A mums tale

Im new on this but thought you guys could give me an insight from actually living the situation. My daughter is a 25 year old paramedic and had a serious RTA in Feb last year. She is still in rehab centre but hoping for discharge in the next few weeks when care package sorted as weve agreed she doesnt want me as full time carer but her mum. She cant walk very well and struggles eating and drinking so still has peg in for medication and fluids and cant speak but communicates with spell chart, her mobile with texts and on facebook with her friends The massive issue is fatigue. My question is how can I best support her when she is home in respect of social time. The care agency we hope to join offers daily workshops which I thought might be good to meet new friends but my husband is against this as he says Niki has her own friends already and we are pushing her into joining the "disabled" group. I think he has still not accepted that she is now disabled as we are all still trying to come to terms with the nightmare of what has happened. Niki participates in all therapies and workshops at the rehab centre but I dont want her to feel Im patronising her by suggesting that she tries whatever is available. I just worry at the moment she will become isolated with just a personal assistant for company when we are at work. Id appreciate advice as just want to do the best I can to help her.

Kath

16 Replies

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  • So sorry for the situation that you and your family have found yourselves in.

    You have a very pragmatic and healthy approach.

    Everybody will have an opinion but you need to find what works for you.

    What I would say is that I think you have some good ideas. Many of us here find that the friends we had before disappear as they don't really understand brain injury. It is therefore crucial to make new friends.

    I wouldn't look at it as joining a disabled group, many of those there will have many things that they are able to do and yes some they are not able to do. What they will have for your daughter though is an understanding of what it is like to live a life that is changed and different. That is something that us carers and friends without BI wil never be able to do.

    If your hubby wanted to play golf because he loved it, he would spend time with those who understand the passion, leaving us non golfers outside. It doesn't mean he has no non golfer friends but it does mean he can spend time with those who understand his golf and don't yawn when he talks about it. Odd example but just a different way of looking at it. Your. Daughters group will just be one of a number of social circles but one where she is understood and one where she can be more honest about herself because others will know what she means and how she feels. Sometimes friends and family without BI don't get it and don't really listen as they think/hope that normal service will be resumed.

    So just one of her places for socialising and for learning about her new life rather than mourning the old life.

    As for the fatigue, that is long time healing. Take each day as it comes, plan short term and flexibly so if it is a tired day your daughter can just take guilt free rest. Important for her friends to know that too. If she says she is tired accept it and never make her feel she has let anybody down by not doing something that was planned.

    If I were you I would suggest away at any opportunities to create new social circles but also accept that she may say no. It isn't patronising it is caring. You wouldn't have hesitated when she was growing up in suggesting new groups and new activities to help her make friends and to fulfil her potential, you are just being a mom which is what she wanted and what she needs

    It is a tough journey for all involved including mom and dad. Acceptance is so hard for us family members. It takes work and an open mind

    You and your hubby need to talk honestly to each other first so you can appear to be together on this. Then talk to your daughter. Ultimately let her make the choices but yes do keep giving her the options, how else do our children learn what is out there

    As I say we will all have opinions which may be right for some and not for others. You need to find what is right for you and yours but try to get on side with hubby so your daughter does not feel she is creating a rift. So many injured people take all sorts of guilt on their shoulders.

    What a fab mom you are, your daughter will benefit because of you

    Hope that makes sense? What I am really saying is tell hubby it is just a group not a disabled group. A group that will understand his girl more than he can because of what life has dealt

    Good luck and love to all

  • Meowth you have offered a brilliant response and I am 100% with it! Only thing I will add is that Niki's recovery journey will be extremely long and no one, not even the medics, can predict at this stage how far her recovery will take her. Take one day at a time and notice the things she achieves however small.

    You have found a very supportive and understanding site so please do stay with us. Also as Niki is able to communicate using text etc she would probably find it helpful to ask questions, read helpful info and suggestions or seek support and understanding on here too.

