Help me! My partner suffered a bleed in his left frontal lobe in early December, he didn't live with me then and I found him slumped over the toilet when I popped round, concerned as he hadn't contacted me for 12 hours (very unusual). We have no idea what happened, there were no bruises from a fall and we are now stuck in the NHS merry-go-round trying to find a reason for the incident.
It gets even more complicated as in early January he was re-admitted to hospital with Pulmonary Emboli, and it was then discovered that he had a dislocated shoulder from the bleed on the brain, which hadn't been x-rayed or scanned despite my constant questions. It needs an operation, but no one will commit as he is on blood thinners from the Pulmonary Emboli and the longer they leave it the more complicated it will get.
I am basically at my wits end with everything. We go round and round at the hospital, getting called in at the last minute as a consultant has a cancellation. I am expected to leave my job at a moment's notice to take him for a scan or another test. He just sits and stares at the wall at home (he now lives with me as he is so apathetic and lethargic he wouldn't survive if left on his own) or offers to do a job, then fails to do it and gets grumpy when I start it. His recovery goes up and down, he is now complaining of stomach pains and hasn't eaten properly for nearly a week. He has also started to get tired, like exhausted, for example a week ago we walked the dog regularly for 3 or 4 miles a day, yesterday he struggled to walk half a mile without sitting down and resting. Today I have taken him to his office (he is self-employed) but I know he will just sit and do absolutely nothing. He hasn't washed for 3 days and keeps telling me he will do it tomorrow.
I am constantly 2 minutes away from losing my sh1t with him, which I know is very unfair, and with everyone else. I know he is lying to me about how he is feeling, what's going on and in general conversation as I have caught him out a number of times and he doesn't seem to understand that it's wrong or bothered that it upsets me.
His parents don't see a problem as they live about 100 miles away and he always manages to put on a good show when he talks on the phone to them. They came to see him in hospital three times in the 25 days he was in, in total, each time they created more problems than helping and now they expect me to drive him 2 hours to some National Trust property so they can see him.
I am literally at my wit's end. Please can I have some pointers about how to make life easier and some positive examples to give me hope that things will get better and I can have my partner back (there are flashes of the old person now and again, so I cling to those).
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katndog75
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In the typical way these things go, I've been to his office for lunch and he's improved considerably since this morning. Not a lot of work had been going on (actually none!), but he managed to look some stuff up on the internet for me and we talked technical internet related things (he's a computer repair expert). We have also had some good news in that the reviewing anaesthetist, neurologist and respiratory consultant have said the operation on his shoulder can go ahead and he can stop taking the blood thinners 48 hours before the op with no risk! There was a bit of a blip when he got his tablets all mixed up and thought he could stop taking all of them except the blood thinners but as I sort his tablets out a week at a time I can just remove the thinners when the time comes.
He also manged two satsumas and half a packet of mini-cheddars, not very nutritious, but at least it's food.
Things are sort of looking up and I know I've got to try and stop looking backwards and look to the future in the hope last week was just a little set-back. I also didn't want to lose my sh1t once during the hour I was there, if he could have moved his left arm I could nearly pretend it was how it was before the injury.
sounds like youve got it fairly easy. but lets start wit the blood thinners. im on clodipigrel, the last operation i had, i had to stop taking it for 10 days, my friend whos no doubt looking in, takes warfarin and i believe when she had to have an operation she had to stop taking it and take ( heparin ) instead?.
i had damage to my frontal lobe causing my wife to have a meltdown, the gp wanted to put me on anti depressants but i told him i wasnt depressed so i was referred to a psychiatrist, who ive been seeing ever since ( 7 years ). we also go to a loca lmonthly headways group.
my wife is brilliant with me, if she sees something that could make me blow, she distracts me by gently stroking my arm, which i find soothing, but if something annoys me when shes not there, i blow big time.
I am only seven months in as a carer to my Husband.
The key word is adjusting. If you take on the role of carer you constantly have to cope with behavior you don't understand. The various health appointments can drive you crazy.
