Specialist care for an elderly patient
Discussion
Can anyone offer any information/suggestions/guidance please for a difficult situation we find ourselves in?
My MiL has been suffering from Alzheimers for a few years now, the extent of which seems veer from “you’d hardly know” to “who is this person who looks like the MiL but behaves very oddly”. Definitely getting progressively worse. She is also physically a small, fairly frail person. Aged mid-seventies.
The inlaws live in Suffolk. Last week they were visiting in Sussex when she was taken ill with massive abdominal pain and subsequently admitted to Royal Sussex hospital in Brighton. After tests and scans they discovered a bowel tumour. They operated, with no guarantees that she would actually survive the op (she did) and found that the tumour was malignant, and that the cancer has spread elsewhere. Full extent not yet known but due to her age and fragility, they have said that it’s not treatable. Vague estimate from them that she might have 9 months. The op has left her with an ileostomy bag, and on at least one occasion her mental state has left her such that she has been asking why someone has left a bag on her stomach and has tried to pull it off.
So at present she is still in Brighton Hospital, 125 miles from home. At some point they will look to transfer her to a hospital local to home. However, once she is discharged from the post-op care, she will need looking after. The FiL, whilst he still has all his marbles, is in all reality not going to be capable of this for a variety of reasons.
What nobody seems to be able to tell us is what options will be available to them. The (Brighton) hospital have only said that getting care for her will be “difficult”.
I haven’t any real experience of this but from what I can see the options would be:
- NHS/Local Authority care home
- Private care home
- Some sort of nursing care in her own home
NHS/LA home – I have no idea whether this option even exists or would be made available? Also the FiL is worrying himself senseless about the financial aspect. They own their own home, which is of a reasonable value (north of £500k, possibly by a fair bit, although it needs extensive modernisation) but, of course, it is HIS home too. Would he be expected to sell up to find his wife’s care and if so is that capped/limited or what? Or is his “home” protected?
Private home – the only point of reference we have here is that a different relative elsewhere in the family is currently in a home, she has some level of senility/dementia issues but is largely able to look after her own basic needs. That home costs c.£1500 per week. Presumably specialist care would cost more?
Nursing care – at a minimum they would need someone visiting the house several times a day. But then the question of night-time care arose. What happens if, for instance, she pulls the bag off herself in the middle of the night? On that basis it’s wondered whether 24-hour cover would be needed. Is that sort of thing available, and do they then live-in, or work shifts and just turn up for their shift? Another side-issue (but relevant I think) is that the MiL is a very heavy smoker, probably c.60 a day, and if she is at home that isn’t going to stop. Being in the house is like standing halfway up a chimney most of the time. Would a care person be likely to refuse to work in those conditions? Would, in fact, it be illegal to employ someone and ask them to work in that environment, under the smoking in the workplace regs?
So many questions, I know. Nobody is telling the family very much at the moment so, on top of their immediate distress, they are considering all manner of worrying future scenarios. I haven’t been in to the hospital myself yet, it’s not local to me and the MiL doesn’t want any visitors other than spouse and children, otherwise I might be able to ask more questions, although it does seem that the hospital staff are very non-committal anyway.
If you have any knowledge of any of the above, all info would be really helpful and useful, thanks.
My MiL has been suffering from Alzheimers for a few years now, the extent of which seems veer from “you’d hardly know” to “who is this person who looks like the MiL but behaves very oddly”. Definitely getting progressively worse. She is also physically a small, fairly frail person. Aged mid-seventies.
The inlaws live in Suffolk. Last week they were visiting in Sussex when she was taken ill with massive abdominal pain and subsequently admitted to Royal Sussex hospital in Brighton. After tests and scans they discovered a bowel tumour. They operated, with no guarantees that she would actually survive the op (she did) and found that the tumour was malignant, and that the cancer has spread elsewhere. Full extent not yet known but due to her age and fragility, they have said that it’s not treatable. Vague estimate from them that she might have 9 months. The op has left her with an ileostomy bag, and on at least one occasion her mental state has left her such that she has been asking why someone has left a bag on her stomach and has tried to pull it off.
