Rock and a hard place

Moleskin 9 years ago

1 reply

Hello everyone,

I am hoping that by posting my problems here someone may be able to suggest something I've not thought of as a solution!  My parents (84 and 82) live 40 miles from me (single parent, two children, part time job).

My father has recently been diagnosed with bowel cancer and the doctors are not suggesting intervention as he has a range of other health problems that mean he is not being considered for surgery.  He is currently in hospital (now entering his 10th week of being there aside from one brief period of discharge) and the hospital is advocating 24 hour nursing care is required (ie a nursing home).  He is being nursed on a bed (has a catheter) and very sleepy.  One discharge home collapsed within 48 hours as he (adjudged to be continent by the hospital) kept trying to get out of the hospital bed downstairs and make his way to the loo.  This led to him collapsing and my mother (unable to get him up again) had to summon the emergency services - resulting in a readmission.  No comode provided, didn't even get a visit from the district nursing team as he was discharged on a Thursday and they weren't scheduled to call until Monday.  No visit to the home prior to discharge to assess the arrangments .

My mother, since his absence from thier home, is really struggling to cope and seems to have some form of dementia.  Examples - she maintains he is in the house sometimes with her, she cooks meals for him.  At other times she seems 'normal' - so in conversation is ok and is managing to wash, dress, fed herself etc.  She is currently having tests to try and ascertain what the problem is. 

Am I being too optimistic to be looking for a solution that my father may be cared for at home (his and my mother's expressed wish) or do I give up and look for a nursing home?  Any suggestions, help or advice gratefully received.

Thanks!

TheHodCarrier 9 years ago

Hi Moleskin,

You are in a very difficult situation - not one I've actually been in, and with luck someone better-qualified to answer than I am, will contribute.

The following is all heavily reliant on 'my instinct'.

You didn't say if your dad is still mentally-capable ?  If he is, and if he wants to be at home, he has got far more chance of achieving that if he can argue for itself himself. But I am aware that 'the system' often finds it easier and perhaps less expensive, to try and get people who need a lot of support, into a care/nursing home. Also - and I regret that I might seem insensitive here - if he is considered 'at the end-of-life' I think there is more chance of him being able to stay (and die, if that is his objective {my own mum's main determination, was to die at home}) at home, than if he is going to live for many months or years, but will need a lot of care. It is easier to get reluctant care services to support a dying patient at home, when any extra cost or inconvenience (to the professionals) will only be for a few days or weeks, than to get them to commit to doing it for months or years. But it depends on your GP, how good local DN and OOH services are, and what sort of structure and planning the region has got in place.

If he manages to stay at home, but you think 999 are likely to become involved, and your dad doesn't want to be taken to hospital 'merely to be on the safe side', then his legitimate decision clashes with the default behaviour of 999 paramedics (and, indeed, of many district nurses) - so you/he will probably need support in the form of something from his GP to 'hold the horses' of 999.

The question of your mum's mental condition, and whether she has got dementia, is also a factor - much easier to fight the 'they both want to stay at home - and mum can look after dad, even if she would benefit from some support' case, if your mum isn't demented.

I'm not sure how helpful any of that is,

                                                 Best wishes, Mike

PS My dad got himself discharged from hospital (he had been in for about 6 weeks, and very poorly indeed for the latest two nights), when he was [almost certainly] dying. He arrived home, and died about 30 minutes later. We called a cover GP, who was confused but behaved sensibly. He told us he would need to report dad's death to the corner, but he did not involve the police (the next morning, we got a 'rather apologetic' phone call from the Coroner's Office, telling us that a hospital doctor had certified dad's death). About 2 hours after my dad had died, a DN knocked on the door to work out what care dad would need.

That was in 1997, but there are still issues about home-hospital co-ordination, etc.

By the way, my dad never said that he knew he was dying - he only ever said that he was very poorly. I knew that dad was dying, and I think my mum knew that dad was dying, but I don't think dad ever came to an acceptance that he was dying [although I can't be sure - when my mum died, it was very clear that she knew she was dying, and also that she wanted to die]. I only add that, because it is yet another possible complication.