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Carers

Caring for elderly relatives? Supercarers can help

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Original poster

my dads had a very bad stroke-whats going to happen

34 replies

flossie64 · 12/03/2007 21:44

Sorry its along tale!
4 wks ago My Dad was Admitted to hospital cos he collapsed, turns out he had pnuemonia. he was in there 2weeks sent home but still V ill. Checked docs letter , says he has C-Deficila aswell. At home only 4 days when oneof the carers we had to get found him having a fit of some sort. I rush 180 miles cos they think he will die, then find out he has all this!!
Worst catagory of stroke
Pneumonia
C-deficil
lung fibrosis
left sided neglect
All on top of the diabetes, diverticulitus and his age (88)
I don't know what to do ,I feel so helpless.
The prognosis is not good ,but I can't get any straight answers from anyone

OP posts:

Original poster

flossie64 · 12/03/2007 21:55

bump

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MamaMaiasaura · 12/03/2007 21:58

I am a nurse but a mental health one so not a great deal of help.

It does sound like a serious case tbh.. sorry.

C-Def is a nasty bug and as he is older and already in poor health it can have a big effect on him. It is also highly contangious.

What answers is it you want?

From the inf provideed I would say he is likely to need a high level of care and may not regain his independence.

Sorry for you xx

Original poster

flossie64 · 12/03/2007 22:11

I keep getting mixed messages from the staff .I know they have to cautious, but I only have phone contact and I would not like to think that he might die and I would not have said goodbye .My mum died 12yrs ago and I did not manage to get there at the end , maybe its a guilt thing cos i live so far away.
We live 180 miles from Dad , My DH works 170 miles further south and I have no family here who could have my DD whos 4.
God I feel so BLOODY useless

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Original poster

flossie64 · 12/03/2007 22:26

Please someone can you tell me how to get the full story from the hospital.Its worse not being able to understand whats happening.
Iam so stressed I don't seem able to function properly at the moment.

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laloop · 12/03/2007 22:38

Flossie, could you find out the name of your dad's consultant doctor at the hospital then phone his secretary and explain your situation. The secretary could maybe arrange for you to speak to the consultant in charge of his care so that you get a good picture of what's happening. Also the ward manager/sister might be a good person to speak to for information. Are you the next of kin? Explain this to them so they know it's okay to share information, hopefully they shouldn't mind doing this over the phone. Are there any other family living nearby the hospital who could arrange to meet hospital staff to find out more for you.

Has he been referred to the hospital social work team? If so, then try to speak to the social worker who has been allocated your dad's referral. He/she will be part of the team looking after your dad and should be able to advocate on your and your dad's behalf.

Hope this helps x

dolally · 12/03/2007 22:47

are you still at home now flossie, or at your dad's? It is so difficult living far away isn't it, and with a young child to worry about. Can't really help but I hope you can get some answers.

Original poster

flossie64 · 13/03/2007 09:12

Laloop- Ihave rung consultant ,waiting for a reply
Spoke to the sister in charge ,VERY cagey
I have 2 sisters who live in Carlisle , but I'm afraid they do not ask very much at all and I am the youngest ( 42yrs old!!!) so they tend to revert back to me being the baby of the family andshut down even more.
The most info we got was 48hrs after it happened and that was because I sat and waited to speak to a doctor myself for 3hrs.
There is no consistancy to their info now.
we are all next of kin .
He does not have a social worker ,they said he was not assesed as needy enough, when they sent him home before.
Dolally- I am at home at the mo .I went up for 3 days when it happened but had to come back for dd, and Dh to go back to work .My bag is packed all the time and I dread the phone ringing. Hopefully the doc will ring today.I will keep posting when I can.

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laloop · 13/03/2007 12:52

Flossie, hope you got in touch with the consultant. With constant shift changes on the ward it can be difficult to get the info you need as some of the staff on shift one day may not have been working for the few days previous.

Is the multi-disciplinary team involved? This may depend on how well he is at the moment and the prognosis. The multi-disciplinary team normally consists of an Occupational therapist, physiotherapist, hospital social worker, speech therapist and perhaps dietician who work alongside the doctors and nurses to assess your dad's needs, assist with therapy and rehabilitation and if necessary help to plan the patient's discharge and after care. (I'm a hospital social worker when I'm not an SAHM).

Original poster

flossie64 · 13/03/2007 13:38

Consultants sec off on leave all week
Consultant only in Wed/ Fri PM
Spoke to another sec ,who said she would get reg to ring me , if he knew anything about my dads case!!!
Waited 3hrs ,but thank god he did ring back.
It wasthe doc who spoke to me at the beginning.
He says Dads stable at the mo ,but they are having probs getting C-def under control( he's had it 4 weeks now ) .Things will improve on that when they clear final bit of pneumonia,they hope.
Stroke treatment and any rehab cannot begin properly til then and he's not able to tell me if it will work even then.
No word of that team you mentioned, but I know now he saw physio/OT's tuesday.
The nursetold me they were going to stand him up !! Beggers belief really when he has no use of left side.
I have to laugh ( or I'd cry )it makes me think they will prop him up in a corner like a brush or something.
I sound like a sicko now, maybe I've cracked up already.

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bundle · 13/03/2007 13:54

flossie64, I'm really sorry about what's happened to your dad and that the staff haven't helped things by their lack of communication.

