MIL had a stroke - what next?

duchy

Yes a DNR can be cancelled and indeed should be if the next of kin (presumably your FIL) is not in agreement/didn't properly understand it.

Frankly the way the system works sickens me- Hospitals are under massive pressure to free up beds but the support system once home is patchy. All sorts of things will be "mentioned" but if not in place before dischrge often don't happen or the family have to fight.It is assumed families will do more than is physically possible sometimes - and there is a degree of emotional blackmail often going on. My Mum wanted and needed rehab -it was offered then withdrawn once they realized I lived in the same house- despite the fact I worked and had a disabled child , I had to literaly say she couldn't come home as I couldn't care for her and they definitely tried the guilt trip route. I felt awful but it was what my Mum wanted and needed - and she got it and it made a massive difference. It was emotionally difficult and intimidating to get though .

Be very clear about what is possible for the family to manage -and don't agree to "try it for a week or two" if it doesn't seem possible or sustainable long term. Getting care "upgraded" once home is far harder.

Mojisola

CATS wrote: »

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!

It's really important to consider the main carer's health and well-being as well as the person needing care.

Please don't underestimate the effect of being on-duty 24/7. No-one could be employed with those working hours but home carers are expected to do it. The combination of being constantly on duty while coping with the emotional stress of seeing your loved one so poorly really takes its toll.

It also has a knock-on throughout the family. If your FIL comes on the phone in the middle of the night because he can't cope with something, you and your OH aren't going to be able to ignore the call for help. What effect will that have on your home life and jobs?

Being at home can be the best solution for some people but no-one has "failed" if they can't manage. Your MIL needs to be in the place where she will receive the right care for her - I've seen people kept at home in quite poor conditions because the relatives felt guilty about "putting them into a home".

As POA, I signed a DNR form for my Dad. By the time the issue was raised, I knew that he didn't want, as he put it, any "heroic interventions" if he had a heart attack. As it was he feel asleep one night and didn't wake up again so he went very gently.

georgiesmum

There will be a care plan put in place before she can come home. As it will take about 3 months to finealise it all you will have time to get your head around it. Be aware that not all home care is free, depends on your financial state.
If your fil is not able to cope then they may put her in a care home as they did my husband.
You will be helped all the way. The people concerned with this were very good.
The hospital will want to get her out id they can't help anymore. They have no choice as they are desparate for beds.

Mojisola

georgiesmum wrote: »

You will be helped all the way. The people concerned with this were very good.

The hospital will want to get her out id they can't help anymore. They have no choice as they are desparate for beds.

If this has been your experience, you've been lucky and the system has worked in the way it should but it's not a universal experience.

Anyone in this situation needs to be aware that things might not work out so well - promises may be made that aren't kept about equipment and the amount of care provided, respite care may never materialise, etc.

We had a very good experience with the hospital - they refused to discharge Dad until they were sure that he was going somewhere that could provide the care he needed.

elsien

Has anyone mentioned the possibility of a "step down" bed / respite?
When my grandmother was ill and did not need to stay in hospital but was not ready to go home, she was given 6 weeks in a nursing home that was funded (I think) by social services to give her more time for physio and to see if going home really was an option for her.


The downside of this was it was a bad nursing home and the promised physio etc never happened, but there were far better places she could have gone to - unfortunately the "official" next of kin wouldn't fight it on her behalf.


If you can find a decent bed, it might give a bit of breathing space for your family to take stock and think about things properly. And for people to get their act together and get all the elements of the care plan in place properly. Does the care plan have a contingency for emergencies ie something happening that FIL can't cope with?


And someone around to be on the carer's backs if needed? When my grandmother was at home and they weren't doing things properly she wouldn't speak up directly as she was worried about the consequences, but did back me up if I said it for her. Some carers are great, some are less so, either way it does need monitoring.

CATS

Hi elsien,

There has been no mention of a care home. I think we have another meeting next week to see what they recommend. We have thought about installing cameras in the house as my FIL is the same, he doesnt want to speak up, we had to have a nurse suspended last week because of her actions and he was adamant that he did not want to say anything. There will be someone at home when the carers come but for peace of mind we will be putting cameras, not because we dont trust every carer but you can never be too sure, they wont be hiden to catch people out, just for our own peace of mind

CruisingSaver

Hi CATS


The 'step down' care referred to by Elsien is known as Intermediate Care and as described it's a kind of halfway house for patients who no longer need the level of treatment and care provided in hospital but aren't well enough to cope at home just yet.


Intermediate Care can be provided either in a nursing home or some areas have specialist intermediate care units run by the local Community Health service provider and/or the Local Authority.


Intermediate Care, if appropriate, should be part of the care package leading to your MIL's discharge so don't allow anyone to tell you otherwise.


In addition to carers calling in once your MIL is home I'd also expect some kind of input from community physio, occupational therapy, and community nursing so please make sure that these aspects are covered in the next meeting you have with the MDT.


CS

PlymouthMaid

I am sorry to hear about your MIL. I am no expert in these things but when my Dad could not be discharged home after a bad fall (as well as his Parkinson's) as nobody could care for his high needs (double incontinence, can't walk etc) the NHS put something called 'fast funding' into action. There is a set of criteria which has to be met but it enables a care home to be funded and a place found quickly to basically release the hospital bed. May be useful information as it really does not sound as if FIL will be able to cope.

valk_scot

belfastgirl23 wrote: »

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.

I second this x10. Don't consent to her coming home till everything is worked out and the care is in place otherwise getting it organised will take months. Also never say "Oh, I suppose we could manage that part now and again..." because trust me, you will be heard as saying you can do it 24/7. You'll have enough gaps to cover because even if you get a brilliant care package in place it's never as smooth as they promise and you have to keep a very sharp eye on what's going on.


When my mum had a bad fall and was confined to her bed for several months the hospital was pushing non stop to send her home where there was no-one to look after her at all, with a care package. One person even suggested I moved in with her, I had two young children at the time and was already looking after my OH who was recovering from an op. Then they suggested she come to live with me for a while. I've got a spinal disability, I already had to have care help with my OH for bathing etc. I put my foot down and said NO a lot. They found her a respite bed, she was very happy there and made a good recovery. I really couldn't have coped with her, I was already struggling. But I was made to feel that I was a selfish monster and that I didn't love my mother otherwise I would have "made the effort". Incidentally my mum was 100% in agreement with me.

Prothet_of_Doom

CATS wrote: »

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.

When my wife was a nurse in Birmingham, there was usually a sticker with NOT for 222 on the notes.

222 being the crash team.

It's not nice, but what they are actually saying is that the prognosis is so bad, it would be kinder to just let her die with dignity.

Note that my nan (94) was pretty much 'trapped in her own body' for 12 months, and whilst I'm sure she knew we were there, it was a relief when she finally sucummed.