General Chat

That is a good idea Liz. Typing it out would help Brenda to see if she has missed anything as well. And welcome back, Liz. We have missed you.

Huia.

Hi Brenda, been off line so trying to catch up with things on here now

I am sorry your poor Dan has had such awful treatment and your needs have been ignored as well. So glad you found the energy to stand up to the idiots who think they know it all!

Hope your man can be looked after better in future in the hospital and home and you can get some rest as well. You have been a real star looking after him so well

Take care and good luck, keep fighting back

Would you be able to type out a list of your complaints to leave behind with the people at the meeting, after you have explained them all to them first?
They wouldn't be able to say you had missed telling them something then.

Big hugs,

Lizxx

Thank you everyone for listening to my gripes.
Suzanne,we have had carers twice a week,but sometimes it's been more hassle for him.
They have talked about a hoist ,but I think the time has come where I can't take this.I have lost a lot of weight and feel weary.If he does come out of hospital and go to a nursing home for a couple of weeks I may feel different,but I have had this for over 5 years with the last 12 months terrible. Without a carer living in it would be a lot of the same as his needs are not at specific times.
We will see what tomorrow brings.
Izzy,with all the stress and worry you are still having it is so nice to see you caring for others.You are an amazing family,and for young Ashley he is only at the beginning of his life,Dan is 76,he told me the other day that he wants to reach his 77th in Sept.I said was that his short term goal!

hi brenda.what aterrible time you have had.couldi ask you from which part of wales you are from?do you have homecare(carers coming into your home to help you?(local council).you may not be aware but carers or nurses arenot allowed to lift(its costs local health trusts thou in sick pay for staff who have hurt themselves through lifting,and in some trusts you could lose your job) you should ask your council or health trust to fit hoists.also you said that your hubby was sent home from hos,well satsof 60% for someone with chronic lung problems is not a serious condition,but a frightening time for you all the same,maybe someone should have spoken to you about the reason for sending hubby home.i hope hes well soon.x

Brenda my darling my heart hurts so much to hear the awful way you and your husband are being treated .People in the 'healthcare system' really should take a trip down the yellow brick road, meet up with the wizard of Oz ,and ask if he's got any spare brains they could purchase!!! It doesn't take a rocket scientist to work out that the best way to assess the patients needs is to talk to the person who has been caring for them for the past x months and years!!!!
Will be thinking of you and sending a strengthening hug to you for Mondays meeting. xxx

Went to see him today and he was all packed up to go to the main hospital that he should have been in this time last week!! It's unbelievable as he has a chest infection and is hardly conscious.I don't think leaving him outside last friday did him a lot of good!!He has been pushed from pillar to post and I have been 5 hours there waiting to see a doctor,who was a young woman full of a cold.
They thought I was stroppy,but they haven't heard the last of this.
I am using this thread to remind me of all the points I'm going to put in my report so I don't forget anything.
My OH was a Met police officer and hated inefficiency as I do,and we wonder what the world is coming to.If only they had admitted him last week all this could have been avoided.

I am soooo angry!

Good luck for your meeting Brenda,

one thought sprang to mind, do the medicos give any thought to your OH being left with any dignity ??

Take care

Susan

Best wishes for a good result from your meeting on Monday, Brenda.

Huia.

Thank you Susan for understanding.

Went to see him this afternoon.He seemed drugged,but when I asked to see what medicines he was being given(he takes over 30 pills a day),they said they hadn't added any.Took him for x ray while I was there,and then the 2 young physios came for him to try to stand up,,,which anyone could see he couldn't.
However, I am going to the meeting on Monday armed with a list of all the things I have had to do,especially for the last year,and MAYBE they may get him into a local nursing home....but I WILL CHOOSE IT.

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

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.

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.

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!

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!

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!!!!

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.

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.

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.

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, 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