I would keep pushing for info re: treatment etc, but also what happens if his situation doesn't improve. My dad died last November and I was very lucky to have a really good team looking after him, who talked to me and my mum about what kind of care we'd like for him if they were no longer able to help him. Sorry if this sounds gloomy, but I think it helps to think about what could happen (I too, was a long way away & know how helpless it feels).

Wishing you strength, xxx

GooseyLoosey · 13/03/2007 14:05

No idea about the buds, but my dad had a severe stroke 15 years ago.

Arrange to be at the hospital (if you can) when the consultant is seeing your father. Make as much fuss as you need to.

I got an enduring power of attorney so I control dad's estate and can give consent to things and have more status to demand information. You can always revoke it later.

I found that the stroke initially made dad prone to extreme emotions like anger which were really quite hard to deal with for him and me. Best way is to remember that much of his brain is unaffected so to deal with him as normally as possible. Loads of stroke info available from

www.stroke.org.uk/?gclid=CJbA2ZD18YoCFQzBXgodaiaBlA

GooseyLoosey · 13/03/2007 14:05

OOps - meant bugs

Original poster

flossie64 · 13/03/2007 14:18

Thanks for all your support .
GL- we have the power of attorney cos we arranged it when we needed one for my mum 14yrs ago.Not that we like to be perpared in our family! it was Dads idea as he didn't want the difficulties we encountered with mum.( she had Altzheimers)
Bundle I know we will probably lose him i just can't bear to think that it will go on and on .
Can't remember who said it but you are right about the anger , he was such a quiet man and he has shouted at everyone of us for reasons beyond our comprehension.

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GooseyLoosey · 13/03/2007 14:33

It was me about the anger - bear with him, he really can't help it - he may have damaged parts of the brain that deal with controlling anger, but should get better over time as he becomes aware of the problem. Best wishes in what must be a very hard time for you all.

bundle · 13/03/2007 14:46

flossie, our nurse David took me through something called the Liverpool Pathway for the Care of the Dying...which is a framework they can use to tailor care to your/your father's needs when the time comes. My dad had Alzheimer's, pneumonia and we think he had a couple of strokes towards the end but we talked to him all the time and I took my daughters to see him the week before he died, after warning them he might look and behave a little differently. when you arranged the power of attorney, did your dad give any other ideas about how he'd like his care to be handled?

mamijacacalys · 13/03/2007 14:58

Sorry you're going though this difficult time.

My FIL had a stroke last April and died in the August. He was in hospital for the whole 4-month period and we had the mulit-d team involved as described by laloop. But every time he seemed to get 'better' he had another stroke which set him back - it became a never-ending cycle of:

-has episode
-is out of it for a day or two
-wakes up but is confused and nasty for a day
-is confused but funny for a day or two
-has another episode...etc

Like your dad he was a kind and gentle man and the aggressiveness was hard to deal with. He was also diabetic and had heart problems. He was 67, so younger than your dad, but had had health problems for a few years. At the end he was psychotic and had to be severely medicated to calm him down, but thankfully this did not last too long (was literally the last day or so). The hospital and staff were fantastic throughout.

Sorry I have rambled but, wanted to share our experience, FWIW amd also what I wanted to say is that you have to be quite assertive about what care you expect. At the end with FIL, for example, they wanted to move him to the Cardiac Ward to treat another heart problem that had developed but DH and SIL said not to mess about further and just to make him comfortable as it was obvious the end was coming.

Good luck in this difficult time, HTH.

laloop · 13/03/2007 15:27

I'm glad to hear your dad is stable at the moment, and hopefully they will get the c.difficile under control soon as his pnemonia eases. The ward staff might be attempting to get him to a standing position to see if he can weightbear - they're probably assessing him to see how much his mobility has been affected at this point. This would only be for a few moments - please, please don't worry they won't prop him up somewhere and shouldn't expect him to do anything he's not capable of at the moment.

Original poster

flossie64 · 13/03/2007 18:06

I was being a bit ironic when I said about propping him up , I didn't understand why and it makes me a bit silly I suppose. Sorry Laloop if I annoyed you.

We have been told they will not resussitate ( can't spell) if he arrests as he is not suitable for a ventilator due to the lung fibrosis. My wish is for him if he has to go that it be sonner rather than later as all these problems just add to his suffering as far as I can see.
All in all he has had a good long life and up til Christmas he ailed very little , his GP said he had 10yr olds with bigger files than Dads.
He was so long without seeing a doctor that 2 had retired and died before he had to see anyone from his practice, then it was difficult because they struggled to find any record of him on the list

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laloop · 13/03/2007 18:12

Omg, so sorry flossie, I wasn't annoyed at all, just thought you were really worried about them getting him out of bed if he's been really ill .

Your dad sounds like a lovely man, it must be awful to see him so poorly.

Original poster

flossie64 · 13/03/2007 18:23

I am worried , but I get flippant when i am so no-one can tell . God its a good job you can't see me cos I sound like a total nutter.

He is a really nice man and it just grieves me to see him like this

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laloop · 13/03/2007 18:46

Must be difficult too with living so far away. (Btw, you don't sound like a nutter )

Original poster

flossie64 · 13/03/2007 19:00

Thanks Laloop it s a good job somebody thinks i'm sane. I think my DH spends most of the time trying to convinece himself

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Original poster

flossie64 · 13/03/2007 19:01

Now I can't even type !I meant convince

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laloop · 13/03/2007 19:05

Lol

Original poster

flossie64 · 13/03/2007 19:22

I am going off now I will post again when I get the next update from the hospital or my sisters. On second thoughts just the hospital , cos I may be waiting for ever to find out anything from them!

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