fighting the demons within

[#1]

If I make myself too busy because it is breaking my heart then am I less of a carer? If I get anxious when his body starts to fail and get cross at him am I to blame? If I routinely give him his meds and not just take a minute to chat does it make me hard hearted? If I at some time during the day find myself thinking about something other than cancer then do i deserve that luxury? If I sit alone and cry when he needs me the most am I being selfish? If I don't take the time to get his food right because my kids are into mischief am I being too blaze? I'm just trying to make my way through this with you the best I know how... wish there was a rule book but there isn't. Be patient with me, love me and above all... let me help you....

[chris_martin]

Hi there. My name is Chris and I have only just joined this website but already it has given me so much support. My 83yr old dad has oesophageus cancer and lives 5hr train trip away from me and refuses to move down with me. I just feel so bad that I can't be the one to help him out each day. Yes he has neighbours/friends taking him to appts/shopping etc but I really need to do that for him and I can't. Dad and I are really close and I know he worries about me as much as I worry about him. To make matters worse (I always ring him at 7pm every night) but tonight I was just so so tired and couldn't make that call and he rang me at 7.30 and said he was going to bed and I felt awful as he is going into hospital tomorrow to have stent put in and even though I didn't forget somehow my mind totally shut down and now I feel so bad. Also I have 2 brothers who don't even know he is going into hospital but for once I am NOT going to ring them as if they were concerned they would keep in contact with him. I just feel totally lost and don't know what to do.It must be hard for you as you have kids and no you are not being selfish but just trying to cope with a very hard time. Please stay in touch with this site as it has helped me so much since I joined- more understanding than I get from family/friends. You take. Chris

[chris_martin]

Sorry I meant to say you take care not you take LOL. I am just trying to get used to this online chatting. Bye

[larn75]

wow wifeyb, u seem to have looked into my very soul. It is so hard to get it all right. As long as we do our best and our intentions are right, we are doing all we can do. so hard as the carer to get the balance right isnt it. hugs after hugs after hugs, I know how u feel exactly. Your time out is VERY important, please remember that Alana

[Mrs_Elton]

Hi wifeyb, Yet again you are spot on! We all feel like this, finding the balance is such a challenge. Keep up the good work. Take care, Jill

[CATS]

wifeyb- You have just said everything I thought of and felt 19 years ago when I was my Dads sole carer - God I hated myself for not being more caring and considerate - or so I thought at the time. I was worried about his meals - was I giving him nourishing foods, did he like what I was giving him etc etc..Was he comfortable - of course not - he had terminal prostate cancer - but I didn't want to think like that. When I was not with Dad I felt very guilty - especially if I was out self-medicating - or so a counsellor-said that's what I was doing to cope - (seems extremely selfish now since I don't drink anymore) at the local pub with my friends. I used to cry a lot too especially when there really was nothing more I could do to make Dad smile/comfortable and when one day he said to me he was so unhappy - I just sat on his bed and cried and cried - that was the saddest thing that Dad had ever said. Do not feel guilty or that you are not doing what you think you should be doing -old cliche- we are only human - we do what we think is the right thing for those we love and we really cannot do any better. As Pete (keepontruckin) said 'Keep your chins up'. Take care of yourself xx

[margc]

what a great bunch of people you all are, I was sad for myself before joining this web site now I am angry with my self for being so selfish I hope to be more like you all and keep on living without fear and to really appreciate others. Take care all of you Margc

[Jules2]

Hi wifeyb ... I would say it just makes you human. Being a carer is no easy task. hugss Julie xo

[chris_martin]

Hi there. My dad who lives 5hr train trip away was in hospital today having a stent put in to try and make it a little more comfortable for but when I spoke to him he sounded awful-couldn't even talk properly and just wanted to sleep all weekend. I just feel SO SO helpless and don't know what else to do except let him know I love him and we will all help him move to us. Just feel so guilty that he hasn't got his family around him but just a neighbour. But we have done all we can to bring him here but dr said not to push!!!! I just hate this.

