My husband is 42 and we have 2 under 5s.
He has been fighting for the last 3 years and have tried every treatment possible and finally a trial (which I think did give him a bit longer).
He has a huge legion on his leg which reaches from his knee all the way up and over his groin to his opposite hip which smells truly awful, a lump on his skull which is affecting his hearing and sight, a fractured shoulder, a new lump on his chest and is really hot all the time. He fell over on the way back from his last hospital visit and his leg just gave way, since then he has lost all of his confidence and he has changed so quickly since then.
We have home nursing and the District nurses visiting us every day. We've struggled with space and equipment, the mental load is next level. Keeping up with the pills he needs to take morning and evening, the changes in the prescriptions, picking up endless dressings, storing them and hoping beyond hope I get to spend an hour with him and he knows I am there. We have some great friends helping us and we are incredibly lucky for that. I miss him so much already.
I called the district nurses his morning because he had such a bad night, he had started to struggle to speak and clear his chest, at one point last night I thought he might drown himself. He hasn't really moved from his hospital bed since the fall and now isnt allowed out of bed. His voice is muffled, breathing laboured and he is exhausted. His dry mouth hasn't helped the situation either as its put him off eating almost entirely.
I feel so angry about the injustice, the loss of dignity, closeness, even communication. I want so desperately to keep him near, but wouldn't wish this suffering on to anyone.
We want to keep him at home until the end, but I am not sure how to explain this to our kids. Its so hard to know what to do for the best for all involved. My heart is breaking. Can anyone relate? It all feels so very hard.
