MIL had a stroke - what next?

mel48rose

Surely you should be entitled to some care eg, carers visits etc. The family cannot surely have to do all the care themselves? What if they had health issues too?

Prothet_of_Doom

Mojisola wrote: »

I wouldn't be that sure.

You will have to be prepared to fight for what your mother (and father) needs.

Who is going to provide care for her at home - wash, dress, feed her, change her incontinence pads, turn her to prevent bed sores, etc? Unless a good care package is put in place to deal with her needs, you can refuse to let her come home.

Has no-one mentioned the option of a nursing home? It sounds as if she could be entitled to NHS funded residential care - are they trying to save their budget?

If the stroke association have a family support worker, they can help fight for her entitlements. (Wifey did this job for a while and the stress of fighting with councils and NHS people, who knew the rules, was incredible)

Mojisola

Another vote for getting help from the Stroke Association - https://www.stroke.org.uk/support/search

If you have a local group, they should be genned up on dealing with the local hospitals, be able to recommend good nursing homes, etc. (PoD got in before me!)

Even if your mother goes into a home initially as a transition, it will give you all a chance to see what care is needed and whether it is possible to support her at home.

Also, and I'm sorry to raise this, but is the hospital trying to say that they don't expect her to live for very long and are basically saying "she can come home to die"?

CATS

Hi Mojisola,

I also thought of this, its almost like they are saying there is nothing else we can do here. Lat week my BIL and FIL were asked to sign a document that said if anything further happens they will not revive her or put her on live support. I am not sure what that means tbh but its all a bit of a blur, nobody can give us straight answers

hazyjo

My friend's husband had a serious stroke in 2012 and was in hospital for over a year. They get a tonne of help and are still entitled to free cabs, help, etc. He was in his early 40s - really don't know if that makes any difference. In fact, I think it was only last month he was discharged, and I suspect it's still not for 7 days a week.

You probably don't want to hear that!

Definitely push for all you're entitled to. Re the forms - do you think they're expecting a second stroke and aren't keen to do too much at this stage because of that? Have they said anything along those lines? Don't let them fob you off. Her quality of life - whether for a month or 20 years - should be the same surely... You need to find out how much damage is permanent and how much can be improved. How old is she?

Good luck - and sorry to hear your news.

Jx

CATS

hazyjo, they are not saying anything, they say she can get better, she can get worst, she can have a second stroke, she might not. They just keep saying there is nothing more they can do but cant explain what that actually means, they said operating on her brain is more dangerous than to just let it heal naturally. She is 74, I think the way she is now is what they are expecting, they have said she wont recover fully but have not said how much she is likely to recover. It's all so vague and fluffy at the moment

hazyjo

It must be very distressing for you all. It's difficult to know what to suggest if you are discussing things very straightforwardly with them. After all the help my friend's husband's had, I can only put it down to age that they're not keen to do too much.

Try and keep communication going with ONE person at the hospital, two if can't be avoided. Sounds like you're hearing from several people (may be mistaken) and they will definitely be careful about contradicting what someone else may have already told you.

Jx

troubleinparadise

CATS wrote: »

hazyjo, they are not saying anything, they say she can get better, she can get worst, she can have a second stroke, she might not. They just keep saying there is nothing more they can do but cant explain what that actually means, they said operating on her brain is more dangerous than to just let it heal naturally. She is 74, I think the way she is now is what they are expecting, they have said she wont recover fully but have not said how much she is likely to recover. It's all so vague and fluffy at the moment

Dear Cats,

I'm afraid that is the truth - there is no guaranteed nor predictable outcome.

Recovery from a stroke takes as long as it takes, and how much recovery cannot be predicted.

I do believe that physical and speech therapy are helpful, but that also depends on what abilities there are at present, and whether there is any damage to cognition - if the person can actually understand what they are being asked to do, and therefore how much effort they can put into therapies themselves.

pmlindyloo

Having been through this with my mother I can entirely understand your concerns.

Your MIL is not going to be discharged yet so there is still plenty of time to make any necessary arrangements.

The difficulty most people have in similar circumstances is that the hospital is concerned with her medical care. As you know they want the beds back to admit other patients. This sometimes comes across as the medical staff seeming to be heartless and saying she will be discharged as there is nothing more we can do. They are basically concerned only with the medical care.

As you have been told there will now be meeting with social services and all those involved in her medical treatment.

At the meeting all the professionals will have an input (or will have written a medical report about her future care needs) and will make their own recommendations for future care.

You and the family should be a central part of this discussion and will be able to put your own points of view across. This is important because your FIL may not be 'thinking straight' and not realise how much care your MIL may need.

There are lots of possible outcomes - respite/temporary care in a nursing home/care at home with carers and equipment etc etc

Do not be rushed about the decisions and do talk to your FIL about the realistic problems of her being at home.

Whilst it is very true that being in your own home often accelerates any recovery it must be weighed up against the difficulties of such care. Often temporary/respite care in a nursing home gives everyone a bit of breathing space to make long term decisions.

AgeUK has some excellent guides and you might like to start by reading this one:

http://www.ageuk.org.uk/Documents/EN-GB/Factsheets/FS37_Hospital_discharge_arrangements_fcs.pdf?dtrk=true

Just a suggestion - before you go in the meeting with the social worker and other professionals make a list of questions you want to ask. My head was all over the place when I was there!

And I do agree that you must ask for the name of the assigned social worker and her/his contact details - otherwise you tend to get passed from duty officer to duty officer at social services.

Racheldevon

In addition to the good advice you've been given already, it's worth checking out Headway UK. I used to work for them and we worked with many adults who'd had a stroke. However, the other things mentioned above need fully exploring first