Summary of our problems

[trakand01]

Hi,
I've got a few other threads on the go, but I have a horrid nagging feeling that I havent put all our issues into one pot and i'm a bit of an obsessive with that. I felt a need to put one thread on here to kind of ask what we could do?

Summary:

Nannan diagnosed with alzheimers and vascular dementia 2 weeks ago (but she's informally had it for much, much longer than that).

Grandfather told has to have open heart surgery in next month. Will be in hospital for 1 week and out of action for much longer.

Small family - mum is only child, i am only child. There's the 2 grandparents, my parents (my dad is self employed and can't afford to not work), me and my partner, and a cousin of my mum's. That's it - the entire family.

So, we have three problems - Nannan's ongoing health and care for that, Grandpa's recuperation after heart surgery, given that Nannan doesnt understand he's ill, let alone able to care for him, and Nannan's care during Grandpa's recuperation (because he's her main carer).

We all have full time jobs, and we're struggling with outside help. Not because we can't get it or we dont know what's available, but because my grandparent's most likely won't accept it.

Nannan doesnt understand the full implications of her illness (a touch of dementia as she calls it but ultimately, she thinks that all that's wrong is that she just forgets what she had for dinner sometimes), and Grandpa wraps her in cotton wool. She's quite aggressive towards him - very aggressive infact and has quite a few delusions, which provoke viscious arguments. She won't go out anywhere, rarely wants to see other people and kicks up a stinking fuss if he tries to make her.

As a result, he flatly refuses to do anything (apply for carer's assessment even) that he thinks might provoke her (she is very very defensive). I can understand this, but it is making life very very difficult for my Mum because she is now trying to hold down a full time, demanding job whilst trying to work out how she's going to care for them. It will be with my help of course but if we could just make them have external help, just a few hours a day, or a couple of days or something, it'd be so much easier...

Has anyone else experienced this, and how did it go? Taking my nannan out of her familiar environment at this stage isnt possible, because she's 'with it' enough to recognise that we'd be putting her somewhere else, but 'gone' enough to already believe that we're trying to get her committed...

 

[Jo1958]

Hi,

We all have full time jobs, and we're struggling with outside help. 
Not because we can't get it or we dont know what's available, 
but because my grandparent's [B]most likely [/B]won't accept it.

I would start with that 'most likely', get that either as a 'yes they will or 'no they won't' and you can move on to the next stage of decision making.

Wishing you all good luck with what you have on your plates at the moment, best wishes, Jo

 

[trakand01]

Thank you Jo, yes it's definitely something we have to do. He's got a great big stack of papers from the hospital (yesterday) about his heart op and we're pretty sure there's stuff in there about care, should you need it but we havent seen the pack yet.

We're hoping that maybe if it's from the hospital, he might consider it (even just to care for HIM during his recuperation) but he seems to think that my Mum can do everything without help - or should be able to, at any rate.

Also a bit concerned, knowing how stubborn he can be, that if we broach the subject and he says 'No', the door will then be shut for us going to discuss it with him again in the future, for fear of an argument.

Mum's also trying to think of how to get around to discussing EPA or LPA with him for both him and my Nannan because being completely realistic about it, he's 83 and having open heart surgery. My Nannan (although she thinks she is) isnt capable of making big decisions regards her own care, or his. It's not a ridiculous thing to assume that there may be a time in the next few weeks where my Mum NEEDS to make decisions on both of their parts...

I think it's going to have to be a series of very difficult conversations.

 

[Goingitalone]

The problem is, if someone doesn't make a decision soon it may be made for them because of circumstances.

It's much better to make a decision in relative calm than to be stuck with an emergency situation and very few choices.

In my humble opinion (and I'm no expert) I would suggest respite care for your Nannan while your Grandfather has his operation and some recuperation.

I know it's not what she wants, but it may be the kindest thing in the long run.

Hope something gets sorted soon. It's hard, this decision making. You have my sympathy.

Maggie

 

[Onlyme]

I agree with Goingitalone. If your family don't make a decision then SS might step in and take it out of your hands. At least you will have control over what happens to your Nannan rather than some department making the call.

