Unofficial carer

All about caring Young adult carers
1

My husband lives with rheumatoid arthritis after being diagnosed 4/5 years ago and while I’ve been with him to tons of appointments with various professionals I’ve only just stumbled upon the information that rheumatoid arthritis shortens your life span by 10-15 years.

I’m just processing this information and feel like an idiot for not realising (or asking) sooner how much this condition will affect our lives more and more in the future, and ultimately steal time from us at the end of our lives. We’re still young, just in our 30s, and I feel like I’m only just coming to terms with what this disease could mean for us. I know that nothing in life is certain, but it makes me feel like I’ve lost a different kind of life. It makes me want to seize opportunities in life, to live it to its fullest. But while I feel like this, my husband is just dealing with and enduring the pain, discomfort and low mood that the condition brings. It feels like he’s just getting through the days and I find myself getting angry at the time we’re losing.

Any advice on balancing empathy with what your caree is experiencing with your own hopes and dreams?

(I should say, I’ve titled this unofficial carer on the basis that my husband works full time, so doesn’t typically depend on me financially. Though, hilariously, he’s not working right now after quitting his second job on the last year… I guess I’m saying I feel like a carer even though I don’t fit the government bill for being one)

2

Hi
While there is an official definition of who may qualify for carers allowance, in reality carers come in many shapes and guises. I for example was carer for my mum before she went into residential Home, but my caring consisted of a weekly visit for shopping and errands. I’m also a carer for my young adult some who has anxiety and depression. Care for him is more emotional support than physical caring. But I most definitely regard myself as a carer in that parts of my life are not just looking after me, they both need me and wouldn’t cope without help.

What you are experiencing is the ambiguous grief, the type of mourning, one goes through when life deviates from the route it was going to take and there is a sadness, a shock, while life adjusts to the new normal. Of course with any sort of deteriorting illness, that new normal will vary as the illness does.

I don’t know anything about RA and its progression, but it does sound to me as though your and hubby paths will diverge at times. He may need quieter slower pace while you zoom off and do the quick and physical things you want to. Then your paths will come back together again. Whether this is by weekly respite, or monthly youll need to think about, but you will have to start thinking of doing soemthings seperately, or adjusting the things you do do to they type of things you can do together.

The best advice I can offer is that you really talk to each other about your feelings and wants. It does sound like your not the sort of person who is happy just to sit and keep him company, and you are young. He probably knows that, but it’s worth a discussion to make sure you are on the same page

Kr

3

Life will take a different path, but it can still be fulfilling, if you and your husband grasp opportunities, and focus on what you CAN do together.

You must accept that he won’t be able to help with lots of things a man would usually do, so don’t kill yourself trying to do everything he used to do, and you used to do, plus appointments.
Streamline your house to minimise housework. Use a dishwasher, a tumble dryer, I call mine my Mechanical Slaves!

Every time you come up against a problem, write it down, then ask us if we had this problem, and how to get round it.

Does he just stay in a mope about what he can’t do? His mental health is every bit as important as his physical health. If his mobility is impaired, are you claiming all the benefits you are entitled to? Does he have a mobility scooter? The seats on these are incredibly comfortable, and it would mean he could get out and about not just to see people, but to help you too.
Does he belong to any clubs and societies where he can be involved in some men’s stuff? If he’s not working, then he could be an invaluable asset to a club to help organise things, for example.

Please don’t think “She doesn’t know what she’s talking about”. I was badly injured in a car accident in 2006, 3 months after I was widowed, virtually unable to walk, with mobility scooter, but still caring for a son with LD and my mum was housebound, on top of that I was running a national lorry club. I now have two knee replacements, so fortunately I can now walk again.

4

Don’t be too ‘downhearted’ by statistics. Remember, they are just ‘averages’, and there is no reason why your husband shouldn’t be on the ‘outlier’ range (ie, ‘top end’ of lifespan).

Also, and this is something I had to take on board myself when my husband was diagnosed with cancer, all the statistics are HISTORICAL.

ie, they reflect, inevitably, what the situation was ‘earlier’. So, if lifespan is reduced by 15-20 years, that must have been derived from at least one generation before, if not earlier, in order for those diagnosed with RA to have lived out their lives and those lives proved to have been ‘shorter than expected’…

BUT, and this is the BIG but…treatments etc will have changed significantly since the generation who died 15-20 years prematurely were originally diagnosed!

Finally, remember that most patients are diagnosed much later in life than your husband, and that, again, may skew the significance of the statistics. Older RA patients may indeed ‘die sooner’ ,but that may be FAR more related to the fact they got RA when old, rather than when young.

Plus, the whole ‘RA leads to premature death’ statement has to be carefully considered. Is it the RA that is killing them prematurely, or co-morbidities. Is RA simply CORRELATED with premature death, rather than CAUSING it. It’s an essential difference, and hard to decipher. For example, there is strong correlation with elderly people breaking a hip, and them dying within two years (or whatever the statistic is)…but the thing is that is a correlation, not a cause. The CAUSE is that there are underlying health problems that cause not just the death within two years but the fragile hip in the first place! ie, the breaking of the hip is a SYMPTOM of underlying fragility that leads to death soon after, not a CAUSE of that death.

All of this boils down to saying that stats are tricky beasts, and we should not be too overly-concerned about them!

Has any doctor explained WHAT it is about RA that CAUSES premature death? What is it that RA is doing to the body to cause it to die before its time???

5

May I also say that one of the MAIN things I discovered when my husband was diagnosed with cancer was that ‘while there is life there is hope’.

This is to say that whatever treatments are available NOW for your husband, many, many more may be coming ‘on stream’ within his lifetime. What is ‘incurable’ now, maybe become ‘curable’.

So, never give up hope! And don’t let him, either.

One way you can both find reassurance and even ‘help’ is by getting involved in RA research, so that you know what trials are going on, where the research is heading, what new ideas are being put forward, what is coming on stream by way of avaialbe treatments etc. I hate to say it, but keep a look out for things that ARE available medically …but are not (yet!) funded by the NHS.

In Cancerworld it is nearly always the case that ‘private patients’ can get drugs and treatments (eg, sophisticated targeted radiotherapy etc) before the pressure on the NHS to fund them builds up.

Never give up on pressurising’ the NHS to fund new treatments. My husband was on a new drug he had to get privately, which is now on the NHS, and this happens time and time and time again - it was endless patient pressure and media coverage that ‘forced’ the NHS to ‘give in’ and fund it.

6

Ps - just a thought, but as your husband is young and pretty fit (ie, can still work, and isn’t too disabled etc by RA), he may well be a ‘prime candidate’ for any new drugs/treatment trials in the offing. One of the things in Cancerworld is that they can’t recruit ‘very infirm’ patients for trials, as their bodies may be too weak to cope with unexpected side effects etc etc. (At the ‘far end’ of the spectrum, however, they sometimes recruit patients to whom a new drug is a ‘last chance’ so they have ‘nothing to lose’)

But you might find that your husband is popular with researchers if he is pretty ‘young and fit’ to withstand any unexpected side effects etc that might be dangerous for older, frailer patients with other health problems as well as RA.

Overall, recruiting to trials can be VERY ‘hard’ for researchers, so good candidates for trials are very popular!!!

7

Having re read your post, can you clarify if he is currently working or not?