Sleep and exhaustion are pulling kp down and I fear the start of a downward spiral, but the week wasn’t without a few good moments.

Monday was uneventful. kp most definitely needed a day like today.
Tuesday and Doreen took kp to Whickham Villa where they had a bit of a pamper day, with some physio mixed in. Steve (physio) met them there and they went into the gym and did all the Steve stuff out of the water and with Steve they then went into the hydropool and did a variety of exercises. Then it was relaxation and pamper time. Karen went into the flotation device. From kp’s description, it wasn’t like your normal flotation device where you get in an enclosed pod. This was more-suited for rehab patients. kp was winched in. And then they turned some heat lamps on that heated kp from above. They then left her on her own. The idea being that you don’t have ANY stimulation, no light, no sense of hot/cold, no noise etc…. Karen really enjoyed it and bizarrely didn’t fall asleep (not sure I fully believe that one). The girls then had their nails done. It was a lovely day overall. They were certainly there most of the day, and they didn’t come back until after I had got back from work (approx 6.30pm)

Wednesday – Rachel (OT) came and brought a box of stuff for hand movements, rice, elastic bands, playdoh, etc…She showed Doreen and kp some warm-up exercises, and left them with the suggestion of making a schedule up. Doreen had the afternoon off as Angela (fellow car crash victim) was visiting. Lots of catching up to do as it had been a while since they had last met and again they were still in full gossip mode when I returned from work.

As I am writing this, it is dawning on me that I am not writing down Karen’s lack of sleep. I started to record (ages ago) kp’s sleep patterns, but I have fallen out of the habit. But, suffice to say, that a typical night’s sleep is as follows :-

11pm – kp to bed (with dp)
12am – kp up, stlll tired, but unable to sleep.

5am – kp comes to bed and sleeps until
6.30am

6.30am – dp gets up to watch some tv and have breakfast, kp gets up to have a cup of tea
6.45am/7am – kp goes back to sleep when I go to work and sleeps until about 9/9.30am and is then up for the whole day

Not good – in fact, I am really worrying about kp now, but I’ll go more into that later.

Thursday saw kp and Doreen go to a place suggested by Rachel (OT) to look at bath aids. I think they found a much better (and safer) way of getting kp in the bath. Currently, I lower her in which isn’t so bad, but then I lift her out and it absolutely knacks me in. But, the old chair we had left kp 6 inches out of the bath (small exaggeration !)

Friday and the physio session was at Seaham leisure centre. The last visit to Seaham Leisure centre had been a bit of a debacle. I am pleased to report it was much improved with Steve having a room booked with the relevant kit.

Saturday and Sunday have been a bit dire. Normally, we go for dog walks and do something together, but this week kp has been exhausted. She just wanted to stay around the house. I went out with Dave (diving buddy) to get some diving gear at a dive shop in Whitley Bay on Saturday. I left the shop over £800 worse off (and that’s after discount) – YIKES ! Why ? Because I am going t’Egypt in a week’s time aboard a liveaboard boat for a week to do some diving in the Red Sea with Dave – can’t wait. Ronnie is kindly staying with kp for a week and I believe Jane is coming over as well, so some MAJOR girl’s talk (or surgery) as they call it will be going on.

For kp, saturday and sunday have seen kp sleep most of the day with the usual treacherous night’s sleep. I wrote the following email to Syd today in the hope that something can be done about various things….

Syd

I hope this email finds you well.

I am writing about Karen. I am concerned.

I think she is starting a bit of a downward slip and I think we have the chance to nip it in the bud. Karen doesn’t know I am writing this email.

Tiredness – Karen is struggling with exhaustion at the moment. She is probably only getting 2 to 3 hours sleep per night, despite all the work she is doing with Doreen, Matt, Rachel, Steve etc….This is affecting a number of things ……

1. Her mental state (and this is the most worrying). I feel she is on the verge of a downward spiral unless we nip it in the bud.
2. Her speed of thinking – I am finding that on the evenings (with me), Karen is getting increasingly slower in conversation and although (since the accident) I have always had to pause and resume tv programs to explain the storyline and what’s happened, this is most definitely on the up. Obviously, this IS NOT a problem to me, but it’s a sign about kp’s mental health.
3. Her zest for life is definitely on the wane. Before, she would be looking forward to doing things on the weekend (with me) ie visiting family, going out – walking the dogs etc…..I am finding she just wants to stay around the house – this maybe just her way of recovering from a week of activities, but it’s not a move in the right direction (from my perspective).

Another area of concern (after discussion with kp) is (certain specialist (name deleted)). I don’t feel Karen is “connecting” with her. Karen thinks she is good at her job, but when kp used to leave Pip’s sessions, she was, without exception, positive and had a new lease of life. Karen has said she should give her another session or 2 to give her chance to win through, but I don’t get a good gut feeling.

