I need some help, I have shot myself in the foot!

[Hollywood]

Hallo, everybody. I found you a few weeks ago and have been reading avidly, and always felt a bit calmer and more able to deal with my husband after reading other peoples' posts.
I will try to be brief. Just over 2 years ago my husband had a hernia op which resulted in Post operative cognitive decline. He had very mild dementia but came out with full-blown and now diagnosed, Alzheimer's. He "came back" after 4 weeks' home care and we have lived a quite happy but very different life since then. He has Aricept, his MME was 28 then 26, and 5 months aago was 22. He was accepted on a clinical trial for exercise - things were as good as they could be under the circumstances, and I accepted that he was different but still my beloved husband "in there" most of the time.
5 weeks ago he had to be admitted to hospital with what I thought was a UTI but turned out to be septicaemia. He was pumped through with Domestos strength antibiotics, and was declared medically fit 2 weeks ago and sent to a rehab ward as he was very confused.
Trouble is, he got even more confused on the rehab ward and kept sleeping. An OT rang me and asked what he was like before he went in. And a Social Worker also contacted me and asked me what help he would need at home. I said I didn't know, as he may "come back" a bit after he comes home; I couldn't say until I had him here. She said that was fine, I went to hospital and said I would like him home if poss, as he seemed to be deteriorating confusion wise. I just asked if there was anything they were doing for him that I couldn't do at home. and they said "no, nothing, he is medically fit, he passed the stair test, off you go" - so to speak.
But since he has been home he is going further and further backwards. I took him to the GP on Weds, she said he had been really, really ill and to give him a few more weeks.
I realise this and have tried to let him convalesce, but he just sleeps and sleeps and sleeps. I do not exagerrate when I say he is asleep for 23 hours a day and when I do wake him for that (interspersed) hour, he is totally incoherent just gibberish, no words. He sees things and people that are not there. I wake him to try to get fluids in him and a bit of food, to change his pads and get him dressed and undressed for bed, but his eyes are shut and he dozes off.
I have spinal stenosis and arthritis, so can't haul him about.
I realised I needed help and rang Social Services on Friday, but I - or my husband - is now a closed case, so non urgent and non priority.
Tonight it took me two hours to wake him to get 2 teaspoons of shepherds pie and half a cup of tea into him, then I had to physically drag him upstairs one step at a time and get him undressed and into bed. I can't manage this any more and there's no improvement on the horizon.
But I seem to have shot myself in the foot by taking him home before a care plan was in place. (Oh, hindsight!!! how expensive you are!!)
Sorry this is long and boring, but I really am at my wits' end and I don't know where to turn for help.
Has anybody got a bit of advice for me?
Thanks x

 

[1954]

Hello Hollywood

My heart goes out to you as you have such a lot to cope with! You must love him dearly. Something doesn't sound right have you called the out of hours doctor or called the GP for help? In case he has another infection?

This may not be right thing to do and hopefully others will have more suggestions for you

But my thoughts are with you

You are doing a fantastic thing there, I take my hat off to you

Kairen

 

[Izzy]

Hello and welcome to TP. My goodness what an awful situation you're in.

I think if it was me I would get back in touch with the social services tomorrow and make it clear that this is urgent. If you get ill or hurt yourself in looking after your husband he will suffer. I think if you use the word 'vulnerable' in relation to your husband they might need to take notice. I know it's easy for me to say but I think I would be demanding an updated assessment of need as a matter of urgency. Included in this should be a carer's assessment for yourself.

I do hope you can get something sorted out.

Take care. x

 

[Hollywood]

Not very good with posting cos never done it before! But thanks for reply. GP checked him over, all seemed well, no trace of temperature or anything so don't think it's an infection.

 

[itsmeagain]

Authorities must help you now, ring the GP tomorrow and say you can`t do this anymore and that you need your husband to be cared for in hospital for now.

