MIL had a stroke - what next?

CATS

Hi All,

My MIL had a severe stroke about 4 week ago and her left side has been left paralysed. She can only eat very soft food and is being fed by a tube to supplement. She is able to talk but not properly. She is very confused and doesnt make a lot of sense, her brain has swelled up a few times etc. The hospital have said that as there is nothing else they can do they are going to send her home in a couple of week after the swelling of the brain goes down. We are having a meeting with social services and the doctors but in the meantime I wanted to see if anyone has experience on what actually happens after she goes home. Will there be carer/nurse coming to take care of her? They own their own home but dont have a lot of savings, will the family have to pay for her care? what does actually happen?

Any ideas, suggestions, experiences will be great

Thank you

Amanda65

Sorry to hear about you MIL and hope her recovery continues. You might find the Stroke Association a useful point of contact with regards to what help she is entitled to and what to expect>

http://www.stroke.org.uk/

AnnieO1234

It does depend partly on what funding is available in your area. The stroke association is a fantastic resource as Amanda65 said. It obviously also depends on the needs/wants of the family too.

Certainly in my experience, but there was funding, for first 3 months a nurse was available 24/7 although we only used her during day. After that, it went to the normal carer people who come in so many times a day as needed to help with food, toilet, dressing, bathing etc as may be needed.

It's a hard thing to see, I recall one lady who was around 70ish who was in a similar state to your mother, had a second stroke and was much more with it afterwards - I have no idea why this happened.

Xxx

margaretclare

Make sure her left arm is supported, don't allow it to hang down. The shoulder-joint capsule can become loosened and this is very painful.

I'm surprised she doesn't seem to have had any rehab or physio? She shouldn't be sent home just to 'get on with it'. I second the suggestion for the Stroke Association.

CATS

Thanks all,

margaretclare, yeah we are shocked at this too, but they have said that there is nothing more medically that they can do and she is not alert or responsive enough to have theraphy, am sure its not the case but it feels like they are washing their hands and passing it to the family. I dont think she is in any state to go home but they say she will be more comfortable at home in her own surroundings. We are just worried as my FIL is elderly and we are not sure how he is going to cope with her as she needs to be fed, nappy changed, bathed in bed etc. We all live 2 hours away and have been making the trip daily to the hospital, we are just worried about what will happen when she gets home and the care.

She is lying in bed as she can not move, walk, sit on a chair etc so her arm is supported but will bear in mind

Mojisola

CATS wrote: »

am sure its not the case but it feels like they are washing their hands and passing it to the family.

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?

margaretclare

I completely agree. If she needs that amount of basic nursing care it will be very difficult to provide it in a home environment.

CATS

Hi Mojisola,

to be honest we are not sure of what we can and cannot ask for, hence my post . Thank you, I didnt realise we can refuse to take her home. That is the issue am not sure what we can ask for, who is responsible for sending a nurse/carer? does the family have to arrange that? or does the hospital so that? What is realistically expected? can a nurse/carer come twice a day? more if needed? who will fund that?

There has been no mention of a care home but I also think my FIL, BILs want her home but we are worried about her care and how that works

System

They cant possibly be thinking of sending her home if she is that bad surely?

CATS

also apparently social services have come to look at the house and assess her needs and have said that she can come home, they will order a hospital bed and equipment to hoist her up with, but that she can come home????

Mojisola

CATS wrote: »

to be honest we are not sure of what we can and cannot ask for, hence my post . Thank you, I didnt realise we can refuse to take her home. That is the issue am not sure what we can ask for, who is responsible for sending a nurse/carer? does the family have to arrange that? or does the hospital so that? What is realistically expected? can a nurse/carer come twice a day? more if needed? who will fund that?

There has been no mention of a care home but I also think my FIL, BILs want her home but we are worried about her care and how that works

There should be a multi-displinary meeting (involving family members, nursing staff, physio/OTs, mental health nurse, social worker, etc) to discuss what happens after hospital. Your mother's needs are the priority with your father's a close second.

Unless they can show that your mother's needs can be met by a care package arranged by social services (with a financial input from your mother if she has over the savings/income limits), they should not discharge her. The district nurses should be involved as well as carers if she comes home. They should also be providing a hospital bed with a special mattress to reduce bed sores.

It is normal for your father to want her at home but it may not be the best place for her. If they can get him to say that he wants her home, they will steamroll it through so could you get him to be circumspect - I'd like her to come home but only if that's the best place for her/only if enough care is provided/etc.

Get him to think practically - what will he do when something happens at 3am in the morning, say something simple like a leak from the pads into the bed - will he be able to deal with her, who will he call to help?