Hi this is my husband and my story

[Guest cdl]

On the 20th November 2006 I received a call from my brother in law, that Terry had had a minor mishap at work, he said that Terry had come off the back of his lorry at a delivery, in Harlow, Essex, and that there was nothing to worry about. I rang Terry upon hearing this and spoke to him, he said that he was fine but he needed some stitches and was going to the hospital shortly for this, I spoke to him at approx one o’clock. He mentioned at the time that it had happened whilst having to assist in a manual unloading operation?

Terry has recollection of how unloading is done at this premises having delivered there many, many times in the past. How ever to date, (I am putting my account to a dairy commencing today 24th December 2006) he has absolutely no recollection of the events leading up to the accident or getting to the hospital. Princess Alexander Hospital, Harlow.

My Daughter at approx 3.30 left a message on my voice mail at work to inform me that two police officers had gone to her house advising her to connect me as a matter of urgency and giving her a telephone number for me to ring regarding Terry. They advised her that if she was unable to contact me within the next half an hour, she was to ring as next of kin instead. I rang my brother in Law who was driving down to collect Terry’s wagon up from Harlow with the daughter of my Husbands Company; they had been notified that Terry wasn’t so good.

I got the call just before four o’clock and spoke with a Sister Birch, who advised me that Terry was in a critical condition and advising me to attend the hospital as Terry had suffered a life threatening set back. I said yes I would leave work immediately and make arrangements to travel down. I, we live in Wigan, Lancashire.

A work college, I don’t drive, offered to drive me home, as we were on our way the hospital rang me again, Sister Birch was asking about any medications or conditions which Terry was on or under treatment for. I advised her that he was on none, that many years ago he had had a touch of high blood pressure, but that had resolved itself and that an angiogram had cleared him of anything. That Terry was very fit we frequently when climbing and hill walking in North Wales, once or twice every month in fact. She then said that the doctor would like a quick word with me.

The Doctor told me that Terry had walked unaided into the accident & emergency Department. Presenting with a laceration on the back of his head, which they were going to stitch, but that whilst they were examining him that “he suffered a vacant moment†so it was decided to do a Cat Scan, however prior to or on upon doing this, Terry had a full seizure for which the doctor had to sedate, incubate and resuscitate him. He went onto say that the Scan had shown a basal fracture, frontal fracture and a major bleed called a Subanacroid Haematoma. That they had to send the scan to a specialist Nero Unit at Old Church, Essex. He said they didn’t know at this stage whether Terry would need to be transferred or operated on etc and that the hospital, would keep me informed.

By this time my daughter had arranged for her boyfriend to drive me down to Harlow if I could cover his diesel costs, it being late in the month, and he not due to be paid for another week.

The Hospital and Sister Joan Birch keeping me informed all the way, as the decision was not to move Terry at this time he would be staying at Harlow at the Princess Alexander Hospital until he stabilised, on the advice of Old Church. Just before nine o’clock Sister Birch rang me again to say that Terry had been moved onto a high dependency ward and I was to ask for Staff Nurse Wilson when I arrived at A & E.

Steven and I finally got to the Hospital at approx 11.45. I was taken straight up to HDU. There was my poor Terry wired up to all these machines and on oxygen with his face all swollen massive black panda eyes, blood residue round his nose. I like to think he knew I was there because he was a bit restless for a minute and made a snorty type sound. But that was it; there was no response to me squeezing his hand.

The ICU Doctor explained again what the hospital had said prior but also said that they were worried about orbital fractures which might need surgery if he was to come through this critical time, he also said that that had found a vf heart rate disturbance. That it was a significant brain injury that Terry had suffered an SAH and that he couldn’t tell me anymore, it was just a time thing now. I sat with terry all night only leaving him to see and speak with Ruth his boss’s daughter quickly in the morning; she had stayed in a hotel overnight. Steven slept in his car that night in the hospital car park.

Ruth told me that she had been to the delivery address and spoken with them there. She said that the warehouse man had not seen the accident only finding Terry getting up. Apparently there was still a pallet to be unloaded located at the edge of the lorry and the tail lift was on the floor, the company said they had left the scene as they had found it. Colin my brother in law continued with Terry remaining deliveries and has continued to drive Terry’s wagon since the accident. Ruth gave me £ 70 and said that they would pay him his basic until Christmas if needs be, before reviewing the situation. If I needed a hotel to stay in she would help out, just give her a call. And that was it, nothing else could be done now, Terry was in the best place and it was just a waiting game.

21st NovAll day Tuesday Terry was pretty much the same although not as deep asleep he was tossing and turning a lot more, but that was it. The Hospital arranged me temporary accommodation in one of their on call doctors rooms for two nights on the basis I would have to pay £15 a night and keep in touch with the accommodation manager in case it was needed for staff. Steven stayed until the Wednesday morning using his last two days of holiday entitlement of the year to stay with me and Terry.

