Coping with devastation when your life is torn apart

[Mares73]

Dear friends

Thought it was time I got back online & shared what's happened & apologize for not being around to welcome relatively new members. 

I had hoped this year I would do a lot of healing. But life can be taken off you. My husband who's been in remission from leukemia for nearly  five years we've had devastating news that it's back & acute & aggressive.Things have to move fast. Hospitalized from this time onwards for approx 9 months of intensive chemo & bone marrow transplant. Not a good outlook but somehow do I stop my mind thinking of the terrible journey ahead. Telling the kids was so hard. I feel broken in pieces.  Try to be managing in front of him but sit up & cry all night thinking how will I get through this? He's just 40 & I hate life it's torn apart & Im alone to support everyone when I'm in pieces &  queston can an manage this journey alone.

Also the civil case against the Priest who abused me is on my mind. The church have suspended him pending investigation. I haven't even written my statement so lawyers on both sides waiting on me.

And how do I get through all this & give my kids as much support as possible, watch my husband deteriorate & visit him everyday not knowing if he will survive, get through a traumatic legal case about being drugged & raped as a kid and try act normal & strong & be the one who holds it all  together?

 I try to be humble, I try to think of all who face pain but right now I am on verge if tears always, have moments I think I know I'm only holding on for everyone else or I think I'd be suicidal. I'm tired of being told I'm strong. I have a he'll of a year in front of me & I feel like life has stopped, I'm numb yet I'm hurting deeply, I'm weak when I'm going to have to be so strong.  And I don't have any real practical support. Once people know they tend to stay away. I have no close friends & where & how am I going to get through this year. I don't  want to see my husband get sicker every day when he could die from his white cells being destroyed by chemo & infection or what if there's no donor or he doesn't respond to transplant? How do I relive the abuse & trauma I went through as a young girl by a Priest I trusted how do I get justice & can anything help give me justice? Money? That doesn't come close to redemption. My husband asked me to promise I'd keep going til I got some forms of justice.

I am alone, terrified, no support.

Friends-Neil, John.Geoff, GA  & all I need you.

Mares

beyondblue's clinically-trained moderators often work offline (invisible to you) on issues relating to suicide or self-harm. At the same time, general supportive comments from the community are encouraged. If you have concerns around suicide or self-harm, please phone our support service on 1300 22 4636.

[Mares73]

Dear friends it's been a while since I posted & I came back today intending to just offer others support but  I realized I've been alone & holding in my feelings that I need to write-there are no words for the support Neil, Dennis & White Rose have provided. I wonder how you each are as well as other dear friends like GA, Geoff & John amongst others.

In summary my husband had his intensive chemo & we were told although a bone marrow transplant is a high risk procedures it was his only real hope in be eating the leukemia. However then we received bad news that the leukemia is in his spinalccolumn, brain & central nervous system. A transplant isn't possible with those factors. Im caring for him at home a full on job & he is having weekly injections into the spine to try destroy the leukemia cells. 6 weeks of this treatment. Then they will try radiation. If that doesn't work I doubt a transplant willbee possible. I really struggling with having no be so positive around him & kids & then not sleeping as im up at 3am everyday because it's the only time I get too myself to think & feel. my husband is almost in denial but Dr's said that's his way of coping & let him be positive & plan for a future.  My kids a aren't so great. My 10yr old son who had been extremely aggressive finally broke down & said he hates going to school as he wants to be with his Dad & can't handle it when his Dad's in hospital. 

One of the hardest things for me is that last week I saw counsellor& was able to finally talk about how I felt & my fears as well as the realities my husband is blocking out. It was the first chance I'd had two talk about how I felt.  How I was scared I was slipping into depression because my whole time is spent at home with husband & he gets really angry if I want too even go shop. He wants me with him 24/7. Anyway it brought up a lot of feelings & I came home obvious that I'd being crying. He got very angry & said I had two be his positive carer & he couldn't handle seeing me upset. So now it torn between not talking to a counselor & just hiding how I feel because if I go to the counselor it's going to raise issues that I can't show at home.  It's like there's two universes & I'm may have two block out how I feel so I can be how he wants & needs me to be. Dredging up my feelings there's no space for them so going the counselor makes it hard to gointo the zone he wants me in.

