So tired and sad

Yes, they do and thank you. I think the mornings are the worst when I’m thinking ‘oh no, another day to get through now’. Especially if I’ve not had much sleep and I have to be up so early for the carers.

You are right about taking each day at a time. Hard to do though isn’t it! Well done to you too and best wishes to you and your husband  x

I am in the same situation. My wife was diagnosed with glioblastoma very nearly two years ago. At the end of January this year there she was in the hospice for two weeks while they stabilised her and on the 24th February she came home with me as her carer. We have a hospital bed downstairs but until five weeks ago I was able to get her out into a wheelchair and could take her out into the garden. 

Then there was a decline and she became bed-bound followed by difficulties in swallowing her meds so syringe drivers were put in place. Someone said to me then that the end wouldn't be far away. That was nearly four weeks ago and I am running out of steam. I feel so guilty that the thought "how much longer?" keeps running through my head.

Last night she was hallucinating and became very agitated, trying repeatedly to get out of bed and became really frustrated with me because I couldn't understand her. I am convinced that she knows what she wants to say but the words come out at random. (The tumour is sited in the speech centre of the brain so things can only get worse.) In the end I gave her a lapazoram prescribed for just this sort of situation, but it didn't sit easy with me.

Judokat, you are not on your own (although it feels like it a lot of the time). This forum is a good place with a lot of good people. 

Thank you. The way you are feeling sounds so familiar to me. I keep thinking ‘how much longer’ too and feel terrible, but it’s no life for my husband or me. If he could get better it would be different and I’d be willing him to live. People say he doesn’t seem to be getting any worse and it just makes me feel desperate and then guilty for feeling that way. 

I don’t think people realise how tiring it is to be caring for someone who can’t do anything for themselves. My brother is coming to stay with me for a few days to be with him so that I can take the grandchildren out as it’s half term. I’m looking forward to it but also it’s making me sad. We used to do those things together. The money we are now spending on his care (he needs the care of course, I don’t begrudge it) was meant to be spent on nice things! 

I wish you all the best and yes, the forum is a good place and does make life feel a bit easier. I’ve never done Facebook or anything so please bear with me if I get in a mess with it!