. Also I found with my husband he didnt believe (or didnt want to believe) anything I said but maybe seeing it written down might make him think about it as it will be someone else's view.

Since my old man has turned a corner and now compensated he actually cant remember anything from the last years battles and arguments, (but I can!)

good luck

redpoint72 profile image
redpoint72

hell love.

My experience was similar,with my lovely dad,who we lost earlier this year...he suffered with Parkinson's disease...its myself with liver cirrhosis. He realised that he couldn't drive any more....so the car stood on the driveway.....I got dad to surrender his license....but the car remained.....I understandh how frustrating it is for you,I really do. But ,my dad had a cousin with whom he was close,and a similar age...I said to dads cousin, boutthe car situation...he saidleave it with me.....to my surprise...2 days later,after meeting with his cousin,dad said to me,could I sell it for him.....I still don't know what was said between them...to this day.....but what I had been trying do for months, happened in 2 days!!!. . But I so felt for my dad.....he had always liked his cars....when it got drove away...he had tears in his eyes....and said that's it for me now😔. That was his last bit of independence gone....and that must be very hard.

sorry love,that doesn't help at all does it!!.

I hope you manage to find a way forward.my best.chris

RustyTractor profile image
RustyTractor in reply to redpoint72

Awww thank you Chris and I'm so sorry for your loss. Yes I did go through something similar with my mum, her car sat outside her house for six months after a bit of an episode as she was developing dementia, and we were saying 'maybe you can drive again when you are a bit better' knowing full well she wouldn't and we had her keys. Eventually we braved up to the conversation. And for the next few years she still kept asking to have a car again!

RustyTractor profile image
RustyTractor

From everyone's stories I am definitely starting to understand more about the psychological impact this must be having and while I am extremely frustrated about it all, I guess a glimmer of compassion is needed here. I do tend to see things in black and white, which is not helpful some of the time.

In other news though, he has agreed to look at whether he can claim any benefits, in fact he said he had researched it yesterday and thinks he may be entitled to about £39 a week ESA, which is exactly what I had calculated too!. Would be great if its backdated!

Thanks everyone.

AyrshireK profile image
AyrshireK in reply to RustyTractor

Personal Independence Payment is probably something he can claim too which depending on his level of support need can amount over £400 a month. See the post from Rshc earlier today for some guidance I put on that thread.

Katie

RustyTractor profile image
RustyTractor in reply to AyrshireK

Thanks Katie yes I saw that, you are always so generous and detailed with your advice. We will look at that. Although he's able to look after himself while I'm away for work a couple of days a week though so apart from needing to be taken to appointments and advocate for him, and needing me to make some phone calls for him as he can't process information he is given, he's pretty good at looking after himself. So I don't think he would qualify. His pensions kick in Jan 2024 as well so we are ok really.

AyrshireK profile image
AyrshireK in reply to RustyTractor

If you manage to get a PIP award before 2024 it would continue once his pension starts so worth maybe considering an application.

Roy1955 profile image
Roy1955

If the car goes he will see it as another nail in his coffin and might just give up the fight!

Let him keep his dreams alive if possible

Gdansk profile image
Gdansk

Men and cars...and guitars.Fully understand your frustration as my partner was given the decompensated liver diagnosis earlier this year but has only seen the consultant once since hospital discharge as appointments keep being postponed due tothe strikes. Consultant has NOT banned him from driving but said he has a 50% chance of surviving 2 years. Obviously the safety issue with HE for all is of primary importance in terms of him not driving the car but the financial aspect re cost and waste of the resource is annoying to say the least. He is very fortunate that you are so supportive.

Wonder if linking the possibility of being declared fit to drive again might be an encouragement to really give the exercise, diet/nutrition etc. regime a specific focus? It's difficult to stay positive sometimes as a carer but there is always hope.

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