 I'm just deeply tired, so anxious living on nerves & very alone. 

Lve Mares

[White_Rose]

My very dear Mares

It's so sad to hear your latest news. Such a huge load for you to carry. Is your extended family able to help? I know there have been difficulties there but I wonder if they realise how much you could do with a shoulder or chat.

Re going to your counsellor. Please do not give up on this. It appears to be your only release from the place you are in and you need that relief otherwise you too will explode, or perhaps implode. Not sure which.

A very dear friend friend of mine was diagnosed with pancreatic cancer some years. Her prognosis was not good and she died 18 months later. During the time she had left she decided to live as much as possible. She was single and had no at home support such as you give your husband.

She also became very demanding with her friends, insisting they go on trips that she arranged. One close friend went on one occasion but decided she could not afford to go a second time. They had quite an argument about it. One said she dying and deserved/needed company, the other said it was emotional blackmail and she was not able, for financial and other reasons, to go on this trip.

Now I am not suggesting your husband is about to die, so please don't get me wrong. My friend knew she would not survive and was very afraid. I suspect this is the reason for your husband's behaviour. Whatever the realities of the situation he is afraid and finds comfort in your presence. But you also need and deserve help. It just is not possible for you to manage everything without someone or something to lean on.

No matter how much you sympathise with and understand your husband you also need to look after yourself. He is being rather unreasonable in being cross because you do the shopping. How else are you, and him for that matter, going to eat.

Continue going to your counsellor. Either tell your husband where you are going and explain you need this in order to help him, or stay away until you have composed yourself. I believe the first option is the best. I know it sounds hard and cruel, but superwoman you ain't. Your husband must understand and/or accept that your emotional needs are important, that without them being met you will fall over. Tell him you love him, tell him when you will return, tell him you do not blame him for anything and you will be there when he really needs you. But be firm. You know when he needs you and when he can manage.

I think I have got into the way of being very directive just lately, but I hope I am helping.

Mary

[Dennis38]

Hey there Mares,

 Big huge hug.

Things here are a bit rocky and dark but I will get over myself sooner or later. Now then as for what is going on with you the only thing I can say is I agree with White Rose 100 %. You NEED to see this counciler or you are going to explode. Your husband is scared he tries to put a brave face one, tries to plan for the future, and he is leaning on you hard, that is why he freaks out when he sees you crying. No one likes to think that their rock is on shaky ground. I have more then a few people in my life at different times use me as that rock, and when they see that the rock can tremble it freaks them out.

You are going to have to be upfront with your husband say that you NEED to talk to the counciler that way you can be that positive force that he needs I his life, with out talking to this person you will just implode and fall to pieces. Again as White Rose said, you aint super woman!

Rose is right when she said tell your husband, do not hide this from him as it will only cause more problems that you do not need to deal with. Have you looked into getting a counciler for the kids yet? They need someone that they feel they can talk to with out upsetting either mom or dad. What your whole family is going through is hell itself. The kids are scared and more than likely walking on egg shells might do them some good to talk to someone.

Now then as for getting up at 3 am...allow yourself this three times awake ( one time on the week end) but you need your sleep and sleep will help.

Remember we are here for you as well. Wishing you and yours a better today...remember deal with one day at a time, the future will take care of itself!!!

[Neil_1]

To dear Maresy

All that’s been said by Mary and Dennis, I just would like to back up also (even the part about the huge big hug and also being a bit rocky and dark myself – but only cause you asked Maresy – and there, that encapsulates you beautifully.  Here you are going through one hell of a torturous time in your own life, and yet you’re wondering how others are and was going to come here and provide responses to others;  that is one beautiful heart of gold you have).

I won’t bang on more about the pluses for you to continue to seeing your counsellor – but when you do, perhaps they may have some advice as to how to approach your children with this whole situation.   I guess at least it’s school holidays now, so he doesn’t need to be at school for a couple of weeks.

While 3am might be a time where you’ve got it to yourself, I’ve been up at that time recently and honestly, it’s not that good a thing (especially when you’re not overly used to it – and I mean by being up at that time year after year, like a horse trainer or jockey or something like that).  But when it’s just “us” and our body isn’t letting us sleep, that’s not an overly good time to be trying to do stuff or “think”, cause thinking at that time can be detrimental to trying to get back to sleep later on.  You get things happening in your head and you go over them and then the mind starts worrying or stressing and all of a sudden, it makes it hard to get back to sleep.