For the first time, at about 5am this morning, kp said she just wanted all the rehab to end and for people to accept how she is. This is very out of character for kp as she is biggest fighter I know, but it’s another example of how exhaustion is pulling her down.

So, way forward – well, I think you’re the expert Syd and would welcome your comments, but my gut is the following……

1. Crack the sleeping problem (easier said than done I know)
2. Get Pip back on the case (losing (certain specialist))

Now, I know kp won’t necessarily agree on point 2. But, I am just telling you my opinion on the right way forward.

I do think there is a little time to stop a big fall in kp’s mental state, but we’re not talking months, more, weeks to sort it out.

I feel better for sharing my concerns, but we need action to prevent major issues.

dp

PS – tamazepam – for the past 8 weeks or so, we have been getting kp weaned off Tamazepam (sleeping tablet). It’s going really well. She was on 2 x 20mg a night sometimes 3. By reducing them 1/4 of a tablet per week, she is now down to half a tablet a night. Karen occasionally takes more, but only on a sporadic basis, when she is absolutely desperate for sleep. I know it’s easy to say that this is why her sleep is worse, but the sleeping problems were there before we started the gradual reduction.

So, not the best of weeks. Here are some photos (courtesy of Dave (diving buddy))……

Here is a shot of the hotel….We were in one of the groundfloor apartments in the distance.

Here is a picture of kp, me and Helen. This was taken on the last day at a restaurant by the sea.

Here is a picture taken when Dave and I were diving. In the background, you can see one of the beautiful, but designed by the devil, Sea Urchins. This is the thing that I put my finger on and got some sea urchin lodged in my finger and couldn’t get it out. PLUS in the foreground a spider crab which crawled on my hand on a previous dive.

Here is a picture of Brad Pitt, or is it me…..

Here is an angel shark. Dave was in front of this and due to some unfortunate timing he missed the full frontal picture of it swimming towards him, but managed this one of him getting away.

Here is a picture of a cuttlefish. This is the one that moves itself along by moving it’s skirt like a snake.

One of David’s best pictures of the holiday. A close-up of a Moray Eel.

All the above pictures are copyrighted to David Kingdon.

Well, not a good start to the week.

A mid-week blog entry is testament to that !

Monday was physio, nothing too out of the ordinary there.

Tuesday saw us go to an appointment with Mr Tulloch. He is an orthopedic medico-legal expert for the other side. He was a lovely man and made kp feel very at ease. He started with loads of questions about how the accident happened, how she ended up in the hospital for a hip replacement etc etc….. And then an examination, where he moved all her limbs into weird and wonderful positions.

We also went to see Margaret, Tracey, Mark, Megan and Thomas as they were up from Southampton. It was lovely to catch up with them – shame we didn’t have more time.

Thanks for a lovely meal Marge !

Here are some photos taken with them…….

Here are Mark, Megan and Cherry…..

PICTURE TO FOLLOW

Here are Thomas and Tracey (taken by Megan !!)

PICTURE TO FOLLOW

The big news of the week is last night. Karen was fine at the start of the day. She did some physio with Steve and Doreen – in the form of marching up and down the hall. All fine !

She sat down for a cup of tea with Doreen and a while later, she couldn’t get up without a lot of pain – more worryingly, she couldn’t walk !! She rang me at work, and was resigned to see if it improved later in the day.

When I got home, she could still hardly walk. We decided to see if a bath would help. Go back in time to Feb 07 and this is exactly what we did when the hip went last time, but sometimes this does help and she gets out of the bath feeling a little better.

We struggled to get her in the bath and struggled even more to get her out. It was time to go to the hospital. These are the worst times. Your brain goes into overdrive. kp is desperately trying to avoid another stay in hospital, I don’t want to be the permanent visitor again. Horrid thoughts.

Typical kp – she did some “walking” (!!!!!) after the bath and…..

kp:- I think it’s alright you know !

She was basically hopping from her left foot to her left foot, tenderly putting her right foot down for less than a 1/10th of a second.

I persuaded her to go to hospital. She knew in her heart it was the right thing to do.

So, by 7.15 pm we were at the hospital. The usual long waits. After about 2 hours, she was put on a bed and promptly fell asleep. (no pain when she wasn’t weight bearing).

Here is kp in a moment of pain…..(not intentionally took at that moment, I hasten to add)

PICTURE TO FOLLOW

Eventually, she was seen by a doctor and sent for an x-ray. They took about 4 of them and after an anxious wait, the doctor came in to explain, to our GREAT relief, that the hip was still fine, as was the pelvis.

Apparently, the pain was probably caused by some piece of bone chipping off either the pelvis or the hip and is to be expected because of all the injuries kp had.

