Carers does it get better- own emotions: So from the... - Headway

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Carers does it get better- own emotions

New_beginning profile image

So from the moment I seen husband on life support to even now 13 months later the nausea, constant flashbacks, no appetite, excessive chain smoking (only at nights), silent cries whilst working, caring, zombie mode, no headspace to digest information apart from family functioning

Third week now back on the raw emotions from day one its not budge and think potentially burnt out hit depression, I'm flat but routine, structure just happens naturally so zombie mode is really kicked in.

Basically, is this how it will be being carer/wife/mother; think I need some hope it will ease with emotions/thoughts I'm quite good at other times snapping out of it after 2wks, but this emotion feels different and im scared am I going into nervous breakdown , . I know I shouldn't take on what professionals stated to me at the beginning that I would have one, but I'm so scared. Its always freaked me out then recently health visitor came as 3yr old has issues but she made same comment what will happen to me. These comments always say back of mind but there.

Im unable to be ill, show any negative emotions, sad emotions, and be vex even sad toning when communicating, it triggers husbands behaviour, so suffering in silence.

Basically I have to remain strong in his view I totally understand that aspect though.

Worried suffering in silence, barrier too reaching out for help just let down by my friends family walking away and professionals absent but there visiting monday first home visit since December due to 3rd lockdown.

Carers does it get better or stay same but down to coping mechanism to take it course.

36 Replies

You need to take time for you! You might have ptsd and pure exhaustion. You have a lot on your plate and seems like you have no help at home. Is there some way to get time away even for a few hours? A hot bath, chocolate and a glass of wine helps me. But most of all prayer helps me the most. Praying fof you! Keep enduring! Xo

New_beginning profile image
New_beginning in reply to Angech

I get a break after toddler settled in evening 20mins earlier today as she has exhausted herself playing non stop in garden since this morning (she is on the go 12hrs she just abouts sits down when eating) then I get 30mins guaranteed before bed this is when the chain smoking heightens. The 30mins before bed been consistent for 4months now, twice this month used it as a run on treadmill.

I always sit with my husband in evenings 40mins-60mins, that's also our only time together he can barely talk with fatigue at this point.

I have no one for support, feeling that also contributing now with such low mood, its 7:30pm and I've been crying since I got up 6am. Crying going to work, at work, driving home, crying silently out of view but cant stop, crying bathing my daughter, crying reading her book just cant stop crying, crying now.

Thank you for doing a prayer,

Angech profile image
Angech in reply to New_beginning

I know it is very hard. I have had to sit myself down many a time and talk to myself. Focus on the good, positive things in your life. Things will improve, day by day. Take one day at a time. Have you actually asked anyone for help? Try asking a family member or friend even if it is to sit with them so you can go for a walk or do something for yourself. Everyone is stressed due to covid but there are still people willing to help, maybe. I will keep you in my prayers.

New_beginning profile image
New_beginning in reply to Angech

My husbands family walked away by end of May 2020 they live 1mile up road I.e his parents, 9th week exact as my husband called his adult sister a 'Chav' it escalated and he swore, they were given all the headway information they seen him on life support. My family live 1mile up road all avoidance, not actually seen my mother, my sister 4 times. My friends even 20+years not seen I think it was August. I've seen few work colleagues, I'm the only one who can work in office with covid restrictions supported by occupational therapy as impossible to work from home all day.

Sunday we did our first 22min non stop walk with no behaviour issues I seen two suppose friends who ignored us, but very proud of moment still.

Brain injury team visited weekly from June due to lockdown had to wait (10wks from bringing him home, I just refused residential when behaviour became to risky, then to December, lockdown again but visits back on this Monday afternoon. Yes many positives to share especially with supervised cooking, using the washing machine now, the walk sunday but many areas on behaviour to touch upon. Every day I've continued with home rehabilitation using all techniques from speech and language from May I was given loads of worksheets.

I have no one to ask personally for help let down, left on my own from absent professionals too I asked for help first 3months only twice help came at crisis times, many other crisis points no one came, scared of husband and they didnt agree with me that I wouldn't put him in residential for safety. I have no regrets.