22nd Nov Wednesday morning Terry had continued to make minor improvements and was beginning to have mini periods of time when if you asked him to open his eyes he would and I and the nurses would get one or two word responses. So at tea time Terry was taken off HDU and moved onto initially Lock Ward, still with drips and catheter in place. He stayed on Lock for a couple of hours before they were able to get him onto Penn Ward under the surgical team. Terry continued his painfully slowly returns to conciseness sleeping apart from five or ten minute intervals or so an hour until the following 28th Tuesday when he was alert and completely lucid for an hour, or so it seemed. 29th Wednesday he was drinking fluids himself properly from a beaker and taking an odd mouth full of food. But at dinner medication time he sat up and had a seizure which frightened all of us. But a patient opposite who had a bed similar to the one terry had had in HDU agreed to save time to swap. So the Nurses transferred Terry into this so that he did no longer have to get up from a prone position. By Wednesday evening terry was feeling better again and walked with help across the corridor to the bathroom, still very very dizzy. On Thursday he had managed to get the catheter taken out and I had helped him to shower, as he was still very dizzy. He still was eating a lot but was drinking a lot which he said was helping his headache. Walking smallest distances washing himself and feeding himself all be it with a lot of bullying from me. He would get very snappy and irritated by silly little things. I noticed that he was and is hard of hearing at times and the doctors said they would look to send him home for weekend as he was continuing to make a good recovery. That they would notify our doctors to follow up hearing tests etc., but that they didn’t feel that any rehabilitation so far from home would be beneficial. So he was released to our own doctor’s care. But that we will at some stage have to go to Old Church Hospital for his initial out patient’s appointment. The Max team had had another ct scan done and they said it was clear, so he wouldn’t need surgery. They told us that the headaches will get less, his tiredness and dizziness will get less same as his weakness and that he still had a few months to go but they thought he had made a really good recovery.

So on Saturday 2nd December I was able to get him home. Ruth had lent her father’s car (he was still in America) to Colin, Terry’s brother in law, after filling it up with fuel; they also paid him £100 to come down for us, the company also filled up Colin’s own personal car with fuel. Terry was fine in the car but when we stopped on the way, he was very very weak and I had to support him to walk, he was grey looking, and sweating, he said his headache was terrible still, and very dizzy with the really bad whooshing still going on with his ears. So although he still wouldn’t eat anything I managed to cohere him to have a warm milky drink and take his medications. It was very scary and he was so snappy and irritable still, but more than anything he looked just like a rabbit in a headlight, much more scared than I was. I just felt so helpless. When we got home and indoors, he would eat anything and just slept.

Sunday 3rd he was late getting up and I thought well they have said sleep is good for him and just give it time. When he did get up throughout the day & evening apart from not sweating and looking so grey, his mood swung from down right nasty and irritable to him completely ignoring me when he wasn’t watching the telly or sleeping. I still couldn’t get him to eat properly not even soup. And when a friend who popped round and my daughter he was as nice as pie to, but not me, it was and is as if he blames me. He was still complaining of his headache, getting little dizzy spells and his hearing loss seemed to fluctuate.

Monday 4th It was the same pattern, Terry was home, but it wasn’t Terry. I kept bursting into tears every time I went out of the room. It was just so hard to see this shell of a man.

Yes functioning on every level but not my Terry, just this Jeckle & Hyde caricature of him.

On Tuesday 5th December Jarred a good friend of ours came round to help me and Natasha take Terry for his appointment at our GP’s , check up, give them the discharge sheet from Harlow and arrange for Terry’s stitches from the laceration to be removed. I had arranged for an 11 o’clock time to give Terry chance to get him sorted in plenty of time. He was refusing to get up, swearing and being really nasty to me before Natasha and Jarred got to the house, than saying he wasn’t going anywhere until he’d been to the toilet, when they did get here. He sat on the toilet unable to go for an hour. We finally got him out and to the doctors for twenty past eleven. He looked just like he had on the service station when Colin drove us home from Harlow. Grey sweating, extremely weak and shaky. The Doctor took his blood pressure and pulses and said he was ringing for an ambulance Terry needed to go to the hospital immediately, he was extremely worried. Terry’s BP was dangerously low and he couldn’t find a steady pulse on either side. A conventional ambulance wasn’t available so they sent out the mountain rescue. We were in the doctor’s waiting room and there they were putting Terry on oxygen and putting in a drip needle it was completely unreal. Terry was agitated and angry at me and the doctor saying there was nothing wrong with him and yet chatting away like old friends to the mountain rescue team. Anyway they were equally worried by Terry condition although his BP had come up a little bit and they radioed for a congenital ambulance saying that an urgent heart monitor was required. So Natasha and Jerrad had gone on ahead to the Wigan Infirmary and I travelled in the ambulance with Terry. The Heart monitor showed distinct abnormalities the crew said and he was still on oxygen they didn’t like his colour and they said his blood was pumping right because when they pressed his finger nail it wasn’t right. So into A&E. Terry was taken straight into Resuscitation.