We were SO relieved. We were convinced she was staying in.

When we got home, we had a cup of tea and went to bed. kp took some more top-up morphine tablets. She must have been in a lot of pain, because she took a 50mg morphine, when she normally takes 10mg.

She didn’t have a good night. I insisted she wear the emergency button if she got up in the night, because if she fell, I wouldn’t wake up (heavy sleeper). I think she wore it, ‘cos it wasn’t where I left it.

So eventful start to the week. She is very muggy today (the morphine no doubt) and she says the pain is a little better. Looking forward to getting home to see for myself.

Well, I am very relieved to report that Karen is back to her old self again. Very strange that episode and I hope it doesn’t repeat itself.

Sleeping still to pot, but she seems to have got in a routine that suits. She stays up all night until 6am and comes to bed until about 9.30am/10am (depending on what time her day starts (ie when Doreen arrives)).

Today (Saturday), we went for a nice walk with the dogs. She has been practicing marching and did a bit on the walk today, but finds it quite tiring.

Tomorrow, I am going diving in Egypt with Dave for a week.

Karen has the girls coming up (Jane and Ronnie). She got a bit tearful in the week at the thought of a week of company. It’s nothing personal girls, I think it was exhaustion-driven and the thought of not being able to sleep when she needs it.She’s looking forward to it now.

I have had to leave instructions on how to work the dvd player, but apart from that I think she should be ok.

In the words of Peter Kay….

I’ve…..

“Booked it, Packed it, F+cked off”

Miss you love !

dp

xxxxx

All of these photos are courtesy (and copyrighted to) David Kingdon.

There may be more in time, but these are the ones he thought may be of interest for the blog. There will be a normal blog entry this weekend to summarise the last 2 weeks for kp.

I had an awesome holiday with a great Dive Buddy in Dave (who took these photos)….Here is the boat (middle one) – The SnapDragon….

Here is me partying with the crew on the last night….

This next one is a picture taken of the gun of the Thistlegorm wreck.

The Thistlegorm was a large boat carrying supplies to the English Army. It was carrying 20+ BSA Meteor motorbikes, 2 steam trains, lots of flatbed lorries when it was blown up by the Germans. This is a picture of the gun of the Thistlegorm. What’s not clear from this photo is that the gun is actually at an angle of about 45′ pointing towards the seabed and David was about 8m underneath the gun when he took this photo.

You can just picture me on the left hand side, pretending to fire the gun.

Here is me looking at some little fishes….

Here is one of a large Moray Eel. When this was taken, we were the last ones out of the water, so we thought we had found it and were dead chuffed. They can be quite dangerous, so you can see a bit of fear in my eyes and a bit of caginess in my posture……Little did we know that this was a friendly (to divers) Moray Eel… and that the Dive Guide had been showing others how to stroke it.

Apparently, it reacted like a dog being stroked…..

Here is a nice one of a Bur Fish (type of Puffer I think)…. About the size of a large shoebox…..

And my personal favourite moment of the dive….was swimming with this turtle…who wasn’t phased at all by me being within a 1m of him…..

Today is the 3 year anniversary since the accident !

Yikes !

Well, bit of a gap in the blog, because of my Red Sea diving trip.

Jane and Ronnie spent the week with Karen. Thanks girls.

Karen thought they may be watching a DVD while I was away, but unfortunately we don’t have a DVD player in the front room, we just use the xbox to play dvds. Not a problem when I am there, ‘cos I always control it. But, the girls wouldn’t have a clue how to do it on the xbox.

So, I had to leave “step-by-step” instructions because there was no way kp could take in all of this…..

They had a great week.I had an awesome diving trip.

Here are a couple more photos…..

Here is one of the VERY few photos of my dive buddy Dave (left).

Mahmood is the youngest of the crew (right), and if we kept him supplied with fags, he’d make sure we had 10% more air (220 bar).

On one of the days, we visited an island in the middle of the Red Sea (totally deserted).

On it, there was a Sea Eagle’s nest. As we approached the nest, the Sea Eagle flew up and went up and down the coastline, until we retreated back. Here’s what he was protecting…..2 Baby Sea Eagle chicks…..They didn’t fly off, probably because they hadn’t fledged yet, but they knew exactly how to “play dead”….

Here is a picture from our boat (SnapDragon), of 2 dolphins swimming within 20m of the boat. As with all photos, clicking on them instantly makes them “Go Large”.

Another one of me, but this time with some small fish and some fire coral. The white tips (if you touch them) give you a nasty rash.

I think this is at the Thistlegorm – me putting my head through a porthole….

This is the Thistlegorm again. It had 2 steam trains on the deck and with the force of the explosion they were thrown 20m off the deck.

Nice sunset….

Octopus with good camouflage…..