I will phone gp and Headway,

Have you thought about taking respite ? Or even getting an extra pair of hands in to help you with your husband ? You have to take a break or you will break hun . Glad you have reached out .

Hi new, it sounds like you need some help to process your thoughts, you are not having a breakdown, what you are experiencing is natural, but you do need to unpack it, and safely file some of the thoughts, your GP can help, and an over used phrase, speak to Headway, they support carers.

Don't just plough on in silence, that won't help or be healthy, it will impact, and will come out, best to start managing this now. Also you speak of flashbacks, this needs to be addressed, it is a response to the shock you had at the time, some may say PTSD. I'm not so sure this is, but it is heading that way.

Good luck, 🍀 and keep well.

I had 5mths 3wks for PTSD therapy in 2011 6 hours per week non stop for own accident I had, I fell and loss all my top teeth and broken jaw in 2010. GP aware I had tendencies to end my life and the process of planning stopped in 2016, but even up until my husbands TBI I had to go GP once a month Im diagnosed with insomnia from Oxford Radcliffe . I haven't seen my GP since February 2020, last spoke to random GP December 2020.

I've managed best I can but now just crumbling rapidly.

Hi, then from what you are saying you definitely need to reach out for help. You have the insight to recognise how difficult you are finding things at the moment. There is only so much anyone can take.

I'd still say that you are not breaking down, but you are on your limits. This last year has taken its toll in addition to your husband's accident, anyone would struggle to juggle all the stress. Headway can help you access services.

You say your GP is aware of your history, then that will be in your notes, so any of the dr's can access your notes. Sadly they don't always read back far enough, so you may have to tell them. Please contact them again, explain your history and your current stressors, tell them that your sleep is still disrupted, and that you are experiencing flashbacks. If you have to, call them every day.

Managing the best you can is no way to continue with.

As you explained to me, explain to your GP please. I will always respond, and others in the forum are here for you.

Let me know how you get on with your GP, and Headway. You may feel like you are on your own, but we are all here, just a tap on the keyboard away x

I will phone both, that's far as I know I can reach out and that will be hard to do.

This forum only support I have, I dont want my emotions to compromise with home rehabilitation and his progress hes reliant on me for everything and expects my strength although he cant regulate emotions or show empathy, he knows I'm his rock getting him through recovery and hes aware I'm taking care of all the other demands solo. I tried talking how I felt to my husband this evening weighing him up prior, he picked up phone to laugh at joke, however on positive note is I actually attempted he usually kicks off calling me names as he cant cope. I just walked away having my 30mins me time.

Thank you pairofboots

I have GP appointment and spoke to Headway this morning.

Glad to hear this, hopefully you will get the help you need and life will be a little brighter x

Headway reassured me I've done really well with absent support, I'm coming out of auto pilot mode now and basically everything hitting me. Lady stated even with loved ones who's had lots of support hit this phase a year after, again reassured I've done well to get this far. I have to wait a week for GP appointment but glad I made it and spoke to Headway.

Informed to contact my local Headway for family outreach support as my local one provides. Will speak with husband over weekend and we have home visit from brain injury team monday to see elements of there support now.

I'm also going to ask for temporarily reduced hours at work monday.

I'm glad you made that step, so many people feel that it falls on their shoulders alone. The old adage, a problem shared..........all you needed was to talk. I'm well chuffed for you. And you still have loads of people here, just type, and I will respond, as others will.

Have a great weekend, take care, I hope you feel a little lighter x

Thank you pairofboots,x

Little rant but puzzled wow, today visit from BI OT, told I'm not putting enough hours in (I've reduced to 75hrs per week whilst working 37.5hrs juggling both), I need to structure my work so my husband can rest every one hour... REALLY. She came in blind, obvious she didnt read notes. I explained i asked today to reduce hours. She asked what support in place. I stated it's just me, this through her she couldnt figure out what to say and left a bit confused and reporting back to our usual person, her boss.