I tell you what though – just print out a few of my posts and take them to bed with you – that way if you feel like you can’t sleep, start reading them – that’ll make you fall asleep straight-away.

Neil

[Mares73]

Dear friends it's been a while but I've often thought of each of you & wondered how your going. My life is a roller coaster. Husband with acute leukemia whose mostly been in intensive care due to infections. We were told a bone marrow transplant  was his only hope yet he's too sick to have one. He's only 40. It's been so hard seeing his decline. yhenmmy 2 beautiful children aren't coping at all. 10yr old son usually very gentle has become violent & aggressive to me & my responsible 15yr old daughter is escapingbby staying with friends who she seems to be drinking with. I've a lot to sort out with them.

Then there's my legal case against the Priest who drugged & sexually assaulted me when I was 13. It's affecting all intimate relationships & I now have to decide the evidence what I feel of about disclosing to him. That alone is huge.

 Thing is I can cope really well in accrisis-my whole life I've been the mother figure. When my husband was first diagnosed my mother's first comment was "oh mary This Is Your Time To shone, your made for dealing with crises so it's best it happened to you rather than someone who doesn't cope with a crisis". That sums up my whole relationship & my role growing up as the eldest in a family where my father abused me & was always drunk. My mother will only say she loves me if I give her money. My father committed suicide by alcohol & medication overdose 3 yrs ago. I have no family support.

Before depression hit me I was a functioning high achiever & always had been. Yet when I was serially assaulted by a stranger around the time of my father's death -I fell apart. And so the last 6 yrs I've lost all friends & have become very introverted & isolated, afraid to go out & so sad at my emptiness. Yet 7 years ago I was a different woman. Now I struggle to find things I enjoy & I feel so alone.

 Until last week I was coping with visiting my husband, caring for kids etc. Then 2 days ago I crashed & it was as though depression had overtaken me without me seeing it coming. I rarely get time to myself as im meeting others needs yet I had 2 hrs to myself & I couldn't enjoy reading -my favorite hobby. I could only stare into space.

I know the darkness is starting & I don't know how to stop it especially when my husband's supposed to come home tomorrow & I can't even get the house sorted. Overwhelmed

 Wish we knew when it would hit & what to do.

Lve Mares
 

beyondblue's clinically-trained moderators often work offline (invisible to you) on issues relating to suicide or self-harm. At the same time, general supportive comments from the community are encouraged. If you have concerns around suicide or self-harm, please phone our support service on 1300 22 4636.

[Neil_1]

Dear Maresy

Things are tough and just seem to be getting tougher for you and to say that life is not fair, seems like the understatement of the year.

For your mum to comment like she did seems pretty unfair – “time for you to shine”.   Oh boy, without your husband’s dreadful illness that he’s trying to fight, you already had enough on your plate as it was – your plate has suddenly become a platter, with sides on it, to keep everything on it.

You know, I can totally understand when you said, when you had some spare time just recently that you couldn’t even read – because when things are so full on and we’ve got stressors coming out of our ears and we’re up to our neck in worry and troubles, those things are simply not going anywhere.   And just because you find a spare moment to have by yourself, these things are still in the forefront of your mind and it’s no wonder you couldn’t pick up your book and just read – cause you’d probably read over and over the same sentence and not make head nor tail of what you were reading, cause your mind is elsewhere.

You mentioned that you are the eldest – so are your younger siblings not able to help out at all?    Or what about your husband’s side of the family – are you not able to call upon someone there to give you a helping hand??

I think with regard to hubby coming home, just a quick once-over of things would be all that would be needed, wouldn’t it?    I don’t think he’s going to be all that concerned about things – as I’d imagine he’d be just super pleased to be home and out of the hospital?    Will he be home for some time?

I know things aren’t good for you at the moment, but thank you so much for being able to come here and post again.

I wish I could say ‘anything’ that was more positive and helpful.

Kind regards

Neil

[Dennis38]

Hey there Maresy,

Yeah the knowing when depression is going to hit would be a great thing, but sadly I can not help you on that one as personally I never know when mine will hit or for how long it will last.  As neil1 said just a quick once over is all that would be needed any time anyone comes over.

