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 and welcome to the forum. Firstly I am so pleased that your husband is in recovery and secondly I would not have been happy with your doctor's recommendation to 'look online' - you must have felt like that was a brush of. 

    As an ex carer (my husband died from cancer after three years with a terminal diagnosis)  I certainly found out who my real friends were during that time and they did ask how I was so did not feel invisible with them. My husband's siblings were a different matter as they stayed away being unable to face seeing their 'much loved' brother going downhill and telling my adult children I would be okay because I had them. Angry and frustrated I was, but not on my account, on my husbands. Fourteen months a widow and I am surviving because I have to.  If I need help I ask.  I was lucky as my husband's GP looked out for us both during the journey through the illness and then made sure I went regularly to see her afterwards but I know many who are not so fortunate.

    My lifeline throughout was this forum which I joined during the first year of hubby's diagnosis and there were times I would cry as I typed but someone always answered and made me feel less alone. I also had good access to support through local hospital referrals (cancer ward social workers attached to his consultant) plus the local hospice which although my husband refused to visit, would welcome me in for a chat when I needed to offload/seek solitude or advice.

    I am not sure why human nature makes so many not see what is in front of them as far as the carer is concerned but I quickly learnt to ask if I needed support outside of family whilst still maintaining good connections with our children/grandchildren without whom life would have been impossibly difficult.

    It's hard work being a wife, Mum and Carer and you do count so I hope things continue to improve and that you find some support yourself.  Regards Jules54

     

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    Hi Jules54 thank you for you comment I am sorry for your loss and hope that your journey is getting a little easier to bear.

    We were very lucky that the hospital he was sent to took such a risk with him and he didn't have to lose his leg but after nearly 2 years of battle things are finally getting to where they should be but I'm struggling to remember life before. 

    I don't have any friends and I hope to make some here. 

    I'm thankful for your comment

    Kind regards 

    Welshmumlou

     

  • Hi

    Really hope you do find some friends locally and it's great that the hospital was able to do the best for your husband. Trying to remember 'life before cancer' when it has affected your life so much during the journey is a difficult one but I am sure the love you have for each other and your family will get you there.  Wishing you all the very best.  Jules

  • I'm ever so sorry that you feel so overwhelmed. You're not complaining. Your putting it out there that you need help. Very few people asked how my husband and daughter were coping. Fortunately I didn't need any great degree of care because Marc had to keep or business going and our daughter had her A levels. Marie Curie have counselling services. They also have homeopathic treatments. Here in N. Ireland there are two respite facilities. A residential facility on Co. Down where patients and their families recieve all round care and treatments. There are cottages in Coleraine. Fully furnished and ideal to get away. Unfortunately this facility is really just a change if sink though. The cottages are situated in a rural environment. Beautiful. We've been. I organised this through Cancer Fund for Children Tel: 02890805599. Give them a ring.They were great. They really listened. Sounds like just what you need - someone to listen, someone to put their arms around you and give YOU some comfort. Contact Marie Curie. Tell them how you're feeling. You'll not be telling them something that they havent heard before and before you know it they'll get you some help. Tell them you're overwhelmed. I hope and pray that you get the help you need.

  • I know that when you google how you feel, that an archive post reveals itself, but I just wanted to say thankyou for putting into words how I feel today.Much love to you.... this was a response to the starter of this thread  as I only read the first post and I am worried now that my comments were not appropriate to those who posted afterwards. Hope not. Love to all.

     

  • Hello honey.. 

    firstly hun I hope that all finds you well tonight, 

    if you need to chat please don’t hesitate to contact me it’s hard yes bur it does get easier everything seems overwhelming and scary and you feel like your ignored but we all stick togeather and will help any way we can 

     

    yours in prayer

     

    Louise x x x 

     

  • Hi Louise

    Ive just found your post and wished Id found it 2 1/2 years as I felt so alone and had very few people to talk to. My hubby was diagnosed in Dec 2015 and from then on it has been a whirlwind of appointments, surgery, chemo , radiotherapy, more surgery and eventually remission. During that time our daughter was in her 2- 3 rd year at uni so it was a difficult time for her too. My first husband had unfortunately passed away with a brain tumour and I coukdnt believe ut was happening again. 

    I was positive, cheerful , organised in fact the model carer on the outside but on tbe inside was screaming Im not ok and please someone ask me how I am. I didnt tell anyone as it felt wrong and disloyal as it was him with the cancer not me.

    Anyway for anyone else reading this talk to someone dont hold it inside and good luck.

    Emma

  • Dear Welshmumlou. How well you have described being an invisible carer. I do not have children but after 6.5 years of supporting my husband with folicular lymphoma I too am exhausted and tired of being invisible. Of course I understand the focus will be on my husband but it is incredible how people just ignore you as the carer who is seen merely as the vessel of information on the latest cancer update of your loved one. To be frank it has caused me to become very depressed and the little energy I have goes into the caring and little left for me. I wish I could describe it as well as you have but just needed to say thank you for putting so well how tough being an invisible carer is.  

  • Hello 

    I dont know your name but I know what your going through i know its easy to say that and im guessing your fed up of people telling you what they or someone they know went through and that it was tough and they found this helped and blah blah blah...

    Well im not gonna do that  because its bloody awful and doesn't make you feel any better or make you feel like there is light at the end of the tunnel...

    All i will say is one step at a time... I know that sounds easier said than done but one step at a time is all you can do.. small steps that can add up to one big step then another and another and before you know it a whole week has gone by.. 

    I am here if you need to sound off about anything  or just want to vent but your just as important x 

    God bless x x x