Me posing again……

This is a stonefish. The most deadliest fish on the planet. You really don’t want to step on one of these or touch one. The pain (en route to death) is supposed to be unimaginable. The trouble is their camouflage is so amazing they are VERY hard to spot.

I texted Karen 2 or 3 times a day while I was away and rang her whenever the signal would allow, but it was still great to be back with her.

We are so rarely apart nowadays that missing each other happens so quickly. It’s a shame she couldn’t come, but although there were quite a few calm days where she would have been fine(ish), there were also some less calm days where she wouldn’t have been able to walk at all without falling over. There was one particularly rough day where noone could walk at all. We were being tossed everywhere. You had to crawl on all fours, and going down the “near vertical” steps between decks, was very treacherous.

Back to “real life” now…..

This last week saw everything return to “normality”.

Few tears, and tiredness remains the predominant issue.

I had took the monday off, ‘cos I didn’t get back until about 2am on the monday morning.

The first day back was pretty much filled with sleep and catching up with kp.

Tuesday, I was on a course, but could only attend for the morning, as we had the MDT meeting. (multi-disciplinary team meeting). This was one of the ones where the solicitors didn’t come. They had a name for it (something like therapeutic). It was good to get everyone’s input.

Present were Steve (physio), Rachel (OT), Ann (NP), Doreen, Syd, kp and me. Basically, they go round the table and everyone goes through how Karen is doing.

She has done so well since this rehab period started.

Steve said that initially she had scored 48/56 on some balance scale and that she was now a 56/56 !!! Big improvement. He has to now move her to a different scale to measure balance and warned her not to expect a good score initially.

Rachel also complimented kp on her commitment and progress. She had some scales that she measured kp on and there was improvement again !!!

Ann (neuro-psychologist) hadn’t completed the assessments yet, because every time kp had attended, they had HAD to refocus on to getting kp’s mood up, as she often got upset at the sessions. She is going to try and complete the assessments over the next few sessions.

Syd agreed that she had made great progress.

He also mentioned that he had bought Karen a Wii-Fit. It’s a nintendo wii with sort of a weighing mat, but it has LOADS of super things for Karen to help her improve her balance. I am really pleased at this, because I think kp will REALLY enjoy it, and it’s something we can do together !!

The following day, we had to go and see Mr Wilkinson.

Long story short….. We saw our GP a few months back about Karen’s pain. It was getting bad for kp.

Let’s say she was on 400mg Fentanyl per day (the maximum allowed), we had nowhere to go with the pain and referred us on to Mr Khalil (pain consultant specialist). He agreed she was on the max dosage of Fentanyl (morphine patch) and suggested Dorsal Columm Stimuation and referred us on to Mr Eldabe who recommended Intrathecal Drug Delivery. Our local GP said he would put her up to 600mg Fentanyl as there was a more long term solution on the horizon.

ok…..bearing all that in mind……

Our solicitor approached “the other side”’s solicitor to seek funding for this expensive intrathecal drug delivery. They looked into it with their medico-legal people and came back and said “we want to be sure that this is the right move” because of the costs and also the fact, it involved surgery again for kp.

Would we mind getting a second opinion ?

Well, we didn’t mind at all. kp didn’t really want this solution anyway and would have preferred the Dorsal Column Stimulation (which still required surgery, but wasn’t reliant on morphine etc….)

So, Mr Wilkinson was the second opinion. Nice bloke. He asked us LOADS of questions and in the end he couldn’t decide which way to go. He summed it up as follows……

With the status quo, the pain is under control, but with the 600mg Fentanyl, kp is well over the maximum dose and risks damage to the Endocrine system, plus she has to struggle on with all the bowel issues from such high doses of Fentanyl.

On the other side, if she went down the Intrathecal Drug Delivery route, she runs the risk of Meningitis (the spinal cord sac thing can get infected apparently), and she would have to go to the hospital every 4-8 weeks to get the pump refilled.

The bowels would probably be much improved.

Rock and Hard Place.

He really couldn’t decide the best route to take and asked us what we thought and he would be guided by the patient’s opinion. We didn’t know either way.

So, we were left in limbo land. He said he would do some thinking after we had left and write a response.

So….. ??????

At one point, he said to Karen (and I could have hit him !)…..

Mr Wilkinson :- “There isn’t really anywhere we can go with your pain relief”.

At this point, I could see Karen well up, but she managed to keep the tears at bay !!! Well done love !

It bugs me when things like this happen…..

That is “BIG NEWS” to anyone on maximum pain relief and it just slipped out. Grrrr !!

