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.

[Xenia]

How sad. So awful so unfair,. How good of your mother to come out to Italy to be with you all. You are doing very well. It is a terrible situation.

Is your 4 year old so unhappy about going to school because she was used to England and English and suddenly she is in an Italian school.

Should she see her father even if only for 2 or 3 minutes so she can visualise where he is and how sick he is?

Sorry to ask but had he made a will and have you looked at financial things in Italy and UK once the worst has happened?

[riskit4abiskit]

Oh I am sobbing over this thread, its so very sad. You sound like you are coping so very well with the circumstances. Best wishes to all your family.

[ImperialBlether]

What a desperately sad situation.

Please excuse me if you've already done this, but has your daughter made anything that you could take to her father, such as a painting? I know she's too young to write but could you buy a card and let her write kisses on it? Could she choose a photo of you all which you could take to the hospital to put by his bedside? Choose some flowers for him?

It sounds as though you've had a really awful time; I'm so glad your mum is there for you.

[verytellytubby]

I'm so sorry. What a heartbreaking situation. You've been given good advice and I just wanted to send you a hug.

[IHopeYouStepOnALegoPiece]

I am so sorry you are going through this....it's horrendous and I cannot even imagine how you are feeling...your words strike me as so very brave

I'm thinking of you all xxxx

[TheAccidentalExhibitionist]

I've been hovering..

I just wanted to pass on a big hug over the Internet.
Am I right in thinking you are still in Italy? How are you and your DC coping with the language and the health system?

You sound so brave cakeslover.

[t875]

I am so sorry to read what you are going through cakes lover, thinking of you all x

[cakeslover]

Thank you so much for all the messages. Thank you!
Rosa the psicologist that I've been seen at the hospital told me exactly the same, and that I should allowed myself to relax sometimes (joking, dressing well, going out with friends) so Dd will feel is ok for her to not be sad and enjoy her little world. That she might be using me as a mirror now.
I've been as well to a children's psycologist and for now she will try working on my daughter trough me. So it was our first session and I had to answer and explain the whole situation of course. She has advised me not prepare her for the worst but at the same time not giving her hope. Need to stay juggling the situation exactly how I've been doing so far, giving plenty of attention, do not bend the rules and answer her questions in the most honest way possible (age wise).
Dd is getting used on not having daddy home anymore, she talks about him but is not counting on him IYKWIM.
Some days I feel stronger and cant wait to start a new life but sometimes it really drags me down and I miss him so much. It's very hard to see the girls growing up and developing and not be able to share it with him.
Onlyjoking thank you for the advise. I hope you and your boys are well

[Rosa]

Cakes how are things with DD? Can Imagine how you are x

[ChippingInLovesAutumn]

Don't feel bad for crying when you are there, I'm sure your DH would understand x I'm sitting here crying for you - it's so, so unfair :(


I can't offer any advice or suggestions that haven't aready been given, I just wanted to send you love & strength & let you know our thoughts are with you. Afterwards, you will learn to dance in the rain - life wont ever be the same again and it wont be what you planned, but you will learn to live alongside that and it will be OK, hopefully better than 'ok'.

[onlyjoking9329]

So sorry you are in this situation
You will get Throu this, it won't feel like its even possible right now.
Talking to children about death and dying is something we feel unprepared for.
Be honest in answering any questions don't give to much information in one go, Macmillian suggested to us that children only ask questions when they want to know stuff and it shouldn't be rushed.
There are lots of books for after someone dies but little about the preparation.
Our children were 14 14 and 11 when their dad died four years ago they have autism which makes things difficult for them to understand. The stuff I used for them might be useful to your eldest child, muddles puddles and sunshine is a really good workbook for young children.
If I can help in any way I'm just a keyboard away.

[ssd]

I'm so sorry, cakes, I really am x

[ILikeToMoveItMoveIt]

We all have to cry cakes, maybe it happens at your dh's bedside because it is the only place you have time to cry? I imagine you are rushing around everywhere making sure everyone is sorted, then the moment you sit down - bam.

If you would like to take your dc into ICU are there things that can be done to make it less scary? Put a blanket over your dh so the nappy isn't visible? Would more sedation for the period when your dc are there stop the eye rolling? If it is something you would like to pursue speak to his nurse.

Sounds like your dd is finding it tough too. It can be hard enough to cope with your own emotions, never mind others too, I take my hat off to you.

[Rosa]

Its only a train ride away if needed xx

I would try to insist with your DD and take her as the routine or normal life will be important for her and I believe help her , Of course she can sense your stress and worry and so she plays on it. Mine does the same but in a much smaller way obviously , If I am stressed then she can feel it . My eldest doesn't really but No2 can. Try saying right tomorrow Grandma will take DD2 to nursery and you and I will go to school together , maybe we will stop on teh way ( if possible) for a croissant or something similar. Just time the two of you together.
Your small one will adjust much better as she is still learning life and my guess is she will accept it but DD1 will be watching and observing all you do and it sounds as if she is playing on it as well.
SO glad you have your mum to help....
If you feel like it over on Little Italy ( Other subjects) we are a nice bunch should you ever pop in you will be most welcome.....

[duchesse]

No advice but just wanted to say I am thinking of you at this difficult time.

[cakeslover]

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.

[Bossybritches22]

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.

[MummyDoIt]

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.

[Rosa]

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

[digerd]

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

[cakeslover]

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!!

[ohmeohmy]

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

[MummyDoIt]

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.

[shineonucrazydiamond]

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

[cakeslover]

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