Time for yourself can be controlled a bit easier then you think. When I get time for myself, normally once a week and that is it of late, I try and go for a walk just by myself, no dogs, no wife, no nothing just me and my head. Before I leave for my walk I will pick one thought that has been running around like a demented squirrel after a nut and chew on that thought. Turn it every which way I can with the goal of looking at it logically, not emotionally. Some times I even manage to do that, other times the emotions just run rampet with that thought. But I find that even if its just an emotional rant to myself, and right now I have been doing a lot of ranting lol, I feel a little better.

I think that by keeping a "stiff upper lip" can actually screw us over more then it helps us. So maybe when you have a few hours to yourself, even 15 minutes just pick one thought and just try and think about it logically. Even if you just vent to yourself it will get those feelings out and it does help.

Always best wishes to you and yours

A friend in the dark

[Mares73]

Dear friends I am humbled by your continuing support. In brief my husband's been in intensive care twice the last month with infections. He has been home the past 3 weeks & I have been a full on carer. He has been very demanding due to his own frustration. He can't have any more chemo. Ideally he would of had his bone marrow transplant by now but infections keep delaying it. Next week will be a big one-he will have biopsies to see if the chemo has worked & then try a transplant. We haven't discussed what if the leukemia still remains & not being able to have a transplant. Too hard. I'm exhausted. He doesn't understand why & I'm slowly feeling the darkness creep over me. I can't seem to stop it. There is nothing I want to do but stay in my pj's & let the day pass. I'm slipping again. Anyway how are you Neil? And Mary? And Dennis? Thinking of you, Love Mares xxx

[Neil_1]

Dear Maresy

Thank you so much for being able to come back here and post again.

I can’t believe how tough things are for you at this time and I can fully understand how you say that it’s just getting all too hard – it must be incredibly difficult with all that you have to face each day and on top of this, you’ve also got your two beautiful children who are relying on you also.

I’m guessing that since the last time you’ve been here, that you haven’t been able to snare much ‘me time’.   I just wish there was someone you could call on to come and give you a hand from time to time, as I’m sure you would love for something like this to happen also.

Is your husband still able to move about or is he mostly confined to his bed or a lounge?   Is there no kind of ‘home-care’ system where a nurse or kind of hospital helper could be arranged to come around to help out, just to ease up your workload a little?

Little ol’ me – yeah, I’m cruising along on the ‘boat of life’ Maresy – sometimes it’s splutters cause some tool put in two stroke petrol into a 4-stroke engine, but apart from that, it’s pretty much, ‘same old, same old’.

Sending you warmth and best wishes,

Neil

Ps:   Maresy, if you get the opportunity, you may want to check out in the “Trauma” section here in Beyond Blue forums, a post that has been created by “Lace” – with the title of:  Trying to deal with the aftermath of appearing at the Royal Commission into Child Sexual Abuse in Institutions.

[White_Rose]

Dear Mares

So pleased to hear from you again. You have had such an awful time for some years and show an amazing strength. I will put you at the top of my role model list. Seriously! I have read so many sad stories on BB and I wonder how I would manage in other people's situations. But it's always different when you are in the firing line, so to speak, and the strength does come from somewhere.

You ask how we have all been going. For me this year has been difficult. The past has resurfaced with all its pain and I discovered I had breast cancer. Had surgery followed by radiation treatment which has left me feeling very tired, but I know I am getting well again. It was rather a shock but I am regaining my energy and starting to get back into all my my old activities, albeit in a small way.

I returned to my exercise class a couple of weeks ago and had a very rude awakening. My fitness level had plummeted and that first week I was exhausted by the time I left. I was horrified and disappointed, almost in tears that the work I had done over several years had vanished. The second week was a great improvement so I am hoping I will return to my former level of fitness more quickly than it took to reach it in the first place.

Are you managing to see your psych these days? I imagine it is difficult to find the time and energy but I really believe you need some time out to recharge your batteries and get support from someone who understands where you are. You have suggested to many people that they need to care for themselves in order to care fro others, and now it's time to take your own advice.

Take care of yourself and here is a big cyber hug.

Mary