When I went into see him they had taken a x ray and blood tests and put a drip in, Terry was swearing at me, and some of the nurses and saying there was nothing wrong with him and they didn’t know what they were doing. But you could see he wasn’t well and they had shown me the readings in the ambulance I just felt so helpless. It was the same again Terry was fine was Jerrod and Tash but horrible and cruel to me, blaming me for everything that was happening to him.

At tea time he was admitted onto the observation ward. By seven o’clock they said his liver function test was abnormal, that it could be the phinetyn and amoridrone medications he was on from Harlow that were causing a problem, that they would consult with Hope Hospital and do more tests. They aren’t very forthcoming at Wigan Hospital so I came home terrified not knowing or understanding what had happened or what was going to happen.

They had moved him on to Ashley Ward later on that evening.

6th Dec Wednesday Natasha and went to see him at one o’clock visiting was 1-2 & 7-8 both times he was still irritable, angry and nasty with me and nice to OK with Tash. He was still not eating and saying there’s nothing wrong with me I want to go home. The Doctors had decided to change his medications which needed to be done gradually with one being for his epilepsy. And they wanted to do more bloods and tests on his liver. He was sleeping a lot and complaining that they weren’t giving him anything for his headaches. Plus they weren’t telling him anything. I had to go into work I had been off since the accident and as the job had originally work from home, a telesales appointment setting and research role I was hoping to be able to recommence work straight away from home. So that I could have the much needed income for now and the future. This was denied by my company and I was asked when I would envisage being able to resume my duties. We agreed for the 8th or 9th January as at that time Natasha would be able to help Terry if I was in work all day and effectively out of the house from 7.30 to 6.oo. Not a good idea with Terry’s mood swing caused a lot at times it was becoming clear that he would forget some things from even the day before that had been said or done. I was told that I would have to use some of next years holiday pay to cover some of the period and as I understood it lose a weeks pays as unpaid agreed absence.

7th Dec Thursday he was the same mood wise and every thing, saying he was going to discharge himself, they had done an ultrasound of his stomach and so they said he would have to wait for the results of that. He was still threatening to discharge himself.

8th Dec Friday Terry discharged himself today.

He is still very tired each day is getting dizzier every day. No let up on the headaches. Has weakness in his legs now too. We have not had any notification of any follow up appointments.

[rince]

Scary VERY scary, we all to a lesser degree understand how you feel. What is important is how he is going to get through this, do the medical "experts" agree on what has happened? Do they reccomend further treatment? If so my Neuro told me that I wasn't best placed to make any decsions in the weeks following my SAH, and as such my wife took over all of my legal requirements. If he does require medical care then at the extremes of what you can do is to get him sectioned for his own protection. Not quite so drastic is to get someone he "trusts" at this period of time to try and convince him to get the help he needs.

My heart goes out to you both.

Scott

[Karen]

Hi,

Scott has pretty much said everything in his reply to you. I'm so sorry to hear that Terry is taking out his frustrations on you. I think that we often hurt the one that we love, but hopefully it's only a temporary blip and Terry is just aiming all of his frustrations at you, probably through feeling fear about what's happened to him. However, it's not nice for you, when you also need support at this time.

I really hope that you will come back to us and let us know how you're coping at the minute and how Terry is getting on.

Thank you for sending in Terry's story and sending you a big hug!

Stay strong,

Love Karen x

[Annie]

Also, remember, that personality changes can be very much a part of brain injury. So the treatment you are receiving might be completely out of his control. I suspect that you will see improvement in that with his recovery. You've had a terrible time. I'm so sorry for your stress. Let us know when we can answer a question. We'll do our best with our various experiences.

Thinking of you,

Annie

[Louise]

Hi there

I think the other two have said it, its true what they say you do hurt the ones you love, frustration & not understanding just quite whats went on is a horrible place to be & thinking that you can rely on your family & they seem against you is so horrible I still remember that feeling it sends shivers up my spine but it gets better & I hope it will be soon.

You hang in there and take care of yourself.

bye just now.

Louise.x

[Guest cdl]

Hi there everybody

Thank you all so much for coming back to me. And thank you so so much for your comments, I have really felt like I have been going out of my mind at times.

