MIL had a stroke - what next?

belfastgirl23

Advice from a friend who had this situation in her family was never ever to take someone home before the special equipment and care package were in place. Whilst the person is in hospital, you have the bargaining power - they will do everything possible to get your MIL out of hospital. Once she comes out you have to fight like crazy for everything because it's your 'problem' (sorry that sounds bad but YKWIM) rather than theirs.

CH27

I know it's an upsetting time for you but you have to be firm on what you will & won't accept.
If she allowed to come home a proper care package in place you will have an awful job getting the help needed.
You have you be aware that your MIL may never get better than this & may even deteriorate.

CATS

Hi All,

Thank you for the advice, we had the meeting yesterday afternoon and I managed to read a few bits before going into the meeting from your links etc. They are going to be writing up a care plan and think they should have 2 carers coming in 4 times a day. The only thing they might not have in time is her wheel chair and a big chair that we need to get her out of bed for a couple of hours. I dont think we will be taking her home until we have all that equipment as I dont want to have to fight the council afterwards.
I think taking care of the practical stuff is ok, I am really struggling with how to support my husband emotionally, he is so heart broken and I dont know how to make it better, any suggestions on how you cope with the emotional stuff?

Thank you all

heartbreak_star

Excellent advice from everyone but I would also add...if a care worker proves to completely ignore their job title ask for a different one - Dad's "care worker" told me that if I wanted the best for my family I would give up my job and look after them, and that despite the fact Dad had two severe falls down the stairs, all we needed was a better bannister.

I have very little in the way of a temper but I'm quite surprised I didn't hit her.

Thankfully his next care worker was great and got him straight into a home - which was where he needed to be as he required 24hour care.


Edit: To support your husband, simply be there. Hug him, let him know you are there when he needs you, but don't push him to talk. His moods may be unpredictable and he might have a temper where he normally wouldn't. I was a proper daddy's girl, but didn't want to talk about how he was. I am still heartbroken to this day and we lost him 3 years ago. Sorry, that was a bit of a ramble!
HBS x

Mojisola

CATS wrote: »

They are going to be writing up a care plan and think they should have 2 carers coming in 4 times a day.

A few thoughts:

How long will the carers be there each time?

What exactly are the carers' jobs - just personal care or will they be changing the bed, washing sheets, cleaning, etc.

Will they be providing a hospital bed or a special mattress to prevent bed sores?

Has your FiL had a Carer's Assessment done by Social Services to see whether he can cope for the 20 or so hours a day when he is going to be alone with her?

Will your MiL be safe to be left alone if your Dad goes out for a couple of hours or is he meant to be there 24/7?

Flugelhorn

CATS wrote: »

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

CATS am really sorry to hear what has happened, re the for they signed - it is called a DNAR and is meant to be signed if an individual themselves or the relatives if the individual do not want active resuscitation if they have a cardiac arrest.

The form is not saying that they can't or won;t treat other things - it is just for the one specific circumstance.

If it is not signed and the heart stops then the staff have to do everything that can possibly be done to resuscitate - even if the person has many other problems which may make it unlikely that they would survive or be in a worse condition afterwards.

100% of the adults in this house are doctors and would personally not want to be resuscitated if we had other serious conditions but everyone must make their own decisions about this - and hopefully your FIL and BIL had it fully explained to them

PS re the care at home - the social services / discharge planning should have a meeting (MDT) to assess options - if everyone feels that she is OK at home (including FIL) then a care package will be determined. Don't ask me about the funding of this - I go cross eyed at this point and just have to sign to say that they are fit to be discharged from hospital. Other options are nursing homes etc.

Hope all sorts but don't let them discharge her until you are happy with what is planned.

CH27

CATS wrote: »

Hi All,

Thank you for the advice, we had the meeting yesterday afternoon and I managed to read a few bits before going into the meeting from your links etc. They are going to be writing up a care plan and think they should have 2 carers coming in 4 times a day. The only thing they might not have in time is her wheel chair and a big chair that we need to get her out of bed for a couple of hours. I dont think we will be taking her home until we have all that equipment as I dont want to have to fight the council afterwards.
I think taking care of the practical stuff is ok, I am really struggling with how to support my husband emotionally, he is so heart broken and I dont know how to make it better, any suggestions on how you cope with the emotional stuff?

Thank you all

How will your FIL cope when the carers aren't there?
Can carers be arranged to sit with your MIL for a couple hours a day twice weekly to enable yopur FIL to get out & about or he will go crackers.
What care will they be providing?

Money_maker

2 carers x 4 times daily sounds like its mainly personal care. When hoists are used, its normal to have 2 carers. I imagine they would do the morning call (change pad, wash, hoist to chair). Dinner call (possibly feed?, change pad, commode?). Tea call and bed call. Not sure about what will happen if your MIL is still having tube feeding too. This is a bit specialised for carers.

Money_maker

On reflection, I would refuse to have her at home if she were tube fed. Pretty sure you need nurses to attend to this, not home carers.

Unless your SS are particularly generous, calls to sit with patients are practically non-existent unless you pay privately.

CATS

Hi Flugelhorn,

From what you have explained and what they have said, it looks like either it wasnt explained properly or they didnt understand it properly. They are under the impression that the hospital have said they will not do anything about it and that the form was to agree that the hospital will do nothing. I dont think they understood fully that they had a choice. I am a little annoyed as they have kept this to themselves and not really told everyone about it or discussed it with anyone before making a decision. Can the consent be taken back?

@Mojisola - yes social services came round to assess the house and the needs and they will provide a hospital bed with a special mattress to stop the bed sores.

The role of the carers has not yet been discussed, hopefully we will know more once the plan is done, what kind of things can we expect the carers to do?

I dont think he has had an assessment at all so I will look into this. I assume he will have to be there 24 hours as she cannot be left alone at all. God there are so many practical things that we havent even thought about!