This month in May I realised I hit a limit, took over a year to reach out. Then when I reached out informed only enablement services available for husband (42), following week BI Team visited and gave devastating news; my husband not at stage for BI OT to access community safely and clinical psychologist will do more home visits to support on behaviour.
In 14months, I have solely been on my own with two children now 3 & 15, working, no support, so reflecting on that meeting I attempted with Headway again and offered Family Support which includes support meetings; they understand husband will not initially attend but in time maybe we go together.
I'm hoping on call in week, whether I can go via occupational health to have the time off as already with medical meetings,childcare I'm continuing to struggle with demands and work continue to pressure me with workload that even requesting reduced hours I didnt do due to demands and timescales.
But I dont know what to expect from meetings, I've barely talked about the past 14months verbally think 3 times, as struggling to come to terms with this, but also informed I'm coming out of autopilot stage reason limit hit now.
I just want to feel prepared with what to expect with support group. Many Thanks x
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Hi. Have you considered having a chat with the Headway helpline? They have always been happy to talk about anything and everything with me. Their number is 0808 800 2244. Wishing you all the best.
Yes I did call them end of May (I think) and told to call my local Headway for family outreach support, but told to call them again for the emotional support
I don't know. I did chat to someone on the phone about attending a group but it wasn't very close and I didn't really take to the person who organised it(no reason for it really) on the phone.I think talking to people with similar probems/experiences in a social setting could be helpful.
I would feel tad better if someone stuck by us or observed the impact, and recognised the progress somewhat being made slowly. I would find a way to talk or share decisions to get feedback, but I have absolutely no one, last lot of friends disappeared August or beginning of September. Apart from work,, shopping, absent BI Team literally last resort physically reaching out, I've thought and tried so many techniques to prevent me doing to try everything. I haven't even got anyone to talk too about general things away from TBI. I'm literally Billy no mates, we dont live in friendly community. Even when neighbours heard husband kicking off they've closed back door, never once neighbours checked if me or kids ok even when it was rough at PTA stage.
Evenings 7:30/7:45pm onwards I have a sit down time, mornings 5:30/6am gone now as toddler in single bed and she runs around soon as shes awake, (miss the cotbed with rails lol)
Just feels so rough with man child, stroppy teenager and ferral toddler and no one to talk to whilst still putting home rehabilitation in every day, trying tasks professionals fearful of doing
Well I dont know how to compare really but just told hes doing well with all home tasks; washing machine; toddlers routine; cooking together and now supervised cooking with oven/hob. But all meals breakfast/lunch microwaved.
But last Monday told hes not ready for BI OT, as both clinical psychologists and OT attended home visit. Its recognised my husband wont access community without me because he feels safe that I can control and somehow I remain calm. We managed roughly 30mins in positive manner accessing community but hit and miss, but I still do, and to make things harder daughter a right little madam shes a blemin screamer when she cant have her way, we felt lucky with our son as dredded those little screamers, but now backfired. It's really hard trying to manage toddler and trying to do tasks that OT wont attempt so trying my hardest to get at stage.
I will go at husbands pace to build self confidence and support best way but I know I need to push boundaries with trying new things for him to gain self confidence best he can
You need to speak to the headway rep for your local support group they are there to support you as well as your hubby speak to the headway helpline and explain how you're feeling,as covid closed the group down my headway rep has phoned every week to make sure I'm good as I live on my own I know if I ever need to talk she's there,you need to find that kinda connection just so out can offload.You made me laugh about the toddler when my son phoned I asked how my 2year old grandson was, his words were "he's ferral",good luck
I sent form today and followed up they received, husband seen form yesterday as I asked him to help printing off I couldn't connect my phone to printer. Feels like a big step sending today, I understand restrictions and next month I take the scary step when news of support group. This forum been my only support network past 12months feels weird in good way I've reached out physically. Glad you have weekly calls from Headway and fingers crossed you receive news about groups soon x
My rep told me last week when she phoned she was going this week to do a risk assessment because of the covid issue so hopefully it will be back on soon,at our group some of the guys with the brain injury their wives come or else they drop them off and come for a chat when they come back to pick them up,some have issues with their language and what they say ,they wear badges to say so, headway do them we just let it go over our heads we know it's not their fault and it works for us as a group I enjoy going,hopefully you will get some support and a release from the stress and tension you feel but at least you know you're not the only one with a ferral toddler my son has one too with the sweetest smile going,you take care x
I attended my headway support group about 4 months after my accident,one of the guys came and picked me up and took me home as well I wasn't allowed to drive then but it kind of summed up the group that they would go out of their way to help if they could.Everyone there had a brain injury but the reasons why were all different I found it fascinating just talking to them and hearing their stories,we do quizes ,do crafts,play different games have an afternoon out and I enjoy it,hopefully it will restart within the next month and it's something I look forward to
I think the family support gives you a sounding board, shared experience, and learning to laugh and cry. It will help you to realise that you are not alone, and may give you information that is only known within the community. It helps you to know how Headway day centres can help your husband.
It's difficult for those that have experienced the injury, but some activities can link in. For your husband, it will give lived experience and the common friendship that head injuries often are difficult.
Both aspects of their support is a lifting of weight, and gives a level of respite.
I'd grab it with both hands, for the children they can give activities in the form of play therapy to help them understand.
Yes referral sent today, I followed up that they received. It literally feels like deep breathe moment actually reaching out and doing. But I know it's the right way to go. Husband helped me printing form as I'm poor at technology but he doesn't want involvement at this moment, which I understand with clinical psychologists meetings starting next week, too much at the moment and hes still in raw motions of accepting changes.
I will speak to son more in depth when I've had initial conversation so he is involved, hes spoke to Headway nurse at the beginning and weve looked on website together . Our ferral toddler, well anything be handy at this stage
Always reach out, and try what you can, I wish I was in reach of a Headway where I am, used to only go one day a week, but it was just nice feeling normal, and not having to explain everything. Like you say, a deep breath xx
I will give until july 19th, as when referral done they was going by government rules, but I thought I would of least had email or telephone communication. Will call spur on moment as rough day yesterday x
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What do all or some of the abbreviations used mean! Can Headway explain please.
Living in hell
