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mum dying, husband emotionally cold

(59 Posts)
Craptime Fri 11-Oct-13 12:57:11

Hi namechanger...not sure if I should post here or bereavement or what...but anyway..
A bit of back ground...My mum is 64 and was diagnosed on august 22nd 2013 (so about 7 weeks ago) with metastatic breast cancer that is not curable and to our knowledge is in at least her femur and lungs.

We found out in a pretty traumatic way...she had been bed bound for a few week with what we thought was a combination of the arthritis/scoliosis of the spine and diverticulitis which she has suffered with for years. She's very anti doctors and health care agencies and so tries as best she can to manage pain etc on her on.

We had all been worried about her and my dad (who still wrks full time) was caring for her and fulfilling her wishes not to have the doctor called. He then fell off a ladder gardening and sustained a head injury and several brokne bones in his right arm so I told him if he didnt approach the GPs then I would as he was struggling caring for her. She will not let either me or my sister do anything to help either and my dad is like the gate keeper for her and keeps us away etc. But this time he agreed and told the doctor...she came out and expressed her concern for my mum and tried to organise some rheumatology appointments...still thinking it was arhtritis etc...

then at 3am about a week later my mums leg fell out of bed and she couldnt lift it back in her self...she asked my dad to do it...it broke in his hands at the femur...ambulance came phonecall from dad at 6 in the morning to come to hospital where they discovered a tumour in her leg caused it to break and a large weeping ulcerated tumour on her breast she had hidden from everyone. after an op to the femur we were told it was incurable, too late and that if she was to have heart failure in the op they would not resuscitate her! All of us in total shock etc etc. finally persuaded her to have an mri which revealed tumour in her lungs but she refused brain scan and dischrged herself from hospital after 3 weeks because shed had enough... she basically refused to eat til they let her go and she was returned home by ambulance. about a week and a half ago she was again returned to hospital with heart problems and put on coronary care. She tells all the nurses and doctors what ever they want to hear in order to go home. So she is home again now...Which is fine but the strain my dad is under working full time and her refusing carers or macmillan nurses is immense...he however worships her and will not go against her wishes despite knowing if he ends up ill she will have to go to hospital anyway!

So its a really stressfull situation. I have two children - one preschool age and one just started high school. My elder child is really struggling with the transition to high school (we think he may have aspergers) and I am currently studying a very taxing podiatry degree.

Some days I feel I cant cope and am going to crack under the strain of emotionally supporting my dad (who tells me a lot of his feelings including suicidal ones) and uni work and my son and my own complicated feelings about my mum....and my husband is almost totally emotionless about it all. He doesnt treat me with any extra care, doesnt ask how I am, doeant hug me unless I request it and cant understand why I need affection. Its highly likely he has aspergers too but right now I just need someone to be there at the end of the day for me and he isnt. He carries out practical help and tasks...i.e. looks after the children while I study or help my dad out with shopping and cleaning or just listen to him talk about his grief...but my husband doesnt do the same for me (listen to my feeling or look after me) He's very matter of fact and pretty much wants life to carry on as normal, in that he has booked several bike races for sundays (he races for an amateur road bike team) and he cant see the strain this puts on me as I need more time to complete everything and I need less stress around the children. He thinks I'm unreasonable to want him to cut down the races.

So I just wondered if anyones gone through similar...how do you cope when your only support cant or wont support you? My mum has around 3 months to live by the way so things are clearly going to get worse and pretty soon.

T.I.A.

Craptime Fri 11-Oct-13 17:18:00

attila yes his dad very much pleases himself but does certain tasks he sees as his duty...its quite an odd little contradiction when I think about it but there you go! His mum just ploughs her own little furrow.

georgedawes thanks I feel quite a lot better having posted this here and not got the usual "thats men <eye roll>" response I get IRL.

georgedawes Fri 11-Oct-13 18:48:01

Well I detest that "men are crap" infantilising bollocks. If they're so shit why do they hold most positions of power? Not helpful for me to rant at you, sorry, but it drives me batshit and is actually offensive to the many, many decent men out there.

Honestly, if you can't be there for your wife when her mum is dying, when can you? Sorry to be so blunt, but he sounds horrible and you sound so sad and vulnerable. I hope in time you are able to work things out in the best way to make yourself happy, and that you spend as much time with your parents in the coming weeks as you can.

Craptime Fri 11-Oct-13 19:16:23

georgedawes no carry on!! I agree fully and find it quite dismissive of my feelings as well as insulting to non man children!

I have been at my lowest ebb recently and I can't tell you how glad I am that I posted this here. It's made me feel ten times stronger, and like I'm not unreasonable/weak/selfish.

