Dad in hospital, me in tears with frustration

[mears]

how it started

I feel such an idiot but have just been greetin' down the phone to the nurse looking after my Dad.

This is going to be a ramble because I am so frustrated.

I was frustrated when he was admitted to hospital because nobody would listen about his full medication history. He was always classed as having asthma - but in fact he has been classified as having COPD on this admission to hospital (chronic obstructive pulmonary disease). My mum therefore considers his chest condition to be easily sorted with the right inhaler when infact he has a chronic chest condition that is only going to get worse.
Yesterday his oxygen therapy stopped and his IV antibiotics were changed to oral. I phoned in the morning to ask about his progress and actually spoke to a doctor on the ward. She said they were happy with his chest and so was he (he has Alzheimers and will agree to anything!) and that they were stopping his nebulisers. She was unaware of the fact that he has been nebulised 4 times a day for years and also has a steroid inhaler twice a day. I told her I thought it was disturbing they did not realise that when I had given them that information on admission. Also means they have not looked very much into previous admission history either. Anyway, she thought it wasn't a problem they would just get that started now.
Went to visit him last night and the steroid haer that he is getting was sitting on his locker - it is a type that he will not be able to co-ordinate his breathing to use. He normally uses a spacer and with his Alzheimers it is important to have familiarity, so got the nurse on duty last night to sort it out.

Next problem is he has been treated for glaucoma for years. His eye drops went in with him. That information was given too. He has not had them since he was transferred to this ward on Monday. He has 3 types of drops, one of which needs to be given 4 times a day to keep his eye pressure under control.

Next problem is that he had a leg ulcer treated which was at the stage of being almost healed, just a tiny circle of dry skin on it. It is now flaring and was blue underneath last night. The pressure pad that he had in place with a stockinette in place has been thrown out. Again no-one was aware of the fact he has been seen by the leg ulcer team.

Next problem is that he is now sitting in a pair of incontinence pants because he does not ask for the toilet - he knows when he needs to go but cannot push the buzzer for the nurse - mentally he just cannot equate the buzzer to the nurse coming.

I have spoken to the nurse looking after him this morning and emphasised that we need him home ASAP. She will say it at the ward round. She will also let them know he has never been seen by anyone from the respiratory team despite being nebulised at home for years.

We need him home but we need input from a range of professionals. Need to go just now but will be back soon to rant about the treatment he received from one of the nurses that is going to result in a written complaint. Problem is that a complaint needs to go in about the total lack of communication. So many complaints will probably make them think we are professional complainers

I am so disappointed with the service I work in

I am so sorry to read about all these problems mears.It just isn't right is it? And you know your way around the system. For what its worth I have to say that I am daily more and more horrified by what I read on here about the NHS. Having worked in the NHS in its heyday between 1975 -85 I am greatly saddened by what is happening.

Oh Mears how sad your poor dad. No wonder you were crying . Keep talking/complaining until you get the care your dad needs and the help that you and your family need to support him.

{{{{{{{{{{{hugs}}}}}}}}}}}}}}}}}}

Oh Mears hope it gets sorted soon and you can get your Dad home {{hugs}}

mears

its ok hes not on O2, COPD pts on O2 can sometimes be CO2 retainers

he might be not requiring nebs, but as you probably know he should go for a respiratory function test first and be seen by a resp medical team

there should be a tissue viability nurse in the hospital to see to the leg ulcer and a would care plan set up, even if it is only superficial at the moment

the glaucoma treatment is very important, how could they miss that?

im sorry you are having so many problems, you need to make an appt with the sister, and a seperate one with the reg/consultant

but you probably already know that

what kind of ward is he in? is it medical admissions? they usually have crap basic care plans

he should be transferred to a resp ward maybe?

does the hosp have a patients advocate? you can sometimes find oral complaints are better than written ones, and you also have a face name and no. for future reference

Hi nailpolish - I am happy that he is off the oxygen now. I asked the doctor yesterday (over the phone) about referreal to respiratory team - she said it wasn't necessary. Think she was just a junior doctor though.

