General Chat

Yesterday,we had a day of days we could have done without.

My OH who is very seriously ill and getting much harder for me to look after as he has pulmonary fibrosis,on the highest level of oxygen with a mask attached to a bag that inflates.He can hardly stand and I take him to bed from his chair in a wheelchair and have to almost lift him into bed.
I'm constantly checking on him and after we'd had lunch I was in the kitchen and just happened to check him and the bag was deflated and he wasn't concious,so I pressed his careline button and the response was very quick with a very good paramedicwho found out that one of his machines wasn't on and quickly revived him and checked him over.

As his oxygen level was only 60% and wouldn't get better he no alternative but to get him to hospital and sent for another ambulance.I couldn't go with him as had to wait for the oxygen people to check the machine.
I expected them to at least keep him in overnight....WRONG.

A couple of hours later I had a call from a sister in A&E to say could I come and pick him up!I was astounded as you only had to look at him to see there was no way he could get in a car...and he hasn't been able to go out in 3 years.I said he has to come by ambulance.

About 3 hours later he arrives back in ambulance with 2 ladies (don't think they were paramedics) who brought him in his wheelchair,nearly tipped him up,and then couldn't get him over our double glazed porch and then up a step into the hall.So,they had to call for another ambulance to help.THey just left him outside,no coat,I quickly got a blanket and put a thermal hat and scarf on him for 20 mins or so till the ambulance came.
good job it wasn't raining,but even though it was a nice day we are quite high up overlooking the sea and there was a bit of wind.

He was so tired and stressed,only had a cup of tea in hospital.

Later on I couldn't get him into bed as couldn't lift as he couldn't stand,and had to get out another team,this time paramedics,to lift him into bed.

I am now arranging for extra help as his condition has deteriorated....but this hospital was always so good,been in a couple of times myself,but the standard of A&E seems to have gone down,and OH said it wasn't busy and the doctor he saw,foreign,didn't know anything about his condition or his oxygen and tried to take the mask off him.

Had no complaints about the service we get till now as the Chronic conditions nurse,and oxygen nurse who are very thorough and come regularly.Yesterday's episode we can do without!!

Good grief! I think I'd be putting in a complaint to the Hospital Trust!! It's not surprising you are steaming!!!

But at least it has hi-lighted that you need extra help, and perhaps extra equipment eg a hoist, and someone to come in morning and evening to help get him into and out of bed.

You might/ought to be able to arrange for ramps, either permanent or temporary, so he/you can use the outside doors, even if it is only for emergency use like yesterday.

You can ignore small mistakes, but this goes beyond. His life was endangered. You must do an official complaint, stressing the fact that the doctor who saw him did not understand that he has to be on continuous oxygen. He will make this mistake again if he is not reprimanded. I have made it a practice to speak up loud and clear in these situations. If someone is incompetant it should be found out sooner rather than later.

Do you have an occupational therapist? It looks like you need to be re-assessed.

Make your doctor very aware of the situation.They will have a louder voice than you if you complain.

Thank you for your replies.
I am going to write a letter of complaint to the hospital.If I don't get service I always do,if only to make them aware that people cannot be treated like this.
I have just had a call from the Careline to say that she is getting in touch with the emergency team to help out over the week-end and our needs will be re-assessed,I told her how disgusted I was and a brief description of what happened...so awaiting a call.We have even contacted our MP before now to get things moving,and must say he was very good.

We do have a wheelchair,comode and raised toilet seat from our occupational therapist,but his lift up bed,walker,massage recliner chair are all our own.

Think this episode and the threat of complaint will get something done....and it is not an idle threat!I WILL DO IT!!

Had to get this off my chest.

Any other advice welcome!

Brenda x

A few small adjustments would make a huge difference it would seem. Portable ramps.We had them for the back door which meant I never really knew where the old man was.Still don't,we have an extension now.

OT's butt needs a kick.

Sharron,
There is no point in getting ramps as OH cannot go out,only if I push him,and believe me,he is no light weight,and don't forget he has to have his oxygen and the tubes get wound round the wheels,so the chair is only to get him to the toilet,bedroom and lounge.He relies on me for everything,and I mean everything.

There is an addition to the Saga.

Emergency Home Care rang me to see if I needed help tonight.They asked what time he went to bed,and I said 10-11pm.
She rang back and said they could only come at 7pm,so I said that's no good as he wouldn't sleep through the night and the TV is his only bit of enjoyment.Then I said who would you send,a lady?yes she said,so I asked her if health and safety would allow her to lift...Oh no!!!!!
Well then what would she do?....She would get in touch with the paramedics.....Oh yes,so what's the difference in me contacting the paramedics?...nothing she replied.
Why can't people get the right message and listen to what you say...it takes 2 to lift him!!!
Anyway,big meeting on Monday with Social workers to resolve the issue.....holding my breath!!

Brenda, so sorry you had such a difficult time and feel sad for your hubby to have been treated so badly especially when you weren't with him. When you look at the cost of all those ambulances coming out it would have been cheaper to have kept him in hospital a little longer and a proper team bring him home later, like today.

