Lydia came over on monday. She brought cakes and they did lunch which was nice.

Tuesday saw my 40th birthday come and go. kp had got me more presents than I can ever remember. How she managed to do that is still a mystery, but I think some internet shopping and some assistance from Marie helped. Thanks kp.

With the recent pain issues, we had decided to get the pain medication changed. It needed upping. We had charted the patch usage so that we could tell the doctor what worked. He was great and told kp exactly what she wanted to hear, namely that “we haven’t even scratched the surface as to the pain medication that could be deployed” or words to that effect. kp was over the moon.

Here is the chart I gave to the doctor, detailing when different level patches were applied. This level allowed kp to enjoy life (as best she can).

The doctor noted our use of patches to fix break-thru pain but felt that this would be better done with pills. So, in summary, he upped the Fentanyl patches to 150ug / hr, and gave her a load of “morphine suplhate” tablets to use for breakthru’ pain.

The rest of the week she has been following the new regime. The 150ug patches seem to last 1.5 days, and then she starts on the morphine tablets (50g strength). The good news is that they are sorting the pain. The bad news is that they completely zonk her. She feels constantly exhausted and seems to spend her days sleeping.

Friday, Adele and the kids came over during the day. kp got up for part of their visit. Veronica came for the night time. I went to a work’s doo on the night, and didn’t come back until about 12.15am. Both vd and kp were asleep (very unusual for these 2). I was very tipsy and hadn’t a key, so hammered on the front door to be greeted by a less than enthusiastic kp.

Here are some pics from the doo. I only took 2. All I can say is…..”Helen……..hah !”. That’ll teach you for taking everyone else’s picture !

 

Saturday, we both slept most of the day, getting up in time to go to Irene and keith’s (ronnie’s mum and dad) 50th wedding anniversary.

Here is Michelle, Karen and Irene.

So, good week for pain, but not sure we have gained much with kp just a walking zombie

Bad day today, deserving its own entry.

kp hasn’t eaten anything of consequence since Saturday night. I persuaded her to have a chip butty tonight, but her appetite has been very poor for a while now. She has been feeling very weak, and with it quite low.

There have been quiet a few tears today and lots of talk of her leaving me and “my life would be better” kind of talk. By leaving me, she means taking her own life. Of course, I try and get her to put things in perspective, but I think a combination of her feeling sapped of life, the lack of food, and still getting over that damned morphine tablet are hitting her hard.

The morphine tablet was great while it lasted, but I don’t think they agree with her.

I got her in the bath later in the day, and we had a better chat. It still focussed on “how better my life would be if she weren’t here” with lots of references to Cleo (one of our old “suffering” dogs) and how we were upset when she died, but life was better without her and her suffering etc etc…

But, I think I got home to her how much she means to me, and that I don’t want to consider a life without her etc etc….

We could really do with some good times for kp at the moment.

The theme for today is she was interested in ABSOLUTELY nothing ! No matter what I suggested, she didn’t want to do it, watch tv, go to the garden centre, have a snooze, visit family in Mboro – nothing interested her. So we just sat there, silent

Very sad !

Even cigarettes weren’t appealing, a sure sign something is wrong !

I do hope for a better day tomorrow, or sometime soon…….

Well, pleased to report that things improved as the week progressed. Although her appetite remains poor, she has took my advice to treat food as medicine, and has been eating enough to give her energy to move around.

Adele couldn’t make it on Tuesday as she herself was ill. Sod’s law, the one day we really needed her, she couldn’t make it. kp was very weak and didn’t eat a thing. I think she was tempted by a chip buttie on the night time. Wednesday saw some improvement and then it seemed to continue from there on.

We postponed hydrotherapy on thursday, as we didn’t want any dips in the improvement. She is always in pain after things like this, and we needed a good rest of the week.

Pain-wise, she has survived on a 100ug patch for mid-week and a 125ug until today (no morphine tablets).

By the weekend, she back to her old self again, positive, being able to enjoy life and she even made my tea !! It was shite, but it was lovely to have it made for me. It wasn’t shite because of Karen by the way, it was just a poor piece of frozen food.

Friday, Adele saw an even more improved kp.

Saturday was a day I had been looking forward to, as it was our work’s golf day. Last time I was due to go, I had had to cancel as kp and I had had a “heated debate” about whether she was a “burden” or not. She had reminded me that the weekends were “her time”. But she was happy for me to go this time I had a whale of a time. I had pre-ordeded a buggy to get us round the Percy Wood Golf Course in Swarland, but it wasn’t there. Grrrr ! Had to walk the first 4 holes, until they brought the buggies to the hole. I played poorly, but enjoyed the day. I was playing with Nigel, and John and Ralph (from Sales). Nigel was more interested in taking photos of obscure things (with his new camera) or seeing if he could pull off a 360 wheel spin in the buggie than the golf, but it made for a very amusing day !