[#10]

Hi Jill, How you doing? Hope your are getting some rest and getting some time to breathe!!! Thinking of you lots and hope that tomorrow is brighter than today.. Let yourself heal daily....something a fiend told me and it makes sense... every night I need to almost atone for the days oopsies and start afresh tomorrow... Hope you are still smilin Love tonya

[#11]

Hi Chris... was thinking about you today with your dad after your reply... You sound like a trooper, all that travel, it made me feel tired just reading it.. Hope you can gain strength from knowing that you are doing what you can, and although we want to take it away and make them feel healed...sometimes they need to examine themselves and take small steps to reclaim their life. It's hard when they can't or don't want to I know.. my hubby only 35 has wanted to give up several times and all I can do is release him, although deep down I want him to fight... but that's me being selfish wanting him around... Take care of you, Tonya

[chris_martin]

Hi Tonya. What a bummer. I just replied to you and somehow pressed wrong button and GONE. No you are the trooper as you are so young(same age as my kids) and you shouldn't have to be coping with this but as I've been told C doesn't discriminate. Yes I am doing what I can from afar but it's not enough even though we have asked dad to move here but dr says not to push him and then I have family saying "he is old maybe it's his time" but I can't handle that. He is my dad who has always been my rock and emotional support and I can't see a life without him.I think that is where my dad is now- he doesn't want to deal with it anymore but where does that leave us!!! If you are being selfish then I am too. Please take of yourself xoxo Chris

[chris_martin]

Hi there CATS. I am now (i think!!!) about to be dad's sole sarer if he does move down with me. As mentioned before he has terminal oesophageus and after hsving a stent put in last Fri for a bit of relief he was rushed to hospital Sat morn and is still there. We went and saw him Sat and he looked terrible and he is losing weight every day. I asked him AGAIN to move in with me (4hr drive away) and I would look after him. Even though my health is not so good I feel he is better off here with me(my daughter only lives 1 street away). And I don't feel as though he should be by himself anymore. But he keeps changing his mind - only because he doesn,t want to be a burden to me!!!. I know I can't lift him, bath him etc but there must be some help out there to help with those matters. But at least I/my kids/grandkids can give him all the love in his last days that he deserves - just a matter for him to decide. I think his is getting closer to his decision every day!! Thanks for listening. Don't know what I would do without this link xo Chris

[#14]

Hi Chris... That's great that your Dad is coming to a decision... he's lucky he's got you to care for him in the last weeks... You will definately get palliative care for him... can get 24 hr care if you need it... but definately nurse to come shower etc and get equipment on loan for shower/ toilet etc... Ask the hospital about the palliative care option I'm sure the grandkids will give him a lift emotionally... kids can do that, they are so innocent.. Be sure to source all the help you can.. ring the cancer nurse hotline number on this site and speak to a nurse... they will direct you, it's a great service... 24 hr I think. Take care, hope all goes well Wifeyb ( Tonya)

[chris_martin]

HiTonya. I hope he decides he wants to come stay with me but where do I get the physical support that I will need. His specialists are on Central Coast while I am on St Coast. My dr said it will be probably a case os calling ambos if he has a problem. Just so hard but only thing I'm concerned about is that he is comfortable. And he is still not sure he can move!!!. I can only say that I have put that offer to him and know it is up to him.

[#16]

Hi Chris.. The local hospital should have contacts for home care nurses/ palliative care nurses. When they discharge him if he goes to stay with you... they should give you that info or at least contact the local hospital where you are to link in. If there is a social worker at the hospital your dad is at ask them. Staff on the ward should know or find you someone who does.. keep asking . You would want those things in place before he comes to stay so you know he has the help. I wouldn't think they would discharge him without it anyway... Hope it helps Tonya

[chris_martin]

Hi Tonya. Thanks for the support. Dad was sent home today and I was just speaking to him but he seems to be having a lot of trouble breathing. I just have to trust that the doctors know what they are doing by sending him home to live on his own. He still wont commit to moving in with me but I have done a lot of the ground work and I think little by little he is coming around. As I said to him my health may improve as if he is with me I won't worry so much as I know what is going on. Yeah it may be hard but after all he is my dad and I love him. But I can also understand if it was me I wouldn't want to burden my kids!!! But whatever will be will be. xo Chris