First Post - Caring and coping

Hi, this is my first post. I am caring for my wife who had surgery over three years ago to remove a low grade posterior fossa astrocytoma brain tumour. It is a very rare tumour in adults, although it was removed it has left a complex and challenging recovery. She has cerebellar related injury including double vision, balance/mobility issues, trouble swallowing, speech difficulties and increasingly challenging emotional liability. We have a daughter who was 9 at the time of the surgery. I am still struggling to put together a support plan that we can all manage, every aspect of our life changed so quickly. Very pleased to join this community to share and learn.

11 Replies

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  • Welcome to out community. You will get lots of support here.

    So sorry about your wife's problems, it must be so hard for you with such a young child to cope with as well.

    Do keep us update with how things are.

    Jan

  • Hi welcome to the forum, it sounds very challenging for you all. There is a lot of help out there, the hardest part can be knowing where to look. But the great thing about the people on this forum is that there is always someone who will listen, and willing to help and probably gone through the same problems, and may have a solution.

    Angie :-)

  • Hi Davmai and welcome. Please contact the Headway helpline for advice and support. Apart from their own expertise, they have access to other care professionals & agencies who might be able to help you and your wife.

    The number is 0808 800 2244 (office hours--free calls).

    Let us know how you get on. Best wishes , Cat x

  • Hi Davmai

    I had a brain haemorrhage in my cerrabellum. I suffered/suffer with all the issues you state and 9 years on (Jan 2008) I am now in a good place Like Cat says though! ring Headway they will be a massive help to you and are very professional and understanding

    I was a young professional 49 year old with a fantastic and rewarding job, living a lovely lifestyle with my husband of nearly 38 years (April 28th 17)

    My life changed completely 9 years ago and the life I lead today is very different I am able bodied but have ongoing problems some being I can't work, or ever leave our home without assistance

    I have one son who lives with his partner Julie and they together have two boys age 1 and 6.

    My life has taken a very different path to the one me and hubby had planned but we have learnt (not easy at all at times, but that's another story) to manage very well and adjust our lives accordingly And it's a good and happy life now

    If I/we can help you or your wife please message. We are more than happy to help

    Take Care

    Joanne and Derek

  • Hi, I have been so happy to see your post. It means there is hope for the relationship to go through that change. I had a broken hemorhage two yrs ago, one month before I got married. Im struggling with the recovery and being in marriage. I would love to know more how you have gone through difficult times.

  • Hi again Dav. I'm wondering whether you've phoned the helpline yet ? I'm not sure whether they're available today and Monday as it's officially a holiday but you could try, otherwise try Tues.

    Also the following link might be worth a try :-

    carersuk.org/help-and-advic...

    Best wishes x

  • Hi Cat, I have previously spoken and met with our local Headway, but we didn't progress as my wife's emotional issues were holding back from more structured rehab activities. Our GP is excellent and is also trying her best to coordinate all the various consultants, so hopefully we can make progress on that in the next few weeks. I have never called the Headway helpline, I might do that to talk through the various referrals that we are chasing. Thanks so much for your kind help, very much appreciated

  • Great that you have a good GP Dav. Mine (of 30 years, but not any more) didn't even ask how I was doing after 2 months in hospital with a brain haemorrhage. So with a helpful GP you have quite a headstart.

    I really hope your wife's emotional state can be stabilised before too long ; it's often a big issue after brain injury of any kind.

    Hope there'll be a breakthrough really soon so your lady can start rehab & move forward.

    All best wishes, Cat x

  • Hello Davmai

    Welcome to the group - I'm sure you'll soon discover what a lovely bunch they are here, finding this place was a big relief for me, as it's so easy to feel alone with these issues.

    I'm so sorry to hear about your wife's brain injury; it sounds like life must be very difficult for you, your daughter and your wife right now. Recognising what support you need and putting it in place is a struggle I'm also having right now. My wife had a brain aneurysm bleed 18 months ago, and while she's been out of hospital for 10 months now, she's still unable to speak well or understand others as her brain's language centre has been damaged. I think I must know some of the things you're going through every day, although fortunately I don't have any children to look after.

    I really hope you find the support you need to care for your family, and glad you've made the step of posting here. Sending very best wishes to you all.

  • Thank you all for your kind messages of support, it means a great deal. I have a lot of questions, so will post some more as I get the time and will also be following up with Headway. Thank you very much.

  • HI, my OH had a cerebellar haemorrhage two and a half years ago, and initially had all the vision, balance, swallowing etc. problems. Luckily they all resolved with rehab in the stroke unit, apart from balance, short term memory and some cognitive impairment. What a challenge for you all! The reason I'm posting is to share that help from a neuro-physio for the last 2 years has made a huge difference to his balance. She comes to the house, initially weekly, and gives him exercises to retrain his brain and use the undamaged bit, by developing new neural pathways. Half hour of exercises twice a day, and he must have someone standing by him to catch him if he overbalances - which at first he did all the time. He has gone from only being able to 'furniture-walk' when he came home from hospital, to being able to slowly walk outdoors on his own with just a walking stick.

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