I need some support please. I am so stressed about everything that I have been hitting my arm. First was slaps, now I hit it, because I am so frustrated and angry that it has to come out. I need help please
I think that perhaps there is a reason behind why you cannot ask for what you need and that is because you feel you should be able to cope without it. I bet many who read your posts would relate to this. So much of your time is taken with the worrying about Chris and Will that there is little time for you to slow down just for a moment and consider yourself. Whilst Chris is in the best place for him just now (even though you would both probably prefer him to be at home) please take that moment to look after yourself and perhaps write down the questions you have running around in your head.
My first port of call when hubby's illness took a real hold was to speak with my GP and explain how I felt and ask what practical help was available for us both. I was grateful for the community nurses who came in to help on the practical side and they were my guide to other sources of support. I was frightened, unsure of the future and I only coped by talking (probably too much at times) to others who were not emotionally linked to the family. I also used the local centre at the hospital and the hospice service for carers (even though hubby was never admitted to hospital) to talk through the practicalities of what to expect. That was part of my coming to terms with the fact I could not do it alone (it can take just one conversation for the floodgates to open and release some of the pressure you feel under). If you are not open with yourself then others will see a 'coping' lady and may not offer that support because think you are on top of it. It is such a fragile time and I do not know where the strength comes from but somehow you can get through. If you have the means to call on help and find it impossible to talk then put it in a letter and read from it. The nurses on this forum are so approachable and there to help and I think you really need to take that first step both for your own wellbeing and for Chris and Will. Asking for help is not a weakness but a useful tool for the coping strategy. It cannot make the illness go away (which is what we would all prefer) but denying yourself support will also make you ill. Sorry for the waffle and hope you get someone close by to show you the way forward. Sending virtual hugs. Jules x
I'm sorry for my absence. Thank you Jules for your lovely kind words, they brought a tear to my eye. Everyone says I am doing so well but only people in this house see I'm actually not, and you guys. Maybe I am but I have moments as Will calls them. I'm sure everyone does. Maybe I'm too hard on me. Chris is back home, his mobility is so unpredictable. He walked with me and Will to the corner shop, with sticks. I didn't want him to, and we argued but he went. He wouldn't have made it back without my support but he did. But then later he got up, walked out of lounge door and his legs started going and I had to hold him up and Will had to grab a chair and put it under him. There is no pattern to it. He would have fallen for sure. That's the frightening bit is that there isn't a constant. His short term memory is not too good. He really cannot remember what day of the week it is despite how many times I tell him. He can remember what year I was born in but not the day or month. I'm slightly better, trying to do this mindfulness malarkey. Do it before I go to sleep. I've just lost or loosing so much to this disease, my dad, my husband, my career if I'm not careful. Too many things. Going to sort the dogs out then go and do my mind stuff. Thank you both for your enduring kindness. I tend to shut down when I'm struggling, but coming in here tonight and seeing messages from you guys really helps me. Thank you both and I hope you are both doing well. Take care xx
I hope you won't mind me posting on your thread. I just wanted to let you know that tonight, a lady posted who seems to be in exactly the same situation as you. Her husband has been diagnosed with Glioblastoma Multiforme Grade IV and she is feeling a bit lost. If you feel like it, don't hesitate to drop her a line on her thread here and perhaps you can gain some strength from talking to each other.
I hope you are feeling ok this weekend - and I am so pleased to see you have received such amazing support from Deano and Jules.
So sorry that it has taken this long for me to see y our post but lost my internet access and only got the new router yesterday so am trying to catch up with mail.
Cancer causes such frustrations and inner anger doesn't it? It took me quite a time to accept there were some things I could do nothing about and this saddened me greatly. However once I told myself (and offloaded on the forum) that I had to concentrate on the 'now', was actually doing the best I could in the awful circumstances we faced, I drew breath and prioritised the really important stuff.
My hubby's attempts at mobility were agony to witness in the latter weeks of his illness but he stubbonly refused help from me seeing it as a weakness. However he would take himself down the road hanging on to walls (when I was not around) and I only found out when the neighbour mentioned how frail he looked- terrified does not cover it but I never told him I knew as he needed his dignity so much. Eventually his best mate took him out for a visit to their favourite pub and presented him with a walking stick telling him (where I coud not) that he would not take him again without the stick as he would be unable to help him if he fell. It worked. However when he became to frail to manage with the stick he stayed home as refused to use a wheelchair and he only went out when absolutely necessary but still managed to potter indoors until the last few days. He amazed us all really.
It must be very sad to see Chris not being able to be the person he was before cancer struck and I do not know whether he would accept one but a walking frame rather than the sticks would perhaps give him a little more stability and the one's with a seat built in help many in the short term. Our local chemist hires them out and /or his palliative care team may be able to offer assistance with the practicalities (we also had help from social services in respect of borrowing equipment).
You and your lovely Will are and will always do your best for the man you love (I doubted myself often during our cancer journey but think this is the natural way of things) but some things just have to be put to one side and picked up again when the time is right. It's hard when you have a professional career and I was lucky I only worked part time but even so my Manager offered me a six month sabbatical as and when required. In the event hubby preferred to have professional carers in his last few days and I used up all my holiday leave instead just so that I could be there as long as I could.
I am sure it must be so frustrating for Chris not being able to help himself or remember things in the short term but he will know and see your love and compassion and if, like my hubby, he shows frustration and irritability because of what he cannot do then I used to agree with my hubby that it was hard but also remind him of how much he had given the family and when it was hard to say I would write it down for him so he could read it and remind himself. Makes me a little sad remembering this it was what I did at the time of greatest need for us both.
Hope the mindfulness therapy is bringing you some relief and you know the forum (and me now that I am up and running again) will listen whatever you wish to say. I found it somewhat easier talking to virtual strangers at the time of great pressures and it actually helped me understand my own thoughts .
Thanks a lot Mandy - very kind of you and a lovely message you posted. As you are both in such a similar situation, I thought it would be good for you two to share your experiences. Hopefully she will see your message and respond.
Best wishes and hope you are feeling ok today. Weather isn't so good at the moment!