We are constantly looking for the longed for improvements and cope with the loss of the person they once were.
However time does help. You gradually adjust your expectations and make new ones. Hopefully you will find you can still have fun together.
bollocks. my wife did not take on the role of carer, she is my support worker. she supports me in my daily tasks and encourages me to do as much for myself as i can.
im 7 years in, as a result of my early mood swings, my wife had a melt down, we went to the gps where she had another melt down. he wanted to put me on anti depressants, i told him what he could do with them because i wasnt depressed, so he referred to a psychiatrist and ive been seeing him ever since.
as for behaviour you dont understand, unless you have a tbi or a bi, you will never understand it and i hope you never have to understand the personal struggle we go through every day.
i worked as a carer in a home both for the elderly and and adults with learning disabilities before i climbed the ladder and we had to do everything for them, that is a carers role, doing everything a support workers role is to encourage the person to do as much for themselves as they are able to.
So sorry for all the difficulties you’re having. As other people have said, your first stop should be the Headway Help line. Also , ask your hospital to refer you to your community neuro team, they usually provide help via occupational therapy at home and can refer people to neuropsychology which can help as well. Wishing you good luck in getting appropriate care quickly.
Thank you all for your help. Yesterday and today have been much better. We saw the neurologist yesterday and she was incredibly pleased with his progress. I was shocked at how much of his brain the bleed covered, although he didn't seem too bothered, but he does bottle up his emotions as a result of his childhood. The neurologist mentioned the local brain injury team, but wasn't positive about us getting help partly as their funding has been cut so severely and also because she thought he would be classed as too well to receive help. I think I will take this as a good thing, even if we miss out on help now she will reconsider referring him at the follow-up appointment in 8 months.
Next I have to convince him to get removal men in to pack up his house and move it to mine, and then to remember that he made that decision when they start packing his stuff!
I KNOW that this is, going to sound, Really Stupid but.....Have you put this man, in your arms, hugged him and ACTUALLY told him that you Love/ Care for him. The poor man IS, as you said so yourself, LOST- yes completely lost. He simply doesn't, and probably- at this stage- CAN'T understand what has 'happened' to him. Your, no doubt, well intentioned 'Reminders' (the need to wash, eat, use the toilet? and so on) appear, to him anyway, as Nagging- for reasons he doesn't understand. If you want, this man, 'Back' to ANYTHING like what he was before, you need PATIENCE (and understanding) in Bucket Fulls.
As regards the, more physical problems, really you need Medical People to 'Step In' there. Yes some of us, probably could, offer Advice- based on our own experiences, I know that I could....but I WON'T. Not because I can't but because I SHOULDN'T, you need to get HIS Doctors to do this. In the first instance, Book yourselves a Joint appointment with you GP, yes you might get Resistance from the Receptionist- certainly at First. Simply, calmly, but Definitely (without being rude!) explain that you want to be seen TOGETHER. Having got, that far, take any and ALL the Paperwork, you have, regarding your Friend's Condition. Be prepared to answer so, pretty awkward, questions. Stick to you 'Guns' BUT in a Polite/ Caring way. Hopefully, little by little, the Doctor will Understand the situation. Having got, that far- hopefully anyway- you can ask, ASK mind, for your friend to be Referred to the 'Right Sort' of Care.
Have you heard of Headway, the 'Brain Injury Support' organisation? They do have a Presence, on these pages, look via the Home Page or 'View ALL Communities' on the My Hub tab (above). Headway are a National Organisation and, will therefore, have a 'Centre' in- or near- your county- the chances are it will be in one of the Major Towns/ Cities. There will also be, more local, 'Outreach Teams' operating across the whole area. You don't say were you live, so I can't be any more help Sorry. DO try the Headway Pages, on hear though. Other organisations include Stroke Support, The NHS, DSS and your Local Council- the latter might help Pay, for any 'adaptations' needed in the home (Grab Rails, Slopes instead of steps that Sort of 'thing').
Lastly I am sending, you BOTH, my Love & Prayers and hope that you DO find The Support, you BOTH need.
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