So at present she is still in Brighton Hospital, 125 miles from home. At some point they will look to transfer her to a hospital local to home. However, once she is discharged from the post-op care, she will need looking after. The FiL, whilst he still has all his marbles, is in all reality not going to be capable of this for a variety of reasons.
What nobody seems to be able to tell us is what options will be available to them. The (Brighton) hospital have only said that getting care for her will be “difficult”.
I haven’t any real experience of this but from what I can see the options would be:
- NHS/Local Authority care home
- Private care home
- Some sort of nursing care in her own home
NHS/LA home – I have no idea whether this option even exists or would be made available? Also the FiL is worrying himself senseless about the financial aspect. They own their own home, which is of a reasonable value (north of £500k, possibly by a fair bit, although it needs extensive modernisation) but, of course, it is HIS home too. Would he be expected to sell up to find his wife’s care and if so is that capped/limited or what? Or is his “home” protected?
Private home – the only point of reference we have here is that a different relative elsewhere in the family is currently in a home, she has some level of senility/dementia issues but is largely able to look after her own basic needs. That home costs c.£1500 per week. Presumably specialist care would cost more?
Nursing care – at a minimum they would need someone visiting the house several times a day. But then the question of night-time care arose. What happens if, for instance, she pulls the bag off herself in the middle of the night? On that basis it’s wondered whether 24-hour cover would be needed. Is that sort of thing available, and do they then live-in, or work shifts and just turn up for their shift? Another side-issue (but relevant I think) is that the MiL is a very heavy smoker, probably c.60 a day, and if she is at home that isn’t going to stop. Being in the house is like standing halfway up a chimney most of the time. Would a care person be likely to refuse to work in those conditions? Would, in fact, it be illegal to employ someone and ask them to work in that environment, under the smoking in the workplace regs?
So many questions, I know. Nobody is telling the family very much at the moment so, on top of their immediate distress, they are considering all manner of worrying future scenarios. I haven’t been in to the hospital myself yet, it’s not local to me and the MiL doesn’t want any visitors other than spouse and children, otherwise I might be able to ask more questions, although it does seem that the hospital staff are very non-committal anyway.
If you have any knowledge of any of the above, all info would be really helpful and useful, thanks.
A relatively ordinary nursing home would on paper be able to meet her needs - most of them support people with dementia and people receiving palliative care for cancer - but you're right, that's not going to work terribly well.
You are probably going to want to find out about Continuing Healthcare. This is care for people with very significant medically related support needs, funded by the NHS, basically when the significance of those needs mean the person might otherwise end up stuck in hospital. It can and often does fund care in the person's own home, although it wouldn't stop her from eg accessing a hospice on an as-needed basis, and it can also be used to fund a nursing home placement if that's what's right for her.
It probably wouldn't be a nurse provided but a series of well-trained carers, and that's fine, as long as you have access to actual nursing input when it's needed (hospice or community palliative care team probably). Continuing care could provide someone to sit up with her, or someone to sleep over (cheaper!) but wake up and provide help when needed, which is a good backup if eg bag coming off is not a regular occurrence but obviously needs responding to promptly if it happens.
There are garment options of various kinds to help keep wandering hands away from ostomies and the like, and that might also be worth exploring.
All the very very best.
Continuing Healthcare: http://www.nhs.uk/conditions/social-care-and-suppo...
You are probably going to want to find out about Continuing Healthcare. This is care for people with very significant medically related support needs, funded by the NHS, basically when the significance of those needs mean the person might otherwise end up stuck in hospital. It can and often does fund care in the person's own home, although it wouldn't stop her from eg accessing a hospice on an as-needed basis, and it can also be used to fund a nursing home placement if that's what's right for her.