Thank you everyone that posted. I owe you one!

georgedawes Fri 11-Oct-13 19:28:17

you don't owe any of the posters anything, we're just strangers - you'd do the same wouldn't you? It's your husband who is behaving badly - I wouldn't treat a stranger like that, and I'm sure you wouldn't either.

Charbon Fri 11-Oct-13 19:48:41

My sincere sympathy (and empathy) for coping with your parents' illnesses and injuries. It really is vital that you have an outlet for your stresses and complex feelings during this sad, physically and emotionally demanding time.

While acknowledging what you say about your suspicions of Aspergers, I was drawn to the post where you said he would like to split up and has said that life is too short. Is it possible he is having an affair? Because I have to say that some of the behaviour you describe is completely synomymous with that displayed during a secret association with someone else.

Craptime Fri 11-Oct-13 20:14:52

georgedawes you're right I'm just so glad of support I feel pathetically grateful.

charbon I've wondered myself.

Doughnut123 Fri 11-Oct-13 21:02:58

Oh Craptime, I feel for you SO much! What a hideous situation. Your poor mum and dad and poor you. Let me give you a big hug and a cup of tea/coffee or something stronger.
I really empathise regarding your mum, as mine died this time last year. My dad died the year before and my two sisters were behaving in a not dissimilar way to your husband, I stayed in the hospital room with my mum for about a week and a half, until she died, not wanting her to be alone. My sisters could not understand this and refused to stay too, so I felt very alone.
However, my husband was very supportive and I could not have coped without him.

You are under immense stress. Please don't feel guilty about Mumsnetting, it's the support you need and are lacking so much at home.

I used to be a nurse, so I have a little background knowledge.

Firstly, it's really important that you take care of yourself. You have 2 small children and a difficult husband AND you're doing a degree!!

This would be enough to send a lot of people over the edge, without the enormous trauma of what you're going through with your mum.
Can you request a break from your degree for a while, to lessen the burden on you? I'm sure that the university would be understanding.

Try to accept whatever your friends offer in the way of child care, shopping etc. Every little bit helps.

With your dad, I would try speaking to the GP and ask if he can be referred to a social worker. There are specific social workers who support carers in some areas. I would most definitely speak to Macmillan, for yourself as well as your mum. They are brilliant.

My mother was quite similar to your mum, in that she would refuse to go to hospital and my poor dad would have to deal with her. I'd be on the phone ( they lived 150 miles away), trying to persuade her to go and sometimes having to get an ambulance out to her - which, long distance, is not easy and my 3 children were all under 10. It's a bloody nightmare.

I think if you spoke to Macmillan about your mum, they would find a way to get her to engage with them . They are very experienced with this kind of situation and very skilled. Maybe they could just try calling her first, just for a few times, to build up her confidence in them and if that works, then they could try a visit.

Your mum. Is terrified, understandably. She has no control over what is happening to her. She needs to be able to still make her own decisions for as long as she is able.

It takes a long time for someone who has always been independent and the carer for everyone else, to accept that they need to be cared for.

All I can say is that my mum was so resistant to having a carer at home, but when we eventually sorted carers out for her ( it was a carer or having to go to a residential home), she really took to them.

And I think that's the key. Macmillan nurses are lovely, caring people and they have good people skills, so I'm sure your mum would accept one if she got on with her.

Sorry this is so long. I hope it's helpful. You and your dad need a break too, so I would see if there is someone who could be with your mum for a while, so he has some time for himself. He sounds amazing.

And could a friend take your children for a while, to give you a break?

As for your husband, it sounds really traumatic, but it seems that he cannot help it, as hard as that is to live with. Could you talk to your GP about him?

Also, are you getting much support for your son?

I totally get the cycling obsession. My husband is a cycling geek too, but more understanding. We are separating, but he was totally there for me when my parents died.

Take care of yourself. Have you got a cat or a dog? My dog is my best friend and gives me enormous comfort and cuddles when I need them.
And he's a great listener!

Y

Craptime Fri 11-Oct-13 21:22:46

Hi Doughnut

My mum is an ex social worker/pribation officer and really doesn't want them involved... She's extremely wary of any "interference" as she sees it.

I am scared to take time out if my degree as I'd lose my very valued friendships I'd built up and have to start again a year down the line...having said that, I'm realistic enough to understand I might not have any choice about that when it comes down to it.

I think what's hard it grieving the loss of my relationship at the same time as grieving my mum (though she's not gone yet!). The whole situation is just too much.

It does help to hear similar stories an awful lot. It feels very lonely all this. And like someone said lot of people don't "get" it. I admit I don't think I fully "got" it when I used to say oh I'm sorry to people who were going through bereavement. I don't think your mind can comprehend the enormity and the finality of death until its looming up on you sad

haverer Fri 11-Oct-13 23:43:13

craptime you are most definitely not unreasonable/weak/selfish. Your OP made me cry earlier today. You are dealing with so much that a stranger reading a paragraph about your life could feel your pain. If your husband was normal he wouldn't be making you feeli like this. Try to use this time well. Spend as much time as you can with your DM. Be frank and selfish with your husband about what you want and need.

