The invisible carer
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How is your husband?" the woman asked a small smile on her face that doesn't quite meet her eyes
"Fine" I say and a small smile back and off she walks her duty done for the day..
It made me think.
it's hard for the person who's fighting this horrible disease it's not picky who it chooses and who it destroys but there is another side, one that doesn't wish to draw attention as they are just trying to keep going.. I was one of these, my husband was diagnosed on the 3rd of April 2014 and underwent surgery on the 8th of May and until now it's been a difficult road to walk but what of the carer? The hands that sooth, the hands that carry a million things, who's own body and soul is geared to the fight, to get their loved one back... My husband was lucky, we were lucky but now it's the carers turn to deal with the issues that we had put to one side.
Where do we go?..I know this may seem like I'm moaning and I know that some haven't been as fortunate in their fight and they have my upmost sympathies. Despite winning our battle I found myself left with a lot of anger, confusion and no answers forthcoming.
I began to notice that something wasn't right when I was in my local store, it's amazing to see how much people feel they have to talk to you when they know that it's cancer, they tell you about how they have suffered and how they managed but they don't talk about you they talk about your loved one, how are they feeling, how's the hospital going? are they walking yet? and so on, but never in the barrage of questions do they ask how are you?.
I know it's hard for anyone they don't want to talk about themselves but there is a point that you reach that you have to stand there and think what about me?
Once the loved one has won or lost the battle and then your left standing either a survivor or a victim, what happens then?
There is no answer to that question, I found that all the help that is avalible for the sufferer there isn't much for the carer.
We have two small children my son wasn't even a year old when my husband had his op and needed almost 24 hour care for the whole 9 months that he wasn't able to put one foot on the floor without a whole lot of help, he wasn't able to be left alone with our kids because he couldn't get up the see what they wanted to get a cup of tea or even go to the toilet. It's hard for anyone and it's not just the physical issues either, mentally it was almost impossible, to try and manage a household and run the kids back and forth school and after school clubs and they hospital visits and doctor visits and getting the money right and going shopping while leaving the husband alone for a short time was impossible...
We had help from some family and none from others but to me, as soon as you close your front door at that time it's just you only you and you cannot think about yourself just get to the next stage on the road to recovery.
I willingly did what I did and would gladly do it again if need be but now I realise that there is nothing to help the carer we become invisible to all just another background noise for people to look at, a font of information about the illness and the stages your at, what is the doctor saying? and how are the children? and what do they need? but it never once asks if you need anything.
So nearly two years on and things have gotten better my husband is walking better and the cancer is (hopefully) gone and now I find that my own body and mind are in need of help they need the support and general help that is so available to the loved one.
So where do we go what do u do when you need the help??
I tired talking to the doc who gave me some tablets and told me to 'look for help online' as helpful as that is on times unless you have a endless bank account and loads of hours your not gonna get the help you need. Forums are a great resource but don't always have the capacity to deal with person to person, what does that leave??
I'm not writing this to moan or to ***** or say woe is me. I'm just putting this out there to generally ask, to see if anyone else feels like this or is there something or someone else they talked to that would help?
Hi, I'm new here and don't know anyone and have a whole load of issues which make me totally useless right now, but I can still observe and reflect on experience. My job takes me to real people with real problems .....heart-breaking problems like yours which those around don't always see, they see the diagnosis and the immediate illness but not all the tiny branches coming off it. The most used phrase I have used is 'this is a family diagnosis not just an individual one' and it is very true, sadly not everyone sees it that way, unfortunately the worst for it is the medical profession....here you go take a pill you'll live....live with the feeling of isolation and little support. Support is there but when you're turning in circles chasing your tail trying to look after your family you hardly get time to look for it do you...in my opinion it should e given without the need to ask. It isn't just work I have experience with it's on a personal level very close to home so I an honestly say I understand. Not much help I know and it won't help now with what you needed then but I do understand the frustration, anget and upset. Somewhere along the line someone should have offered you a support service , do you have a local walk in , around here we have a place called open minds and they offer help for anyone who needs it whatever the reason, just someone to talk to and they refer to other services if they feel it's needed. It's sad knowing all of those services available weren't offerd to you, even a childrens centre to give the kids some time out and you a break would have been a nice offer even if you didn't access it. I hope things get a little easier for you all, I know it's a long road for a family but with one step at a time and a little support it would make it easier to walk
@welshmumlou and @freesoul7435 I know what your both saying. My hubby had 2 heart attacks. The last one was March 2013. His heart is diseased and, only half of his heart is working. He also has Emphycema, and C.O.P.D. stage4, severe Bipolar <<hubby can be very difficult, and more at times and he has other health issues too.Hubby has been told he is terminal by his GP and left it at that. Hubby has to go to see GP once a month to see how his health has progressed which it is getting worse everyday. He has been waiting to see the heart consultant since December as there are no appointment until October this year and that is an emergency appointment, so I was told on the phone last week. I suppose they think he will be dead before then and no need to hurry. The GP believes the stents in his heart might have deflated again. Hubby has had no help what so ever. Family don't come near or by to see is any help is needed, since March 2013 and they only live about 5-10 minutes away. His family have stayed way ever since he had his heart attack 'talk about family support' I don't drive, hubby has to drive everywhere himself. So, all the help I can see is 'go away and get on with it'. Surely that's not right!? Especially when you see on TV about all the help people have been offered, help from this and that charities and nothing has been offered to us. I do what I am able to do myself but, my health is bad too. I have had Asthma all my life, C.O.P.D.stage2, Type2 Diabetes, Arnold Chiari Malformation and other health issues. I find it difficult to do things myself and I don't get any help either. Hubby and I just help each other the best we can...Good days, bad days as we all do. I don't look ahead, I/we live day by day...It does make a person feel bitter when other people seem to get help easy.
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i can see how let down you feel with the whole healthcare system.
We tried to access Macmillan but the twice we tried we were told to go away because his cancer was rare but " treatable" as an ex nurse myself I know you only get three chances to be told something by a patient and it was horrible to be told your not sick enough...
We also lost a branch of the family even thou I tired to include them and when we asked Why the vanished I was told " you didn't contact us to see how things were"
I feel for your suitation and will gladly be a listening or reading ear if you need me!
Hugs and well wishes
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thanks lou x
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