This topic contains 11 replies, has 4 voices, and was last updated by 
eve 11 years, 8 months ago.
Ian has been advised by the doctor in rehab that he will not be out of bed until the bed sore he has on his bottom has healed. This could take months and he will now be so depressed and we thought he was moving forward. They will work on his uper body and legs when he is in bed.
Why is life so unkind, it seems we get one step forward and 2 back.
Maureen
Hi Maureen
It makes me angry when I. Hear people having bed sores,the NHS have ripple beds and if he was given the nursing he should of had,a man of his age should not be in this position,I could under stand it if he was frail,as it is very hard to avoid bed sores.
I can only tell you all the time my husband was in hospital,I bed bathed him and massaged his body to get the blood flowing all pressure points were creamed and if any readness persisted I made sure he never had pressure on his body,it is the only way to do it,do it yourself the nurses just let me get on with it,I had the time. They do not.if he cannot move get pillows and make sure he is turned every few hours,
Maureen I use to go into hospital at 8am and leave at8pm,hard work but the nurses knew and respected,that I took god care of my husband,I am sure that is why he was allowed home with lots of equipment ,took a few months getting him on his feet.
Maureen I do not know you situation but if you can spend the time doing this its worth it .Eve
Hi Maureen,
You and Ian have both had a very tough time, I do hope the work they will do on his upper body and legs will help for when he is allowed out of bed. It is another set back but you both need to try and stay strong (easier said than done, I know) and work towards getting Ian home.
My thoughts are with you both.
Megan
Hi Eve
Ian got the bed sore when he was in Edinburgh waiting for his spinal wound to heal. The nursed there turned hime every 2 hours but when he was transferred back to FVH the nurses didn't turn him as they said the air bed was enough. This is what has set Ian back and he is now getting turned every 2 hours. I
I am working 3 days and the hospital is 30 minutes away which is quite exhausting twice a day as I have done this for 4 months now. Poor Ian I cannot think what it is like to be in his position but I try to make him positive and keep him busy. I took him in a samsung tablet so he can download puzzles etc.
We take every day as it comes and sometimes with a little help from a pill.
Take care
Maureen x
Megan
Thanks for your reply. We are trying to stay positive as the bed sore has to heal before Ian can move forward. We just take a day at a time.
My daughter is having a civil wedding in July in London and hopefully Ian will be well enogh to attend. That is his next goal.
Maureen x
Hi Maureen
You must find it hard with working,have a word with husband,and tell him to make sure they turn him over,and ask can the physo massage his pressure points,or when you go in give him a massage,it,s good for circulation plus relaxing and in general will make him feel better.
When Slim was in hospital an I pad with Skype on it helped keep Slim in touch,plus a kindle less heavy to lift than books,
Ian has a goal now to get better for the wedding,I do think it is important to have some thing to look forward too ,as there world gets very small when in hospital and very I'll. Eve
Hi Maureen,
I'm sorry to hear that. It's really not fair, is it? But hopefully the bed sore will heal quicker than your worst fears and the physio on the upper body meanwhile might at least give Ian something to focus on – along with the wedding which is a great goal and at least there's still a fair few months before that so I'm sure it is possible.
You must be shattered with all the to-ing and fro-ing. The Samsung tablet is a great idea, I know it really helped me when I got an iPad when I was in hospital. It's amazing what you can do on them!! Also it's probably hard to see when you're close up to it every day but remember that Ian is making progress, even it it's slow – and this will all just be a nasty memory before too long, once he's home and the summer is here!
Hope you're looking after yourself. Thanks for your earlier very kind message to me, by the way. I'm doing pretty well now, I've been back at work for 4 weeks (working usually on about 3 days a week and building up). It's been quite a shock but I feel more in the swing of things now. And I do look back now and see how much progress I've made from the worst times.
All the best,
Helen
Hi Eve
Thanks for your advice. I have started massaging his pressure points but as he is not in a room on his own I can only do some of them but Ian does like it. Doctor has decided that he can get out of bed and sit on a special chair for one hour per day.
Not very impressed with NHS as Ian is always worried about his care and the inconsistancy. Yesterday he was lying on his back as the padding to tilt him 30% was not put in place properly. Staff nurse who put in the padding tried to make light of it andsaid Ian must have moved, but he can't move. Really worrying sometimes.
Maureen
Hi Helen
It is a big shock to discover that you have myeloma but as you say Ian can make progress. I try to get him to think of the positive things that have happened but it must be hard for him to lie in bed every day. He is on day 12 today a dex day so he will be stronger to do more physio.
I find I need a release and try to get some of his friends and family to visit in the afternoon and I visit at night. I am really tired trying to do 2 visits a day.
Hope you are in remmission for a long time and work is not too much for you. You have to get back to some normality and I also went back to work for 2 half days and 1 full day otherwise I sit about and don't get anything done.
Not too confident about Ian's care in the NHS. Doctor has now said Ian can get up for 1 hour and sit in his special chair so that cheered him up.
Take care
Maureen
Hi Maureen
I use to just draw the curtains and get on with it,I cannot tell you how many times I went in ai 8am and he had been ringing for a commode,I use to go out to the sluice room disinfect the commode help him,then took it out cleaned and disinfected it again,then a nurse would pop her head round and ask what he wanted half a hour later,have to be careful here because his time in one ward was unbelievable.
They put the auxiliary in uniform and they consider good nursing beneath them!!! .Maureen as far as I was concerned they were not going to kill my husband off with an infection,and the consultant wanted him near the nursing station ,they just got use to me coming in and left me to it,I must admit I am a bit scary when I get a bee in my bonnet.but when you have to tell a qualified nurse that the swelling in an arm is because the vein has collapsed ,it's frightening and she left it because she said a mother nurse would be coming on who would redo it.,a nurse gave him someone's tablets although he said there not mine,she only checked after he took them.i could go on,but its over now ,I just know you have to be active yourself,there not gods. Love Eve.
Hi Maureen,
That is great news that Ian is allowed out of bed, even if it is only for an hour, it is a step in the right direction. The civil wedding in July will also help as a goal to work towards.
It does seem that there is a lack of good care sometimes in the NHS, Phil has mostly been very lucky but there have been a few instances where we have not been happy, especially during an A&E visit and admission to a local hospital instead of the normal hospital he has his treatment at. We need to put so much faith in the system and it can be quite scary at times.
I know it is hard but please try and look after yourself as well. I know from when Phil was in for his stem cell transplant in December/January how tiring it is running from work to the hospital and then back to work and then home to do the laundry so Phil could have clean clothes everyday and then back to the hospital. You need to stay healthy for your sake and for Ian's so please ask for help from friends and family if you can.
Stay strong.
Megan
Hi Maureen
How are things going,Ian must be feeling low,if he is anything like my husband he will not be voicing his fears,because he will be worried about you,plus the Dex confuse s them,when Slim was like that for some reason he got it into his head,that I wanted to stop coming,I was just getting so worn out, I would ring him in the morning,hoping he would say come it later,but he just wanted me to look after him,but Kings was a long way away,looking back he can now see how unreasonable he was,but when they are stuck in hospital it's very hard to see things logical.
I took scrabble in and we would play,as he hates tv this seemed to help,there is only so much you can talk about,and the more you keep telling them what's going on in the world the more they feel they are getting left behind.
Hope you find the energy,I also got a cleaner so I did not have to face that when I got home late,and she is so good I kept her on. Love Eve.
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