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Original poster

Honesty needed urgently about my dad (long)

28 replies

stickyj · 26/07/2010 07:21

Please help. My Dad has dementia and has become severely dehydrated and is in hospital on a drip. He changed homes 12 days ago and I feel so guilty about it. He was really ill about a week before he moved (that helps me in that he didn't suddenly become ill on moving) and at one point the doc asked me about resuscitation so I knew he was bad. However he came out f that and started to eat and drink a little but I think the move upset him. The girls are lovely where he is but they couldn't get him to eat or drink. Should I have asked for him to go to hospital earlier or should they have insisted? They called the doc in on Saturday and made him go, it was the right decision but I feel so guilty that maybe if he'd gone earlier he might be better now.

I keep getting different stories of different nurses. I spoke to one yesterday morning and she virtually said he might die, it was wait and see but not really, really hopeful. I was going to ring DS2 (on hol) to come and say goodbye. When I got to the hospital, another nurse said he'd had two spoons of yoghurt and had been trying to talk. I spent an hour with him, totally unresponsive and when I asked her about it she came over and tried to wake him. She couldn't either so said that we just had to wait and see over the next 24 hours! That's a bit different from what she said earlier about give him a few days and he'll be better!

I tjink he's going to die and I am thinking about telling him that it's OK to go, if he wants and then he can be with my mum, even tho I want him to stay.

Can anyone help, does anyone have any experience of this please? Can I ask for a prviate room for him, I'd like to play music for him. Can I stay all day with him, not just visiting hors?

Any help please?

OP posts:
Original poster
stickyj · 26/07/2010 07:32

Bumoing for urgent help/advice. Thanks

OP posts:
Original poster
stickyj · 26/07/2010 07:32

Sorry, bumping (sp)

OP posts:
sarah293 · 26/07/2010 07:36

This reply has been deleted

Message withdrawn

whatifihadneverbothered · 26/07/2010 07:41

Hi Stickyj,

If I was you I would ask to speak to the doctor on the ward, ime you usually can stay as long as you want if someone is very ill, you can ask for a private room however they may not have one.

I just didn't want this to go unanswered, hope your dad is ok.

Original poster
stickyj · 26/07/2010 07:51

Just spoken to the staff nurse and she says there's no change. There are no side rooms available, that's so crap. He has to die in front of everyone else! I want to play him music and say things I can't say in front of everyone else.

OP posts:
deemented · 26/07/2010 07:58

Oh stickyj, i am so sorry to read your posts.

If this is the end, then is there anyway he could perhaps be moved back to his care home to pass peacefully? At least then you'll have some privacy and get to spend some time with him.

ItsAllaBitNoisy · 26/07/2010 08:04

If you can't get a private room, you need to whisper what you need to tell him. Don't not say it because of other people being around. Play him the music through earphones while holding his hand.

So sorry.

violetqueen · 26/07/2010 08:31

Oh I'm so sorry .
Please dont feel that you are some how responsible .
Of course you can stay all the time - is there someone you can call to help you ? ( you need food and drink for yourself and support ).
Just be aware that your dad could linger a while ,so you need to work out how to stay with him .
I agree with earlier poster - could you ask if he could go back to home to spend his last hours?
Can you ask manager at home ? ( they must have experience of this ) .
Not much help ,I'm sorry .
Hope more advice on it's way .
hugs

Northernlurker · 26/07/2010 08:33

Ok - yes he should be in a side room but they are a scarce resource and needed for people with infections/distressing illnesses which can mean people like your Dad - who should have one but can be peaceful and comfortable on a ward - don't get them. I agree you should ask about a transfer. Potentially hospice care might be an option - it's not just for cancer patients. You should certainly be able to stay all day. Why don't you ask to speak to the palliative care team in the hospital so you can be sure your dad's comfort is being maximised. You could also ask to speak to the area matron and emphasise your wish for privacy. If they can get him a side room i'm sure they will but to be brutal - dying is not an exact science. I've known people go just like that and others move much more slowly down a path. One thing a lot of people report is that their loved one waits till they leave and then goes. So many people just go home for a shower or out for a quick bite and then get a phone call. I firmly believe that this is not co-incidental.Some people choose to die in the arms of loved ones and others I think prefer to slip away alone. You are absolutely right to tell him it's ok to go - people need to hear to that. Even with dementia his sense of love and responsibilty to you will still be there and it's hard for people to let that go.
You are being very brave - i'm so sorry you've got this hard time but your instincts are right and I hope the hospital and other carers will support you. I'm off to work now but will log on tonight.

throckenholt · 26/07/2010 08:40

Say what you want to say - no one else will be listening - and even if they hear you, they won't know you. And even if they did - so what - you are talking to your dying father - you can say whatever you like.

Telling him it is ok to go is good. Struggling to stay alive in that situation is a bit pointless - it does him very little good, or you either - because he is just a shell of the person he used to be.

Try and keep the memories of how he used to be.

We went through this with my grandad - had the resuscitation question too - we told them no - let him die - he has had more of this than he would ever have wanted to.

Earthdog · 26/07/2010 09:04

Just want to say I feel for you as I have been going through a similar thing with my nearly 101 year old Grandmother who has advanced vascular dementia. I have had to agree to move her into a nursing home as her carers can't cope any more with her at home, so I am worried the move will have a bad effect on her. However, we can only do what is best at the time so don't feel guilty. If quality of life is poor it may be better if they pass away, hard though it is for us. My Grandmother slept for about 48 hours last week non stop, she had shallow, irregular breathing, would not eat nor drink and was dehydrated. I slept the night and expected the worst, but she bounced back and is much better now, eating and drinking! So there is always hope. But can you ask to upgrade to a private room in case, so you can say your goodbyes more comfortably? My thoughts are with you. x

belleymum · 26/07/2010 09:13

I would ask to speak to the matron/sister in charge and ask them to bleep the doctor on duty to speak to you.
The nurses will all have different opinions and experiences with your father based on their last shift.
Ask to know what has been written in the notes too.
Ask away, so that you don't have any doubts or regrets that you aren't doing the best for him.
Don't be fobbed off.

belleymum · 26/07/2010 09:14

I would stay with him all day too.
I can't imagine that they would ask you to leave after the things that have been said to you about his condition.

