End of life care

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Hello, In September my husband had what we thought was a stroke, we went to the hospital and after some confusion as to what hospital we should go to as we live on a border of two County's we went to the smaller one then after 12 hours in a&e and after a ct scan that showed a blockage we we're sent to the bigger hospital to the their stroke unit, my husband was there for 12 hours then realised with medication. We went home and for 4 weeks struggled as he seemed to get worse, I then contacted the stroke association, who were amazing and said we should have had home from hospital community care 48 after leaving hospital, so then they fought over which County would take this on. So then he was getting intensive support, speech, physio, occupational therapy, the lot. But he was getting worse. I pushed for a follow up hospital appointment and a doctors appointment all said it was because treatment started late. So we carried on until December when he fell over as by now his mobility, speech, understanding were all really bad. Again there was the which hospital to go to. Again a ct scan was done, this was a Friday, so no real answers. Doctors kept saying things had changed, and an mri was done, eventually the MDT looked at the results, he was moved to the bigger hospital, one doctor said it was a tumor, they started him on steroids, he was better almost within half hour, I had hope, he was going to get better, they talked about biopsy and chemo etc. Then on Monday I was told it was 3 aggressive tumours, a biopsy would be to dangerous, there was nothing they could do, go home and have a good Christmas! Which we did, he was on 8 steroids a day so he was good, but when we had to reduce them as he was getting aggressive and unpredictable, he started to show all the symptoms he had before. So today I'm spending another day sat with my husband who for what ever reason does not except his diagnosis or rhe tumors are effecting that part of his brain so he tells everybody it's a stroke and as soon as he can talk again properly he will go back to work. I cant talk to him about it all, he has heard it all, and we have a district and palliative nurse weekly so he must understand something. But it's just so hard now, he has lots of visitors but we never talk about him dying, I can see he's deteriorating, I swing from anger of it all to grief, to fear of him dying at home, to wanting him to be at home, to guilt at not being at work, to planning after, to not crying infront of him, keeping family up to date, the list is endless! He is sleeping a lot now in the day, we have all the stuff, hospital bed, commode etc but he insisted on climbing the stairs and sleeping in our bed which is fine, I'm trying to stay positive with him and everyone but it's hard. He's still eating and drinking well, but will just sit in his chair. We try and do family stuff and he tries so hard to engage but will be totally wiped out after. He is 67 years old and I'm 54, we had so much planned for our retirement. We both work full time, it's just so unfair! Family keep saying he seems well, but they don't see what i see, I was told 1/2 months. He's such a fighter,  I know now the steroids have been reduced it will get worse, and I've no idea if I can do this! 

  • Hello   I have just noticed your post and the fact it's not been answered by any other Community member. 

    I am so sorry to read of your husband's journey and the situation you find yourself in. By me replying, your post will be "bumped" back to the top of the forum and be seen by other Community members and hopefully they will respond with some great advice.

    My personal opinion is you need some extra help and I feel your best course of action would be to contact our helpline on 0808 808 00 00 (8am to 8pm 7 days a week). If you feel unable to deal with this please come back to me and I will see what I can do for you,

    I hope this helps.

    Best wishes- Brian.

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  • It is so hard isn’t it, the not knowing … my husband also sadly has cancer, he’s done amazing on immunotherapy but it’s just starting to give him side affects… just awful