As a bonus, there was a gorgeous meal at the end of it. Bangers, huge yorkshire pud, chips, gravy and peas, washed down with a pint of lager

I was absolutely knackered at the end. Here is one of the obscure things that Nigel took a photo of.

Big Week this week. Actually tomorrow is the highlight (monday).

kp has her driving assessment to see if she can drive again !

All fingers crossed as this will REALLY change her life for the better if they say “Yes”. I dread what will happen if they say “No”.

Driving Assessment Day

Not what we had hoped for.

Karen came in a taxi to meet me at work. We went in ITPS toilets to put her bra on, because she couldn’t get it on.

She had been very flustered getting ready for the taxi. Things hadn’t gone to plan.

The driving centre was very impressive and the staff superb. kp had been VERY anxious for the last day or so, but they made her at ease.

The afternoon started with about an hour’s worth of assessment, maybe even 90 mins. There were loads of tests to see if certain moves were painful (looking in the mirror, getting in the car type of moves). But the majority of the tests were to assess the impact of her stroke on driving.

One of the tests was the lady made 5 signs with her hands (salute, fist, turning a key, wave and another (which I have forgot)). kp had to do the signs back to her. She only got 3.

Another test was she showed Karen a blank piece of paper which had 3 cubes on (next to each other).

kp had to guess how many cubes there were. She guessed correctly.

Then they got more complex, and she didn’t get ANY more right. It was very sad to see.

Here is an example. Take the top left set of cubes. The lady would ask how many cubes there were. Karen would think about it for a while and say 12. She couldn’t picture the 3 dimensional aspect of the diagram. There are, of course, 8.

The lady explained that this was a problem with spatial awareness. Karen asked what does this have to do with driving. The lady went on to explain that it means Karen finds it hard to understand things she sees in 3 dimensions. She asked Karen if she had problems getting her clothes on. Of course, she does. She suggested that Karen might struggle with getting her clothes the right way round. She had hit the nail on the head. Karen can not (for the life of her), work out how to get a blouse the right way round. If an arm is inside out, kp can’t work out how to correct it.

Interesting how the lady could tell this from this simple test.

She then showed Karen a series of sheets which had 2 squares on. Each pair of squares had a dot in it. One of the squares had a dot bang in the middle, the other had a dot that was a little bit off centre. kp had to identify the square where the dot was bang in the middle. She got about 3 out of 8 of these, whereas normally people would get 7 out of 8. The other thing that was obvious is that it took Karen a long while to work it out. I was sitting behind her and watching over her shoulder,  and I could tell instantly, which was the one with the dot in the centre. Although I did get one wrong.

What did this have to do with driving. Well, when we went out on the driving circuit, we found out.

There was a driving circuit behind the centre and Karen had to drive around as directed by the driving instructor. He was dead canny. He only had 1 eye and 1 arm, so he was a good example of how you can still drive with disabilities.

They didn’t really want me to go with her, but Karen insisted.

What was clear when kp drove is that she drove very much to the right of the track. It was later explained that her left side inattention meant she was unsure what was to the left, so played it safe and drove to the right. Obviously on the roads, this can be dangerous. We clipped a few kerbs along the way, but the circuit was that tight, I think most drivers would have clipped the odd kerb.

The upshot of the day was that they were concerned about Karen’s line on the road. This possibly could be fixed with lessons, but the driving instructor said that this tended to be one of the things that could see only slight improvement. But we wouldn’t know unless we tried.

After the tests, we both felt that she wouldn’t be driving again, as it was clear there were issues, but after the driving part of the afternoon, we both felt there was a CHANCE that she could drive again, but it would all depend on whether she could correct her line on the road.

kp was upset, I could tell, when they were reviewing the day. But there were no tears, although she was welling up.

Strangely, the whole test was done in a manual car, with no bolt on knob on the steering wheel, which i thought strange. But this is because kp was used to a manual car. At first, she couldn’t get the gears right at all. We would set off in third with the inevitable stall. But I was impressed that she could do the gears at all. Whereas most people wouldn’t need to look at the gears to get the car into gear. kp really had to concentrate and watch what her left hand was doing.

For the lessons and future driving, they have suggested Karen only uses an automatic car. If she was successful at her next assessment, her licence would be changed to “only automatics”.

So, not exactly what we had hoped for. Still no tears, but I know she will be thinking about it for a few days, and I think the upset will follow.

