I've just joined this group because I feel I don't always do the best I could for my husband. I didn't expect to be saying goodbye to him so soon. I feel I am grieving for him before he is gone , happy at the moment that he is stable but sometimes feel life will be so much easier when he is gone because I can get on quickly. I don't know how long my husband will be around but it's unlikely to be more than a year so how do you cope with the stress of knowing the future you planned won't happen and the daily struggle to be patient while he get's things wrong or does something so slowly?
Hi Ferret8, I am so sorry to hear about your husband. I can empathise with how you feel. My husband (51) was diagnosed with a terminal brain tumour a year ago (GBM4) and given 12-15 months as a life expectancy. I'll not lie, it's been a tough year. It's so hard trying to hold onto the positives when you know things are gradually ebbing away. I too feel as though I have grieved for the person he was before his GBM4 and no doubt in time will grieve for the person he is now.
It's a stressful unrelenting journey but, trust me, you are stronger than you think you are and you are doing an amazing job. I can't really say how you cope when things go wrong as, touch wood, my husband has been stable for most of the last year. All I can advise is to take care of yourself, take time for "me time" as you'll need it to recharge your batteries. Take any help and support that's offered even if it just gives you a break for an hour to go to Tesco!
I often describe my husband to friends and colleagues who don't really understand that its like living with an over tired unruly toddler with a touch of dementia. Be led by him as to how much care and attention he needs and try, I know its beyond hard, to be patient.
All the emotions that you are going through are normal. We all go through them. There is no right way or wrong way to feel We just feel. I;ve also learned that hard as it is, there's no harm in looking to the future too once he's not around. I do half joke that I have a "life after" list and top of it is a thicker duvet (I feel the cold, he doesn't so our summer duvet is on the bed all year long!)
Not sure any of this has helped but please know you are not alone. This forum has been a great support to me over the past year. Reach out and vent whenever you feel the need.
Stay strong.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Completely understand.really struggling with this at the moment 
Thankyou! I would give my right arm for things to be stable I suppose you would also! have you been in touch with your local carers groups? I know they have meet ups in your local area to meet people who are going through similar. I would love to go just don’t have the time 
And I think it would be quite therapeutic to have a chat with other people experiencing similar. I have found that people close to me are very loving and well meaning but they truly have absolutely no idea what this is like. Wishing you well xx