    Best wishes to you all x

  • I will give Niki the details of this site as Im sure she will find your support invaluable on her journey

  • Thankyou so much you sound as if you have travelled this path and what you have said reassures me that I need to try and find every outlet I can to offer Niki and let her decide if she wants to give it a go. We have already found after nearly a year in hospital that her friends and work colleagues are slowly disappearing - I get it people have their own busy lives. There will always be the core group that stick by her whatever but she cant do what she used to - definately not up to nights out at Corp till 4am so as you say she will probably need to accept this at some stage and move onwards with something positive she can do. I will be with her every step of the way but I dont want to make her decisions for her as she is a 25 year old woman not a child. I cant express the total devastation I feel for what has happened and how cruel life can be and it would be easy to try and make myself feel better by trying to do everything for her but I know she needs to become as independent as possible again to make her feel better which is the most important thing. I will just need a bit of guidance and support.

  • My situation is slightly different in that it was my hubby and he is mobile and pretty much independent now. But he was robbed of his career by BI and over the two and a half years since it happened nearly all of the old crowd has disappeared, including some family members. However hard we try to explain how it is and how it will be friends want the old sociable up for anything guy they knew. I don't blame them but hey. I think it is their loss

    He did have to deal with his frustrations first and to start to accept that his old life was gone, until then any suggestions fell upon deaf ears. This led to him isolating himself and becoming depressed because he believed he had achieved nothing. So strawberries and cream is spot on re achievements. Ensure your daughter sees each day what she had done and can do. My hubby took some inpatient care for depression which resulted in a rebalancing of his meds and the start of his journey into his/our new life. Only then could I really start to come to terms with my new normal and our new normal. As you say it is devastating but somehow we have to move on.

    There are days when he still gets frustrated and even considers if he would have been better off dying rather than surviving. But there are more days when he enjoys what he does and sets himself targets. My role is just to be the voice of reason at times when he wants to jump too high or too quickly but I never stop him or tell him he is wrong just sometimes offer another approach which will achieve the same end. On the occasions he feels overwhelmed by a task he lacks confidence in I take it from him without making him feel he failed, just see it as part of the partnership. That's means he can more easily ask.

    We are far from perfect at this and have set backs and both vent our frustrations. But we bounce back without holding a grudge and start again. Honesty is hard but helps.

    Two and a half years on he still has days where he wants the old him back but he can usually work through that now rather than a deep downward spiral. His confidence still suffers sometimes (he was a very confident, globe trotting chief executive). So I try to reassure. His voluntary work for a few hours a week help as he realised that others still value his knowledge and skills at a time when he thought he had no worth. The people who didn't know the old him just take him for who he is.

    It is a long journey one that maybe doesn't end but there are so many times when it is all worth it.

    Get some support for you and your hubby too when you need it and feel ready. You have been through a traumatic time both of you

    Keep with the site, there are lots of family members on here who will know how it feels to be in our position. It kept me going in the early days. I learn something new from people hear all the time, both those with BI and those living with them. Different perspectives are priceless.

    Never feel bad about doing things for your daughter, sounds like she well knows the difference between mom and carer. You can offer help and independence at the same time. Allow yourself to make mistakes and not feel bad about it, you are learning. For each mistake you make you will have delivered many victories. That's what being a mom is about. You are not the mom of a disabled person you are just a mom doing what moms do and doing a wonderful job.

    Hugs xxxx

    Hugs xxxx

  • How life changes in the blink of an eye.

    I thought both my kids were sorted as Niki had a career she loved and was saving to move into her own home - perhaps a good job she was still with us as the financial side of things could have been very difficult to deal with as we have no rights regarding sorting things out legally. As it stands Im having a ground floor wet room built and then we can see how she progresses mobility wise and decide if a move is on the cards.

