[dickbParticipant]

Although I am not a carer but a 'sufferer' I think it is too easy for some to forget just what the carers have to do and put up with, My wife married me when I was fit, healthy and able to contribute to the bringing up of our daughter and to the household. She now has to deal with an illness that is not hers, the worry of what it will throw up and the future.

It is so hard for all the carers, if others experienced the same as us, it was the carer that had to organise the care and household, had to do the phoning and contacting, has to deal with the bills, earn enough to carry on and still need a normal life of their own.

I wonder whether sometimes the focus is too much on the patient and not on the carer as well, after all I would say they have it far worse in other ways, after all the MM sufferers have medical care and help from all sorts of places, the carer has to carry on as normal and deal with all the awkwardness that caring for a sufferer entails.

I believe a telling measure of just how important the carers are and maybe just how much their role is underestimated is perhaps to ask how many of us would still be here if it wasn't for the carers.

And one final point, the majority of carers will still be around picking up the pieces long after the sufferers have gone.

[PhilipandfionaParticipant]

Hi

I am a carer, and MM wife. I just wanted to say thank you for your kind words.

I started writing a big long reply, but in the end it comes down to – you suffer, we suffer, this is a horrible disease. It helps to have a companion to hold our hands and make us laugh along the way, and i know i couldn't possibly care and support my husband without his care and support right back for me and our family.

[dickbParticipant]

Hi Philipandfiona,

I posted this little piece because I read the posts from carers such as Eve and I also see what pressure and stress my wife is under. We read, we note and we usually talk about the sufferers but no one really talks about how the carers manage. If you read some of the posts written by carers and read between the lines, the worry and strain a number of them are under comes through. Read Eves post "My view on Myeloma" and you get a sense of just how hard things are for a carer. (Sorry Eve, hope you didn't mind me using you as an example).

As I said, the help and the knowledge is there for the inflicted but the carers have just as much if not more mental pain and anguish and perhaps we ought to highlight that as much as MM itself. After all, as I said previously, the suffers will go first in the majority of cases and the carers are left with the anguish.

[PhilipandfionaParticipant]

Hi

Sorry, I really didn't mean to cause offence, if I did.

I am full of admiration at how my husband has coped over the last year since diagnosis. He's had a relatively good journey so far as he is in full remission for now after CTD and SCT. I know I could not have coped as well as I am told i have without him.

And again i'd like to thank you for highlighting carers.

[dickbParticipant]

Perhaps it's me that ought to apologise, you did not cause any offence what so ever, I was just trying to expand on my original post. I don't know how some keep it together.

[eveParticipant]

Hi Dick and Fiona

Thank you for both your comments,this disease is hard on all members of the family. What I was trying to bring out on my previous post,was the silence,when anyone starts out on this roller coaster,everyone has to be optimistic ,there is every thing going for a cure or long remission,as Andy said.

But there comes a time when you realise ,the roller coaster is having more lows,as Sue said another chemo and another chemo,and Slim will be first in the queue waiting,I do not know when carers begin to accept the change,may be because I have immersed myself in a Myeloma Bubble.it has hit home sooner.

I have had private E Mails from people on this site,who understand what I am saying,my problem is most of the people have Myeloma them selves ,carers with the same problems are in short supple.

Dick and Fiona,do not apologise for your thoughts,express them. I did not specially agree with an extra post on Death and Grief,mainly because my thoughts were it isolated these people in death.,but I can understand that people do not want to read what the future holds for them.
As carers we just do the job required ,and saying that after spending all morning with Slim in hospital,they have just rang up,to say he needs potassium tablets right away, potassium is 2.9 ,so 30 mile round trip again for me.Love Eve

[Author]

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