Karen kept asking him questions from a patient’s perspective (good on ya kp), but Mr Wilkinson had to keep saying that he is not seeing her on a consultant basis, but from a medico-legal perspective and so he couldn’t really go down that route of questionning. Basically, he was saying, I have been told to give my professional opinion to “the other side’s” solicitor about what I think is the best course of action for pain relief.

kp didn’t really get this

The tears started rolling whilst we were on our way back home. She had latched on to some of his comments and she got upset that there may be nowhere to go for the pain relief etc etc…..

Very sad. Hearing something like this has a knock-on effect on lots of other thought processes for kp and the rest of the week saw kp very subdued.

kp wasn’t her full self.

On the friday night, Ethan came over, and then an hour after he arrived, he wanted to go back to his mum. He’s 10 and wasn’t feeling very well, so I took him home.

Yesterday, we went to see Marie’s new dog “Strike”.

Gorgeous lurcher – lovely nature.Here he is……

That’s it for this last week. I hope Karen’s mood improves. She is seeing Ann (the NP) this week. So it really could go either way !!!

A truly awful week. Karen has been sooooo low. It all started on the Sunday night, although if I am honest, it probably started a few months ago but kp has been putting on a brave face since then. kp’s mood had been low for a while, and we were talking about it. She was concerned that her low mood brought me down too. Well, of course it does,  but I tried my best to explain that this wasn’t her fault and that when you’re married, you share the highs and lows together. That’s what marriage is all about. I also explained that it would be the same if roles were reversed. But, she bears an enormous amount of guilt over the fact (in her eyes), she is “bringing me down”. Discussions, later in the week, veered more towards the fact she wanted me to leave her. Obviously, when she says these kinds of things, there are floods of accompanying tears. I keep reassuring her that I WILL NOT be leaving her and that I love her, but she only sees the negatives and reads things into the situation. All part of the depression (according to the experts).

The Sunday night saw Karen so desperate to “GET OUT OF IT” that she was going to take 6 x 20mg Tamazepam. A normal dose is 10mg. kp normally takes 10 or 20mg, 40mg MAX, but never 120mg !!! Thankfully, we stopped that from happening, but things are that bad at the moment. The Sunday night was awful, and we were up until the wee hours. I had told her I wouldn’t be going to work tomorrow (monday) and that we would get the right help in place !! I was that desperate to get help for her, I called everyone under the sun, Syd (Case Manager), Ann (NP) and I even played the Joker and called our usual Saviour in these circumstances (Pip) but unfortunately, I couldn’t get hold of her.

In the morning, Rachel (the OT) came and a lady arrived to demo a Bath Bubble. It’s a bag of air that kp sits on and lowers her into the bath. It was quite nifty.

After that, we were already due to have an appointment with the neuropsychologist (NP) Ann in the afternoon, so we attended that. There were lots of tears. Ann feels that kp has some of the symptoms of Post Traumatic Stress Disorder and that she needs specialist help for this. As soon as she has completed her assessments, she has referred us on to a specialist in this area. The sooner this happens the better. Ann pressed ahead and we did all these cognitive-type tests. We didn’t really learn anything new, but Ann confirmed that kp suffers from a variety of cognitive issues, spatial awareness, poor working memory, etc etc…..

With the tests done, we headed home where Syd was waiting for us. He had kindly come up at short notice given kp’s mindset. He had some cracking things to say, and kp DID listen intently, but with depression, I know from experience, that you just see the negative in things and thus it was for kp.

The week generally has been full of tears. At one point, kp was desperate for me to “have a good life” and leave her. At another, she was desperately sad at the thought of losing me and that I would want to leave her. Of course, I do my best to persuade her that I love her SO MUCH, and I think she knows it deep down, but at the same time she still thinks I am going to leave. I AM NOT GOING TO LEAVE YOU LOVE, EVER !!! Until Death Do Us Part ! xxxxx

So, without harping on about a real bad week. here is the rest of the week….

Tuesday, Syd was back again to meet with kp and Social Services who were visiting for a review. He brought with him the Wii-Fit.

Wednesday -  Sue Brady (ex work colleague) was due to visit kp at home, but kp had been out with Doreen to try and lift her mood and had to come home early, ‘cos she felt sick. So she had to postpone Sue. I think this is the 2nd or 3rd time she has had to postpone Sue. Nothing personal Sue, I know she is keen for a catchup !

Thursday – Syd had told kp to push on with the rehab programme. To say kp’s heart isn’t in it is an understatement, but I don’t think it has been in it for a month or so, yet she has still given it 110%. So, she carried on with the physio session with Steve. I think they did some Wii-Fit stuff.

Friday – Doreen came and did some gardening with kp. Together they did an absolutely marvellous job of the back yard. Not a weed in site.

Saturday – kp didn’t want to be awake at all.

kp:- I’d rather be dead

So, she slept (with me) most of the day.

Sunday – we were due to lunch with Dave and Helen, but kp wasn’t up for it, so we had to postpone that too.