It probably wouldn't be a nurse provided but a series of well-trained carers, and that's fine, as long as you have access to actual nursing input when it's needed (hospice or community palliative care team probably). Continuing care could provide someone to sit up with her, or someone to sleep over (cheaper!) but wake up and provide help when needed, which is a good backup if eg bag coming off is not a regular occurrence but obviously needs responding to promptly if it happens.
There are garment options of various kinds to help keep wandering hands away from ostomies and the like, and that might also be worth exploring.
All the very very best.
Continuing Healthcare: http://www.nhs.uk/conditions/social-care-and-suppo...
Hello again, back for some more information please. Three weeks tomorrow since this started and the MiL is still in hospital, although she was moved from Sussex to Suffolk about 10 days ago.
Her post-operative state is OK-ish; she's eating (a little) and drinking (a little) but complaining of stomach pain which is probably related to the spread of the cancer, although apparently the medical staff aren't too bothered about this. They have deemed her fit to be discharged as of today but as you will see below, the family can't accept her.
Her Alzheimers has gone off a cliff. I don't know whether it is technically still Alzheimers, or whether she has completed demented. She's delirious, she accuses her husband of 50+ years of plotting against her, writes notes to the nurse saying he's not to be trusted, she worries about being late for her appearance in a West End show, she panics about getting away from the car because it's on fire....etc etc.
Mercifully the immediate family have reconsidered their intention to take her home and look after her themselves with input from carers, as they now realise this will simply be impossible. FlyingMeeces, thank you for the information on continuing care, we have been looking into that, but it's now clear that it isn't going to be feasible. The various departments in the hospital, and in Social Services, have all now started playing the "how terrible, yes, she definitely needs help, but it's not us" game, which is adequately frustrating. Do you think an "ordinary" care home will be able to deal with her? She has been wandering all around the hospital at night, waking other people up, eating their food, etc, really making a pest of herself. Or is there something specific which we need to look for in any home?
Related to that, if anyone can recommend a suitable facility in the general environs of Ipswich, that would also be really helpful.
Thanks all.
Her post-operative state is OK-ish; she's eating (a little) and drinking (a little) but complaining of stomach pain which is probably related to the spread of the cancer, although apparently the medical staff aren't too bothered about this. They have deemed her fit to be discharged as of today but as you will see below, the family can't accept her.
Her Alzheimers has gone off a cliff. I don't know whether it is technically still Alzheimers, or whether she has completed demented. She's delirious, she accuses her husband of 50+ years of plotting against her, writes notes to the nurse saying he's not to be trusted, she worries about being late for her appearance in a West End show, she panics about getting away from the car because it's on fire....etc etc.
Mercifully the immediate family have reconsidered their intention to take her home and look after her themselves with input from carers, as they now realise this will simply be impossible. FlyingMeeces, thank you for the information on continuing care, we have been looking into that, but it's now clear that it isn't going to be feasible. The various departments in the hospital, and in Social Services, have all now started playing the "how terrible, yes, she definitely needs help, but it's not us" game, which is adequately frustrating. Do you think an "ordinary" care home will be able to deal with her? She has been wandering all around the hospital at night, waking other people up, eating their food, etc, really making a pest of herself. Or is there something specific which we need to look for in any home?
Related to that, if anyone can recommend a suitable facility in the general environs of Ipswich, that would also be really helpful.
Thanks all.
Sounds like you'll need a home that specialises in dementia care. As the disease progresses they tend to wander into each other's room and pick stuff up/wear other people's clothes as they forget the concept of ownership. Stuff is just stuff...
There's all manner of challenging behaviour associated with the disease, a home that specialises in it is probably better placed to offer appropriate care. General purpose homes are better suited to people who still understand the concept of privacy and personal space amongst other things.
There's all manner of challenging behaviour associated with the disease, a home that specialises in it is probably better placed to offer appropriate care. General purpose homes are better suited to people who still understand the concept of privacy and personal space amongst other things.
