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New Here - 10/07/2018 - Carers UK Forum

New Here - 10/07/2018

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Hi all,
I have just joined today for some advice regarding my wife and her long term care.
We live in Herefordshire and last October she was diagnosed with primary breast cancer, with metastatic bone cancer. Following a short burst of radiotherapy in early January, she was then hospitalised for 8 days with abdominal sepsis and the following 8 weeks or so were a slow recovery - some good news though, we did get married in May!
Anyway, she is now at the stage where she is starting to have some minor mobility issues, mailny lymphodema in her legs and also some issue with her hip joints, so i am considering giving up full time work and becoming her carer full time. We have looked into what we can claim, and as she is getting PIP, then i should be able to get carers allowance (not much i know) and as we are in a universal credit area we can claim that as well (plus the housing and council tax benefit) - 2 of the calculators have both given the same result, in that we would not be any worse off by too much, so it does look viable.
Anyway, probably waffled a bit too much for a first post, so that's it for now.
Hi Alan and welcome.
It certainly seems you have done your financial homework, however lots of us would caution against giving up work to become a carer, and the reasons a non-financial.
You need to think long and hard about the following:
Caring can be very isolating, especially if the caree's needs are likely to rise
Work gives a sense of self worth, caring often doesn't
Work gives social interaction and a life/interests outside the home
Caring kills social life and friendships
Work provides a route to the rest of your life when caring stops. Many carers find it impossible to get back into work. Their previous experience and qualification seem to carry no weight and caring is seen as "disrespectful" and employers are wary of employing in case the carer needs or wants to break to care again.

Before making any decision we would recommend that you get a Needs Assessment for your wife and a Carers assessment for yourself. You have to be assertive and make sure these happen. They should result in SS or CHC payments being made available so outside help can be provided to enable you to go to work. The benefit of this is that they should rise as your wife's needs do, and believe me, there's nothing worse than being the sole carer when the workload gets bigger and bigger 24/7 and there is no respite. It's far easier to get these in place BEFORE that situation arises.

It's not being unfeeling to not be the main carer. Far better you become ' the care manager ' and retain your links with the outside world for as long as possible.

My only other thought, and forgive me if I have kept to wrong conclusions, is that if your wife's illness is terminal and likely to be short term, then maybe your employer would consider either part time or some kind of career break so that you maintain links with work.

Hope some of this helps
Hi and welcome - I'm so sorry to hear about your wife. That said, the medics attitudes towards metastatic cancer has changed enormously, and now patients are far less likely to be 'written off'. Instead, the metastatic stage is treated aggressively, ie, with a view to maximising lifespan, maximising 'outward health' and in short seeking to regard incurable cancer as 'manageable' on an ongoing basis. The idea is to use all effective treatments as sequential 'stepping stones' such that patients use one till it becomes ineffective, then move on to the next one, and the next, and thus simply 'keep going' FAR longer than used to be assumed was possible.

She will also find that having metastatic BC puts her in a totally different 'category' of BC patient, and those m-BC patients I know rather regard the primary-BC patients as something akin to GCSE students, whereas they are the A-level ones! It means that a huge amount of the 'support' out there, eg, via support groups, carers groups, patient groups etc that are focussed on primary-BC patients are just totally inappropriate now for her - she has gone WAY beyond them, and they are just 'infants' compared with her. There's a HUGE 'disjunct' between patients with primary/curable cancer of any type, and those who are really 'up against it' with m-cancer. It's like living in a different world....

I'm probably going to take a slightly different attitude to Mrs A re the giving up your work. Though mostly I would agree with the warning, I personally would say that when the T-word comes into your life your priorities change totally. When my husband was diagnosed terminal some years ago, I was SO glad I'd been made redundant the year before! It meant I could totally focus on my husband AND ensure that we did EVERYTHIGN we could, and maxed out our time together. Work seemed utterly irrelevant. It was about US then, as a family - making the most of him while we had him. In retrospect now, as a widow, I would not have had it otherwise for all the treasures in the world! Nothing can take that priceless 'last time with him' away from me and our son, and I can well, well understand if you take the same viewpoint. (Yes, we were fortunately, financially I could afford not to do paid work, and for that I was for ever grateful.)

I wish you both all the very best possible - do, I would urge, keep on top of (oh dear, nearly said 'abreast'!) of ALL the latest research for her type of BC, and thereby ensure that you are as fully informed as her oncologist on what new treatments are coming out of the medical trials, and do keep a look out for what is going on in the USA for patients, as often they (or rather the ones rich enough to pay!) get the most modern treatments first, long before we in the UK get them.

Kindest wishes at such a time as this for you, Jenny
Hi Alan, welcome to the forum.
What outside support, if any, is your wife getting at the moment? From hospital, hospice, MacMillan, Social Services?
If it would be easier for your wife to have a hospital adjustable bed at any stage, the GP should be able to arrange that quickly.
There are many advantages, and disadvantages, of giving up work. What sort of work do you do? Could you get another job easily at a later time? I'm a widow, and it took me ages to "think straight" after my husband died suddenly, it would have been easier if I had workmates to support me, but my husband and I ran an engineering business, just the two of us.
I would therefore suggest a sort of "half way house". That you reduced your hours, maybe worked 3 or 4 days a week, if that's possible. You might be able to get Working Tax Credits. Carers UK has a brilliant advice service, email them, the phone is always busy, and they will get back to you, usually within a week.
Your wife needs to get used to others providing some personal care, so that you maintain your relationship.
If there is anything you feel you need help with, feel free to ask.