[GcarerParticipant]

Hi, Not been on for a while, had all sorts of setbacks, Howard at present has been in hospital for four weeks, he went in seriously dehydrated and very poorly, they have had him on a drip for over three weeks, they tell me his kidneys were drying up, he also has a chest infection, and now has pneumonia, he hasn't eaten much now for over five weeks, and also before that didn't eat much, the result now is I asked for him to be weighed yesterday, he is now 8st 10lbs, this is devastating, I don't know whether he doesn't want to eat or his illness is causing this.
Please has anyone else experienced this, I need answers, I am going out of my mind with worry, I am literally watching my husband slowly fade away, I wonder if it's too late for him to fight back from this. So sad.
Gail xx

[GillParticipant]

I have my fingers crossed for you both, and hope Howard picks up soon. Have the hosital offered him any build up drinks? You can buy them from the pharmacy as a food substitute.

Kind regards Gill

[GcarerParticipant]

Hi Gill,
Howard has had every kind of build up drink going, he just doesn't seem interested in food or drink.

[eveParticipant]

Hi Gail
Howard can fight back but he needs all the help you can give him.
You do not say if he is on a ward or in ITU.!!
If he is on a ward get the dietician on board,and be there at meal times and feed him,even if it is only a few mouthfuls plus stay by his side and make him drink,its hard I did it for 22 days.Take anything in he will eat.the build up drinks help if he will take them plus they sometimes have shots that are 100 calories.
My husband was taken into ITU with Septic Pneumonia in ITU for 9 days and then on a ward for 12 days,they loose interest in everything,the drugs make them confused,and it takes time to get them eating drinking,and walking again.The nurses do not have time to do it.I was at the hospital from 8am to 8pm.looked after all my husbands care.hard work but doable.
The drugs will deal with the pneumonia,its the rest you have to deal with.

It is easy to right some one off,he just needs nursing,Slim came out at 9st 41b built him up again to 11st just has SCT and now weighs 9st8lbs,but this time he is healthy before,lots of damage to lungs.It is doable,but you have to do it.Eve

Just read previous mail is he in hospic or hospital after reading your previous post,it sounds if he is having palliative care.!!!!

[GcarerParticipant]

Hi Eve,

He is in hospital waiting to go onto the hospice, he is having palliative care, he has only just come off all his drips, so if he settles down now and nothing else happens he should be there soon.
He is getting all the support we can give him, also he has a dietician, but he still isn't eating, he's had all the drinks that are available, he has also had the mental health team assess him, they say he is completely sound, this is why I don't know where to go next.
I've also taken food in for him, he just looks at it as though it's alien, he was such an active man doing a very heavy manual job, this must be destroying him, he won't read, basically he doesn't do anything.
He has now chosen to come off chemo, so what can I do.
He has had no quality of life now for six months, I do a daily diary and it's sad when you go back and read what has been going on.
All I can do now is keep supporting him and hope he starts to improve.
Gail x

[eveParticipant]

Hi Gail
I am so sorry Gail,you must be beside yourself with worry.
Some times people choose there own fate and it must be awful for you to watch,it does happen some people choose,not to fight.
I can only imagine what it must be like for you as the carer.Howard is a very brave man,his decision must have been hard to not fight and leave his loved one,s before his time.
You have done all you can,his body his life.it,s so sad.
The hospital have to respect his decision,as you said the mental health team says he is of a sound mind.
You know your husband best is there anyone or anything that would give him the will to live??

I can only speak of my husbands experience,he has upto now had over an extra year,and hope to have at least a few more years,and I intend to make the most of every minute,although we live with the knowledge that there is no cure for my husband.

My heart goes out to you and your family. Eve

[GcarerParticipant]

Hi Eve,

I'm afraid his long life dream and what he has worked for for all of these years has been shattered and I think this has got a lot to do with it, and the fact he won't be able to see himself sat in a chair doing nothing, would to coin a phrase kill him.

I can only think he has thought about this for a while, and looked at the consequences, and they will not be acceptable to him. He always said when he retired he would not stop, he would carry on with his mountain walking, cycling, swimming, it's just not the life I think he would want to live, I hope he proves me wrong, but he will have to start fighting soon or it will be too late.

I think the only thing that would give him the will to live would be to know he could still do most of the things he used to, and I honestly think he knows this will not be possible.

Thankyou so much for your support, it really helps when you are talking to people who understand, and I wish you and your husband many happy years to come.
Gail xx

[Anonymous]

Hi Gail
How are you and how is Howard? when henry was in hospital and not eating they fed him through a tube in his nose – that really helped him. Is that not possible? He did the same with food – just lost interest, but slowly it came back. Take care love sarah xxx

[eveParticipant]

Hi Sarah

It is a different ball game when its your choice,if chemo is refused then palliative care is next step,then it comes to hospice which has a certain policy concerning care.
IT sounds if Howard has chosen his path.
It must be awful for Gail,I can look at both sides and see merit in both.Eve

[tmcParticipant]

Hi Gail
I am thinking about you and your girls and hoping that you are all coming to accept Howard's decisions about his life and the possible move into Hospice care.
My heart goes out to you all. It is a very hard MM road we travel.
Love Teresa.

[gailebParticipant]

Hi Everyone, I haven't been on for a long time, I don't know if you have seen my message today, Howard has now passed away, it's dreadful, he didn't want to fight this, he had been very poorly, and the doctor told me he hadn't got long.
None of this is sinking in at the moment, I am very alone, I don't know what to do anymore.
I spend most of my days weeping, I am so sad.
xx

[OutdoorsPaulParticipant]

Hello Gail
I am so sorry to hear of Howards passing,your not alone we are all here for you…If you need to talk just log on and tell us,someone will respond!
You look after yourself
xxxxPaul

[stewasParticipant]

Sorry to hear of your loss it is very upsetting for everyone concerned to watch someone you love going through treatment and all the pain they endure especially when they have always been so active.
My husband is going tomorrow to have his stem cells harvested he had a stem cell transplant in Nov. 2010 and relapsed in April this year. I am finding it very difficult this time watching him going through his treatment again.
Thinking about you and can't even imagine what your going through.

[gailebParticipant]

Hi Paul,
Sorry it's taken so long to reply, not getting on too well at the moment, I tried again to go away for a few days, but that's it now, I'm obviously not ready for that yet, it was a beautiful day on Saturday, I sat by the sea, well that was the worst thing I could do, Howard was the last person I sat by the sea with, so you can imagine what happened, so that was it I went back home. Life is so lonely now, no one close now to share things with.
Thankyou for your kind words.
Gail xx

[gailebParticipant]

Hope things went okay with your husbands treatment, it must be awful for you to watch him go through this again.
This illness is so cruel.
Life is very hard just now, I feel so lonely, I'm beginning to realize life is so different now, I've never been on my own since I was 17, but this is something I now have to face up to, it will be hard, but Howard would not want me to be so sad.
I can only keep telling myself he isn't suffering anymore.
Gail.

[Author]

Posts