MichaelBublesPillow · 26/07/2010 09:26

Is he from a nursing home or just a regular home, as if its a nursing home, he can be on a drip there and it might be more pleasant for you all. I would pursue this option and if its not possible, you say whatever and do whatever you want while you are with him. It may be your last chance, and nobody will care what you are saying, they are too busy worrying about themselves.

So sorry you are having to go thru this but please don't beat yourself up about it. Dementia patients can very quickly become ill for apparently no reason and its nobody's fault

MrsSnaplegs · 26/07/2010 09:27

What NorthernLurker has said is very true from my experience as well. Spend time with him, make your peace, ensure other family members get their chance if you think they would want to be there and make sure he is comfortable.
Ask to see the Dr on the ward not the house officer - ask for the SHO (Senior house Officer) at least, yes they are busy and you may have to wait a little longer but speaking to them will give you a ;little more information. If you can't ask to speak to the senior nurse on the ward - more often than not they will have more knowledge and experience than some of the junior Drs.

Stay with him if you want and please say what you need to say, ignore everyone else around you.

I am really sorry you are going through this.

Smash09 · 26/07/2010 09:42

I'm so sorry to read this Stickyj. It is a horrendous to have to say bye like this, but don't let it stop you saying what you want to him and as suggested, play him some music through headphones.
I'm sure you're allowed to be there to look after him all day and stay as long as you like when that time comes, it's exceptional circumstances.
Wishing you all the very best at a difficult time xxx

Original poster
stickyj · 26/07/2010 11:28

Thank you all so much. His care home is not nursing so they can't have him back. Am waiting for docs to do their ward round, it seems I have to speak to a different nurse each time I phone. I will ask to speak to the SHO but am actually quite scared about him going. I just need to know, yes or no. Have already started planning stuff in my head about people I need to contact etc. It's as tho I've written hime off already and I feel terrible but I think it's just my way of coping. Spoke to my mum this am, (natural mum who adores him, adopted mum died 24 years ago which is why me and Dad are so close). Just wrote "were" not "are" . Mum tells me I'm just like her, to hold your head up high, gal (she's a Cockney!) and to stay strong for my Dad! I'm fine unless I speak to someone and then I just dissolve.

OP posts:
violetqueen · 26/07/2010 19:25

Oh I'm so sorry ,you are being so brave .

IME one of the hardest things is the fluctuation - one day you're braced for the worst ,the next they've rallied and you're in limbo ,feeling guilty that you're not thrilled that they've improved .

feelingafailure · 27/07/2010 02:46

its such a tough 1.stay with him even with his demntia.i had a very close relative who had the sane condition she dudnt even know us at the end.u have to do what is is your heart,too bad if rhe staff dont like it .my relative did die but she was ready to go.i held her hand 2 days before she died and gave her permision to go i know i felt dont want u to go.even thogh its a bad memory it was for the best for her,.she didnt have nuch choice in the matter nor did we.it is heart breaking .

solo · 27/07/2010 02:59

No advice, but just wanted to say stop trying to find fault in yourself. Don't feel guilty, you are clearly doing all you can for your Dad which speaks volumes. Stay strong.

BalloonSlayer · 27/07/2010 08:06

So sorry you are going through this stickyj.

All hospitals are different of course, but when my Dad was dying he was moved into a side room. This was not for his comfort but because they relaxed the visiting rules for him, and it was so we didn't disturb the other patients. What I am leading up to is that maybe the hospital don't think your Dad is at the end yet. Also that they might be wary of saying anything because of how you might react.

I do think you need to ask for an appointment to discuss his case with a Doctor. They will usually oblige, and it would probably be after the ward round one morning. I am not sure you'll have a lot of luck over the phone. (In my Dad's case we were convinced he was dying and wanted the meeting to confirm or deny it really. There were about six people crammed into this tiny nurses' office . . . I think some were the less experienced doctors to watch "how it's done." I don't think we would have got that degree of care, interest and attention to detail if we'd tried to get that information over the phone.) Hope I haven't upset you even more by telling you any of that.

Thinking of you

MrsSnaplegs · 27/07/2010 21:10

stickyj Hope you are okay today and you are getting suppport you need. Thinking of you at this difficult time

LittleSilver · 28/07/2010 21:26

OP, just couldn't leave without saying I hope you're OK. Please don't hesitate to make a fuss if needed; it WILL pay off. Take care.

whomovedmychocolate · 28/07/2010 21:34

stickyj - am sorry are going through this and hope today has been productive in terms of getting information. Do call the local hospice and talk to the palliative care team at the hospital. Make it clear you want a plan for the next 24 hours to be agreed.

Say your goodbyes, and get your children to do so. If they are premature it doesn't matter. It's unlikely to be long.

IMHO sometimes people just get to the end of the line and they stop taking anything in because they are ready to go. There is nothing you have done or not done to reproach yourself for. And what someone else said about dying alone, I've known a lot of people do this, for every person who dies with their loved ones hands in theirs, I think there are 50 who wait till they pop to the loo. So don't beat yourself up if you aren't there when he does die.

I'm really sorry about your dad.

OrmRenewed · 28/07/2010 21:38

Sorry to hear this sticky No advice i'm afraid but please don't feel guilty about anything. Your love and care for him is clear.

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