 

[Jancis]

Hello Trakand01,
I've been re-reading all your threads and I can sense how worried and concerned you are and so thought I'd jump in and give you my four-penny'th.

Your grandpa's op is a very serious one, as is all open-heart surgery. Although the proceedures are often run-of-the-mill for the wonderful surgeons and their teams. If grandpa needs a new valve then he must have been suffering various symptoms and general poor well-being for quite some time so he must be very strong to be coping so well with your nan (I am assuming he is doing a good job considering his age etc?).

My husband (75) had open heart bypass surgery a year ago and he still isn't 100%. My friend (53) had a valve replacement around the same time - she is still not 100%. But both are getting back into their stride and both are feeling much better than before their ops. Apparently the anesthetic stays in the blood stream and can affect the muscles and nerves for months. The result of this is overwhelming tiredness. My hubby can sleep for England.

Grandpa may not realise how long it will take for him to make a full recovery. But the hospital will want to know all about his circumstances and who is going to look after him. Do you think he has fibbed about this? My husband had a pre-op assessment and I went along too and we had an interview with the consultant and a lovely nurse - her title was Clinical Nurse Specialist. Her job was to make sure that my husband understood the operation and that he had care arrangements in place when he returned home. We were lucky because I work from home and we live with my mum who is very fit for her age and she gives me a lot of support.

My husband had his op in St George's in London, but I am assuming that all cardiothoracic units offer similar support and care systems. So if your mum or you could go to the hospital with your grandpa for his pre-op assessment/s and talk to the Clinical Nurse Specialist (and/or consultant) then the problem with looking after your nan can be discussed as a matter of course. She has been diagnosed so your grandpa cannot deny this. I am sure you shouldn't have to be shouldering this responsibility - nor you mum. Let the professionals advise your grandpa. He might listen more to them than younger members of his family.

Hope this helps. But don't be afraid to shoot me down in flames if you think this advice isn't going to work for your circumstances.

Best of luck and do take care of yourself.

 

[trakand01]

Thank you so much for your replies!

(I am assuming he is doing a good job considering his age etc?).

Yes, he's doing ok but mentally and emotionally i think he's worn out. He told my father he felt like throwing himself in a river the other week... my nannan accuses him of all sorts of things.

But the hospital will want to know all about his circumstances and who is going to look after him. Do you think he has fibbed about this?

In short, yes. Well, no that's not fair. We think he's probably under-exaggerated it, and said (I can hear his voice saying it) "Aye but it's ok, my daughters's going to look after us."

So if your mum or you could go to the hospital with your grandpa for his pre-op assessment/s and talk to the Clinical Nurse Specialist (and/or consultant) then the problem with looking after your nan can be discussed as a matter of course.

He had this yesterday. He went in last minute because they'd got a vacant appointment (rang him out of the blue on Tuesday night) and whilst he was there, they said "We may as well do your pre-op now, seeing as you're here."

Thank you so much for your help, your advice is very gratefully received. I will let you all know it all goes. Thank you for listening to me!

 

[Jancis]

Oh dear, sorry he has had the pre-op assessment already but you can still consider contacting the team he has been assigned to. I am sure they will help. Good luck with your all your efforts.

 

[trakand01]

Thank you. My Mum thinks she is going to try and get to speak to the specialist as my grandfather has his contact details.

Many thanks again,

Sarah

 

[Christin]

I do agree that you need to make a decision and stick to it. Your nan may have to go in for respite, it might not be as bad as you all think if you can find the right place for her, if you all have full time jobs you can't be everywhere.

Then for your grandfather perhaps you mum can make sure he has a proper care assessment BEFORE he is discharged and allowed home again. There is a really good factsheet on here about hospital disharge. http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=173

I am so sorry you are all going through this but the help is there, although you may have to ask for it and accept it. You are obviously so worried about everyone. No one is perfect, don't all beat yourselves up over this, you will all be ill.

Very best wishes to you all.x