runaway roller coaster ......... help!

[Áine]

The roller coaster accelerates. Dad has gone downhill faster than anything I've ever seen at Alton Towers Diagnosed at the end of February, permanent in nursing home by middle of March, unable to walk by about May, and now it looks like he might be on his way out altogether.

I went in to see him last night and he was sitting in a low chair, with fan on his face. He has temperature, chest infection, shaking, breathing fast, blood sugar up, blood pressure down. GP has been today and put him on anti-biotics, but he's hardly able to swallow anything. Tried ages to give him drink, thickened with whatever revolting stuff they use ....... but it was pouring back out his mouth or he was coughing and it came down his nose. Lovely nurse managed to get his anti-biotic down him and said he would come back later and make sure dad had had something to drink.

But they saying this might go either way. I asked what happens if he becomes more ill, whether he goes into hospital or not. To my horror they say I will need to decide what happens! How on earth do I go about trying to think about that one? I assume others here have been there before ........ please could anyone advise or explain a bit more about how the system works????? Knowing dad's rate of decline it could be days or even hours before I'm going to have to be making these kind of decisions.

 

[Kayla]

Help!

I'm sorry that your Dad is so unwell and I hope that the anti-biotics do him some good soon. The hot weather could be making things worse, as my Mum and her friend seemed pretty miserable the other day, in this heat.
I have never been in your situation, so I can't advise you. However, I do know that my Mum was very distressed when she was in hospital, after she broke her hip. I wouldn't want her to go back into hospital unless there was a very good reason for it and she was going to benefit.
Mum has at last settled down in her NH and she knows the staff. If she was really ill, I'm not sure that I would want to move her away from the people she knows and who know her.
I shall be thinking of you and I hope your Dad will be feeling more comfortable tomorrow.
Kayla

 

[alex]

Hi Aine

Hi Aine

I'm so sorry to hear your dad is so poorly honey.

Aine if its any consolation, its for you to decide because you know your dad better than anyone and if you look deep inside yourself you'll know what your dad would want in a situation like this.

From experience i would say that what the hospital are saying is: do they treat the infection or do they leave it to take its own course.
I know that when it was Ray they said that if this infection did not get him, the next one will, i felt that it was so cruel for them to just give up on him, but unfortunately..........they were right.

I'm afraid you have a very tough task ahead but you will come through it.

If you can't make that decision yet, then don't, your course will become clear as time goes on, whatever you decide, that is the right decision!

Thinking about you and sending you a hug
Love Alex x

 

[Helena]

Aine

So very sorry to hear your news however if I remeber rightly about Lewy Body Dementia this kind of happening is very often the last stage

I suspect the doctors do not feel it right to prolong his life unnesecarily by heavy intervention

It must be very hard to be asked to make decisions like that although personally I feel the shorter the suffering with Dementia is the better for all concerned
Its a horrible way to end a life

 

[Amy]

Hiya Áine,
No advice, just a big <<<hug>>> .
Love Helen

 

[Margarita]

But they saying this might go either way. I asked what happens if he becomes more ill,

Sorry to hear this is Happening to you , you must be in shock I know I was when they said it to me with my untie What help me was thinking it was the either way as in haveing more time in the long good by but that me .

I spoke to the consultant & went with his advice

 

[nikita]

sorry to hear how quick things have gone down hill, if you have any decisions to make it may be worth thinking is it fair to put dad through this again, as if he recovers he in time will only get another infection. would he want to go on like that? thinking of you

 

[Tender Face]

Áine, no advice, just a hug and a thought:

You have done so much so selflessly for your dad and come through each challenge every time .... whatever the outcome of what's happening now, whatever decisions you may or may not have to make, you will know that you have done your best and that best has been quite brilliant.

Thinking of you, Love Karen (TF), x

 

[Áine]

thanks

Thank you all for your support. He's no better and no worse at the moment, though he still hasn't opened his eyes for over a week.

What you're saying makes a lot of sense. Dad hates anyone even so much as trying to sit him up more straight at the moment. The thought of him being in hospital and having tubes pushed into him by people he didn't know at all (and people who didn't know him and hadn't built up some sort of relationship with him while he was more well) feels wrong. I got muddled up with issues about having to make decisions about whether his life was worth living .... which feels an ethical nightmare (quite apart from the emotional one). But now I'm thinking maybe it's a more straightforward equation of calculating that strange environment/people and being pulled around when he doesn't understand what or why ....... is probably worse than death ....... at this stage anyway.

I've realised I'm not so much afraid of him dying as afraid of him being in pain and discomfort whilst he's doing it. My concern is less about keeping him alive as making his death OK.

Thankfully we've not got to the stage where I actually have to call on that one ... but at least now I feel a little more clear about it. ........................ I hope

 

[Amy]

hiya Áine,
You sound more at peace with what is happening. I am sure that whatever happens, they will try and keep your dad pain free.
Love Helen

 

[dmc]

hi áine

just to let you know your in my thoughts, i thought id posted a reply the other day but cant see it
anyway hang on in there i hope your dad is not to distressed, look after yourself too
talke care
love x

 

[mel]

Dear Áine
l don't know how i missed your thread....I've only just read it today
I'm thinking about you so much its a very difficult situation to be in and whatever you decide will be right for your dad.you have shown you love him very much and you are always there for him...just stay strong and take care...
love
Wendy
x

 

[alex]

Hi Aine

Hi Aine

Sorry to hear dad is not improving but just hang on in there and see what happens over the next few days, stay strong, i know its almost impossible but try not to worry too much.

Sending you a hug.
Love Alex x

 

[jakky]

Hi Áine

Sorry to hear you`re going through a tough time at the moment. Stay strong, positive and keep your chin up......

jakky

 

[mel]

Hi Áine
how are things today/
Love
Wendy x

 

[Libby]

Hi Aine

Really sorry to hear about your Dad being so ill

I suppose it's a situation that any one of us here could be in over the coming months and years.

Take care

Libs

 

[Áine]

Hi Áine
how are things today/
Love
Wendy x

Thanks all of you for all this support. It helps being able to log on here when I get back from the nh. Things don't seem any different again today ...... no better no worse ..... except it sort of felt a little worse because I went later in the day today and dad was already in bed. Being in bed always seems to make someone look more ill. I think the GP is going in to see him tomorrow again, because he'll have had 5 days on his anti-biotics. Still no sign of him opening his eyes ...... I don't quite understand that.

Á

 

[connie]

Dear Aine, nothing I can say will help.

Thinking of you and sending you a special hug.

 

[dmc]

hello áine

just wondering how you are, hope things have improved for you
thinking of you
take care x

 

[Lila13]

My mother seemed better in bed (in that last hospital) because in the day room she was forced to sit in a semi-circle and have radio music blasted at her. (Why do they do that? I put a chair close to her and facing her so that I could touch her hand but they forced me to sit in the semi-circle too so I wasted too much of that last visit unable to touch her and hardly able to see her. I don't know if they have any idea how intimidating that attitude is.) She had a bedroom of her own but it was more like a cubicle, you could hardly get a visitor in there, and there wasn't even a chair in the room.

Lila