The guilt of sis I do enough?

[Foslady]

Now on week 7 after the stroke.
Dad has declined mentally v badly and I can help feeling I should have questioned more, but the Dr’s are specialists, I know I should trust them........but I’m just consumed with the fear that I should have questioned more.
But if I had objected because I read an article would it have been worse for him?
I just feel if I had questioned more maybe he wouldn’t have declined so much. We have no idea how much is dementia (was showing early stages) and how much is delerium.
How the hell do I get through this one?
Mum has gone to pieces but denied it until recently and only now just says it’s acceptable for her to behave this way (won’t listen, become totally self absorbed to the point that she became more of an issue then dad and was taking more time and energy, hence more feelings of guilt re dads care.)
I feel as if I have let him down when he needed me more than ever

From being in a similar situation a couple of years ago, yes you are doing your best.
Is he still in hospital? Tbh, when my Nan was in there she was in a bad state, the nurses were crap (on the particular ward she was on, which was a specialist stroke ward), and they didn't know how to deal with her odd behaviour as the stroke brought on vascular dementia.
Honestly, the only time we felt supported was when social services finally became involved. They assessed her and found that the hospitals assessment was complete lies.
The improvement started when we found a care home that had dementia trained staff. The home have been fantastic. And despite doctors saying that she was going to die nearly 4 years ago, she's still going.

Have you been in touch with social services to see what support they can offer?

Where is your dad now? How old is he?

He’s in hospital now but just waiting for his 1:1 funding to be approved and as long as he’s still stable and MH team are happy he’s due out to a lovely nursing home that are dementia friendly.
He’s 84 and this was his fear - losing his mind

Will he have any rehab? It very much depends on which part of the brain is affected by the stroke as to which faculties deteriorate.

If he already has signs of dementia then that can get worse after a stroke

But please don't lose hope

There's so much which can be done. Do lots of reading and research. Speak to Age UK, The Alzheimer's society (it wont matter if he doesn't have Alzheimers)

Your role as helper and cheerleader is just beginning and it can be a very cathartic role

@Goldenchildsmum - I never thought to ask, how bad is that? I have the Discharge Co ordinators number , I’ll check.
This is what I mean about not doing enough. That’s a basic question I should have asked.
Thing that doesn’t help either is that they keep telling mum stuff and then we get a phone call that goes
Someone cane to see your dad/me today.
Oh, who was it?
I don’t know.
What did they say?
I can’t remember. Something about your dad. I told them he doesn’t like to eat vegetables.....

Hence then trying to get hold of someone to find out who it was (if they know) and what it was about.....my dsis and I are on our knees trying to cope with it all, and work, and put the energy in to running our homes, be there for our family.....and mum is making things so much more stressful. We ask them not to talk to her about things that require decisions but it keeps happening and then we have to unravel what is happening with dads care.....

My sister and I had POA which helped. But it doesn't matter. Get your mums telephone number and details taken off Dads records so that you are the main point of contact and you are then informed about everything.

It really isn't a good idea to involve your mum in decision making or taking messages

If your Dad needs a nursing home and you've found a good one then that's great,

Ask if he could go to a cottage hospital for rehab first

Then start researching

There are SO many things which can be done to help his brain. SO many

And you will feel so empowered by all the processes you can put in place to help him

We have been bypassing her as a central contact when we have found out about someone contacting her and who it was, but then another team comes on board and it starts again.......
Will certainly start looking at rehab we can do with him. Unfortunately there are no cottage hospitals here, but the home has things in place to keep him and his brain active, but anything we can do we will

Fabulous! That's great.

Dads main hospital records will have Mum as NOK. Get that changed to you and every new Team will refer to you.

It's hard at the beginning because it's all new, sad and frightening

But as you look into the subject and learn which part of his brain is affected and how that can be supported and helped - it will become something wonderful which you can do for both your parents.