I have downloaded the NICE guidelines for COPD so am armed with info.
I want to know if he needs to be nebulising 4 times a day with combivent or whether he should have it changed. I don't know if it really makes any difference. Is it the most appropriate treatment?

He also has been put back on steroids. He is on 40 mg a day. Each time he has had a course he has had them for 7 days then stopped them dead - no reducing dose because the GP said that reducing was no longer necessary. My sister who is an ITU nurse says that is wrong. A&E nurse said that is wrong too.

What I want is for him to be sent home at the latest tomorrow - preferably today. His Alzheimers will get worse whilst he is in these suppoundings. We also need him home to get his toileting sorted out again. We managed it last time so hopefully we will again. He wasn't catheterised at all this time.

However, I do not want that to mean he does not get any input form the professionals he needs. He has not had any respiratory test for years. He is managed by the GP. However, having read the guidance, I now realise that is wrong.

And yes, he is in a general medical ward.

Thanks also to Pamina3, GRMUM, Gomez, almostanangel and Frizbe. I find it helpful to let off steam and get virtual support - thankyou

i forgot about the toileting

what do you do at home? how does he let you know? should the ward keep a commode by his bed or would he have enought time to get to the toilet? is he pretty mobile? pad and pants is last resort IMO

you are right he is better at home. would it be a prob for your family to bring him in for tests such as resp function as an OP or would you rather he did it before discharge

i think the majority of pts with COPD have steroids, low dose but monitored closely as they are always changing requirements

i wish i could be there as his nurse to help

its very frustrating

When he needs the toilet at home, he gets up and walks through to the bathroom where mum (or me) hives him a hand to use a bottle because his aim is hellish. Sometimes he strts to wet his trousers as he gets there. The only way you know he needs to go is the sudden movement to get out the chair and go. We try toileting him after meals but that is not always successful. Last time he came home we took the padded pants off him and just kept washing wet trousers when there were accidents. He slowly regained continence but was wet at night. He had a sheath on in the hospital which he couldn't comprehend initially. The day before yesterday he indicated that he needed to go. Yesterday at visiting in the evening mum and I put him back to bed and his continence pants were soaked which he was oblivious to.

I would like him to have his respiratory function assessed properly while he is in but I do not see them
a) agreeing to it and

b) if they did, it won't be before the W/E.

Will be phoning back at lunchtime to see what the doctor said. If he is not getting out I will make an appointment to speak to the consultant.

sorry you're going through this mears, let me know if I can help in any way. I'm off work for the next fortnight, so could fetch and carry for you, if you want.

Re: the steroids, dd has to have big doses every now and then for a flare up of her (mild) asthma- gets 20mg for three days then stops. No reducing, so don't think that reducing is always necessary.

would you think a long term IDC would be the answer? through the abdo?

please see the sr/cons mears, make an appt to show them you mean business

is your mum ok? does she have all the info she needs about his meds? your poor mum, she must be worried about what is going to happen

im off now to cook a batch of babyfood (yum!)

so ill hear later how you get on xxx

Thanks Tissy

I have now got a mental plan of action so I am feeling a bit better now (ward doesn't know this though).

I will push for a review by respiratory team - if this cannot be done prior to discharge I will take him back as outpatient.

I will speak to his GP later

Am phoning back at lunchtime - if he hasn't to be dischrged I will get appt. with medical staff this afternoon.

We will take him home tomorrow at the latest (hopefully today though)

My concern about the steroids just stopping is that he alsways gets very depressed when they stop. Takes a while for him to pick up. The COPD guideline does recommend antidepressant therapy so wqill ask about that too.

Have spoken to my nurses sister who agrees he needs to come home. She says if there is any hassle then give them a rundown of the problems with his care so far...

If we get him out I will stay with mum NP. She just wants him home too but will need help. Will update you later.