Last night, we had a REALLY good talk in bed. I was on fire and really felt like I had said all the right things. It went something like this…..

dp:- You’ve come out of depression before love.
kp:- Have I ? When ?
dp:- Well…….Remember when your mam died, that was an absolutely awful time and it felt like you would never get over that. If I had asked you at the time, that your feelings would lift, you would have said they wouldn’t. But, time is a great healer and eventually they did lift, didn’t they ?
kp:- yes
dp:- Do you remember when we couldn’t have kids, and we did the Adoption thing and we got approved and then had to pick kids to adopt. And then we said we couldn’t go through with it. You had a bit of a breakdown then and you were really depressed, weren’t you ?
kp:- yes
dp:- But, you came out of that then didn’t you ?
kp:- yes
dp:- Do you know what ?
kp:- What ?
dp:- I think I know what the key is to lifting your mood.
kp:- What ?
dp:- I think you need to accept what has happened and then you’ll be able to move on.
kp:- What do you mean ?
dp:- Well, when your mam died, you didn’t accept that she had died for a LONG time, did you ?
kp:- No
dp:- But, eventually, you did accept it, and that’s when you could handle living with it, couldn’t you
kp:- Yes
dp:- Same with the Adoption

dp:- And I think it is the same with this, love. You need to accept that you have had a car accident. And yes, you do have some injuries from that that are still affecting your life. Your head injury does make you a bit slower. The pelvis injury does make it harder to walk etc etc…….But you can still do so much. You CAN still walk around the house and outside. You can still talk with friends and have good conversations, you can still go on holiday, there is SO much you can do. So, i think the key is to accept what has happened and then move on.

I was really pleased with myself, because it made so much sense to me and it had all unravelled in my head as I was speaking it. kp was less than enthusiastic, but with kp, things take time to sink in, so fingers crossed, I may have started a chain of thought processes off….

And finally….

I had been doing lots of reading this week about Depression and how to help people out of it. Unfortunately, there is no quick cure, and one of the key helping factors appear to be keeping yourself busy. We had discussed this and so we had decided to do lots today (Bank Holiday Monday). We made a concerted effort to have an active day.

We went to the Garden Centre, went shopping in M&S, Sainsburys and walked the dogs. Has it helped ? In a word, NO !

kp just wasn’t in the mood. She was apathetic around the shops, despite trying to enjoy it, and kept stumbling on the dog walk.

So…….

LOADS OF FINGERS CROSSED for this next week. I really hope things improve. Life is so sad at the moment for kp. She really needs some happy times !

Love u kp
xxxxx

Well, still not seen a good week generally, but some enjoyment was had by the end of the week.

Tuesday saw us go for the final assessment with Ann (the Neuropsychologist). She did some more tests that allow Ann to see where Karen struggles. The idea is that Ann can pass this on to kp’s next neuro-specialists so that they can adapt the way they treat Karen. ie it has been established that Karen takes things in slowly and has a poor working memory, so the counter-action is that the sessions will be more frequent and slower paced. The next specialist is a lady called Jane who specialises is Post Traumatic Stress Disorder.

The meeting with Ann was not a very pleasant one for kp, as Ann took time to explain the results of the tests to Karen. She did so in a way that Karen understood and translated the techy terms into practical examples….eg…..

Poor Working Memory – Karen will need to explain to people she has had a brain injury and ask them to go through things slowly. She may have to take notes.

Poor Spatial Awareness – Karen got upset when Ann explained that shopping at the Metro Centre would not be possible on her own and even shopping in Durham may be a difficult one to achieve without someone coming along as she would get lost and stressed with it. These are all things Karen knows deep down inside, but as I have mentioned previously in the blog countless times, when kp hears it from someone official, it really hits home.

There were quite a few more examples, but the worst one and the one that got Karen hysterically upset was when Ann said definitively that Karen would NOT be able to drive again (for the safety of others and herself). I had told Karen before that it was unlikely she would be able to drive again, but hearing it from Ann was unbearable for Karen. As soon as Ann said that, Karen just “wanted to go home”. She cried the whole way home and the next few days saw Karen go very introvert. In her own words…..

kp:- I feel dead inside.

Very sad. She has been subdued all week and I know there is more upset and realisation to come.

Wednesday saw kp and I go to the dentist. Here’s one good bit of health news re Karen – she has a great set of teeth. No work needed doing and for a change I was the same !

Steve (Physio) came a couple of times during the week. All the physio from the home this week (I think) and on the Friday they did some Wii-Fit stuff.

This weekend has been great and although kp is still not herself, we have been making the most of the absolutely gorgeous weather and have pretty much been outside the whole time gardening. I normally hate gardening, but have really enjoyed spending time with kp and seeing her find some enjoyment from us both doing it together. We have….