What she has suggested, will put us back 8 months, gone from low mood I need a break or reach out, to be told I'm not doing enough and change my hours permanently to provide more care. I have been on my own solo for 13mths and then given a random BI OT for that went panel summer 2020. I'm not taking my husband out enough,i work full time and use weekends accessing community but can only be short due to behaviour now lockdown ease and needs to be in morning before it gets busy.

Theres me reaching out with this autopilot phase burnt out and told it's not enough, I need to do more. No consideration on my wellbeing infact not important I need to do more. Every day I do rehabilitation, tasks put in practice.

When she left we went for walk to just walk it off took toddler to park in my working hours, my husband said I'm doing everything perfect for him but the nerve it of coming in and wagging her finger at me.

So I rang my husbands BI clinical psychologist he is arranging joint visit with BI OT as he agreed strategy and approach stated on mondays visit will not work with husbands behaviour, and he will give more information as she did come unprepared. So that sorted yesterday, however my clever GP who read my e consult form for appointment made a week ago decided to call during evening routine with toddler, time I called back 7:20pm surgery closed then text to say do e consult online form again. And sadly no change in my low mood.

My work has agreed to reduce my hours by nearly half but still working mon-fri for 6wks so in a way hoping this helps in balancing my thoughts, what to do, how to overcome,

It sounds like you are doing a great job under so much pressure, a 3yr old too!. Well done. My partner was notblike that, got angry and overwhelmed i think and weve split up. A friend of mine had her husband have a massive bleed about the same time as me. We spoke for ages on the phone the other day. And she expressed a lot of what you say, friends deserting them etc. But shes remained steadfast but has given up her career to support the family so lots of change. Anyway. I think it does get better its just painfully slow!. It sounds like you need an emotional outlet. I have changed hrough my abi. I was firrcely independent but have found support all over the place and used it. Some has remained but a lot of it was transitory eg random work colleagues, my physio, the lady at the gym etc, but all have helped get me back on track. Find some space for yourself unrelated to all thats going on at home, a social group, an old friend, a hobby, whatever give yourself a break. Good luck

So finally this morning I reached out to my local Headway.

I said about my husbands TBI no visits for first 10wks, home visits june to december, then back again end of april and I asked if there was any support groups I could attend. I mentioned I called Headway last month, and this is first actual reaching out for local support.

I was told only about enablement service, day centre for my husband and currently no support group due to restrictions. I explained situation with absent support with covid, and stated BI clinical psychologist and BI OT doing home joint visit this monday, to start properly on enablement.

Lady wanted to carry on to do referral on phone for husband, but due to how conversation went I asked for it to be emailed. I didnt mention I've been solely on my own with two children, no family or friends.

I just feel from conversation and what I asked didnt mean anything, I will let BI team do referral when required for husband as hes not ready at this stage .

It's good that you tried NB, I think that was quite a big hurdle for you, I'm so proud of you for trying, when you have so very much on your plate already.

I'm so sorry you didn't find it as helpful as you hoped - but it probably meant more than you thought from the call, given how they would have more real experience of brain injury than most people ever do in their lives.

When you get to go over the email just give it a little chance to try out what's on offer - and when groups start up, which hopefully won't be too long, the support from people that truly understand (like on here) will help you both.

Thinking of you carrying on being so brave and strong this weekend, love and prayers and a virtual hug for stepping towards the support you need and deserve xx

It was a big step reaching out, I know I can do now, but despite my military operation life it helped I did spure of the moment, out of character for me, but speaks for itself, I may do in future, but I know deep down we are another year away before stepping in as BI team introducing programme tomorrow relating to enablement, behaviour etc...

I haven't took husband out this weekend just me and kids, was really nice not being on constant alert we went book shop, got cards for sons teachers his final week (scary) and went to park, but this afternoon baked snacks cinnamon biscuits and flap jacks. I'm pausing on millionaire shortbread as husband wipes them clean in two days and weight still increasing, so once a month on his favourites (seems so cruel) I enjoy baking, I've always found it therapeutic glad its remained .

