I've been looking after my husband for 10 months now and it is obvious there are not many more months left. I have been very strong until now but I am feeling the strain as he doesn't always recognise me as his wife, can get very agressive and then just sleeps.
Very recently I have been having horrible thoughts about how this is going to end and don't want him to suffer. I can tell i am feeling stressed as I keep getting pins and needles in my face. We have all agreed for him not to go into hospital and to stay at home if possible - but I am getting increasingly worried as to what this may look like.
Any suggestions / things to watch out for when the end is in sight. I want him to have dignity and no pain and so far we are achieving that but I am starting to struggle now things are unfortunately progressing in the wrong direction.
Thanks Poppy gs
Dear Poppy gs
I am really sorry to hear about your husband and I cannot imagine what you are going through..
I cannot help you with your questions I am afraid but I just wanted to ask you to try and look after yourself as much as you can... I know sometimes it’s the hardest thing..
I am looking after my husband too and we have 2 small children and still in a full time job ( working from home ) so I have my hands full... we have to keep reminding each other though that little time off is the most critical to keep us carers going ( and sane) ..
Thanks for your reply. Please be careful doing everything, I worked for the first 6 months and when my husband became immobile I then had to make the decision what to do. I have therefore put my job on hold (I work for a very supportive company) and I am still exhausted. You must be careful not to make yourself ill as you are the one everyone relies on so please look after yourself.
All the best with everyone and take time for yourself x
Thank you for your message... yes I know exactly what you mean but we still have to pay bills etc. My husband has been off work since January and he used to be self employed so he doesn’t get any sick pay etc.
I am lucky because I love my job and I can do it from home which actually gives me a bit of break from everything else we go through. I do realise though I may get to a point when I won’t be able to do it ...
let’s try and stay strong, all the best
Hi poppy gs, maybe if you arrange a meeting with your palliative care team or gp and explain your concerns you may get some advice. I know that to a certain extent I feel exactly the same as you. I was told we take things day by day and deal with problems as they arise. Macmillans on the phone are brilliant with emotional support and you can also speak to nurses. Hope this helps xx
Yes the Macmillans team have been amazing
THanks for your reply
My husband has this type of brain tumor. How this will end is the stuff my nightmares are made of.
I think the Glioblastoma group has a discussion on this very topic. I remember seizures being mentioned near the end.
It's going to be a rough ride for us both. My plan is to accept all the help I can get and try to look after myself if/where I can.
All I want for my my sweet hubby is no pain and a speedy exit.
Obviously, I wish you well, and my heart hurts for you.
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