Struggling

[Drew]

Hello all,

I'm sorry to introduce myself on such a downbeat note, but I'm having a few problems and not sure which way to turn. I hope the following makes sense, as it's a bit complex.

Background is: my wife has been diagnosed with a few serious - and incurable - genetic conditions; I'm not going to bother you all with the details, but suffice to say she's had to give up her work and now receives higher rate DLA (both care and mobility) as well as support group ESA. Until everything fell off a cliff about 2 years ago, she was working and I still am. We are both in our (late!) 30s.

I'm not quite sure what result I expect from posting this, but to be honest I am struggling right now to be able to keep working and support my wife. She is currently under the care of a number of consultants (most in London, due to the rarity of her condition) and also wheelchair-bound. We live on the South Coast, so getting to the appointments is not something she can do without my taking a day off work.

I've no complaints about the NHS, who have been fantastic in looking after her care, but we do have a lot of appointments - I've done a quick count and we actually had 8 in the last 4 weeks, and that's pretty average for the last few months, which has lead to a few few challenges work-wise for me, as 2 days off per week is not easy.

Anyway, I'm not quite sure why I am writing this post - any light at the end of the tunnel seems to just be an oncoming train!- but my wife is doing a brilliant job of coping. I can't admit it to her, but I am not. We've no-one local who can help me out (both our parents live miles away, and our nice neighbour has developed their own health issues recently).

Anyway - just wanted to say hi - I know people on this forum have far worse problems, but thanks letting me vent.

Cheers

Drew

[Koala]

Hi and welcome, Drew. Vent all you like, that's what the forum is for.

I'm in Oz so I'm afraid I have no ideas to suggest to help you, but someone will turn up soon who can give some good advice.

[SheWolf]

Drew,

Welcome to the forum. You've come to the right place to get moral support and hopefully lots of ideas about how to make life a little easier for you both.

I'm sorry to hear about the cards that life has dealt you - it sounds like you've both been under quite a strain for the last couple of years. You say that your wife's conditions are incurable, so I'm guessing that the medics are trying to find ways of helping her live with the conditions? Maybe this involves trying out various drugs until you find the right combination? All very trying, without the added factor of travelling up to London twice a week.

My only suggestion is that you could ask your consultants to try to offer you appointments on the same day each week, or at least two consecutive days running (enabling you to stay overnight) so that you don't have to make the trip twice each week. This simple idea may blow their minds when you suggest it, as often consultants live in a world of their own and are too busy to think of the practical problems which their patients are facing. Bear in mind that many consultants leave the appointments in the hands of secretaries, so you may have to lay things on the line with them as well - be completely honest and say you realise that normally patients can't dictate their appt times, but you are feeling the strain and would really appreciate it if they can cut you some slack.

I think you've done well to put on a brave face for your wife - maybe she is doing the same thing? Do you think you would both benefit from having an honest talk about how you're both feeling? Tears may come, on both sides, but that can be a useful release valve.

As for the worries of holding down a job, I think most employers try to accommodate carers who have dependents, as far as they are able, but they may not be willing to let the situation ride indefinitely. If these frequent appointments are going to go on into the future, would it be possible to reduce your hours to work a 3 or 4 day week? Money would be tight, but it's one possible solution that would seem fair to both you and your employer.

[no1mum]

Hi Drew and a warm welcome to the forum, there's plenty of support and advice to be found on the forum, I think just knowing you're not alone in your struggles can be a bit of a help.

[Brindleboy123]

Hi Drew, welcome to the forum. I'm sorry that things have become so difficult lately for you both. Caring isn't always easy and when you are trying to hold down a job too it is doubly so.

We may not have all the answers but often members have experienced similar situations and can offer advice. We will all try to offer support and sometimes it's just good to have somewhere to go that you can let out your feelings or worries.

good to have you here.

Bell x

[crocus]

Hi drew
Your post rang a lot of bells with me
Hubby and I were in our 30s and we were both working when hubby had a road accident and the bottom fell out of our world. He too is being seen in London (The National Neurological Hospital), we too live on the south coast and I agree - its a pain to get to and takes all day to get there and back. We have much fewer appointments there now, however, so it is not so bad.

That was 20 years ago, long story short. Hubby was medically retired and hasnt worked since. I burnt out and lost my job. We were lucky and could downsize (I know most people are not in a position to do this), so I claimed carers allowance and worked as a dinnerlady and hubby had a small pension. It was quite a cultural shock, but we managed. Once the children were older I returned to full-time work, but it is very hard to work full-time and care, so I reduced my hours to part-time which seems to be working OK at the moment.

My biggest mistake was trying to be superwoman and doing everything to try and keep up as we were before, which is just not possible. Please dont make the same mistake.

[Elsa]

Hi Drew and welcome to the forum. I'me with no1mum when she says just knowing you can come on here and it helps to know you are not on your own is a big help. I do hope that things get better for you and your wife soon.
Elsa

[Tillymint]

Welcome to the forum Drew. Its very difficult when you feel you are having to cope on your own. Hopefully now you have found the forum you won't feel quite so alone. Even you a fan of facebook it might be worth browsing some of the carers groups on there too. Is there a carers support service in your local area - they might have carers groups where you could meet other people in a similar position to you x

[Drew]

Many many thanks to everyone who replied, and sorry for the delay.

I'd love to be able to combine appointments, but they are all at different NHS London trusts; we currently see consultants at St Mary's (urology), Bart's (gastro), St Thomas's (lupus), Royal Free (immunology), UCLH (rheumatology) & St Charlotte's (gynae). As they are all specialists in the conditions (professors - whoo..!) we can't change to anyone else - they all refer to each other and no-one else. We then have the GP consults every month to catch up on letters plus the local hospital services (monthly bloods, cardiology, physio, OT, podiatry). We can't combine appointments because the clinics run late (we have to wait for the profs as they won't let us see other clinic members); even if they were on time, the combined time would be too much for my wife - she'd have to take so much oramorph to survive that she'd be incoherent at the second consult. Her repeat prescription list now runs to 5 pages

I'd love to hope it will get better but it's been 3 years with this bunch (6 years since symptoms started) and the number of consultants just expands as they do further operations and discover something else. I also can't combine consults over several days as we have cats - and looking after them is one of the few things keeping us both sane! - so need to get home because I'm not going to stuff them in the cattery every week. At least we haven't got children.

Work-wise, I am lucky in that my employer has been very understanding over the past few years. Fortunately, they are based in the US, so I can catch up with work after hours (when they are awake) or over the weekend - it's not great, but acceptable to them, although increasingly less so. After doing this for a few years I am frankly knackered though, and that is impacting on my work and honestly - my relationship with my wife. I can't reduce the hours beyond what I already do, and a quick calculation shows that current trips up to London cost about £6k p/a in train fares and taxis (can't get a wheelchair on the tube). So reducing hours is not an option: also, I work in a fairly specialist job so I can't move more locally.

aaargh - I am venting again and I meant this post to be a thanks to all the replies. Sorry. I'd love someone to be able to come with a solution, but I know it's not going to happen. I'd like to say thanks for the support - I have no other outlet as I do nothing but work, sleep and visit consultants. So it is very much appreciated.

Drew

[bowlingbun]

Drew, what are Social Services doing for you?