Husband has changed -difficult to cope with

Hi @gentlewaves,

Sorry to read about your husband and the impact it is having on you. In my time on here I have seen quite a few fairly similar stories. It is a shame you were not there for this last call, would it be possible to arrange to speak to one of the team to help clarify the message. There is of course a big difference between "days" and "weeks" though we often see a prognosis create more problems than anything else.

It is very easy to feel isolated when a loved one has cancer, despite knowing that 1 in 2 people will have cancer often it is perhaps the least talked about issue ever, looking at Talking about cancer we can see the benefits and the number of my friends who opened up to me about their experiences. Often though people can get worried about saying the wrong thing and end up avoiding talking at all.

Just for a minute let us assume he does only have days - perhaps if you printed out this you might be able to show the steps you need to take as a couple so that the person he loves will be looked after when he has gone.

<<hugs>>

Steve

Hi Gentlewaves,

My husband has a terminal brain tumour, which was diagnosed last July. The prognosis was 1 year to 15 months. 

It was devastating and hard to digest, but we tried to be positive at the time. However, as time goes on, he does sometimes become distant and says he cant do anything and feels useless. I tell him he isn't, but it doesn't help him. Sometimes I think the person who is ill, mentally pushes those nearest to them away, because they really don't want to deal with 'normal' relationships anymore. I'm not sure if its a sort of coping mechanism or not.

We know at the minute we are living on borrowed time, but because he is bedbound ( he lost mobility in his right leg and arm) we aren't able to go anywhere, as he feels unsafe. 

Try not to take his irritation and moods too personally (difficult I know), but given the prognosis of days/weeks must be devastating. Maybe get in touch with the palliative team yourself, it might help.

Not sure if this is any help, but I do occasionally have to go into another room if it all gets too much and take a deep breath or have a quick cry.

Best wishes and stay strong,

Llamalover xx

Hi Llamalover, Thanks so much for your reply. I do go outside in the garden or take the dog around the block . I have phoned friends and cried and the palliative nurse visited today so we had a good chat all together.  I hope you have good support too, it is so devastating seeing someone deteriorating.

Thanks for your support and understanding .

Love

gentlewaves 

Hi,

That's fine, we all need to give each other in this situation some support. Until now, I never realised how hard it is to look after someone who is disappearing before your eyes, from the person they were until only a few months ago.

My husband slipped out of his hospital bed this morning trying to manoeuvre himself back into bed, whilst I was just a few feet away in the kitchen. Ended up on the carpet and had to get paramedics to get him back into bed. He was shaken up but otherwise unhurt. Now waiting for the community nurse to come and dress his arm (he has very thin skin and it ripped in places on the carpet). These things which seem so minor to other people are massive to him and he gets really upset. All part of it, I suppose, but hard to deal with.

We have good support from everyone, which is something.

Take good care of yourself,

Love

Llamalover xx

Hi llamalover, 

Sorry to hear about your husbands fall, I hope the tears in his skin isn’t too painful and it heals soon. 
it is very difficult, I was a nurse for 38 years and cared for patients with cancer at times over the years and now realise I never truly knew/acknowledged the affect on the person and family. It is not until you are in a situation yourself. 
I still can’t really believe what is happening we had so many dreams plans etc like everyone. We had gone on holidays saying we would go back another day, perhaps not always appreciating everything as always thought there will be another time. For years I put my children first (which was right) but then didn’t always spend enough time alone together.I am frightened of being lonely in the future. 

take care

gentlewaves

Hi Gentlewaves,

Thanks for your reply. Fortunately my husband has recovered from his fall although he was in a terrible mood for the rest of the day. I can understand why, he says he feels so helpless and useless. I tell him he isn't, but its no help.

I know exactly how you feel, because I especially always put our two daughters first (even now they are grown up and have a child each of their own). I said to my husband early on in his illness that we should have done all those things we said we would on our own but never have and its now too late. We cant dwell on that though, as there is no going back. I too dread the future without him, we've always discussed plans between us and decided what to do about various things, such as moving house or a holiday. Guess I will just have to get on with life without him when the time comes. I know friends in similar situations and they have so I will have to. 

Make the most of each day is all I can say to anyone in this situation, even though it might not be a good one.

Love

Llamalover xx

Hi, can understand how miserable and sad you are feeling, my husband is very ill too having been newly diagnosed with incurable cancer last year.

Suddenly you just feel as though you’re totally on your own as they become this different person!

we need to sort everything out too but it’s so difficult to go there.. making wills/ etc and actually finding out what the financial situation is because when this all ends we will not only have to deal with the sadness, misery of dealing with it but also trying to carry on our lives in the not so happy future!

thinking of you! X

Hi Roberta8,

Thank you and yes that is exactly how it feels. We had sorted wills out a few years ago when we moved house, so they are in order but it is the financial things that also worry me. I will be ok living where I am if I choose to stay, but he was always the one to sort out the household bills, as he liked to know exactly what was what. We did some changes to bill payers names/emails etc but I am still daunted by it all. I am also no DIYer which he was until last year, so will have to learn how to do various tasks. Maybe I will surprise myself.

I cannot imagine not being able to chat to him on a daily basis. I do have family and friends living close by but it wont be the same will it? I hate the word lonely, but think that is what I will be. I am scared of how it will happen too, just cant imagine having to deal with the end of his life, my grief and also our daughters. Our granddaughter, who thinks the world of him, is 4 and it breaks my heart thinking of how she will cope. I'm told children are resilient so hope she will be.

Take care,

Llamalover xx

Hi again,

so good to hear from you, I always feel I shouldn’t burden other people/friends with my negative sad thoughts. Our only married daughter has been living in OZ for last 11 yrs and the last thing I want her to feel is guilty.

 Yes, it will be lonely not being able to talk to husband, I suppose we will eventually get used to it, can see myself having radio on most of the time and talking out loud to him and myself!

thanks for getting back, you’ve no idea how less desperate I feel tonight!

thank you x

Hi Roberta8,

That's fine, we need to pour our hearts out now and again. I have a very good emotional support lady, through the local hospice. She just asks all the right questions about my welfare and doesn't mind if I am in floods of tears over the phone. Not sure what services you can contact, but I accessed the service through the local community nursing team and the Macmillan nurse, (who is just brilliant). 

I think the same as you, will still talk to him and so on. Fortunately my daughters both live locally and have been brilliant, but like you no matter how far or close they are, don't want to burden them with my feelings all of the time.

If I feel a bit angry at any time, I tend to shout at inanimate objects such as the vacuum cleaner if it wont go where I want it to! Slightly bonkers, but it really helps!!

Keep strong and look after yourself, you cant pour milk from an empty jug as someone said to me recently!

Love

Llamalover xx