So tired, yet unable to sleep.

[willow]

Hi It is after 1am and I am lying here after an exhausting day. I don't know what to do or think so I thought I would right it down. Here goes........ I have been dealing with family issues for ages now (probably at least six years) but a lot in the last two years. Before I got diagnosed I was working long hours so I could have a Friday off every two weeks to spend with my parents. It also took me over an hour to drive to work and coming home was sometimes worse. My mother has dementia and my father was coping less and less and called on me continually. I spent each Saturday or Sunday there as well. I knew then that i was becoming exhausted but felt there was nothing i could do as there was only me to help. My parents live over an hours drive away. My daughter was in London and my son was on call 24 hours a day in his job. Then my daughter returned for a surprise visit in Feb '09 and for a brief period I was so happy and felt that finally I could relax and rest. Then in March '09 I got my cancer diagnosis and my world fell apart. Telling my father was one of the hardest things I have had to do. We waited until I had had one chemo session and before that I kept lying to him telling him i was busy in meetings each day at work or that I had the flu or gastro or something to cover the weeks I was having surgery and then recovering and then the first chemo sickness. He reacted quite well considering. Then i had to stay positive around him as he was still dealing with Mum and trying to care for her when he was exhausted each day himself. She was becoming rapidly worse and was very demanding. He did have help with some carers from time to time but he was starting to look very unwell. Anyway - to get to now .......Mum is finally in full time care (this took a lot of hard work to organise) and Dad is not coping. He is so lonely and depressed and I still have to deal with numerous daily phone calls from him and problems. We have now decided to move both Mum and Dad to my area as Dad has agreed he can't live in the house on his own anymore and so far from his family. We had to do a lot of talking to convince him this was for the best. Today I had a frantic call from him - he has been having panic attacks. I organised for a neighbour to sit with him and then my daughter to go there and my son and I headed down too. We all talked and packed Dad up and then Dad and I went to see Mum. I then took him to see my brother ( who is also very sick - he had a brain haemorrage in March '08 and never fully recovered and he has a serious illness as well) Then I drove back home with Dad. I don't know what to do - All day I have been smiling and keeping Dad happy while all the time I have been crying inside.....it is hurting me so much to see my parents like this ....my Dad is suffering and so sad that his wife is in a home and he is missing her so much. When I go and see my mother my heart aches....she is so frail and she begs to come home .....her dementia is worse and she is so very confused. I just want to scream and cry ....why is this happening ....why is life so cruel......why do i have cancer when they need me soooo much ....why do I feel like I just can't cope with all of this .......I just want it all to stop .....i can't do this anymore .....telling everyone I feel ok ..and Dad today told the nurse at the aged care facility...I couldn't do any of this without my daughter ..she is so strong. She is my rock. No ....i'm not ....I'm scared and tired and I just feel like giving up .......please ...what do I do ....I feel so selfish because I don't want to help anymore. Can't anyone see ..I have had months of being sick and of feeling scared and now I just want to focus on getting well and staying well and I can't because each day is filled with dealing with my Mum and Dad. I feel confused because before it was clear - I would look after them and then get on with my life but now things are different because I don't know whether this cancer will come back. It is so hard now because my future is so uncertain. Today I was so scared because I could hear myself speaking and telling Dad not to worry and that we would handle everything, just relax Dad. But deep inside I was struggling to stay calm. The tears were just below the surface and the fear was threatening to overwhelm me. I so badly need someone to just give 'me' a hug and tell me they are going to look after 'me'. God - that sounds so selfish. My parents are both 88. Why do I feel like this. I want so badly to be there for them 100% but at the same time I almost resent that I can't just walk away as I am so tired. My home was the one place where I could curl up and cry and relax and sit and be me. I now have to hide my feelings, bottle them up until I feel i am going to explode. And that is what I am doing now - exploding with all the pent up emotion of today. I have just thought I should be grateful that I still have my parents ....and I am ..I really am ...but to see their pain and not be able to take it away. I can't even tell my Mum I'm sick. They lost my sister 13 years ago and I am so scared they will lose me....My dad would never cope with that......I am supposed to be there for them now and I just don't feel capable. Thankyou for bothering to read this if you got this far. It is horribly long winded -but now I feel I can sleep. It is a little after 2am. Kind regards, Willow I have just read back on this and thought how self indulgent it is but I will post it as I have noone else to tell and I have to get through tomorrow. It is out now and I will cope ....but it is so hard to face each day at the moment.

[harker]

I'm glad you did post it, Willow. There isn't any such state as self-indulgent when dealing with your own cancer and trying to find out what the healthy thing to do might be. And you have all the carer's baggage as well. It's not a healthy combination and you are better of saying so, as you have done. H

[joyhoney]

Dear Willow, hope you are feeling better. I find the worst time of the day is nighttime. It seems everything becomes too much, the worry, the fright, the fear. I cried when I read your blog. I really feel for you. You have a lot to deal with. Please don't feel like you are alone. I know there are helplines you can call, but I'm not sure what they are, perhaps the cancer council would know. I know there are community services that can give you a break from your Dad and it just might be worthwhile, for a few hours, to let someone take over and it may be beneficial for him. You are welcome to send me an email, a private message, etc, when you feel that things are becoming too much or even if you just want to talk. Having cancer is a battle on it's own, having to deal with other issues at the same time would be overwhelming. take care Joyhoney

[margc]