    She is very down at the moment as her employer has just terminated her contract as she will never be able to return to a paramedic role but I try to bolster her by saying she may be able to return to some kind of work in the future and she is already looking into doing some further Uni course, but may have to be an adapted one with the fatigue . I think this is the hardest thing for me knowing how hard she worked to even get a place on the course as its so competitive and to have it all snatched away when she was just starting out as she only finished Uni June 2013. Both my hubby and I have said it should have been one of us and we would swap places in the blink of an eye but we cant so can only support her and her brother, who is doing a masters degree , as we always would but boy some days are hard. I still wake up - on the odd days I sleep and thinks its been an awful nightmare but the reality kicks in and its a case of forcing myself to get up and get on. Its probably an emotion everyone who has been injured or is family of someone who has feels so I know Im not alone but its a lonely place. I will keep in touch on here as already feel on bad and good days this will be the place to share those feelings.

    K

    x

  • Good advice from others. My husband had his severe TBI 3 years ago. Every day we start from Zero. I tell him who I am, who he is and that we have been together for over 40 years. The feeling of loss on a bad day, leaves me with such sadness it can seem unbearable.

    But there are days when what to some are small goals, can brighten my day. He can still make me laugh and say he loves me. Everyone who posts on here are more able than my husband will ever be, but I draw comfort from reading about their achievements and the advise you all give to others.

  • Thankyou for sharing your feelings. I am so thankful that Niki knows everyone and how much we all love her. She is frustrated that cant speak but texting and facebook give her a lifeline to her friends with the privacy she needs. Its easy to forget how far she has come in the last few months but I constantly remind myself and thats the only way I can cope with this.

    We celebrated every little tiny progress from her surviving the accident and slowly coming out of the induced coma, coming off the ventilator, having the trache removed, starting to move, opening her eyes ........the list is endless as Im sure many of you know and Im always telling her how far she has come and who knows how far she can go in her recovery. We are not blind to the fact it may not get much better for her but have to keep positive and find ways to keep her positive. Coming home will be a huge boost after nearly a year in hospital.

    This is the first time in a year Ive felt able to actually say how I feel honestly as always scared of upsetting family . Im angry that Niki has been dealt this terrible blow as she is a wonderful girl and was doing a job she loved helping other people. I think why her but then again why anyone... there doesnt seem any justice. People have said at least shes alive thinking thats a comfort but as you all know BI brings so much devastation to a life which can never be the same but reading posts on here gives me hope that slowly life may get better for her - I can only keep that hope in my heart.

  • Lots of great advice already been given.Just wanted to wish yourselves and Niki all the best x

  • Thankyou all the good wishes are much appreciated

  • Look after yourselves as well, and don't waste energy on feeling guilty that you're not doing enough.

    Your daughter needs to retain some of her old friends, but it's also good to have time with people who face the same challenges and can let our guard down. My Headway sessions allowed me to pick up some really good friends full of useful advice.

    Would her friends come round in pairs? Perhaps even give you a break for a while? Visiting someone with a brain injury can be daunting and with two visitors they can talk if the BI person just listens. If they got involved with the rehab on a regular basis they'd feel good and it would strengthen friendship.

  • Hi Kath,

    It sounds like your daughter is recovering well. I'm a fellow paramedic and Id like to wish your daughter great well wishes. I'm an ABI survivor and all I'll say is you say and do what you can for her - I'm sure she will let you know one way or the other if she finds it patronising or helpful. Managing fatigue is difficult but the social time needs to be maximum half hour chunks, one visitor a day/bi days.

    Love to you and your daughter Kath

    Deb

  • Thanks again to all that have replied. I think Ive definately found a good place to speak with people who understand the challenges we face - both Niki and her family and friends. Do Headway have regular meetings, we are in Sheffield?

  • I don't know. In fact I wasn't aware Headway do meetings anywhere.

  • Dear Niki25,

    Our network of Headway groups and branches across the UK provide information and support for people who have experienced brain injury, their families and carers, but it does depend on the area and the resources available as to what local Headway groups will offer. Some are run by volunteers and offer informal social support whilst others offer more extensive services, therefore it is best to speak to your local group/ branch directly to see what is available in your area. There is a Headway group in Sheffield, more details can be found here: headway.org.uk/branches/she...

    I hope this answers your question Niki25.

    Best wishes,

    Headway UK

  • Thank you very much - I hope this helps others too who weren't aware of this service

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