Craptime Sat 12-Oct-13 10:33:27

haverer

I have started this morning by asking H to get a start on some washing while I try and get some uni work done he was a bit shirty with me at first about that and some other issues to do with bank accounts...and I bluntly told him that I dont appreciate his attitude in the circumstances and since he has decided "life is too short" so have I!

So we will see as the day develops how that has gone down as he tends to slow burn with his reactions to things.

I think it's too late to try and sort the affection/emotional support issues out now as he just wants to leave so I will have to just do without.

leavingthebastard Sat 12-Oct-13 18:04:54

So sorry to hear things are no better today. It seems like you are resigning yourself to giving him the elbow. I think it is probably good for you to distance yourself from his fuckwittery at this time. Instead of looking to him to help you just act like you are on your own. You will find things easier as you won't be constantly let down by him disappointing you.

I gave my DP both barrels last night and told him I thought we were over. Today I find out that he went to see an ex recently. Probably shagged her. He is a massive, massive pig. And every day brings some new mind-boggling example of dickheadishness.

Please just think about you, your mum and your dad. Fuck your DH. This time - right now - is human experience at its rawest. Watching a loved one die is the worst thing you will ever have to go through and it is important that you are allowed to be the person that you truly are. Remember that you are grieving even now. Ever since you knew this cancer was terminal you will have been grieving for the loss of your dear mum. You deserve all the love and support you can find.

You need to be there for your parents and take care of yourself. You must come out the other side knowing that you did all you could and that you were kind to them both. You do not want to regret one moment you spent kowtowing to your fucked up robot DH. There are times I look back on where I didn't spend all the moments I could with my mum because my DP made me feel like it was trivial. He made me feel embarrassed about my own love for her. And now she is dead he calls my grief "extreme" and questions why I should even be upset. What a massive fuckwit.

One final thing - have you talked about end of life care? My mum, to be blunt, was euthanised in the hospital with morphine. If your mum is resistant to all medical care then her last hours may not be comfortable. It is terrible to think about but it really is important that you seek help and advice on this. Our family was too in shock and we felt like we were constantly on the backfoot. We were not prepared for any of it. It left us reeling afterwards.

Big hugs again craptime and love to your mum x

Craptime Sat 12-Oct-13 20:39:38

leaving

I hope your other half gets nob rot. What a pig!

You are right. I need to try and cut him out of the equation in terms of expecting anything and just focus on my kids, my parents and myself.

I'm going round to my parents tomorrow to help my dad do a big clean. He's been doing really well with housework but he's got a job on dealing with the spilled bed pans due to mum having developed a tremor sad so I'm going to take myself and the kids there tomorrow and help him get sorted while H is out at another bike race.

Regarding end of life stuff. I am hoping she gets access to decent pain relief in time. She has accepted the medications she was prescribed in hospital and injects herself with fragmin even to prevent the need for a nurse visiting hmm but as her needs change I'm sure medications that would help will also alter (if that makes sense!)

I saw her last night and gave her a massive hug. She's not a very huggy person but I thought screw it! You're having a hug!

Craptime Sat 12-Oct-13 20:50:07

P.s she has started saying she can't swallow properly...does anyone reading know what this might signify?

GiveItYourBestShot Sat 12-Oct-13 21:02:06

Dear craptime, I feel so sad for you reading your posts. You might want to look into hospices rather than hospitals, some people find they provide much more gentle end of life care centred on what the patient wants rather than on hospital routines. I'm sorry your husband can't find it in himself to support you while you go through this awful time. You will get through it and you will have your children still to love and care for and tell stories about their brave and stubborn granny thanks

outandaboutatlast Sat 12-Oct-13 21:47:59

I went through something similar with my DM last year and my now XDP was useless. He acted as though what I was going through was nothing. The support I got from him was about as much as I got from a neighbour across the road who I hardly knew.

However I had a friend who would keep in touch with me daily, usually a text or a phone call; occasionally we'd meet up and a couple of times towards the end she came to see my Mum at home. But just knowing she cared mattered enormously.

Knowing that there was an end in sight (although this meant I'd no longer have my wonderful DM any more) made it possible for me to cope. But its horrible and I really feel for you

LUKYMUM Sat 12-Oct-13 21:58:20

I have nothing to say apart from I'm really really sorry for what you're going through.

