Stuck in the middle

[lillystream]

Hi,

18 months ago my husband was diagnosed with a malignant brain tumour, had surgery, went through chemotherapy and all around had a rough year. This year he had a second surgery and has suffered paralysis. He has been in hospital now for 6 months and is not coping well with the prospect of his future.

I was constantly at the hospital for the first month after the second surgery. He was in such a confused and desperate state due to his acquired brain injury. He is in the care of psychologists at the hospital. There is a lot he won't share with them that he does with me. He he talks to me about suicide, which I did share with the social worker when he told me about his plan.

We have a 3 year old and for that first month she was being looked after mostly by family. I barely saw her each day and this obviously had an effect on her and her behaviour (very tearful, angry, ignoring everyone, extreme temper tantrums). I cut back on my hours when I hit carer's fatigue. He didn't understand and is still often angry with me about it, but it had to happen because I was so worried about our daughter. I still get angry when people say she will be fine and kids are resilient. I completed an 8 week circle of security course. This has helped and I thought she was starting to do ok.

Recently she had started showing signs of anxiety again - a lot of toilet accidents saying she didn't know she needed to go. She complains of stomach aches some mornings she goes to daycare and I go to work. Her aunt and brother collect her a day each from daycare so I can spend the evening at the hospital and recently she has been bursting into tears when they arrive and she won't tell them why. She told me she just wanted to be with me (I have probed and am not concerned about any abuse).

I am stuck as to how to help her, as the situation is not going to change for several months yet. Even when her father comes home things are going to be very tough because of his disability and his own mental state. He currently lacks any patience when she behaves like a normal 3 year old, let alone a 3 year old going through a rough time. He is also extremely demanding of my time and attention. He has admitted that he he feels resentful of her because she needs my time too, which he hates feeling.

I am seeing a psychologist. I am setting boundaries with his behaviour and expectations. But I am not sure what new strategies I can try without making a big deal out of thing, like accidents, with her.

[blondguy]

Hello Lillystream

Welcome to the forums

To say you are going through a bad period would be the understatement of the decade. I am sincerely sorry for what your husband....yourself and your daughter is & has been going through.

Your husband has a team doing their best to provide the care he justly deserves.....as well as yourself of course.

Your daughter is in her formative years being 0-3 years of age. These years as you know are crucial where forming the foundations for her well being throughout her life. With all respect to your suffering husband your daughters life foundations are being formed now and she doenst have the luxury to articulate herself like you or I can.

If I may ask you lillystream, does your husband have any family closeby that can lighten the hours of care you provide at the hospital?

You are a very caring and intelligent person who has way too much on her plate right now. You are pro-active by seeing a psychologist to care for the carer and good on you.

My psychologist recently told me to reduce the time I spend caring for my aging mum so I could spend more time with my 23 year old daughter who is finding life difficult.

Sometimes our intentions can exceed our ability and quality of care we provide to family not to mention damaging our own health.

This is only my humble opinion Lillystream but your daughter needs you big time right now. I am also tired of the people that keep mentioning that kids are resilient etc however your daughter is trying very hard to let you know she needs you.

My kindest wishes for you, your husband and daughter

Thankyou for having the courage to reach out and post too! There are many gentle people here that can provide support. You are more than welcome to post back as many times as you wish

Paulx

[james1]

Hi lillystream,

My thoughts are with you and your family. It sounds so difficult for everyone, and a lot of the burden is on you.

I'm really glad that you've taken all the right steps to also ensure that you're also taking care of yourself by going to a psychologist. That shows so much awareness of your own capabilities to ensure you can continue to support those you love.

Let me share with you a bit of my story because I have a biased opinion which I should explain. My own experience growing up was very disrupted because my parents were never around from when I was about 0-5, then again when I was 7-10. Of course, I don't remember any of it, but I do remember the feeling of never feeling loved by my parents (even though I knew that they did), and my family lives with the consequences of that today.

So my biased opinion is that your daughter is 3 and I'm really pleased that you recognise that she is struggling. Unfortunately, as Paul rightly pointed out, these are her formative years and she needs her parents right now. I was taken care of by family friends, childcare and after school care, but no amount of care can make up for a parent's love.

I think the suggestion to see if your husband has another support network is a good one - someone to help reduce the burden on you, so you can spend more quality time with your daughter and make sure she feels loved. She's old enough to know that you love her, but she needs to feel it.

Above all though, I just want to applaud you for being so aware fo what's happening especially since it is so overwhelming. We're here to support you and listen to you, so please feel safe to continue replying.

Best wishes in this incredibly difficult time

James

[lillystream]

Thank-you Paul and James.

James, your story is what I guess I am most worried about. Kids are resilient if we give them the tools and support to be.

I don't want to find out in 2, 3, 5 years time that she really didn't cope and it has had long term adverse effect on her. I can't change the circumstances but I can change how I respond to situations to ensure that she is supported as best I can. I am meeting with the daycare in a couple of days to discuss my concerns and their observations to make sure we can work together. The last week I have agreed that I would pick her up on days she tells me she wants me to (when normally someone else would) and her reaction to going to daycare has improved.

She is a bright and clever little girl. She surprises me by what she understands but will create her own conclusions to things she does not. I have learned through this process just how important having a 5 minute 'cuddle chat' each morning to tell her what is going to happen for the day.

We have tried to explain to her what happened to her dad. She has apparently been telling her friends at daycare that "daddy's arm and leg were hurt by a monster". When I spoke with her she acknowledged she didn't actually think that but she didn't understand what had happened to him. I don't think she will fully understand for some time yet, but we will continue to have regular conversations with her about it.

I feel like I made my husband's state of mind and situation sound much worse than it is currently. He had been home for the full weekend for the first time since February this last weekend and Sunday night I think it all just overwhelmed me. He is improving. Most days he can be his old self but he can switch so quickly and he does not have a filter right now (possibly neurological damage) so what goes through his mind in that moment comes out. His daughter is his priority 1 but early on, and in some moments these days, his emotions take over and he grasps at me like he is drowning.

In a lot of ways I am grieving the loss of what our relationship was. I don't want to paint a picture of some magical perfect relationship, because we are normal human beings. He is my best friend. We were a partnership on pretty much every decision. Then all of a sudden I am the sole decision maker, making decisions for his care, my daughter, my home, our finances. It is a huge shift we have both struggled with it.

Thanks for listening.

[james1]

Hi lillystream,

Thanks for your reply.

I am sorry if I made your fears more real, but I'm also very happy about how you've been responding to this so far.

I think you're doing an amazing job in making sure both your daughter and your husband's needs are being met. I wish my parents would have spared me 5 minute every morning just to explain what was happening - I think that will go a long way in ensuring she feels loved by you. Any quality time you spend with her will go miles in helping along her emotional development.

It sounds to me like you know what you're doing but you're finding it tough. Please feel free to post here whenever you're feeling down and don't forget that BeyondBlue also has other online resources in the links below (under "Supporting someone") and their support line if you want to hear a friendly voice as well.

We're always here to listen - I hope things start to stabilise over the coming weeks and months.

James

[lillystream]

Hi Paul,

In relation to family we do not have many close by. Just his sister and son in town. His mother is 3 hours away and carer for her parents. It has been especially hard for her as she wants to be with her son as well as her ailing parents. My family are all interstate.

We have a good friends network but original he refused to see anyone but immediate family. Confusion, fear, not wanting people yo see him so down. I respected his wishes initially.

Over the past couple of months I have just been inviting people to visit without telling him. Now he is willing to see people, but everyone has their own lives too and only have do much time.

I feel like my life is on pause.