What happens now ?

[readsalotgirl63]

Hi all - back again for advice and guidance. FIL is terminally ill and being cared for at home by MIL. However she is now struggling to cope as he is very frail, increasingly incontinent and decreasingly mobile. There are carers going in morning and evening to help get him up and dressed/undressed and a volunteer sits with him once a week. The district nurses and staff from the local hospice also visit ( don't know how often). The hospice will not take FIL "until the end" and won't offer respite care.

MIL now feels he will need to go into residential care. As she had promised he would stay at home until the last possible minute this has not been discussed or planned for. DH has gone to see his parents but has no idea where to begin or how this all works. They are in England and my experience of the care system is in Scotland so is different - advice and guidance welcomed please.

We assume FIL will be funded as although they own their home MIL is still living in it and they have very little in the way of savings - less than the £23000 which I believe is the limit. If he is funded does he have any say in where he would go ?

Many thanks

[BubbleGumBubble]

Are adult social care involved? If not you need to contact them. They will go through the processes with you.
Also try carers charities in your area for support for mil.

I am so sorry your family is going through this. We lost dear fil 1 year ago next month in similar circumstamces.

[Jugglingballs65]

Ask the District nurses to do the Continuing health care CHC checklist.
He may quaify for funded care from health depending on his level of need.
If not the port of call will be Adult Services.

[readsalotgirl63]

Thanks for that - DH thinks MIL has a meeting with social services next week which I think is with adult social care. So far there has been no involvement with social services ( as far as I can tell) as every time we have raised this the suggestion has been rebuffed. DH and I were also not sure how much overlap there is between the local authority social services and the hospice. I think that "referrals" and assessments carried out thus far have been via the hospice but MIL has been extremely cagey and very unwilling to discuss the situation with DH or his sister. We live several hundred miles away and trying to get info from MIL has been like pulling teeth. DH has been told on more than one occasion that it is none of his business - which has been both frustrating and distressing as he now feels completely out of the loop and powerless.

I will also suggest to DH that he ask the district nurses if a CHC check list has been completed and if not if this can be done. If this hasn't been done will social services ask for this or does DH/MIL need to request it ?

Once again many thanks

[Jugglingballs65]

You can ask Adult Services to fill it in as well, can be done by a social worker but often better if it's done with more than one professional. The patient and family must be involved in this. There should be someone at the Hospice who could advise too.
It is very hard to get but as he is terminally ill he may get it on 'fast-track'
Google Continuing Health Care for more info.

[readsalotgirl63]

Thanks Juggling - I did google last night after your first post and started to wade throught the info. Have heard today that the hospice social worker is arranging respite in a local care home - apparently funded by the NHS. This is good news for MIL who is exhausted and has coped remarkably well but I think it will be distressing to both her and SIL as they know FIL would rather stay at home.

Am I correct in thinking that NHS funded care is not the same as Continuing Health Care - or have I got that wrong. Funding appears to be more centralised in Scotland - so I'm still trying to grasp the intricacies of the English system.

[Jugglingballs65]

Hospice care is free, funded partly by NHS and partly charity.
NHS care outside of hospital and community care teams is CHC. CHC replaced nhs care in longstay nhs hospitals for those deemed to fit the criteria.

[readsalotgirl63]

Thanks Juggling. I'm not sure FIL has had the CHC assessment - altho it has been agreed he will be fastracked which I'm assuming ( hoping) means they think he will fit the criteria. I don't want MIL to be landed with an unexpected bill for respite care or for her to have any more stress than she already has

Sadly FIL appears to be deteriorating rapidly. I am anxious that if he has not had the CHC assessment there will be delay in arranging the respite care and MIL will have to struggle on. She has coped remarkably well but admits herself she is close to breaking point.

We are not close enough to be of much practical help and SIL has a fulltime job and kids of her own to deal with.

Thanks again

[Scrappysmammy]

Can your carers not come in more frequently, I used to do care work, extra calls were arranged by either the family or social services or age concern, maybe try social services first as they'll have knowledge about funding etc.

[readsalotgirl63]

Apologies scrappy - thought I'd posted a response but not sure what happened to it . FIL now in hospice - was supposed to be for reapite as MIL at breaking point however he has deteriorated and I think he is unlikely to come home. Have to say I think this is for the best as I don't think MIL or SIL had fully realised the implications of promising that he would stay at home until the very end until last week or so. I do feel he is in the best place now and MIL can spend time with him without any anxiety about dealing with the practical issues.