LadyLapsang Sat 12-Oct-13 22:37:33

OP sorry to hear how difficult it is for you at the moment. I'm another voice to say how helpful the Macmillan nurses can be. My lovely late FIL was not actually diagnosed with cancer before he died although the Macmillan nurses were still able to offer support (some much needed night shifts) so he could stay at home until v near the end. I would try not to think about the lack of support from your DH - maybe he just can't do it. Hope you have time to spend with your DM, she has a good death and you look after yourself.

Craptime Sun 13-Oct-13 08:44:23

Thanks everyone. I really appreciate the comments and advice x

leavingthebastard Sun 13-Oct-13 12:30:34

Morning Craptime. I just wanted to reiterate what has been said about hospice care. In the final days your mum will inevitably suffer without the right care. My mum was on an intensive care ward surrounded by noise, nurses laughing and joking, other patients moaning. Sporadic attention and treatment. It felt like bedlam. I couldn't bear it. It is one of my biggest regrets that she did not die at home, or in a hospice. What may happen in the last few days is that things run away from you - she may struggle breathing, or eating, or keep being sick, and she will have to be taken to hospital - whether you or her want it or not. The system will kick in and sweep your desires aside. The experience has also made me despise the NHS. Do not get caught up in it.

Please make sure you prepare. Contact a hospice and Macmillan nurses now. I promise you you will regret it if you don't. No matter what your mum thinks her wishes are, by not taking any action she will inevitably end up in the worst possible place.

Btw I found out last night that my dickhead DP cheated on me 2 weeks ago. I spent an hour tearing strips off him before consigning him to the spare bedroom. Today we have been discussing all our issues and he told me he thought I had been "indulging" in my grief. What a massive tit.

Craptime Sun 13-Oct-13 12:55:52

leaving oh god what a time you're having! He's a disgusting idiot! How could he say that!

I will talk to my Dad about hospice care as he is the kind of "gate keeper"and explain...one of the things that made her discharge herself from hospital was all the noise and chaos so it might make her stop and think for a moment.

Is your not so "D" P going to stay or leave or what? I hope you're ok x

thanks to those grieving or dealing with dying loved ones sad My beloved Mum died of cancer 2 years ago and I found Macmillan nurses great sources of information and comfort. Macmillan also have an online community which is useful too.
community.macmillan.org.uk/groups/default.aspx

leavingthebastard Sun 13-Oct-13 15:33:40

I'm glad you're going to talk to your dad. You should tell him that you have been taking advice from others who have been through the same situation. And that you're worried that if you don't take action your mum will end up in the place she most fears - a busy ward.

From what I have heard of hospices they can be very nice places, with private rooms etc, and of course the specialist care of nurses who have expertise in end of life treatment. The whole purpose of a hospice is to ease suffering, and let people die in a loving, calm, reflective place.

Further, with the help of Macmillan nurses your mum could end her days at home, in comfort and familiar surroundings.

If you do nothing then at some point her symptoms will become too much for you or your dad to deal with. Unless you're then prepared to put a pillow over her head you will find it will be impossible to stop yourself calling for an ambulance in the face of her suffering. Before you know it she is in the one place she dreaded - an intensive care ward.

Our family always feared talking about the end as we couldn't believe it was happening to us. We did not want to discuss it with mum, nor she with us. Then events just overtook us. I will NOT let the same happen to my dad. I just wish that I did not have to learn this lesson the hard way and that someone had told me beforehand.

After talking to your dad you should call Macmillan for advice, and then tell your mum your findings. Emphasise that everything you want to do is to help her avoid having to go into a hospital. Macmillan could even come to talk to her and allay any fears she may have about what their care involves.

Good luck, thinking of you lots thanks

cjel Sun 13-Oct-13 16:12:46

Craptime, So sorry to hear all this and although I haven't been through similar with my mum I have with my H and know the loneliness of college, looking after dcs and nothing. My H never asked me once in three years about my coursesad. Just wanted to say you aren't weak stupid, useless or whatever else he may say. You are so strong and are doing so well. Please consider deferring a year, I had to in the end and although nervous about meeting the new students am in a much better place to make the most of it when I return.flowers

PAsSweetOrangeLurve Sun 13-Oct-13 19:39:30

OP - so sorry to hear about your Mum. I'd reiterate the advice to call Macmillan; they are a lifeline in these situations.

With regards to your H, ask yourself - would your life be any better or worse if he was no longer in it? He sounds like a selfish twat.

ImperialBlether Sun 13-Oct-13 20:57:48

What awful situations you're all in.

OP, I'm really sorry to hear about your mum. Would she accept help for your dad and you? You both need support and Macmillan can offer that, even if she doesn't want it for herself.

I think life is too short to live with a man who can't give you a hug when your mum is dying. If he feels the same way then I'd be packing his bags and letting him go. It would be one less stress.

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