Next week going to a farm, be interesting taking husband, but he is motivated by food and gathering him duck eggs, so hope this helps managing any outbursts x

So glad you had a relaxed time out at the weekend.

Cooking helps me too, very therapeutic. I've only recently discovered batch cooking and freezing individual meals for myself - it's great, I can cook when my fatigue levels are good, and have something lovely for dinner in the freezer ready for bad days. I think the discovery of freezing individual iced cup cakes is a little less beneficial for my waistline, but I still think it's great though!

Hope the farm trip goes well for you today 🌸 x

So having BI clinical Psychologists do home visits June to December then bloody lockdown again BI OT came out end of April, then home visit this afternoon with both BI Clinical psychologists and OT, the outcome husband is not ready for OT, Clinical psychologists will continue then hoping July/August OT can join home visits for few sessions then start accessing community, so looking at around September/October time possibly

Feeling tearful and nauseous after todays meeting, to top off husband displayed behaviour, but on positive note first I seen him do in a nice way even clinical psychologists was impressed how he managed from observing on his previous visit.

Hope, just fading but I feel I really need to snap out of this low mood somehow to prove in my heart he can do this,.

Any advice please, headway only offering enablement day centre, which hes know where near to attend, I have no support networks, I'm struggling mentally and physically on my own with ferral toddler, stressed teenager, hes doing final exams this week and finishes school, I work to keep roof over heads, I've had to get huge loan to consolidate husbands debts now 15K, financially struggling but work so not entitled, I embed home rehabilitation every day to support husbands progression.

I dont know what to do

So today called my local Headway again, I can do referral I asked about whether I should ask for occupational health referral to allow to attend the support group, as meetings in working hours they are seeking advice on this so I should hear after bank holiday.

My work are being so difficult, manager with no savvy, winging her position, I reduced my hours, and after 4weeks and constant pressure from management for data performance I've yet to work the reduced hours and owed 13hours now, and to top off HR didnt put my much lower income so Universal Credit not detected much lower income, so now buggered. Very tearful today, just feel everything against me.

I'm actually thinking do we need to live in this country anymore, I could sell up as recently got house valued, no one would even notice anyway, been doing solo, absent services, stupid system that doesn't work, horrible employers, son now finished school this week, no family, no friends. No one physically around for 14months that has watched our lives to actually understand.

Hello New B, I am unable to help with what you are going through but just wanted to reach out from one tearful person to another today.

Hoping your day/week is ending a little better than it began. Today has been a very difficult & emotional for our family but our little Isla Rose gave us a beautiful beaming smile on FaceTime this evening which turned the day around for us - such is the total innocence of babies.

Big hug to you as you sound as if you need one & maybe an Isla Rose smile! Take care Nanapal. x

So this coming out of autopilot stage, been reflecting into it, i dont know if I'm mourning like a sense of loss. A sense of loss what my brain has been wired to since I fell in love with my husband and married to near 20yrs , the sense of loss how I thought our family would be like, a sense of loss what I thought our future would look like. A sense of loss of own identity, I say identity because I'm doubting why I'm on my own, why everyone walked away, why did I waste 20+years on friendship and totally didnt see they wouldn't hold me up or stand by side in such an awful circumstances; why didnt I see it, reflecting on my own judgement as I dont let anyone in, only trusted people, answers why took over a year to actually reach out. Why did family walk away and not support like normal families are suppose to do.

I dont know, is it A Sense of Loss. Because if that was said to me with no built relationship, I would get defensive and give many reasons to debate,but yet that's the nearest I can pinpoint this inner feeling again I dont know whether part of transition of accepting whether this is part of coming out of autopilot stage.

Referral with local Headway still waiting Finally went for bloods (over year late) b12 treatment plan arranged for Monday. I use to have injections every 2 days for 2wks, then redo few months, but too busy working/caring just didn't seem important in comparison over the past year with everything. Oh and BI team was meant to visit this week no show, no communication.