See if you can get a CPN involved for advice. I'm assuming you have a social worker now? If the SW is good they can be a treasure of information.

Give your mum a role. Things to do which can help dad. Reading the newspaper to him, as an example. If she feels useful that might help her. But direct her usefulness. Don't allow her to get involved in areas which she can't cope with

Thank you so much @Goldenchildsmum, you have given me some focus and ways to move forward in all of this.
No social worker that we are aware of, but ‘someone from the council rang and didn’t leave a message.......’

Your dad needs a social worker. That's important to sort funding.

Ring elderly social care and get that sorted.

Change the point of contact at Dads GPs too - as well as the hospital and Make sure social care use you as their contact

It's a lot of work at the beginning but once you've sorted it all and started the care plan, it all flows

As I said - Age UK is amazing

This is just one of their booklets. We also did a few face to face visits to their local office to get advice and help

https://www.ageuk.org.uk/globalassets/age-uk/documents/information-guides/ageukig06careehomesinf.pdf

You are doing your best! That is more than most people do. And as much as anyone can do.

Funding currently is as continuous care, if his needs drop then it will go to social services and the liaison lady is sorting that all for us (I am point of contact with her).
Will speak to my sister and look to change details. Mum is planning to spend a lot of time with dad when in the home but will be asking them to call me or my sister and not arrange things through mum

And thanks @Happyspud, I think they’ll always be something I’ll think could I have done better - but I do that re dd now anyway!

I think you're doing amazingly well OP

Thanks @Goldenchildsmum, it’s reassuring to hear

It's still early days. Try not to panic.

There could be a number of reasons he seems to have mentally declined. Stroke can affect cognitive processing, memory, speech (which includes understanding, getting the words out, etc.). Delirium could be a major factor at the moment. It's really common in older people.

In the first instance, see if you can speak to the Occupational Therapist on the ward. Ask them to clarify exactly how the stroke has affected your Dad and what input he has had (i.e. occupational therapy, speech and language therapy, physio) and what he needs going forward. This should at least give you a bit of clarity and, depending on what's said and his deficits, you may want to speak to the speech and language therapist and the physio.

In terms of your Mum, as harsh as it sounds, you need to tell her that she's got to pull herself together. This isn't the time for her to fall apart. She needs to be strong for all of you especially your Dad. She is probably scared but at the moment she is making it all about her which it's not. Her inability to cope could be the very reason that he is having to go into a home. Give her a notepad and a pen and tell her to write down anything that happens when she is there (i.e. time, name, who they are, what they said, what happens next, etc). If she misses any details, tell her to ask them again so she can capture it/update the rest of the family. Ward staff are generally very understanding.

The Stroke Association has a really good website full of useful information. You can also contact them if you want further help and advice:-
www.stroke.org.uk/

Hopefully the dust will settle/he will improve when he gets out of hospital. At the moment, although it may not be evident, he is still recovering and that can take weeks/months/years.

Wishing your Dad all the best. Please don't give up hope. x

Thank you so much @BarbaraFromOopNorth. Your comments re my mum have basically been the way how my sister and I are thinking, and she got a stern talking to from me, which made me feel bad but I told myself ‘tough love’ was in order and what you have said is what she was told, along with the sad fact that everyone goes through tragic times like this but you have no choice but to power through (reminding her of the absolutely awful times my sister and I have faced and had to deal with). I also told her that while she is like she is dad will not come home as she cannot show that she could even cope with the basics of dads medication. I then gave her basic tasks to do which she did do (write a shopping list, ring about dads hearing aid).
Thank you so much for the info regarding dad too. I’m going to leave a message and my phone number for physio and ask them to contact me, also I’m going to ask about how they will review his meds once he’s out as he’s on Respiradone and everything I’ve seen says it’s short term.
Everyone who has taken the time to reply to me, a HUGE thank you for helping us through this, we were so lost and you have given us direction again

@Foslady In the first instance, speak to the occupational therapist (not the phsyio) on the ward. OTs specialise in activities of everyday living and this encompasses the cognitive/memory stuff going on.