• Planted about 500 plants (well, probably 30, but my hips tell me it’s more like 500).
• Been to 3 garden centres – same one twice, because kp had forgot something we needed.
• Done the rose garden
• Cleared out the house gutters (loads of little Sycamores growing in them)
• Swept the drive

It’s been really good and it was great to see kp enjoy the best of the weather. She is such a fighter as well, because we did 2 dog walks as well and despite being in a lot of pain after the 1st day’s gardening (Saturday), she wanted to do more today. Thank god for morphine tablets for breakthru’ pain.

So, all in all, things not outwardly as bad as the previous week, and I expect we have more upset to come, but the weather has been very kind and we have definitely made the most of some gorgeous weather

Well, things are heading up, although monday night we definitely didn’t think so.

Monday was uneventful, the Tesco shop arrived and Doreen and kp put it all away. Rachel (OT) came and they discussed kp mood’s and did some exercises to de-sensitise kp’s arm. kp’s left arm is hypersensitive to touch. If I lightly touch it by accident, all hell breaks loose, it’s like I’ve sprayed acid on it, with the reaction I get. We had some lovely Lemon Sole Goujons for tea and kp started to feel sick (unrelated we think). As the night progressed, she felt more and more sick, and before bedtime, she was always a quick grab away from a sick bowl.

We had an early night, thinking that would help things and she had a sick bowl by her bedside. No sooner had we turned the light out, that she shouted…..

kp:- David, get me up !!

I did the normal push out of bed and went alongside her. She already had the sickbowl to hand and then the vomit spewed !! Poor kp. Don’t you just love this detail !! (sorry !) Towards the end of the vomiting, another load came out with “blood” in it. At that point, I was fretting, thinking….”Right, that’s it, we’ll have to go to the hospital”. “Another night in the hospital”, “She’ll have to stay in”, “She’ll hate that”, “It’ll bring her right down”, etc etc…..All these thoughts rushing through my head.

dp:- I think that’s blood love.

She could just make it out in the dim light of the room.

Close to full, I ran for another bowl, and took that in (with some wet wipes), and then took the “blood” filled bowl to the sink in the bathroom. With the light on, the blood looked a bit like ………. BROWN SAUCE !!! (which kp had had on her chips). So, we think it was brown sauce and to be honest, we were both happy to accept that to avoid another hospital trip at that time !

That was the end of the sickness for the week, so bit of a worry but it’s all over.

Tuesday, Syd (Case Manager) came and he had a long chat with Karen. In the afternoon, Doreen took kp to meet up with the physio (Steve) at the local gym. They have a trampoline that doesn’t require you to climb on it which kp had been on before with Steve. Today, she went on and started bouncing (with Steve alongside). As her confidence grew, she started doing it so much that her feet left contact the trampoline. Karen later told me that she was over the moon and had tears in her eyes. She couldn’t believe she had done it. She was so excited when she told me on the night time ! Later in the afternoon, Matt (the speech therapist) came and together they did some trial calls on the phone. kp struggles with speaking to people when they overload her with information. So, we were planning a big trip to the States which involved flights and booking of a motorhome (RV) and as you can imagine it’s quite a tricky thing to book, so together they practiced the phonecall and then did it for real.

Karen preempts the conversation with a little monologue (that I have mentioned before) that sets the expectation of the person on the receiving line to slow things down. Well, every person she phoned, said “No problem” and was very understanding UNTIL it came to actually “being patient”. The sticky point was always when Karen got confused about some information they had said, at which point one of them showed their impatience.

Karen :- It would only take a couple of calls like that, and I would lose the confidence to do it.

Matt agreed. Name and Shame time. TRAILFINDERS, have some patience !!

Matt showed Karen that it may help to have a piece of paper with fields that she can fill in which had been prepared before, but kp got a bit flustered when she used it, and the information was all over the sheet.

Wednesday, the girls (kp, Doreen and Adele) all cleared out the garage. It looks great ! Once that was done, they took the dogs for a walk.

kp is REALLY trying to keep active, because we think her sleep is improving (slightly) the more she is active !

Thursday saw Doreen and kp go to the Metro Centre shopping. As they were parking, Doreen bumped the car. kp was very unnerved by it. Doreen got out to inspect the damage, at which point, with kp still in, the car started moving. Rather than put the handbrake on, kp froze with fear. Not the best start to a shopping trip. Poor kp and poor Doreen (car a bit scratched).

Good news is – kp got your birthday present Dad !! We’ll bring it down next week !

Friday, kp had an appointment in Newcastle. I met kp there. It’s the one I can’t discuss, but suffice to say it went REALLY well ! We both came out feeling quite positive about kp’s wellbeing. Another physio in the afternoon, again at the gym.