1. Ensure a comprehensive screen for infection has been done. Usual culprits post op are urine or wound infection. Are they checking her bloods from time to time?
2. Ensure she is adequately hydrated. Fluid balance with an ileostomy can be tricky. If in doubt they could send a urinary sodium
3. Ensure a full dementia screen has been undertaken including a CT brain
4. Ask for a care of the elderly review and/ or elderly care pschiatry review
5. Ask for a best interests meeting with family and the ward team to determine the ongoing management. Ideally a medical input of registrar or consultant level should be there for such a complex case.
6. Ensure she is not still on masses of pain killers that are making her confused
Often the worsening confusion is a result of an unfamiliar environment and/ or infection and/ or medications making the underlying dementia worse but ensure there is not another medical reason. A good care of the elderly physician will be experienced in this scenario. ask for a review by one if it has not been done.
Good luck
2. Ensure she is adequately hydrated. Fluid balance with an ileostomy can be tricky. If in doubt they could send a urinary sodium
3. Ensure a full dementia screen has been undertaken including a CT brain
4. Ask for a care of the elderly review and/ or elderly care pschiatry review
5. Ask for a best interests meeting with family and the ward team to determine the ongoing management. Ideally a medical input of registrar or consultant level should be there for such a complex case.
6. Ensure she is not still on masses of pain killers that are making her confused
Often the worsening confusion is a result of an unfamiliar environment and/ or infection and/ or medications making the underlying dementia worse but ensure there is not another medical reason. A good care of the elderly physician will be experienced in this scenario. ask for a review by one if it has not been done.
Good luck
this situation should be covered under the Continuing Healthcare regs. essentially, health funding as opposed to residential/social care funding. she needs nursing care.
hoops will need to be jumped through but the CHC have algorithms which will determine level of funding. the skill (art?) is getting that assessment done. speak with hospital social work team (Care Act - duty to assess need under Sec42), palliative care team etc for signposting. the CCG will need to pick this funding up
also, when considering her seemingly sudden cognitive decline keep brain secondaries in the mix. not worth further investigations but it's a possibility. additionally, frail elderly folk tend not to recover as quickly from major surgery for all kinds of reasons; she may appear to be making mental progress but that'll just be to do with getting over the post op stuff - her mental function will not improve overall.
paul
hoops will need to be jumped through but the CHC have algorithms which will determine level of funding. the skill (art?) is getting that assessment done. speak with hospital social work team (Care Act - duty to assess need under Sec42), palliative care team etc for signposting. the CCG will need to pick this funding up
also, when considering her seemingly sudden cognitive decline keep brain secondaries in the mix. not worth further investigations but it's a possibility. additionally, frail elderly folk tend not to recover as quickly from major surgery for all kinds of reasons; she may appear to be making mental progress but that'll just be to do with getting over the post op stuff - her mental function will not improve overall.
paul
Thanks for all the replies, that's really helpful.
Ref the continuing care, they originally indicated that they would help but have now said that because she is "fit" enough to be discharged, and because they (the continuing care people) haven't been officially advised that her condition is terminal, even thought this was re-confirmed to the family yesterday, they can't/won't help and the family need to go back to Social Services. Who have already said no.
The family are in turmoil, the MiL is distraught (when she's lucid) and everyone else seems to be looking the other way.
I'll pass on all the points above and get them to try those, thanks v much.
Ref the continuing care, they originally indicated that they would help but have now said that because she is "fit" enough to be discharged, and because they (the continuing care people) haven't been officially advised that her condition is terminal, even thought this was re-confirmed to the family yesterday, they can't/won't help and the family need to go back to Social Services. Who have already said no.
The family are in turmoil, the MiL is distraught (when she's lucid) and everyone else seems to be looking the other way.
I'll pass on all the points above and get them to try those, thanks v much.
Gassing Station | Health Matters | Top of Page | What's New | My Stuff