One funny moment. After the hour’s worth of assessment (which kp later told me REALLY took it out of her, but she tried not to let it show), she wanted a fag before the driving assessment. She asked the lady where she could have a fag. Unfortunately, it was one of those new places where there is no smoking ANYWHERE on the grounds.

kp looking forlorn :- Oh, not to worry.

Seeing kp really wanted a fag, the lady stopped the driving instructor and asked him, in turn he asked another lady who was passing. Another person was passing, she stopped to offer advice. In the end we had 5 staffmembers around us all discussing how to smoke legally on the grounds.

Apparently, if you are in your own car (on the grounds), you can smoke, so that’s what she did

Here is a video clip of kp doing her emergency stop.

CLICK HERE (it may take a while to download)

Driving lessons here we come !

Well, a very depressing week for kp. She mulled over the driving assessment and things gradually sunk in and her mood lowered as the week progressed.

Tuesday was neuro-physio (NP), and the NP worked on kp’s left shoulder, trying to loosen it up. The NP also decided to set kp some goals. kp felt that this was a sign that she was going to stop the NP sessions shortly, once the goals had been set (and achieved), which, in a way, can’t be a bad thing.

Wednesday was another suicidal day for Karen. She was wanting to end it all. We talked about it and we are going to up the anti-depressants. She takes Cypralex (or escitalopram) and we are doubling it to 20mg per day. If that improves things, we will go to the doctors to up the prescription. When kp is down, it has a knock-on effect on me, and my days at work tend to be shite, as I think about her a lot of the time. I go all flat too.

Thursday was hydro. The usual exercises (cycling action, right hip exercises) and they also tried to stretch kp’s arm (2 of them). Sounded a bit like mediaeval torture to me.

Friday – kp didn’t get up until 12.30pm. By which time, Marie and Adele had been jobbing on around the house. She had a lovely afternoon with them by all accounts.

During the week, I thought that a holiday would give something for kp to aim for. So, I planted the seed, and it seemed to change her mood for the better (note to self – must remember this). She wants to go to Lake Garda (in Italy) (mum and dad recently went and said it was great).

Saturday – it was Ethan’s (our nephew) Holy Communion. So, we had to be up early to get to the church for 10.15am. We were late, and it had started (10.35am), when we arrived. Not that it mattered, as there were no seats in the church left anyway. Fortunately for kp, there was a seat in the reception room. I was tasked with video’ing the ceremony, so went to the front (down one of the aisles) and watched from there.

I was right behind the organist. She must have been about 110 years old, and sitting to her left were her choir. About 9 ladies and a bloke, youngest age probably 75. It was funny as hell to see her conduct them whilst keeping one hand on her organ. The funniest bit was when she gave them the sign to stop singing. It was as if she was saying….”this is the end of the song, stop within the next 5 seconds, whenever you like”. Michelle (who had joined me at the front) and I had a giggle.

Ethan was on the 3rd row back (I am not sure if that was alphabetical placement or “naughty” placement). I don’t think I saw him smile once.  Here he is as part of the final “take a photo” scene, and also with kp and Michelle.

We spent the rest of Saturday looking at hotels for the holiday, and planning an itinerary. We nearly got to the “booking it” stage, but I need to check with my partner in crime (at work) whether I can go for the week we have in mind.

Sunday, kp stayed in bed until about 12pm. I did a bit of gardening and watched the Guns of Navarone. When she had got up and had eaten breakfast, we hung around for a bit, as our solicitor chappie was supposed to come (at some point), but he didn’t so we went to a Garden Centre. Here is kp at the garden centre.

Average week

Good hydro session on monday, leaving her with aches and pains on tuesday and in agony on wednesday.

Neuro physio on wednesday – kp was supposed to take a bra, and other clothes so she could work on that, but she forgot to take ‘em

Because of the heightened depression she has at the moment, we have doubled her cypralex dosage, and this seems to have had the side effect of leaving her constantly tired. It was getting her down most of the week as although the pain was bearable, she couldn’t make the most of her days. It continues to be a problem, but she is hoping to get on top of it, in time for the holiday next week.

We have booked a week in Lake Garda, Italy for next week, so kp is really looking forward to that. It seems to have been the thing that changed her mindset most significantly.

Hydro on thursday was a good session apparently.

Friday – kp still very tired. She was supposed to go out for lunch with Debs (from work). But she didn’t have the energy so they stayed at home and had toasted sandwiches and cakes.

Saturday – We went over to put some flowers on Lee’s grave for Lee’s 24th birthday. Ethan was with Marie so we brought him back for the weekend.

Here he is on the motorbike.