Latest blog from: hopegoesupanddown.blogspot.com - a record of the hope, terror and unknown future faced when the one you love most in the world suffers a brain injury.
I haven't blogged for a while because I was letting my reaction to some recent news sink in, feeling a bit confused and waiting to feel good about it. Last week saw some long awaited, news and steps forward in our civil case. That woman's insurers have finally accepted primary liability and are making an interim payment that will enable us to buy a bigger home.
So why do I feel so deflated?
I know that some reading this will be wondering what my problem is and rightly so. I get it; we are unbelievably lucky to be able to claim compensation and there are many, many people in our position who don't have that opportunity.
The problem is the wood and the fact that I can now see it for the trees. The last 18 months have been all about the fight; Jake's fight to live, the fight to get him the right treatment and funding, the fight to get justice, the fight to secure our financial future and, frankly, the fight to stay sane.
Today Jake is back at home, he has a phenomenal rehab package in place through the NHS, we have found a property that can accommodate our changed needs, we have a justice of sorts and I know we have a fabulous legal team who will make sure we are OK in the future. I don't have to fight anymore.
There is no doubt that this is a good thing and I am certainly battle weary and in need of a rest, but I miss the fight. The fight is absorbing, a distraction. Deep in the fury and adrenaline of battle you don't have to face the reality of right now and right now I am scared.
I am scared because I am having to face the future and even though I have known it would be tough, that knowledge was an abstract, amorphous thing that I was vaguely aware of. Now I am no longer in the fight reality has been brought into sharp relief.
This breaks my heart, because if it is hard for me, I cannot imagine what it is like for my Jake.
Last night I woke at around midnight to find Jake trying to get comfortable in soaking wet bedding having had a horrendous night sweat. With fresh sheets on the bed and a reassured Jake we both went back to sleep. An hour later Jake got up to go to the loo which wakes me as I need to put the light on for him as he is sight impaired and so unsteady on his feet. A few seconds later I realised that Jake was sleep walking again and going to the toilet in the hallway, waking up and realising as he was doing it. Can you imagine how mortified he was? Now imagine feeling like that and not being able to express it. Imagine that you are so dyspraxic that you are unable to help clean it up and will have to sit on the edge of the bed watching whilst your wife cleans up after you have already watched her get up in the night to change the bedding. Imagine your frontal lobe damage means you can't manage or control your feelings of shame and upset. Now imagine you don't really understand why you are no longer a capable, reliable husband and find yourself helpless, standing in your own urine unable to do anything about it. My imagination certainly didn't let me go back to sleep.
This makes me want to weep. I am SO angry that this has happened to him, to us. I want to sweep him up and transport him away from this reality. I want to take all of his pain and confusion away and would gladly swap places with him in a heartbeat.
So you see, I miss the fight, it was keeping my heart whole.
Written by
Dorsetcharlie
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Believe me you wont be missing the fight. This round may be over but the fight goes on. An epic battle lies ahead. Wish you every success in the next. Can I imagine how mortified he was? Oh yes, I did the very same but having taken a wrong turn exiting the bedroom was woken by my then stepson of six screaming as ... too much information! ( the scariest part of that is that that six year old boy is now 24 and I haven't a clue how, or where, he his.
Back on topic, please try not to be angry at anything to do with Jake's recovery process, it will make you very bitter, read this sfheart.com/desiderata.html it has been very influential to how I have grown and learned how to deal with many "issues."
Your heart will have to stay whole, and I am sure it will, and you will have to stay strong. Good luck!
An apology! I forgot to congratulate you on the good news, looking forward to hearing some more. Also, I have just read all those short sentences, added to that the missing closing bracket and can almost feel my English teachers ruler, or was it a slipper?
