2am and awake again!!

[Mrs_Elton]

It's 2am and I am awake again. I have laid in bed trying to will myself to sleep for half an hour, may as well get up and 'update' on the last few weeks! Greg has been home for just over a month, what a HUGE adjustment to our lives. Physically: He has lost muscle strength. He is unsteady on his feet. He has a tremor in both arms most of the time,which sometimes intensifies for short periods in his left arm. He has the diaphragm reflex happening (like a hiccup/belch that is very strong and causes a real 'spasm' in his entire body). His handwriting is affected so is not very legible. He also finds that his hands are VERY sensitive to heat and isn't even able to hold a chip/piece of chicken with his bare fingers. Oddly, his tinnitus seems to have improved slightly! (Always a silver lining??!!) Mentally: His thought processing is definitely impeded. He doesn't have a 'real' concept of time. His confusion is much less than it was during the time he was in hospital when the swelling was obviously creating big problems. He still gets muddled at times, not as noticeable to others as it is to me who is with him 24/7. Main issue is memory retention. He forgets that he has rung people and will ring them twice about the same issue. He doesn't comprehend things like he used to, things that used to be simple to him before eg. computer stuff, he is now having loads of problems with. He used to be very direct and to the point in his conversations (not in a rude way) but now tends to be more like me and give the looooooooonnnnnnnnnnnggggggg-winded version of events!! Very strange coming from him!!! His behaviour is different too, he will have a visitor come to see him and while they are talking to him, he will pick up the phone and ring someone else and have a full on conversation on the phone. I find this quite upsetting, as I know that he would be horrified if he realized that he was being so rude. Problem is, his brain doesn't work the same now and so he doesn't know he is doing it. Emotionally: Greg is finding that he is becoming more emotional now when he speaks of his 'situation' (which is totally natural and understandable). He says that previously he could talk about it quite 'matter of factly' and not get caught up in the emotional stuff, I actually feel that it is because he is talking about it far more often and in a lot more detail than he has done anytime in the last 10 months. The Boys: Our two precious sons know their Dad has a tumour on the brain, they are seeing Silver Chain people, nurses (weekly),doctor (once for an assessment) and social worker (once to date) come into our home. They know we have a weekly visit to our family GP. They have had many 'playdates' while we have been to the numerous appointments in the last 6 weeks. We have taken them to one family counselling session and have another happening on Thursday morning. Tomorrow or rather today as it is now 3.40am, I will be telling them that Daddy isn't getting better. I need to give them time to 'process' this news before school starts back on 1st Feb. It is causing me such pain to know that their world is going to lose its innocence. Me: I feel pressure all the time from all different directions. I worry about whether I have done the right thing with the boys up to now. I am anxious and scared and so very sad that this is happening at all. I feel overwhelmed about the mountain of things still to be done regarding our 'legal/financial' affairs. I know there are bills that haven't been paid just because I haven't got around to doing it. I look at the Centrelink forms and don't have the energy, physically, mentally or emotionally to complete them. I am constantly trying to keep track of what Greg is doing/who he is talking to/what he is arranging to be sure that he doesn't do/say something that he shouldn't. I don't feel like his wife anymore and that makes me feel really sad, it feels like I have three children now instead of a husband and two children. If you made it to the end of this, then THANKYOU and congratulations, you deserve a medal for persistence and patience!! I really should 'blog' more often and then it might not be so lengthy!! Jill.

[Sailor]

Dear Mrs Elton It is actually a privilege to read through something like this as you are prepared to share with a group of people who are spread thinly across the country some of your innermost thoughts. It is great that the boys are getting the help they are, and yes the changes with Greg are fairly major. I have a friend who currently has only a few weeks to live and her husband died of a brain tumour. The symptoms you described with Greg are pretty similar to the ones that she used to tell us about. Centrelink - it is a real maze trying to navigate through there. A tip is that next time you are in the Medicare office,ask to see the centrelink person there. They are mainly meant to deal with senior and pensions, but they absorb the helpful Medicare culture rather than the unhelpful Centrelink culture and they might help you fill in the forms. They did in our case. Take care Sailor I keep sailing on in this middle passage. I am sailing into the wind and the dark. But I am doing my best to keep my boat steady and my sails full. Arthur Ashe

