Emotionally exhausted and feeling no help

Hi

Far from being useless you are being a hero in an impossible situation. Your husband wants to eat that is great and just needs to get enough calories in even if they taste like saline or lard.

You both know you are doing the right thing - keep up the good work and together you will get though this.

<<hugs>>

Steve

His calorie intake is dropping as he is turning away from most foods because of the taste. Today has been particularly tough and he is getting fed up, frustrated and very irritable. I keep trying to encourage him to top up fluids and fortis drinks with the PEG but he just point blank refuses.

The treatments also feel like a daily battle... He suffers from anxiety anyway so as you can imagine that went off the scale... Several meds changes later e just about coax him to attend... But he will only go if I go with him. I have had lots of offers of help with lifts etc but can't utalise them or he won't go.

Just wish I could make it easier... While at the same time feeling guilty that I feel trapped and tired to doing everything... Even down to having to work from home.

I know I will help him to get through this but can't help feeling like I'm alone even though I know I'm not.

 I feel for you and can appreciate how you feel.  Sometimes it doesn’t matter how much support you have around, it’s still hard going and can feel lonely at times.  

My husband has stomach cancer and had eating problems from the start which got worse with chemo and the strange tastes it created. It’s stressful and  soul destroying when you are counting calories and know they need more to be well. We found that just having one flavour or texture at a time helped plus serving very small portions so the food didn’t feel overwhelming.   I know those days of making several different meals and none of them working (we both get disheartened). The best advice we got was to go with whatever works, some days during his chemo he just had puddings or sweet things as they were better tolerated. 

Try not to be so hard on yourself, this is not easy,  do what feels right for you both and share what’s happening with his treatment team x

I feel for you as I am going through the same with my dear husband. He was diagnosed with terminal cancer 3 weeks ago and basically sent home to die as he has mets in his liver, lungs and lymph nodes. I want to care for him until the end but he won't eat anything even small amounts he is pushing away now. he is so confused due to the medication he is on. I can't sleep much as half the night he sits teetering on the side of the bed and I'm scared he will fall off. The District nurses don't seem to think he is as bad as he is. I think they get a bit blase as they are dealing with cancer patients all the time. I'm getting so frustrated and feel so unsupported.

I've tried all sorts of things and used a small tea plate but to no avail. He point blank refuses to put any supplements down his PEG... If he does this he will finally have to admit and face the reality of his diagnosis... Something he is still not willing to do.

He has a review tomorrow.... That is if he will even go to treatment as earlier he was saying he's not doing any more... Tough just got a whole lot tougher.

Thanks for your support.x

The team he has have been great but he has been hiding most of this until he got really irritated and boardering on verbally aggressive with the dietitian... Psychology called today for review tomorrow but not sure he is going to go.

Currently he should have a good chance of a cure but if he continues as he has for the past 48hrs that may not be the case.

I'm sorry about your husband... If the district nurses do not seem too supportive what about the Macmillan nurses....they are fantastic... Hope they can help more xxx

so sorry to hear that YOUare having such a rough time. I know it’s your husband that is ill but I know how hard it is shouldering all the caring, the hospital trips, the housework, etc etc etc. My hubby is terminally ill (we were just told yesterday that his treatment is not working and to go and enjoy our time) It’s hard sometimes not to feel angry or exhausted. I have loads of friends and family that offer help but I find it hard to accept the help as I want to be the one to care for him. It’s what I signed up for when I said my vows. However I’m coming to realise now that I can’t do it all. I’ve recently been diagnosed as prediabetic which I know has been caused by comfort eating and no longer have either the time or the inclination to get out and exercise - I was a very active person before but I just don’t have the energy now when I have done everything else.  
Keep battling and hopefully soon you will win. Sending positive thoughts and a big hug to you x

Sorry to hear your husbands treatment has not worked... I hope you get some time to just create happier memories.  I totally understand and can relate to the no time to eat or energy to do anything but sound like a good time to just concentrate on the both of you now.

What a 24hrs it's been... Loads of tears frustrations and  battles but like you it's what I signed up to too and on a slight positive a breakthrough in that he has allowed me to put some feed and war down the PEG  it will continue and hopefully make him feel a little better. He still can not accept it but I'll settle for him tolerating me helping.

Sending hugs and best wishes to you both too xx

Hi.
So glad you’ve made some progress with the PEG. It might only be a small step but it’s a start. Maybe once he realises it makes him feel better he will start to be more accepting of it. Good luck x x 

I remember the turmoil when my husband was first diagnosed in January, it felt like our whole world had just been turned upside and shaken, trying to come to terms and face whats happening and at the same time navigate all of the services is exhausting and knowing who to talk to.  Have you had a referral to the Palliative team?  I know it seems scary and none of us want to think about the end but of all the people/teams we have dealt with, our palliative nurse was the one that has made the most positive impact.  They got his pain meds stable, provided calm and down to earth advice and have pushed and sorted other services when we were getting no where and about to give up.  

Hang in there, you will have better days, try and look after you (i know that's easier said than done) but eat and rest when you can and you'll be better able to get through the harder days. 

Sending you strong wishes and a hug xx