When a life changing event happens, people seem to fall into one of two camps; the get on with it brigade and the helpless 'woe is me'/'I need looking after' lot. Somehow you need to empower your Mum to take responsibility and step up. At the moment, your Dad (and you and your sister) needs everyone to pull together. Getting old is hard but at the end of the day, your Dad is still here and your Mum needs to make the most of however long they both still have. If he goes before her, she can then think that she did her very best by him.

What was your Mum like before? Did she rely on your Dad? What was their relationship like?

I do see this all the time at work (NHS). Families are complex and there is often history and emotional manipulation. It is much easier to deal with when you are the 'professional' in the situation. Having said that, I have similar issues with my Mum. She is convinced she is getting dementia and is often feeble and helpless. The reality is, she has an amazing social life and can do everything when she needs to but she is just a bit lazy and wants someone to look after her.

Thanks for that- will make sure it’s the OT I leave a message for (the Liaison Officer is ringing next Monday so I can also raise it with her to pass my number on if it comes to).
Mum always seemed capable - at least far more capable than this - so we KNOW she can do more than she is, both me and my sister are adamant she has to start stepping up. She does have some history of manipulation - calls herself stupid, always been stupid (then starts saying about when she was a child 70 years ago) and if we then call her on that as it’s the usual waterworks for being mean to her......only it doesn’t wash any more. Again, it seems mean but it has now become almost a survival thing, my sister and I cannot mentally carry on with supporting her at the level she is demanding.
Thing is, she calls other people out for doing this......

Yes, that's exactly like my Mum including the waterworks. Don't acknowledge it. Change the subject if she starts to blub. "So Mum, what were you saying about....?". My sister is actually much better at this than me.

It's not cruel to do this. From a therapy/healthcare perspective people should only be cared for/have everything done for them if they are physically/mentally unable to. Everyone else needs to do as much as they can. For example, a person recovering from a stroke needs to do a lot of work themselves (i.e. doing their exercises, using any equipment provided, acting on advice from therapists) if they are going to recover. They can't wait until they feel better to start their rehab. It doesn't work like that!

Don't give into it. Treat her like an adult and not a child. Give her tasks (which I think you've said you've already done) but make her accountable by following up on them.

When you speak to the OT on the ward, tell her about your Mum and the fact that you and your sister are struggling. The hospital staff are their for the family not just the patient. It's useful for them to know you are all struggling and hopefully they might be able to point you in the direction of finding some help/advice for yourself. As previously said AGE UK is very good as well as Carers UK.

You are doing your best and that is all anyone can do.

Have a look locally and see if there are alny support groups. We have dementia cafes that meet weekly and a professional carers support charity. There will be people there who have been through the same system and can provide advice.

As time moves on you may be the ones providing help and advice because you have been there.

Everyone has been so lovely, thank you so much.
Went to see dad this afternoon and he was having a great day, no delerium, happy mood, even was remembering some stuff.
I told him the good news about people visiting him from the nursing home on Monday and he was very pleased with that.
I also by accident managed to have a chat with the ward OT team. Because during the week he tends to be not so good they haven’t been able to engage (he’s in an awkward stage between no stimulation and over stimulation) but they are hoping to work with him as an outpatient in the home. They also gave us some ideas of what we can do to help so we are going to explore those Avenues.
When mum wasn’t about I also said about her. Apparently it is quiet common that a minor cognitive decline gets worse as their day to day routine has gone, but to carry on as we have been doing and encourage a new routine once day is moved.
Feel more confident tonight.

You are doing great. Nhs continuing care should fund everything but be aware you need to inform state pension and attendance allowance (if applicable) there was no private pension in our case but they may factor that in. Make sure you are the contact point. Nhs have their own team so no need to contact adult social services

Oh, didn’t know that about state pension, will look into, thanks