How do you cope with this?

Hi mspixie

Im sorry to hear you are going through this. It is both devastating and exhausting watching the one yo love deteriorate and knowing there is little yoi can do.

My husband died in october, I was his sole carer until the end when the hospice stepped in. His last months were lived in our living room

Im sorry your hospice doesnt provide support for carers, i dont know why that would be. Also your local authority. You could request a carer assessment which may throw up something you arent aware of. Also register with your GP as  a carer, they should have a mental health team you can see.

How you cope. I asked this question many times and somehow you just do. Draw on anyone, friends, neighbours even if its just to get shopping in. Come here to chat, we all get it here even if we dont have answrrs. Call macmillan if you havent already, they can support or signpust and help with things like benefits.

Just enjoy whatever time you can, we tried to get out when he was well enough but he took to his bed 2 months before he died and never left the house again . We just spent time together, watching rubbish telly and remembering the past. We also got accounts, passwords etc all in irder which nade it so much easier once he had gone.

Huge hugs to you, its an awful path to be on x

Dear Malengwa,

Thank you so much for responding to my post and I'm really sorry to hear about your husband,  I really appreciate you sharing your experience with me - as there's no support from the hospice for me specifically and there are no carers groups in my area for carers of people with a terminal illness, I genuinely have no idea what is to be expected of me or how we are supposed to cope and how best to support our loved one.  I think my partner is in the weeks before death now - he is sleeping a lot of the time and doesn't want to leave the house / do anything other than watch TV, so hearing about your experience and how it is pretty much what I'm living has been really helpful.  The hospice asked if we needed a bed today, so i think they are also thinking that this is a significant decline / indication.  We don't at the moment as our house logistically is a bit of a nightmare in terms of stairs and access to toilets, and the current set up is ok as he can manage stairs for now. I've not idea why the hospice does not offer support for carers in the community - it would be available if we went in to hospice, which he intends to do to die.  I think its s resource / staffing issue or possibly a commissioning one in my area.  In other areas support is available.

Thank you again for responding - it means and awful lot.