My DH is dying

[cakeslover]

I think I just need to write it down and maybe there's someone out there who could help me on how to deal with my DC.
My DH was diagnosed with tongue cancer on february when we were on holidays in our native Italy. He decided on having his treatment here and postpone the return to the UK for as long as it was needed.
He then went trough a major op to remove part of his tongue and some lymph nodes. After that he went trough two more ops. After the third one, he has suffered a respiratory arrest with severe brain damage and went into a coma. It is been 4 months already, he's not conscious and now we've found out that his tumour is spreading fast.
We have 2 DC, DD1 (4 yo) and DD2 (18 month old).
My eldest hasn't seen her daddy for 4 months already, and knows his asleep, very ill and that the doctors were trying to find a very rare medicine to make him better. She misses her daddy, her home, school and friends.
I am trying to find some kind of psychological support for her, and trying to reassure her that mummy is still here and is going nowhere. But understandably she's very clingy and stressed.
In the meanwhile I have move all our stuff from London here and rented a new home for us. Thankfully I have my mum who moved here with us, who's more than helpful (we are in his birth city).
Is there anyone who could pls help me on how to deal with my DDs feelings, how to cope with life without the best husband and father?
We are still fairly young (early 30s) and life seems to have ended for me.

www.wayfoundation.org.uk/

I hope this is not intrusive and you find some support through this awful situation

3girlies I am really, really sorry about your daughter. No parent should have to go through loosing a child, I cannot imagine your pain.
I also think that when we experience some pain like this, we become more sensitive to others suffering, but at the same time, we understand that so many people go through horrible times, they survive and at some point find something that make living bearable and even enjoyable maybe..
I hope that I am making sense.. today has been hard

thank you for the link, not intrusive at all

Thinking of you and your family cakes it must be extra hard being away from your home base (UK) and routine for the children.

I am so sorry.

You sound very brave - and a wonderful mother and wife.

Cakes, wishing you and your dd's all the best and strength during this time. My heart aches for you. You sound like an amazing wife and mum.

so so sorry to read of this cakes

wishing you and your family much love and strength x

So sorry you and your family are going throuh this. Agree with others recommending winstons wish.

No advice here from me I'm afraid but just wanted to say how sorry I am to hear what you and your little ones are going through. Sending you hugs

I am so sorry you are going through this OP. if you are anywhere nr Milan give me a shout, I will be glad to help.

So sorry, cakeslover.

I have a thought about taking your dd to hospital to see her dad.

My brother died suddenly and unexpectedly some years ago. The funeral director asked if any of us would like to see him. I didn't, but dd desperately wanted to; she had witnessed my mum's death only a few weeks before (we had all been with mum when she died). DD is very mature, and haing been at the bedside with mum and gone and viewed her body, she was sure she would be fine.

So dd was taken to see him by her dad and my beother and some other good friends. She was 10, so a lot older than your dd. Moreover, we had had 6 other bereavements in the couple of years leading up to my brother's, so she was 'experienced' for want of a better word.

She regrets it utterly. He had not been made pretty, and it was actually rather frightening. 3 years on she remembers what he was like when he was her lovely uncle, but it took a long time for that horrid picture to fade in favour of the memories of the man she knew.

Another one, concerning me this time. My dad died of cancer over 20 years ago, at home. The last few months he deteriorated badly, and my brothers and I visited at least once a week, generally more. I was over 30, and it took a long time to get those memories out of my head and start remembering him as he had always been.

Have you asked your mum what she thinks? Sometimes it's kinder to leave memories intact and uninterrupted. Your dd is very young.

On the other hand, I can see why you think it might be the right thing to give her a chance to say goodbye. Please don't take offence at this, but the daddy she knows and loves has gone already. I'm so so sorry

080880800 - Macmillan cancer support
www.macmillan.org.uk/HowWeCanHelp/HowWeCanHelp.aspx

my mum used to work for them, just give them a call, they are excellent

When my son was critically ill (intensive care for 8 days at 5 months) the nurses encouraged bringing in my nearly 5 year old in to prepare her, should he die.

Apparently, if they just 'go' and children haven't seen how ill they are, it's as is they disappeared and more difficult to make sense of.

My thoughts are with you for this traumatic time.

How are you doing today cakes ?

I'm so sorry cakes. What a terrible thing you are going through.

I wanted to reiterate about the WAY Foundation. My cousin lost her husband to cancer ten years ago when her children were young - in fact they were the same age as yours are now. She found WAY very helpful. She also got some counselling help for the children - although it sounds too young to be helpful the children attended sessions for a couple of years and through art therapy etc I think it helped them express their confusion and sorrow.

There is also lots of support on here. I have no direct experience myself but wanted to send you support and wishes for strength at this horrible time.

Thank you all so much for your support and for sharing your experiences. It is very helpful.
Yesterday was very hard, I went to the hospital to talk to his doctors. We now know that his lungs are all infected. So we ended up discussing hospices. We have one nearer to where we live and may be looking into that one.
I also have an appointment with a neuropsychiatric that works with children for next week. I am going solo at the first one to discuss the situation and how to proceed from then.
My DM and closest friends are against me taking dd to see her daddy. They all say that there is the risk on doing more damage than good, but this is something they I will be looking into discussing with the psychiatric.
I went to the docs myself because I wanted something for my panic attacks, and I ended up also with an anti depressive. I've decided in giving if a try and see if I can keep relatively calm and enjoy the girls more

I'm sorry. How awful for you.