Lynd profile image
Lynd in reply to New_beginning

The sence of loss is huge. It takes a while to come to terms with it all. I haven't totally and it hurts sometimes.When my husband was in rehab I would wake every morning and have moments of panic, I started to call Samaritans every morning and it soothed me into the day.

They were a huge support.

With children it is hard to find time to do things for yourself. I hope you do find a little time though.

Try to cope with life on a day to day basis.

Don't look too far forward.

These early months are the hardest. X

New_beginning profile image
New_beginning in reply to Lynd

Thank you, for reassurance and it will sit with me this feeling for a long time maybe forever but hope it gives some respite. Last several months been tearful, but past 2weeks stopped and reflecting this sense of loss that came to me whilst reflecting

With future that is an area I'm trying to thread out but wired in pretty well, so again be a while.

Yes it is day by day, but I'm finding I'm in position to plan with 2 days now. Taking our toddler to soft play today out of county, just us two, working full time and main caring points afternoons/evening feel so guilt ridden with children isolated, sons 16th birthday next month so he will be treated soon x

Oh Nb, so sorry you feel alone, but you know we all root for you, and feel for you on here, and so will other people as you slowly meet new ones, hopefully some with support through Headway.

It's not at all the same as what you are living through, but I can remember these sorts of feelings after my husband left me after 24 years (many years ago). It's very hard to work through these feelings (many that come from awful grief for what you have all been going through) and these awful isolated times are still in the background as well - I think so many people are struggling too, for many different reasons.

Do you think you could talk your feelings through with the anonymous Samaritan call line - to get that feeling of support from someone listening to you, without the strain of making new connections, which you've found difficult?

Really well done for going for your bloods and restarting your treatment plan, it's very hard to care for yourself when things are beyond hard.

Be a little kind to yourself, and accept you've always done what was best based on the information you had at the time. No one can do more than that.

Please believe me that one day (but not now) you will be able to remember the friendship and love you had for twenty years, without the pain you have now - as I have, and that wonderful and good things will happen to you again, and I pray for that for you. I thought everything ended for me at that time when I was nearly 50, but then now, like tonight when I was holding my sleepy little grandaughter in my arms when she was getting ready for bed, I know that wonderful and magical things will still happen when we least expect it too, but we can't ever guess what form they will be in.

Life and you will change with what's happening to you now, because it is terribly traumatic - and in a lesser way I think people will generally, with what's happening with Covid too,

It's important not to shut people out though, because we never know where that helping hand, which starts that process of healing will come from.

Love and virtual hugs from me to you, as friends on here x

Thank you xx

I've joined Carers Uk, hoping to take part in cuppamarathon this sunday will get zoom set up hopefully husband can help not gone on to there forum yet. Going to be testing with Toddler unwell had to get carpol out, no change with husband no call or letter this week from BI Team. Going bed now at 9pm exhausting week, and going to be rough nights ahead 😒

Me and toddler joined CarersUk cuppa today, listened to orchestra and I bravely spoke of glimpse being a carer (I rambled though, not use talking about it) but not alone first time on zoom too, will look at there forum as some Mondays they do cuppa time.

twice profile image
twice in reply to New_beginning

That must have been difficult for you, one day in the future you will see how important today was for you to be able to do that

New_beginning profile image
New_beginning in reply to twice

I think this autopilot stage, reflecting may be part of reaching out and accepting my role now, im not sure still sussing, especially i set up twitter 😬 (again never done social media) totally out of character for me but i'm exploring organisations which i never knew existed .

Brave lady trying new things x

Well the time appears right now I've ordered two books on true life experiences What the Hell is Happening and Who cares. These books will be the start using my little down time in evenings in a meaningful manner when they arrive x

twice profile image
twice in reply to New_beginning

So pleased the time feels right for you , I guess you will find so many similarities to your own journey so far with these books and also lots of ways to help yourself . It's easy for people to comment on your situation but only you really know how you feel about your life being changed so dramatically. Best wishes to you and your family.

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