We thought kp would be wrecked the following day, but she was still keen to walk the dogs. It was raining, but we still enjoyed a good dog walk, kp’s mood was in ascendance. It was Yvonne’s 50th party on the night time, but we didn’t attend. We didn’t want to risk it going bad, kp isn’t comfortable in big groups like she used to be. Hope you all had a good time. A bit of a scare on Saturday, ‘cos Strike (Marie’s dog) went missing. kp was on tenterhooks the whole day.

And today, we walked the dogs and decided to abandon the big American holiday (later in the year) in favour of some shorter holidays. But, good news about Strike – Freddie found him

So, things are looking up. Karen’s mood outwardly appears fine, but the best way to describe it is that she is “on autopilot”. She describes it as “nothing has meaning for her”, but she would agree that things are definitely better than they were !!

Better week generally.

Being blessed with good weather always seems to help kp’s mood. And she made the most of it on monday with a day of gardening. Doreen did the heavy work, and boy, did she do a good job. Well done Doreen and kp of course.

Tuesday saw kp go to get her hair and nails done. Steve (physio) came in the afternoon and they took the dogs out for a walk down the railway line. By the railway line is a downward slope to a stream, which the dogs ALWAYS go down to swim in the stream, but kp and I never do, but Steve got kp to go down by the stream. Well, the dogs couldn’t believe their luck and went absolutely manic with excitement. Steve got kp to do some balancing on old fallen trees. kp was really pleased with what she did.

Wednesday and Bonnie was wincing in pain. We think she was so excited the day before that she has overdone her hips (German Shepherds suffer from bad hips as they get older). So that was quite sad to see. I met up with kp and Doreen at the Lansdowne Clinic in Gosforth for a session with Jane (a clinical psychologist) mid-morning. It went very well, and we both took to her and think she can do a lot of good for kp. Of course, it wasn’t without upset. kp was fine until about 10 minutes before the end, when Karen asked …..

kp:- So, how do I accept that I won’t be the person I was before.
Jane :- Well, some people find it helpful to think of it as a journey from the person to that you were before, to the person you are going to be. And what we will try and do is to take as much of the person you were before on this journey, to this new you.

Well, she put it much better than that !

She gave some examples of real people who had “made the journey” and how their lives were different to their old lives, but that they enjoyed their new lives.

One of Karen’s biggest problems is that she has accepted the ramifications of the accident. It’s a bit like the 5 stages of grieving when you lose someone close to you. ….

Denial – The accident hasn’t happened
Anger  – What have I done to deserve this ?
Bargaining – Well, if I put 110% into my rehab, I WILL get back to my old self
Depression – Why bother ?
Acceptance – Actually, I have had an accident which HAS changed my life and it isn’t so bad after all

My take is that Karen has done Denial, Anger (which still recurs but less frequently), and is currently in the Bargaining/Depression stage.

I think Time and Jane’s sessions will definitely help move kp to a better place.

So, a few tears towards the end of the session with Jane. I went back to work, and the girls went to Peter Barratt’s Garden Centre and enjoyed a nice meal and bought some gardening goodies.

Matt (Speech Therapy) came in the afternoon and Karen soon broke down in tears. The upset geared around her not knowing how to make the transition from where she is now, to where she needs to be to enjoy life. They didn’t do any session work and I think Matt was so worried he phoned Syd (Case Manager) to share his concerns with him (I think, ‘cos Syd phoned that night).

Syd came round the following morning and had a long chat with Karen. When Doreen arrived, they lunched at home. Steve came at 4pm and they did “balancing on the ball”. Steve had previously brought around this large ball (that people do exercises with). But this session was also not without the tears. Steve was trying to expain to Karen how to do this certain exercise and Karen just couldn’t understand what he was saying. After numerous repeats of the information, Steve said….

Steve :- You’re making this more complicated than it is.

Karen got upset at this, because she felt like it was her that was being “stupid”. This is a good example of Karen and instructions. They have to be very short for her to understand them because of her small “working memory”. Steve knew he had explained it badly and apologised and showed her what he meant (re the exercise), and Karen could get it fine that way. Karen told Steve that she wouldn’t remember this for the next session so he would have to show her again.

Minor hiccup !

Another good example of how this kind of thing accepts Karen is Thursday night. We had decided to try and get into a good series of programmes (like Lost, 24 etc…) where there had already been a few series on the TV, so we could buy the boxset and watch one a night.

Well, I had got the first 2 episodes of “West Wing” and we thought we would try the first one. Well, it was EXTREMELY fast-paced and I could tell Karen wasn’t getting it, so we passed on that series. We’ll try something else. It’s quite sad really, ‘cos she would have previously enjoyed it.

Friday saw a quieter day for Karen. Marie and Glenn came over to pick something up and kp enjoyed their company plus the company of Strike (Marie’s dog).