My partner Martin was diagnosed with this horrible desease on june 19th 2008. I am so scared of this monster of a disease, why does it happen, where does it come from? Cant we find a cure? please God find one soon. There are htousands of new cases every year why cant we save these peoples lifes from this horrible disease.
how are you today hope that you are well, thanks again for all your helpfull information, i certainly know what i have to do reguarding the docs now. Martin seems so phisically well just now its so hard to beleive that he is so ill, mentally he is not so good forgets alot very irrational and a complete personality change. Did you exerience this
Hope you are doing well, you are sucha an amazing person, i have just read your profile and your tributes to your darling Brian, i cried buckets. You had many wonderful years with Brian and must have so many wonderful memories, it must be so difficult for you. This is such a horrible disease that affects so many wonderful people, maybe 1 day they will find a cure. You are in my thoughts.
Hi Gayle I'm fine thank you - had a very busy weekend as my mum came home from hospital on Friday, there is nothing more they can do but we are happy that she is at home, in the house that she loves. My dad is doing a wonderful job, I never thought he would be able to cope but has been amazing. She is confined to bed now and at times her mind is all over the place but it has proved to be a light relief too as she has us all laughing with some of her comments - the truth is all coming out! She is 71 but at 70 when the disease occurred looked 60 and was such a social butterfly. We too made sure that last year was good for her, she sailed through her treatment and had a normal life last year and really it has only been the past 4 months the tumour started to beat her.
My mum too had a change of personality when she was first diagnosed. She actually became quite aggressive for a while and began to suffer depression - we thought that is what it was before the diagnosis. She had no reason to be but was very depressed in the weeks before she had her seizure. Her short term memory was bad from day 1 but it did improve following treatment. Physically she has been very strong throughout.
I hope you are ok too and had a good weekend. I agree with Jane, try and live as normal life as possible. None of us know what is around the corner but is is harder when you do. I never used to ask my dad how he was, all the emphasis was on my mum but one day I did and he just started to cry - it made me realise then how alone he was feeling - people sometimes forgot the other person in the relationship and it is not selfish to give yourself some time when you feel you need to.
It is my parents 50 wedding anniversary on Saturday 6th September and my sister and I are going to ensure it is a nice family evening. Even if my mum doesn't remember it on Sunday, my dad will.
Sharon I'm so pleased that you have managed to see how lonely your dad is, it actually bought tears to my eyes when I read your post, it doesn't matter how much practical help you have around the house but no-one can replace what starts to disappear from your relationship, chats, walks companionship, just being together, being one. I'm sure their wedding anniversary will be wonderful and very emotional, Take plenty of photos and post a couple on here. Our wedding anniversary is sept 17th I'm just hoping my husband will make it. We've only been married 3 years and together 8 and I know some people will think well thats not as bad as when you've had 40 years but its different, at long last you've found your soulmate and so soon they are taken away from you. Make sure you treat your mum to a new hair do and the works if she's up to it I bet she's love a girly day barbara
Sharon, congrats to Mum and Dad for Saturday, we are still apprentices as it is only our 42nd on Wednesday, (Sept 3rd was the day that war broke out!). Barb, good month September then eh? I hear it's someones birthday on Wednesday, do you need to borrow my bellows to blow all those candles out, ANN? Love to all, Martyn XXXX
Glad hear that your dad is doing ok, hope you all have a nice time on saturday at their wedding anniversary, take lots of photographs and make lots of happy memories.
My partner has been so erratic recently he has practically moved in with his daughter from a previous marriage, he has really bad short term memory loss and a complete personality change, he is blaming me for everything, he thinks that i dont want to be with him anymore, he came home on friday and told me that the hospital refused to give hime any medication for a week, i v not been there as his daughter has been taking him for the past week and a half, i called the hospital on friday but too late to speak to anyone, got a phone call this morning he did not attend hospital last week for blood tests of temodal, i was informed that it highly unlikely that he will get any more chemo i am at my wits end i dont know what to do, the rest of the family dont seem to realise how confused he is and that he needs 24 hour care. Aynone got any advice.
Barbara, nice to hear from you and thank you for kind words. I so hope that you get to celebrate your anniversary on 17th September. 3 years, 10 years, 50 years, it means the same, love isn't judged by years. I always thought this was an older persons disease and I have been shocked to read how many younger people are suffering. I have shown my dad some of the postings as he has struggled coming to terms with my mum illness and it has really helped him. He is beginning to realise just how lucky he is that they can celebrate their 50 anniversary, what a milestone.
Martyn, thank you to for your kind words and yes, we will enjoy Saturday. Also, congratulations to you and your wife - 42 years of what is obviously a 'very friendly' war. It is also great to read good news and no more thoughts of hospitals until August 09 is just fantasic. I have read alot of your posts and on 'we talk brain tumour', you replied to my first post but I didn't really get so involved until recently. You have posted some wonderful comments and you also bring humour to the site - which is what we all need sometimes. Enjoy what is now a double celebration on Wednesday - enjoy the day. sharon x
Gayle Do you get along or speak to your partners daughter? If you do can you at least ask that if she is looking after her dad then these are the appointments etc can she ensure he gets to them. If you don't speak to each other maybe you might have to start. Does she want her dad with her? does she really want the responsibility or does she just not want you to have it? You might find she would rather you were in charge and together you might be able to come up with a plan. Families especially 2nd ones aren't the easiest to deal with in situations. Barbara
I get on fairly well with Martins daughter, this situation is causing alot of bad feeling amongst everyone, the last week and a half she has been attending the hospital with her dad, but missed last monday when his blood is checked, and chemo is adminiserd, he went for his radio but forgeot to go up to chemo clinic, they dont seem to understand that Martin needs 24 hour care and attention. Martin doeas not want to be with me at home st the moment he is blaming me for all sorts of things, so i have accept that for the moment unfortunetly although it is so difficult. He has been appearing at our house at 2 and 3 in the morning and leaving again at 8am i just dont know what he is thinking or doing, he is upsetting my 8 year old daughter and myself so so much, no we have the added worry if he gets no further treatment.
Gayle Is there no way you can just attend the appointments with him? It must be quite unsettling for you and your daughter. I'll ask and I know its a stupid question but have you tried going out and discussing the whole situation, where he wants to be in the future, who is going to look after him etc. Does he know the seriousnous? of the disease? I should imagine he's blaming you is because he's scared and lashing out and they always hurt the closest to them. will his daughter talk to him? barb
