Caring for husband

I was carer for my Wife Linda for a few years, and it wasn’t easy, seeing her suffer every day, loss of appetite, the sickness and nausea etc. she did make it easier for me, never complained, always grateful for just the smallest thing I did for her. We had help from the district nurses and MacMillan. The GP should be able to help by prioritising meds appointments for your husband, not all GPs are equal, but please ask what additional support he can offer. Please phone MacMillan, and explain your situation and find out what help and support you can get, physical and emotional, they are there to help 0808 808 00 00

If you can please update how you get on, but don’t worry if you can’t.

take care

Thank you Arthur, I shall definitely call the number and let you know how I get on. Really appreciated. 

Dear Leedee

You are describing my husband too.  I understand exacy where you are.   He has ptsd from cancer in 2010,  and his biggest fear has returned.    Its so difficult.    No therapy etc has helped, just like you describe.  Tears, anger, so difficult to manage.  You are not alone.   My gp has referred me for help,  because I became unwell after his last treatment ended last time,  and I dont want that again.  I feel so responsible for caring for him,  supporting him.   And I learnt from that bitter experience that I have that responsibility to myself too, otherwise I will go under again.   Please find help and support for yourself to manage the best you can under such difficult circumstances  and stay well yourself.  My best friend says .......its not selfishness its self preservation.....when I take time for a swim or friends!    Love and hugs dear one,  God bless x x   

Thank you so much for your reply, it means a lot, I feel quite emotional that our situations are so similar yet you have been suffering far longer. I do try to do things for myself, but hes always in the back of my mind - am I away too long from home?, or if he comes with me, I read his expressions and know exactly where he is at mentally/physically that I forsake what I want to do to please him. Always asking ,is he ok, sorting his tablets/milkshakes etc. My nurse friend says I am enabling him to rely on me and not be responsible and he should do his own, yet if I don’t wake him and give him tablets he would sleep and not get up, it’s like he just doesn’t care anymore, I feel he doesn’t want to be here. Who am I to say carry on, when he lives such a miserable life?, he says I don’t understand, yet he doesn’t fully understand what I put up with, it is all so difficult, neither asking for this, yet we have to live it the best we can. I just take a day at a time and ask him to as well, but he fears for the future.  I could go on for ages, it’s all a mess, each with our own emotions , there is no answer. Thankyou again, look after yourself too xx

My dear leedee

You are doing fabulously!   I felt such a connection too, knowing you really understand.  I have great friends and family, but they don't really understand. we've sadly lost contact with some close family who couldn't or didn't want to cope, to understand.   Guilt is a thief, and I struggled for ages.   I've been told 'it's not selfishness, it's self preservation' to have time for me.   I can see the difference in my attitude when I've had a little break, a long country walk or whatever,  so it pays off to both of you.   I'm fortunate that Geoff recognises I need it,  and encourages it.   Perhaps he needs a break from me too!   Like you,   I do too much,  but Geoff wants to be independent while he can.   Perhaps you might make up his milkshakes etc together.    But it's not doing too much to wake your husband for meds etc, that's common sense and necessary!   What might a conversation with him be like,  to talk about carrying on,  what hope or dreams he has,  some goals for him, for you, and together.

Of course we don't understand their situation and neither do they get ours, it doesn't really matter.   We are all in situations that we don't want to be in, but we are, and yes we must try.   I don't see it as putting up with it,  I choose to love as best I can, to stay, to do what I can for my husband,  and you're doing exactly the same.   Yes I get tired and cross,  yes I get it wrong, a lot.   But if our hearts are right,  what more can we do.   As long as I can stand before God each night,  look myself in the mirror and say I've done my best today,  that's all you need to do.   Some days your best won't seem much,  others it will. 

Living one day at a time completely resonates with me!  100%  have to.   I don't mind you going on,   this is what this space is for isn't it.  And you've helped me, so thank you.

Geoffs currently in hospital with pneumonia,  sepsis and dehydration.  Thank god, we arrived just in time,  and he's responding to treatment and a little better today.

Leedee,   look after you,  my best pal tells me to keep my jugs topped up!  When you're giving out a lot, you must take time to refill yourself.    I'll pray that you will be able to make little changes.