 

[1954]

Hi Hollywood

Good about no infection but if GP/Social services not helping then unfortunately your only alternative is to call 999 to get him to hospital

 

[garnuft]

I think the thing is Hollywood, your husband has been really ill, the GP said so.
He is convalescing from a significant illness.

You should try to avoid taking him to the GP's for consultation, request home visits.
You'll have to fight but mark their cards and let them know you are there.

The worrying thing is that he isn't awake enough to eat or more importantly drink.
I would ring GP's and ask for help, support and advice and also ring Social Services and explain to them the predicament you are in.

I have found it useful to write everything down that I need to say, otherwise the conversation drifts away and I end up on my own again with the same problems.

You need help and support, even if it's just someone checking that he is OK or advise on how to manage things to help him recover.

I did the no care plan mistake myself, it's easy done....they encourage it.

Best wishes, make some notes and some phone calls, it's a creaking wheel that gets oiled. X

 

[Saffie]

and was declared medically fit 2 weeks ago and sent to a rehab ward as he was very confused.

Going by the quote above, your husband has only been home less than 2 weeks. I suppose then, that he is still very much in recovery mode and Septicaemia is serious and he will take time to feel stronger . As the GP has said, it is still early days. However, to sleep 23 out of 24 hours is a bit excessive and his food and fluid intake is too low. I think I would ring up SS again and ask for an assessment a.s.ap. and if that fails to produce any help, I would return to the GP, or ring him/her up and and reiterate your concern in the hope that he or she might put some pressure on SS to put some sort of plan in place , even if only temporarily. Good luck. You certainly sound in need of urgent help.

 

[Jrrs]

Doctor must realise that he is not taking in enough liquid and therefore must be very dehydrated - this in itself could be causing the drowsiness - only speaking from personal experience, I'm afraid I'm no expert, but this can be very serious.
Hope you get some help fast

 

[Hollywood]

Thanks, everybody.
I don't want him back in hospital, I don't think it will do him any good at all. I will do some phone calls tomorrow using lots of SS "enabling" words and phrases.
I needed some third party thoughts and you have helped enormously, thanks again. x

 

[Jessbow]

My Main concerns ( for you to stress ) is

Dehydration.
Almost unconsious state 23/24 hours
His inability to recover whilst not taking nourishment onboard.

I really think he needs IV fluids- and hosp will have to be the way to go, otherwise you are going to go round in a vicious circle.

Even non medically trained, I dont think 2 weeks on he shouldn't be sleeping 23/24 hours, in recovery or not.

I think you have to be strong and persued them to take him back to hospital, not ideal but this cant continue , for you or for him.

Be strong

 

[Nebiroth]

Telephone the doctor and say that you are concerned that your husband is becoming dehydrated because you can't wake him enough to give him fluids. This is much more important than food, although note that quite a bit of fluid intake comes from food so if he is not eating then drinking becomes even more important. As said, the tiredness in itself could be caused by or at least made worse by the lack of fluids.

As said, septicemia is a significant illness and therefore it should be no surpise that there is a period of prolonged recovery; this would be the case even in a healthy young adult. I presume that you told the doctor about his extreme sleepiness, if so the doctor does not seem to have been unduly alarmed by it so it could just be recovery from what is a very severe illness.

You should also call the social services emergency number (it should be in the phone book) and say that you are physically incapable of providing the care your husband needs, which is far in excess of what you were given to expect.

If your husband shows the classic signs of severe dehydration - these being producing little or no urine for 8 hours or longer, a weak and/or rapid pulse, cold extremeties or sunken eyes then you should call for an ambulance. One classic way to tell is the pinch test - gently pinched flesh should snap back quickly, if it stays in peaks, this is a sign; but it can be difficult in the elderly because they have loose and inelastic skin that tends to stay peaked anyway.

If your husband can't or won't drink then it is worth trying small amounts of fluids frequently. Try giving sips in a teaspoon. Even a small amount of liquid is much better than none.

Frequent sips are the same advice when preventing dehydration in someone who is vomitting. Small amounts frequently are just as good and are less likely to upset.