If I were you I would contact your MP again now, so that he can look into all this quickly. It could happen again to someone else who might lose their life over the errors, before your letter and investigation starts.

Best of luck to you both, I know how hard it has been and hope the extra help will be good and your o.h. will feel more comfortable with the people coming in, you will get a little rest perhaps.

Take care

Lizxx

Just about managed to get him into bed last night as he wasn't quite as weak as after he'd been to the hospital and had a traumatic day,but still can't carry on as I'm tired....so maybe tomorrow will sort something.
I have a slight hernia and find the wheelchair difficult to handle,so that doesn't help matters.Also waiting for the continence nurse,who is on holiday,to sort out a catheter instead of the sheath one which is getting very difficult.
Brenda x

Brenda, sending much love and prayers to you both, you need some extra help or else you will be getting unable to help your oh. take extra care ,
love and prayers Jean and Jeff xx

The Saga continues.....

Bad day on SundayCalled for ambulance with 2 strong men to get him into bed as it was impossible for me to lift him from his wheelchair.


Mon 25th.

Not a good day.Dan decides himself to get an ambulance to get him to hospital,so I make the call.Rapid response car turns up with paramedic,very quickly,but it wasn't what we'd asked for and he couldn't do anything except do his checks and suggest I call out the out of hours doctor,which I did.
nice chap,but tried to get Dan to stand up and get into wheel chair to get to bed,but he was too weak to move.
Instead of getting him to hospital says well you can sleep in your recliner chair and we were both too tired to say different.
I tried to sleep on the settee not successfully.and to add to it,his sheath came off and although padded he was wet.Couldn't move him as was too distressed.
Tues 26th
Phone my sitter that I have for 2 hours on Tues to cancel.but she very kindly got in her car and came to help me get him changed as 1 person couldn't.
Mc nurse aND SOCIAL WORKER PHONED,ALSO dR TO SAY HE MAY HAVE TO GO INTO A HOME BECAUSE OF THE BED CRISIS.I kicked up a fuss and told the Dr that I was going to put in a complaint and contact my MP,absolutely disgusting when I have kept him out of hospital by caring for him at home for 5 years and the last 12 months have been a prisoner only going for a supermarket dash and 2 hours while the sitter is here.
However after 2 hours with another team who came to decide whether he was FIT to go into hospital eventually he went in at 6 last night for up to 2 weeks max and then home where they will sort me out a package.

Feel like getting on to WAtchdog and the media!!!!Tootired though at the moment to give it my best!

Brenda, much as you might wish to continue to care for your OH, dont do it at the risk of your own health. What will happen if you collapse from exhaustion, both physical and mental? You would finish up in hospital and your OH as well. My OH has alzheimers and I was trying to care for him at home, but I wasnt getting enough sleep and it came to the stage where I had to give up before I collapsed. Please put yourself first.

Huia.

take some time out for you- he'll be well cared for, and at least you have a break. You sound very stressed.
Dont wait for the two weeks to come round, keep making waves NOW, equipment takes time to source and supply.

Thats nonsense about waiting for an incontinence nurse to put in a catheter. Any competent registered nurse should be able to do that.
As said, you would do better for the both of you for him to go into a home as you would then get back your health and strenght to be able to supervise his care is done as you would like it and you would not be so stressed that you cant have a decent conversation with him.

Jean,

I have a friend who is a theatre sister and she says that things are not as they used to be.they have to fill in an 8 page form and a lot of admin before they can fit a catheter these days.....health and safety!!!!

Brenda, all I can say is that that is still more nonsense on the part of health and safety. Peoples lives and comfort put at risk because of a few petty rules written by beurocrats. When will commonsense prevail. I am aware that it is more difficult to catheterise a man than it is a woman, that is why the staff do their training.Makes nonsense of spendinf years learning the job!

Visited Dan this afternoon as there was a meeting going on round his bed with at least half a dozen.Told that they were planning to send him home on Fri and would have to get things organised at home!!I was livid and said there is NO WAY I can look after him yet,even with extra help.I NEED A BREAK.Meeting next MONDAY.THe other daft thing is that they don't have the amount of oxygen to keep up with his needs...so I said why didn't you take his 2 machines that are doing nothing at home.Got them to call the oxygen nurse at the main hospital and that is being arranged.

Thing a few brain cells are required.Rang Macmillan nurse when I got home and she couldn't believe it!

Well done at standing up to 'them' !!

Sometimes it needs the Carer/n.o.k to have a hissy fit to get through to the professionals that you need a break. (You could always say you are going away, so he'd be returning to an empty house ) ;-)

Hope something acceptable to both of you is worked out quickly.

Good on you Brenda. It is high time you got stroppy. Keep it up. It is the only way to get through to them.

Huia.

Hello Brenda,

I honestly couldn't believe what I was reading when I first read this thread.
I don't know how you have managed for so long without falling ill yourself.

I hope things get sorted quickly and properly once and for all for your OH and yourself.

Take care of yourself and well done you for speaking out.

Susan