The invisible carer

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 everybody, my husband has  incurable stage 4 lung cancer and we've been battling this just over two and a half years, just the two of us as family live hundreds of miles away, have young children themselves and jobs.  No one will ever understand what we go through as a carer, I have been lucky as I have a good friend base to call on but you cope alone because your partner doesn't want others seeing them at their worst, sick, thin, no.hair and the fatigue that goes with it all, so we soldier on and cope the best we can, my daily blog has released a lot of tension, I've written honestly and told it as its happened, as the thread goes, the good and the bad.  This has helped others and made me feel useful in other ways and I have tried hard to keep outside interests, how I would have done that with a small family I really don't know.  Even my oldest daughter said I was over reacting to my husband's constant grumbles, even down to how the windows had been cleaned, it's the first time in.her whole life that I told her to go away and leave me alone, a couple of days at home when the patient is being polite doesn't give a true picture.  So to those invisible carers we're doing a fantastic job, we're loved and thought about by those who know us, they might not say it often but without us many wouldn't have made it.  Love to you all out there coping hour by hour and day by day,  Carol xx

  • My partner has throat cancer and we have a 22 month old son. It is so difficult to care for a baby and a sick partner and work full time (I am a teacher so it is long days even though most people think you work 9-3). I did take some time off when my partner was in hospital and my school have been really supportive. What I would have liked would have been some support for me from the hospital or Macmillan nurse but all the support is for him.  After 6 months I am utterly exhausted and feel like I am falling to pieces, yet no one has noticed as everyone's focus is on the cancer patient (family, friends and medical personnel). There definitely needs to be more support for the invisible carer, I don't need a lot of help and I am sure my friends would understand but I really don't want to be breaking down on them on the very odd occasion I do get out of the house, talking to someone who understands would be nice. I am aware that there are groups set up but they are at times when I am at work or when my baby is in bed so not really a feasible option.

    On the positive side he is still here and we are still fighting it together.

    Kir xx

  • Wow your post is amazing and i understand the need to write and tell people how it is... people dont see what we see everyday as our loved ones will only show their weakness to us as they feel safe and loved.  I hope your daughter understand this better and that you get the help you need. Please feel free to contact me here if you need to vent.. I do believe that there is a chronic need for help for the invisible carer and we should all keep it together x x prayers and love to you both x x  

  • Hello my dear x

    I could write that I know what your going through but I find that its a hollow sentiment as no one truly knows what another person suffers unless they are right there. 

    You are an amazing woman to keep everything going as you are to hold down and full time job and an incredibly difficult home life. When my husband was ill we had a two little ones one under 4 and one who wasn't even 1 yet and i had to give up work in order to look after then all. I admire and deeply respect your difficulty's that working full time can bring. 

    I found it difficult as I explained in my post to have a conversation with people because all they wanted to know was about my husband and the kids and nothing about me and how I was coping. Have you found that even thou they offer help nothing is forthcoming? We found that people will only say that they will help to appear that they want to help. I wonder have you got anyone to vent to? To scream and shout and demand to know why you? It's horrible to say it but we are human and its hard to keep it all bottled up  

    Please feel free ton contact me here anytime you what to shout an scream about how unfair the world is its sounds like you need it. 

    Stupid advice I know but all you can do is focus on one day at a time small little steps that amount to big steps and then longer. Like I said its stupid but thats the advice i took and it worked.

    I hope this email helps on any way even if you think I'm talking ***  lol 

    Prayers and love to you all x x

  • Firstly apologies for re-instating an old thread, but it was such a huge relief to read this. The guilt I feel is immense after 4 years as an unpaid carer to my much loved partner.  I've had no time off and am mentally (if not physiclly) exhausted.  His close relations phone him, never me, they don't ever ask how I'm coping, they never volunteer to look after Mr. Kettleon for a while to give me a desparately needed break.

    Yes, I'm invisible.  Always I'm asked how's Mr Kettleon? and a conversatiion will evolve around that and nothing is asked about me, can't anyone see the black bags under my eyes? the exhaustion in my face, the answering the 'usual' questions in a monologue?  

    Because of everything else that life's throwing at everyone (Covid) I'm more remote, we can't go out, there's nothing to look forward to, only lurching from one hospital/clinic/doctor appointment to the next, with no car, it's not easy.

    But the biggest burden I carry is guilt.  How can I be so heartless as to feel sorry for myself when Mr Kettleon is going through so much.  Please, please, someone just come and stand in my shoes, take over my life role, just for a weekend, to give me a break, recharge batteries to resume the daily battle.

    I wonder how other's that responded to the original OP are coping now?  Any tips/help on how to cope with all this guilt?   

     

  • Hi there, you've done the right thing in posting again and like you I've been battling for over four years to keep Norman alive.  I'm now 73 and having been awake at 4am this morning because of severe pain in his hip, then trying to get back to sleep whilst you're mind goes to the darkest place, alarm set for 7.30am as stair lift man was coming at 8am,tea and more painkillers taken to hubby, a long phone call at 9am to my cancer nurse, I fully appreciate where you are coming from!  I don't feel guilty as I literally can do no more and my god we carer's need some love and help as well.  I am extremely lucky as my friend base is good, lots ask how I am, ask me out for coffee etc.   Or I do my own thing, a little retail therapy, a coffee with a fruit scone in a quiet cafe whilst reading a book for half an hour, we just need to remove ourselves from the hour by hour pain, cancer, worries and everything else that is thrown at us.  I am still doing my posts regularly on my Stay Strong thread so pop on and have a natter or let off steam.  We do know how you feel, we've stood in your shoes and run your marathon, there is always someone there for you, just look for them. Sending you a big hug, best wishes, Carol 

  • I've read your post 3 times over and I don't see why you have anything to be guilty about. You're human, not a machine. No one asked for this, it was just sheer bad luck.

    I'm finding out about the relative thing too. Call be cynical, but i sometimes get the feeling that if they actually ask you how you are, they will feel some sense of duty to help out when home truths come out. So they don't ask. If they help out, they have to deal with reality and not many people want to deal with reality.  To see their loved ones daily struggles. When they put the phone down, they can almost convince themselves everything is ok.  Only, we don't have that luxury, even for an hour.

    This even goes beyond cancer with some families. My dad was abusive to my mum.  His parents knew what he was like and couldn't wait to get him out of the house. When my mum walked out with us, his family were down right nasty. Calling her everything. Not because they believed it, because he was abusive to them before he moved out and got married, but because he was now their problem again. A problem they tried to pretend wasn't real for the 18 years my mum was married to my dad.  He became her problem, and that allowed them to relax.

    Now, I'm not for one single minute saying caring for someone is remotely the same thing, because it's not, but one thing it does have in common, some families just can't deal with certain situations so they delude themselves that all is rosy once they leave or hang up the phone.