I recommend a book called ' Duck, Death and the Tulip ' - it is very good and avoids all cliches.

I wish you lots of strength

I lost my DH to cancer when my DSs were four and five. You've had some great advice already on organisations which can help (our Macmillan nurse was fantastic). Personally speaking, in terms of how to handle your children, be honest and don't be afraid to tell them what is happening. My DSs came on hospital visits with us while DH was having chemo. DS2 even came into theatre with us when I was being shown how to clean DH's Hickman line. As long as everything was explained in language they could understand, they took it all in their stride.

When the end came, DH died at home and I let them see his body. Some people were horrified by this but it showed them there was nothing to be afraid of and I think it would have been worse if I'd left things to their imagination. They came to the funeral, though they had the option to leave during the service if they wanted (DS1 stayed, DS2 left).

One of the hardest things for children is feeling out of control so try and involve them in anything you can. DS1 used to 'help' give Daddy his medicine. For the funeral, they each chose a flower to put on the coffin. They chose a favourite picture of Daddy to go by their beds and chose a frame to put it in. Small things, but it made them feel involved and slightly more in control.

Most importantly, don't forget to take care of yourself. You are so busy worrying about your DH and our children that's easy to forget about yourself. Don't feel guilty about giving in to a fit of crying. Be kind to yourself, whether that means taking time out for a long bath, eating a whole bag of donuts or whatever makes you feel good!

Finally, I know the future must seem very bleak and lonely for you but you will get through it and you will be happy again. Four years on, I still have dark moments but on the whole life is good and I am happy. I will never stop missing DH but everyone is entitled to be happy and I take what I can from life.

hospices are a lot less scary than they seem. I work in one and it is a much nicer place than any hospital. the doctors there say how lovely it is to be able to really spend time with their patients and do everything they can to make them comfortable. It is likely you will find a lot of support there for you too. Do look at Winstons wish. there is a lot of online material about how children best deal with these kind of situations. Best wishes

MummyDolt what an inspiring post!
I've got an appointment with the neuropsychiatric that will be following dd and will discuss that. After the first operation I took her to the hospital, and she helped her daddy mixing his medicine, applying cream and cuddling. She was very aware at first but took it on board and still remembers well how it was. But this time he is in a vegetative state, and it is pretty scary even for me. A part from the general debilitation, his eyes keep rolling, he's got a tracheotomy, moves his mouth a lot as to speak, and has a nappy ( sorry if tmi). It is completely different from the time before. He would hate to her to see him like that. But I will consider it..
It doesn't seem real, I still can't understand how our lovely lovely family is crumbling and there's nothing I can do to avoid it.
Yesterday we were discussing hospices and a place for the funeral.
Oh god I love him so much!!

Thank goodness your mother is with you as your babies are so young and you need her. As it is scary for you seeing your husband like that, I would not take your 4 year- as could give her nightmares. Even my dying husband's family did not want to see him in a vegatative state, and said they would rather remember him as he was, but he was 58 and DD 32, and cannot imagine how I would have coped with your 3 so young DCs. My thoughts were, it so often happens to the good people, doesn't it? Not fair. I cannot tell you how you can cope, just that you will . Do you see your in-laws? Lots of sympathy and hugs coming your way

Cakes mi dispiace tanto, If I can be of help and support I am in the Veneto.....

Cakes, what you describe could be pretty scary for a small child. You know your child best and know what they could tolerate. My DH looked and behaved pretty much as normal, though very weak and thin towards the end, so there was nothing scary for them to see. The only time I wouldn't let them see him was when he had an epileptic fit. I sent them out of the room, telling them that Daddy had fallen asleep and was having a nightmare.

My heart goes out to you, having to deal with this. PM me if ever you need a shoulder to cry on.

Cakes nothing to add but my best wishes + big hugs to you+ your darling.girls + a gentle sqeeze of the hand to your DH.

I used to nurse + have cared for many end of life patients. One thing we used to always tell the families waa to keep talking to them , it is the last sense to turn off + even though he may give no sign it may comfort him to hear your loving voice.

I am in Emilia Romagna but thank you!
Thank you for the advice Mummy and Bossy.
I am not able to hold back my tears every time I am in the hospital.. It is shitty of me, I wish I could be stronger and calmer in front of him but the overwhelming feeling is too much.
My dd have been soo angry. today she put on a big fight insisting on not going to school, crying her eyes out, a major trantrum. I tried my best to ignore (after talking to her and been ignored myself) so went to take dd2 to the nursery. When I came back she had calm down (with my mum) and is now watching tv, very quietly.
I am at the end of my tether with her, have no idea on how to deal when she's like this. I've tried talking sternly and gently about how important it is for children to go to school (it's a place to learn lovely things and have fun), tried to persuade her in any way, rewards, the lot. Nothing seems to work, I have no strength to fight her in the mornings anymore (she's been hard work since always, but got much worse in the past month).
She spent the weekend at my ILs so I don't know if she heard something or was just unsettled by the surroundings that remind us so much of DH.