[Versaillon]

Hey Jill! Thank you for letting us know how you're getting on. I'm so glad your boys are getting some assistance to help them through this really terrible time. I feel sad too that your boys will lose their father so young. Thank God they have such a wonderful mother in you to help guide them through this. The pressure seems to get worse as time goes on, doesn't it? I'm almost in meltdown so I admire your strength, I really wish I had it. And I understand about not feeling like your husbands wife anymore - I feel like that with Rob at times. Take care and I'm thinking of you. Jo xxx

[Mrs_Elton]

Hi Sailor, I value this opportunity to share my innermost thoughts, I don't really feel that I can do that anywhere/with anyone else. My theory by writing is that I am at least offloading my thoughts, and if I get a reply to them then that is a bonus! Everyone seems to come through for me when I need it the most, so that is another boost. Thanks for the tip re Centrelink/Medicare. I have heaps of stuff to go through with Medicare and again, the mountain seems too high, I guess it all starts with one step and then another.......... I really like your quote on this one, I appreciate the effort you must go to, to find a quote that is so relevant. Thank you. Jill

[Mrs_Elton]

Thanks Jo.

[Jules2]

Hi Jill You are going through such a tough time having to deal with so many things at once. Thinking of you and you are doing a great job and giving your kids the best opportunity. when my father had a stroke my mother went through a phase of mourning the loss of the man that he used to be. It created enormous amounts of stress on her because she was having to take on all the things he used to do and also grieving for him as he used to be. A social worker can do all of your centrelink stuff. Give it over to them and thats one less thing you need to deal with. Centrelink can be insensitive at times and a total minefield, depending on who you get to deal with of course. Julie xoxo

[thaker]

Hey Jill Sending hugs your way. You are doing a fantastic job keeping it all together. Its hard to deal with the cancer and the grief of losing the person your husband used to be. While you bear the responsiblity of being his primary carer dont forget also to fulfil your needs. Do everything you need to do so you have a reservoir of memories to tap into in case he gets worse. The last few months of my husband's life, our relationship was filled with such tenderness. I eventually was able to accept the "new" him and to go with it and take whatever he could give. We spent a lot more time talking about nothing in particular, like every day was another lazy Sunday. Dont let the cancer be the focus of everyday, life should be the focus. My hubby also lost his ability to self-censor and I remember one time when we were in a queue and the person before us held us back and let some others through (he had been standing for about 15 minutes by then and just wanted to get in to sit down before he collapsed) and he called her a not so nice name. It bothered for all of 15 seconds because I realised that how she felt should mean nothing to me. Who was she to treat him that way just because he was six foot tall and there didn't seem anything wrong with him (at least not on the outside). Its not his fault that cancer has taken his ability to self-censor so people are just going to have to take him as he is...no need for you to feel bad. I guess what's hardest about the process is the need to face one's own mortality. Keep up the good work and if it helps to talk then blog and make sure you get your share of hugs (thats what I miss the most). Regards Sangeeta

[samex]

Hi Jill, Like Sailor I feel privileged that you allow us into your life at this time. My understanding from other people's experiences is the out of usual behaviour is quite "normal" and as long as your friends and visitors understand this then try not to let it trouble you. If they are making the effort to visit, then I am sure that they are aware of the changes in behaviour. I am no expert here, but what I have observed of others during times like these is that children respond with courage and honesty when the reality is not hidden from them. I think you are wonderful taking the steps you are at the moment with your boys. They are lucky to have a mother who is so concerned for them. 2 am is such an awful time of the morning isn't it - things always seem so bleak. But then the sun comes up. If blogging helps, then use it and use the friends that you seem to have about you as well. Lots of thoughts, Samex

[larn75]