I am so sorry, I understand although my issues are not as profound as your husbands sound. I am a very intelligent, yes still am thankfully, just twelve months on from an abi, consequence of viral encephalitis, I am just so grateful it was me and not any members of my family. I get frustrated, can't find anything unless I put it away, have those night sweats, can't do a lot of everyday tasks, vision is affected, balance is shot but am being prepared for return to work by DWP even though I am now sixty (don't get my pension for two years, I'm female, could be male then I'd have a longer battle). Its all so exhausting. Thank goodness for the camaraderie of this site and the sense that is written. I wish everyone all the best with their lives for the future, just keep that sense of humour.x
Its incredible just how comprehensively it affects every aspect of your life isn't it? Make sure you appeal re: the DWP, if you're not sure how I know the Headway contact on this site has given advice about it before. Thank you for your support, C x
Charlie, what you have is special....empathy, compassion and selflessness but you seem very close to crossing the line, into desperation. Are you empathising to the point where you are BECOMING Jake ? Carers,it seems, need to step back from time to time to lick their wounds and summon further strength. Your post has really got to me and I fear you're overwrought and exhausted. Do you have any help on a personal level to keep you from straying to close to the edge ? x
Ha ha - Cat you are way too perceptive! I do have help, but reading your words makes me realise that I am losing myself to the trauma and drama and really need to step back. Thanks as ever for your insight and guidance. C x
aww charlie , 1st im so glad tht things r getting sorted fr u at last, and where u have fought all the way, and r now reilived a bit of the stress,uhave had time to think about whats happend,and r prob scared tht something else will go wrong ,it seemed to hit me all at the once the other week wat happend to me, but im glad now tht it hit me as its out n i feel better fr it . you r entitled to feel your emotions, anger, sadness as uve been holding onto them while fighting ,x
Hi dorsetcharlie, love reading your blogs, I can relate to alot of the things you say, myself and my partner are just beginning the fight you write about and any tips, help or info would be greatly appreciated. I now realise the nhs is not as straight forward as it first seems and you need to fight your partners corner constantly, I just dont know where to start. Good luck for your future, many people on the outside who dont know brain injury would feel sorry for you but I myself would love to be even close to the position you are in now...my partner is in a vegetative state and they have no idea if he will ever progress beyond that. best wishes to you both x
Obviously I dont know your circumstances, but when my husband has his SAH in October, all the neuro's kept telling us the outlook was very "bleak" and that we should not hold out too much hope. He was unconscous for about 2 or 3 weeks, but then very gradually he came out of it. Now, 6 months on, his mind and memory are very nearly 100% as before, he has a lot of left sides weakness, his mobility is very slow, but improving all the time, and his left arm and hand is even slower, but there is hope there too. Sadly he has had a number of other problems since, but from being told not to hold out any hope, to having him as he is now, hopefully gives you some hope too. Miracles do happen xx
Charlie, you are bound to have a meltdown every now and then, who wouldn't in such a situation, but you sound like a very strong person and a fighter. Remember everyone is here for you if you need moral support x
What a sad story! I feel for you so much. My husband had his SAH in October last year, home in February, and since then it has been one thing after another, meaning 999 calls in the night after high temps due to infections, a seizure on Good Friday, a kidney stone blockage in the last couple of weeks, so an op to remove that, and now he awaiting a gastroscopy this morning as he was projectile vomiting on Weds, and they fear a bleed in his stomach. Add to that the blood clots in his lungs, and the need for warfarin and it has been a nightmare.
But I so understand your feelings. Whilst Steve was in hospital for almost 4 months, it was the hoping and praying, the hospital visiting, the sorting out of the DL:A, the finding out about what help we could get etc. etc. that kept me going.
When he finally came home in February, I thought that would be the start of good things, improvements in his mobility etc, and getting back to some kind of normality.
But all of the other things that have happened since, have turned me into a nervous wreck, scared of another seizure happening, scared of another infection giving him a high temp, scared of yet another visit to A & E (the worst experiences ever) and scared of what the future holds.
I love my husband so much, but I start to realise I love the husband he was more than the one he is now, and that I have to learn to love this new one, starting from scratch again.
I feel very lost and alone, even though friends and family have been so supportive, its me who is here alone every night, while he is in hospital. Or alone with him waiting for the next dilemma to happen.
I send you my sincere best wishes, all the money in the world cannot give you back what you had. And that is so hard to bear. xx
I know exactly what you mean about the fear - the anticipation is often worse than the reality! I also know what you mean about having to learn to love a new husband which made so much harder by how much your roles have changed. If you think about it we should be really proud of our resolution, strength, love and commitment. C xxx
Absolutely, but sometimes I feel so much guilt for getting cross with him, being fed up, feeling down, crying, wishing all this had never happened, and wanting our old life back. I lost my first husband nearly 20 years ago, he was awaiting a lung transplant. When I found Steve I couldnt believe how lucky I had been, and now all this. So hard to be positive sometimes, but I am, and I have to believe things WILL get better. As you say, knowing so many other people out there understand is such a great comfort. xx
Charlie I was so lucky to meet a member of my wife's rehab team Steve Jones , I think he saved my sanity .I had several meetings with Steve and he said one of the best tools at my disposal was humour , slowly the minds washing machine goes back to its normal cycle and the fast spin stops ,The next step is taking control of your life again, it has taken a few years but the struggle has been well worth it. I used to find an Indian head massage turned the fast spin to a slow cycle . all the best in the future hope this helps.
I love an indian head massage - that's my kind of advice! I too have met some amazing people on Jake's team and they save my life on a daily basis. C xxx
It is so important to take some time for yourself , We are lucky as to get two days a week help from a carer ,so I get ME time, I can't stress this enough ,the main carer must get away even for half a day at the spa or sailing - cycling- sky diving I think you get the general idea.
It is so true what charlie has said about being proud of your love and commitment. charlie, millie, Molly, vanman and all others out there caring for loved ones-----my heart goes out to all of you.
Charlie, congrats on yur sucsess, it sems you are a wonderful partner to have in this situation, you have a very lucky man.
i just read your blog on your link..really good,that comment was right,about uplifting..sometimes i read these blogs,and and am not sure what to say,(wish they had a like button,cos by time i have thought of something it is already written,this stumps me) .anyway.. your love shines through that is for sure;}
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I still get moments of frustration with my friends TBI after 2yrs 8 months.
Long distance social worker appointment?
Waiting and Desperation..
A note for future...futures