Sleep well,  tell yourself you're are doing OK x x     x x

Awww you sound like such a lovely lady, Geoff is lucky to have you by his side. I do wish him all the best with his treatment at present, has the cancer returned?, was that what you meant in your first email, ‘biggest fear returned’? Such a scary time for you both, what can I say that you don’t already know? Other than to say, I’m thinking of you too and hope you can rest well enough tonight to be there for Geoff tomorrow. I take some things from what you say and I will try not to be so hard on myself and tomorrow I will have that ‘goals’ chat with him when timing is right - been in such a negative space for so long now, it might just be what we need. Thank you again xx 

Hi Leedee 

Yes,  its come back as oesophagus cancer,  he can't eat anymore now, and they're trying again to fit a feed tube tomorrow.    He has PTSD from the previous treatment  so is living his nightmare.    Not so lovely person really,  I live by God's grace each day,   but yesterday it went out the window,  and I lost it on the phone.   And i didn't t visit him.   He's been trying to leave hospital when he's so ill,  so so angry regardless of what anyone does, so negative no matter what happens or who tries to help,  and I guess I reached my limit.    Macmillan will visit him tomorrow in hospital, and I must hope and pray this will bring about positive change.   We need to talk about going forward,  I wonder if he's strong enough mentally to face all this treatment,  with the reality that it may return, very risky surgery, etc etc.

I am so pleased to have met you,  its helped so much reading and rereading your post,  that I am not alone.   

Jan x 

Good morning Jan, (thanks for your real name) firstly, I’ve not had you off my mind this morning since I read your post and needed to write, just to say you are in my thoughts and I can hear you are on a really bad day, the tone of your post, so different from the other 2, it just goes to show how it affects us deeply too. I do hope that the next few days brings some change in Geoffs attitude to this, but I can understand his fears, frustrations, anger of what he’s got to go through, it’s all so frightening.. My husband is just 4 yrs past diagnosis and already saying he doesn’t want to be here and for sure wouldn’t go through further treatments. He has a barium meal coming up, but doesn’t even feel like doing that. The thought of visiting hospital brings on anxieties. Yesterday his PTSD advisor (after 19 sessions) doesn’t think it’s working and is now trying to find something else for him. Whatever I say, to prop him up, he comes back with a negative answer, sometimes I try to ‘detach’ myself from it to save myself, other days not so easy. My biggest question to myself is - what right do I have to say he should carry on, - when I don’t truly understand how his mind and body feels everyday. My son said it’s the worst thing to see his dad ill  for so long and going down hill, (he was ill before the AML) for most of my kids lives they have known their dad to be not well. Anyway, today this is not about me as I’m feeling stronger today and will be going to the garden centre to do a little something for me, while hubby sleeps. I just want you to know I’m thinking of you today, and hoping you can take at least one small thing out of the day that is positive, even if just a posh coffee and naughty piece of cake or sit in the hospital garden and listening to the birds and ‘breathe’. I’m glad to have met you too Jan on here. Leah (I would love to give you my personal email, if you would like it? Not sure if allowed?!) 

Hi Leah 

I totally understand you.   I'm touched you could tell it wasn't a great day,  we barely know each other   but you knew.   Its suddenly hitting me, what we are facing, and I've experienced uncontrollable emotions,   I've never had that before  and it was frightening.   I found myself up at 4am, walking round fields at 7 hysterical and sobbing.  I'm calmer now!      I am thrilled you took yourself to the garden centre,  good on you!!!!!!

Leah,   I have told Geoff that whatever choice he makes now I support.   It has to be his choice.   How can I demand anything like that.    Its seems our men have no peace  and without it, how can there be life.    I am arranging a meeting with macmillan to facilitate a discussion about this.   Geoffs behaviour this week in hospital,  makes me question if he can cope with what's coming physically and mentally, and I dont think he can.   He even told the nurses he was taking his oxygen, drip etc home.   Deep down is he saying something?.  So we must talk about dying.   We must,  it's going to happen to us all.     Dying is a fact,  in God's  control,    not ours.     But our response, our reaction and how we manage it IS in our control.  Just because we discuss it doesn't mean we sit back and die or don't try to live, but we face our fears, and try to find peace.      My children too don't remember life before illness.    As hard as it is I think we must set people free to make their choices, and support that as best we can.    I hope this isn't too blunt for you, too upsetting,   please be honest,  I value tour ulinput greatly, because we are on the same path, but may well see things differently. 

Today they fitted a feed tube at last, and are discussing fitting a chemo pump into his arm.      We are meant to go on a little holiday in Lincolnshire this Friday,  all the Dr's kept telling us to go before everything started,  and I hope we might get there even if it's for a day or two.

I wonder how we can safely exchange emails    or perhaps we can find each other on fb, and then exchange emails via messenger.   I'd be very happy to do.

Best wishes    Jan