Hi, I wondered if anyone can offer advice about my dilemma.
My dad has been in hospital for the last 3 weeks, having gone off his feet a few days before. On admission he was diagnosed with a twisted bowel, but we agreed with the doctors that surgery and a stoma was not appropriate as he has severe AZ, and therefore expected him to last only days/weeks. Unusually his bowel spontaneously untwisted, but by then he had deteriorated. Prior to admission, he lived at home with my mum with 3 days a week at daycare. He was able to walk, and ate OK but needed assistance. Now he is completely vacant, is not eating or drinking (coughs at even a teaspoon of food or drink) and hasn't been out of bed for at least 2 weeks. He's on a drip but has lost over a stone in the last 3 weeks.
The doctors have advised that he is no longer acutely unwell (eg. no bowel issues, no pneumonia, no infections, no stroke), but that it seems likely this is a progression of his condition. They have tried to do a swallow assessment, but failed as he can't follow instructions. They are arranging for a nutritionist assessment next week, but the likely end result is that they will now withdraw IV fluids for end of life (we have declined PEG or NG feeding). To be honest, he has just stopped engaging with us, and clamps his mouth shut when anyone tries to feed him. I wonder whether he has made a purposeful decision that he has had enough or whether he has just completely gone mentally.
So my dilemma....
The hospital are talking about discharge for end of life - either home or nursing care home. My mum's automatic reaction is that she wants him home, but I am not sure that this is the right thing for either of them. He hasn't recognised their house as his home for 2 years regardless. We will be speaking with the discharge nurse next week to plan, but I want to make sure we ask the right questions.
My concerns about him going home (I don't know if these are true or not): he won't have access to pain relief, mum will be alone with him most of the time, it will traumatise her (neither of us know how horrible this is going to get), association of their home with his death...
Otherwise we would hope to get him into the nursing home where he goes for daycare. At least there, they have people who have seen it before, he'll have easier access to pain relief injection, mum will be supported by staff who she already knows and likes.
I'd be grateful for any advice. What things do we need to consider in making this decision?
Many thanks
My dad has been in hospital for the last 3 weeks, having gone off his feet a few days before. On admission he was diagnosed with a twisted bowel, but we agreed with the doctors that surgery and a stoma was not appropriate as he has severe AZ, and therefore expected him to last only days/weeks. Unusually his bowel spontaneously untwisted, but by then he had deteriorated. Prior to admission, he lived at home with my mum with 3 days a week at daycare. He was able to walk, and ate OK but needed assistance. Now he is completely vacant, is not eating or drinking (coughs at even a teaspoon of food or drink) and hasn't been out of bed for at least 2 weeks. He's on a drip but has lost over a stone in the last 3 weeks.
The doctors have advised that he is no longer acutely unwell (eg. no bowel issues, no pneumonia, no infections, no stroke), but that it seems likely this is a progression of his condition. They have tried to do a swallow assessment, but failed as he can't follow instructions. They are arranging for a nutritionist assessment next week, but the likely end result is that they will now withdraw IV fluids for end of life (we have declined PEG or NG feeding). To be honest, he has just stopped engaging with us, and clamps his mouth shut when anyone tries to feed him. I wonder whether he has made a purposeful decision that he has had enough or whether he has just completely gone mentally.
So my dilemma....
The hospital are talking about discharge for end of life - either home or nursing care home. My mum's automatic reaction is that she wants him home, but I am not sure that this is the right thing for either of them. He hasn't recognised their house as his home for 2 years regardless. We will be speaking with the discharge nurse next week to plan, but I want to make sure we ask the right questions.
My concerns about him going home (I don't know if these are true or not): he won't have access to pain relief, mum will be alone with him most of the time, it will traumatise her (neither of us know how horrible this is going to get), association of their home with his death...
Otherwise we would hope to get him into the nursing home where he goes for daycare. At least there, they have people who have seen it before, he'll have easier access to pain relief injection, mum will be supported by staff who she already knows and likes.
I'd be grateful for any advice. What things do we need to consider in making this decision?
Many thanks