I'm not surprised you've been in tears, Mears and tbh, I'm not surprised at your dad's sorry tale. It seems only too common nowadays that no one is in charge and no one speaks to anyone else.

If your dad has to be in hospital do you think a geriatric ward would better understand his needs? When my dad was dying the geriatric ward was marvellous, a fantastic contrast to the admissions ward he'd been in for days.

Hope you get your dad home soon.

Well he is getting home tomorrow. The nurse I spoke to has been very helpful. She will make sure that his medicines are ordfered from pharmacy so that he gets home as soon as ppossible tomorrow. She has spoken to the respiratory sister and I will speak to her tomorrow. She told my mum to bring up the nebuliser machine from home and the medical physics dept has provided a new one. His other one wasn't working so well.

I phoned his GP today and he says he is happy for me to get him home and he will visit him when he gets home.

Apparently he has been continent this afternoon so that is good. I only arrived at the end of visiting so only saw him for a short while. Am going back tonight.
It makes such a difference when someone listens to you and follows things through.

Definately feeling much better now. He looked really settled this afternoon. He's happy to know he is going home tomorrow

Hi Mears, I'm so sorry to hear this and I'm glad your dad is coming home tomorrow. We too were very frustrated with the treatment our dying father got (they 'lost' his morphine, were rude when he asked for it, came to collect him for his op with no portable oxygen even though he wouldn't have made it to theatre without it - they must kill a fair few that way!) and we wrote a cross but reasonable letter to the trust chief exec and hand delivered it. We didn't have the time to mess about as we knew he was dying and it did get instant results. Maybe it isn't relevant for you and your dad now if he's coming home but just a thought, perhaps it'll help someone else. It really is shocking and tragic when people are treated like this isn't it? I'm so sorry this has happened to your dad. Anyway, I just wanted to tell you what we did and to let you know I'm thinking of you. I do wonder what happens to the people who don't have someone to look out for them.

mears, how sad that your father met with this disappointing treatment i'm glad to hear he is coming home and seems to be somewhat better.

hi mears

good news that your dad is coming home. have they changed his meds? i hope he has good follow up. im glad they listened to you in the end.

www, if there is no one at home for someone to go home to, they just stay in hospital. its the saddest thing ever.

Feeling much more happy today (AF is here, was probably emotional due to that too yesterday)

Will collect Dad this afternoon.

Have spoken to the respiratory nurse (who was lovely ) this morning and she will see him when he is home.

He will stay on his usual nebuliser regime along with the antibiotics and steroids at the moment. She explained that short sharp courses of steroids can be stopped strainght away but that if he has had recurrent courses over the year then he may need a longer course which would be stopped in a reducing fashion.

We will discuss having the necessary meds at home to deal with an exacerbation in order to prevent hospital admission. She will also chech his oxygen satruration and in the future, if it looks as though he is needing some oxygen he could get that at home too.

He will also see a physio at home within the next week and will also be reviewed by the leg ulcer team at home.

I feel sorry for those relatives who do not have the knowledge to ask for these things - I am frustrated that I have had to push for it. It certainly was not forthcoming. I have to say though that the staff have been very good over the past 2 days.

All this frustration I think has kicked off by the lack of communication with us from the start.

I have decided to progress that and am seeking advice on how to highlight it without making a formal complaint.

However, I will be assisting my mum in submitting a formal complaint about the actions of one of the nurses who was actually shouting at him when changing his sheets behind the screens. My mum was there and my sister heard it too. A visitor in the room actually approached my mum to say that it was a disgrace the way she treated him and that he nearly intervened.

This resulted in my mother bursting into tears.

I am concerned that she displayed this behaviour with relatives and visitors present, which makes me think she reularly behaves like that.

Oh the joys......

Dear mears, I have seen many of your helpful posts on here and just wanted to say that I'm so sorry you have had this awful experience. I'm sure your Dad will be delighted to be going home. Thank goodness there are people like you and nailpolish working in the NHS.