I thought it was important to maybe give an insight into how people react when something like this happens. What I posted is part of a log I have been keeping. It has helped to have somewhere to vent my feelings. I have felt so guilty. Seems so unfair, the anger I have felt, when of course Terry is and has been so frightened and angry too.

But things have improved since New Year. He is still on a bit of a short fuse, but beganing to grasp what has happened. And I think some of the family are too begining to see how ill he is.

You've all spoken about people thinking well you look as if you're OK, what's the big deal?

He is still getting more or less constant headaches, he can't get up from the couch with out massive dizzyness and weakness in his legs. So he just sits down as much as possible. I have managed to take him out three times and within a hour he is on the point of colaspe.He struggles to walk across our living room without fighting for his balance. Yet the hospital said he had made a good recovery? This is the man who with our daughter , grandsons and I used to go to North Wales, once, twice a month rock climbing and hill walking.

He has lost over a stone in weight and looks grey all the time. He is eating but not what he used to do. Sometimes he says he doesn't enjoy eating anymore as it doesn't really taste of anything. He can't smell cooking smells when I'm cooking, is this right?

How can I push to get him some help and where, we have still not heard anything from the hospital.

[Karen]

Hi,

I'm glad that things have picked up with Terry. If you need help with rehab/therapy or anything else, go and see your GP. The GP is able to refer you to your local hospital for anything else that Terry may need. My GP has been great, but if you find that your's is not doing enough, then may be consider a change of GP's. I had to do this, as the initial GP just wasn't doing what he should have been, even though he was lovely with me. Since then, I have had regular blood tests, balance assessments (re:dizziness) at the hospital, physio with the brain injury dept. again at the local hospital. He also keeps a good eye on my mental health, which is just as important as the physical stuff. Depression and anxiety, post stroke is not uncommon.

Once you leave the hospital where you've been treated for the SAH, you tend to feel that you've been just left to get on with it and you don't know who to approach for help. It can feel like a very isolating and lonely time, but your GP is the person to go to.

I also suffer from dizziness and weakness in my legs......the weakness in my legs is normally worse if the dizziness is bad or if I'm tired. Terry probably finds this as well, but he's still at a very early stage of recovery and the fatigue will improve and he will start to feel stronger, therefore the physical stuff improves.

Recovery does take it's time and there doesn't seem to be a set time period for it. You really do have to take one day at a time, I think that it's easier mentally to cope with, if you don't look too far ahead.

I couldn't walk very far at all when I first came out of hospital, so somebody loaned me a wheelchair so at least I could do some walking with holding onto the wheelchair, but also being able to sit in it and be pushed when I couldn't manage anymore. I didn't like being in it, but at least I could get some fresh air and a change of scenery, which is so important for the spirit.

Re: losing your sense of taste/smell.....I can't help you with that one, as I didn't suffer that.......I'm pretty sure that Scott mentioned he's lost his sense of taste, so he's probably the best person to ask.

By the way, most of us lost a lot of weight after the SAH.....my appetite didn't pick up for about 3 months......unfortunately, I've stacked all the weight back on!

Anytime you feel like venting anything, go ahead here.......everybody's entitled to have a moan and groan......

Look after yourself as well,

Love K x

[Guest cdl]

Thank you so much again Karen.

That's so reassuring to both Terry and I, reading your experiences really helps us to understand what has and is happening. This is week eight and yes it prob is early days. Seems like a lifetime through.

Carol

X

[Karen]

http://www.srht.nhs.uk/patient--visitor ... emorrhage/

Forgot to say, that the above site is a good place to visit for general recovery information.

[Skippy]

Hey there

Glad to hear that Terry is making progress. I'm four month post SAH and it does feel like it was a lifetime ago, yet at the same time if feels like it was only yesterday.

I used to have a really short fuse before the SAH and find that now I don't like confrontation and I'm a lot more emotional than I used to be. And yes at the same time I'm very angry still about what happened. I know that I need to get past that anger and start focusing on the positive side of the whole thing.

It will take time and strength to get to the end of the road, but as one of my husbands football team said to me "Sami, its a long road to recovery but just remember, you're allowed to make as many pit stops as you like and need". Bless him, it put a smile on my face.

My best wishes and prayers are with you both.

Sami xxxx

[Annie]

I remember thinking that I'd never be any better. It really does seem like forever when you're suffering like that.

[rince]

Hi,

Yep I lost my sense of smell and taste, although we only found out almost a year post SAH. There are tests that can be done for this condition, and some times you can spontaneously regain it all! (I'm still waiting).

On the bright side I now eat stuff that I would never of imagined eating before, although the foods I really hated can only be stomached if I don't know what I'm eating! I have a "memory of taste" so if something looks good it tastes good, yes I can taste but not in any real way. Difficult to explain, not so bad to live with.

Scott