Hi Jill, Wow! Do you know what a tremendous person you are? I am a real sook at the moment so I teared up over your post. Wish I could do something to help, you know I am always here in our little cyber world to offer a hug and an ear whenever you feel you need it. It is excellent that you have put in place that support for your sons, it also takes some of the load off you, when you have so many of your own emotions to deal with. Sangeeta is right, bugger what anyone else thinks about Gregs inability to self-censor. if they dont understand it is not your problem. I am sure all your good friend/family will understand, but you dont need more things to worry about so let it be there problem. Please, please remember to fit you in somewhere in all of this. You are not a robot! Find things others can do to make things easier. You dont need to carry this whole load on your own. cyber hugs xxxx Alana

[#10]

Hi Jill, couldnt help but cry while reading your post. Thankyou for sharing your story, you are such a truly amazing and beautiful person and a wonderful mother, dont ever forget that.. Take care and im thinking of you, lots of hugs xoxoxoxoxox

[Mrs_Elton]

Thanks everyone, I really do appreciate your kind words and encouragement.

[benlisecca]

Hi Jill, Thank you for sharing, you are a very special person. Just sending love and hugs your way. Wish I could do more to help. Take care of you Sharon xxxxx

[willow]

Hi Jill I know how you feel being awake at 2am. It is a very lonely time. Just remember as everyone else has said 'we are here for you and you can tell us anything' I can't get over just how strong and focused you seem - though most of that is I imagine not how you really feel. When I speak to others I amaze myself with what I say sometimes (I speak as if I am accepting of my condition and have little or no fear and am ready for whatever lies ahead - so not true) and later think to myself 'why didn't I tell them how i really feel'. It is important for you to have a place where you can be honest,upset or angry/frustrated, sad or frightened, knowing that we understand you and want to help. I hope there are still times right now where you can smile and enjoy the moment. You do need to build some happy memories. I think a lot of your boys and am glad they have such a wonderful mother. You have definetely touched my heart Jill and I hope you will keep blogging as often as you feel like it. Even with your own problems you have found time to be there for others and that is a wonderful quality in a person. Stay strong, have faith and 'be kind to yourself' Love and hugs, Willow

[WishingStar]

Hi Jill, I took a while to reply to your post - it really struck a chord with me. I think you are an amazing partner to your husband and I am sure that in his moments of clarity he would be so grateful that he knows that he is being taken care of right now and that he knows that his boys are being taken care of now and I am sure he has no doubt that you will be strong and courageous and bring them up to be fine young men. I know that this doesnt give you much peace right now, or help your grieving process for the changes that you already see in him for the man that he was and the man that he still is. I agree with Sangreeta - enjoy this time, if possible. My dad (who is still alive at 60, but has suffered two major strokes in the last 11 years) has absolutely no ability to self censor and my mother and myself and my siblings have all gone through (albeit a very long) grieving process for the man that he was and went through and exahustive process of monitoring his behaviour to 'save face' with family /friends/random people on the street - after 11 years we are all just over it and realise that it is other people's problem and just leave him to it - leaving the apologies and explainations on;y if they are truly warranted - does make for some truly wicked stories though :D Given my situation, and I in no means wish to compare my own situation to your situation, in that I have more time up my sleeve right now (depending on which dr I talk to - although I do plan to stick round until at least my 2yr olds 21st - I saw it in a dream the other night), I only could wish that I had such a supportive partner as yourself if the worst was to happen - because right now I am absolutely terrified that I would be dropped off at a nursing home and my daughter's upbringing? I cant even begin to think about it. Last night I had a mild seizure at work and began to slur words etc and my 6ft 6 (unemployed) husband was rung to come and get me - refused to get out of the car to help me - it was my fault for working so much, and then started mimicking my speech on the way home....... You should be so proud of what you are doing for your husband and your boys, Nicole

[Mrs_Elton]

Hi Nicole, Thanks for your reponse. I am sorry to hear that you have had a mild seizure and even more sorry that you didn't get the support and care you most definitely need from your husband. That must be very difficult for you. Focus on your dream where you saw your daughter's 21st, that is very powerful. Love and hugs to you, Jill.