Hi Willow, I cried when I read your sad story, you have had so much to bear, could your father not go to the same facility as your mother so that he is with her, getting care and maybe mum wont fret so much and you could get a much needed break. My heart really goes out to you and I hope and pray that you get some peace and quality me time. Take care I am sending you hugs Margc

[Teacher_Mum]

Beautiful Willow, What a loving and caring soul you have. You are doing beautifully and take it as it comes. There are no guidebooks or instructions and you are doing the best you can with what you have and that is all that matters. Steady as she goes Willow - we are here for you in spirit, we may not be able to embrace you with our arms, but we certainly can with our hearts. Thinking of you, xxx Teach

[Sailor]

Hi Willow I think anyone has a right to feel overwhelmed when dealing with what you are dealing with. 2 am is good blogging time when you can't sleep so make the most of it. It is why this site exists. However, what you are dealing with you need some help with - when you go back for your next round of chemo ask to see a social worker and find what help is available for YOU. Things that will help you to keep going. You might be surprised at what is available through things like home and community services, or whatever they are called where you live. If you live in Victoria ask to get a copy of the services directory produced by your local integrated cancer service - they all have to produce them. Don't be afraid to call the cancer helpline 13 11 20. Don't be afraid to blog at anytime but too much 2 am ruins ones beauty sleep. Regards Sailor Never go into strange places on a falling tide without a pilot. Thomas Gibson Bowles

[YehYa]

Hi Willow I hope you had a good nights sleep after writing your feelings down and I really do hope you feel more rested. I had tears of saddness and empathy for you as I read your words.As your dad said you have helped both your mum and dad and as far as your dad is concerned you have been his rock. Even though you don't feel it inside on the outside to your dad you have been a great help to them. Maybe you could get your son and daughter to go help your parents just for one weekend or even one day or a couple of hours just so you can have a day to yourself and maybe recharge your batteries a bit. Maybe if you can afford it take yourself off and have a theraputic massage, turn your phone off and just relax a bit you deserve it. I'm sorry I don't know what else to say to help you feel better. Here is a big vertual (((HUG))) Lyn xo

[Mrs_Elton]

Willow, Your load is heavy, heavier than anyone deserves. I hope you found some relief by sharing with us, it was a good decision to come online and put your thoughts out there. I have no words of wisdom, just caring thoughts and an ear to listen (or eye to read as the case may be). Our hearts go out to you, hoping you find strength, hoping you find help and hoping you can feel our best wishes are with you. Take care, Jill xxooxx

[thaker]

Willow I am sorry that at a time when you should be taken care off you are instead having to be the carer. You are in no way self-indulgent. I agree with all the suggestions that you seek the help that is available out there to give you some respite from your heavy burden. If cyber hugs count I am sending you some. Sometimes I think that there should be a fairy for a day/ week service available to cancer sufferers and their carers. Someone to take on your daily tasks for a short while so you can sit and breathe. Take care Sangeeta

[Jules2]

Hey Willow Sending you some hugs, you are amazing and having to deal with such a lot at the moment. Julie xo

[benlisecca]

Dear Willow, Sending lots of hugs your way, wish there was more I could do to help. Lots of love Sharon

[larn75]

I really felt for you when reading your post. What an extremely large plate you have which sounds full as a goog! I agree with Sailor. You really should talk to the social work and get some assistance. You are after all one person, and a person who has so much to deal with all at one times. I think you are more than a little entitled to your feelings right now!!! I know we are only words on a screen but I really like Teachers sentiments that we can embrace you with our hearts if not our arms. You truly are a wonderful, caring person to put that smile on for your Dad while your heart is breaking. Wish there was more I could do but remember we are all here waiting with cyber hugs and kind thoughts Alana

[CATS]

Willow, my heart really goes out to you. You are carrying an enormous burden with your illness and your Mum and Dad with their problems. Thank God this site is available because we all need to get our innermost feelings out and what better way to do it than type madly for a while and just let everything you are feeling appear on the screen- it really is very therapeutic. As for 'self-indulgent' - that word should not even be in the vocabulary of a cancer patient! Even though to us who are reading your story, you seem like super woman - you are not, so please don't try and do things on your own - as others have advised, enquire about what help is available for you- you maybe pleasantly surprised. While the weight of the world is on you and that is certainly how it must feel, you must still remember that you too are ill and need some type of respite from all the demands. I know it is easier said than done - but you do definitely need time out, it's not something you may like to do - it's something you HAVE to do for your own health, both mentally and physically. Think about who you could contact - the Cancer Council helpline is a good starting point, then follow it through- nothing too demanding, just a few hours having a massage or a manicure or if you really can't handle people, book into a motel for a few hours or a night for some total peace and quiet. Whatever you decide to do, I hope it gives you some time to collect your thoughts and hopefully find (with help) some much needed assistance. Everyone is thinking of you and that includes me and of course Tulip my extremely sensitive cat - she is!!! bye for now xxooxxoo

[#14]

Dear Willow, I'm so glad you shared that with us & i hope it has helped you to talk about it, even if it's just a little bit? You are a truly amazing person because to have to deal with your own cancer is a huge enough thing for anyone to have to bear but to have the massive worry of your parents at the same time is just extraordinary. I think night time, when we need & want to sleep, seems to be the time our minds decide to work overtime for some reason. Just remember you are not alone & i think you have done the right thing sharing it all with us. Big hugs Mez xox