Fit number 6

This one happened about 5 a.m. so no chance of getting assistance unless I wanted to get the emergency services involved. I managed to stay calm enough to quickly hook Sue up to the oxygen and checked the level straight away  -  99% which was reassuring.

I used the Buccolam 'fit buster' prescribed after 5 minutes. On the previous two occasions I've used it I've waited longer but I've read that fits are more serious the longer they go on. Almost immediately there was a change in her breathing for the better and within a short while there were the usual and reassuring small movements.

She's now sleeping quite peacefully  -  the Buccolam has a sedative effect so this is quite normal. Hope to post again soon.

What kind of fits?

I haven't blogged much recently. I seem to be spending more time checking up on S when I'm alone here and she is resting or sleeping. When the PAs are here, I still spend a lot of time with S.

I'm still very concerned about the 'seizures/fits', particularly their length and apparently increasing frequency. This morning I've found this very interesting website which seems to describe every known type of seizure:

http://www.epilepsy.com/learn/types-seizures

What happens to S doesn't come close to matching any of the detailed descriptions on this site. Also, I haven't searched exhaustively but all the duration times mentioned are much less than the 10-12 minutes which S's events seem to have lasted, though as the event seems to gradually morph into very deep sleep it's difficult to be sure. It's all very perplexing.

Another thing I've picked up from the site is the possibility that Omega 3/oily fish may help reduce the number and duration of seizures. This may be worth trying even bearing in mind the possibility that these are not epileptic seizures

Fit number 5

S had another fit today - the fifth, I think. This time I hadn't even got her up. I was upstairs on the exercise bike and I always have the baby monitor attached to the handlebars. I was suddenly aware that S was making the horrible gargling which I now know means 'fit'. Straight downstairs and no doubt about it. As I have her sleeping in what is just about the recovery position there wasn't much to be done. I felt a little calmer than the last time but it's always horrible being on your own. I tried a few calls to people who might have been available. The first few weren't, but eventually I had a friend, a Carer/PA who was due later and came straight round and S's daughter plus husband and kids. By the time the first of them arrived, things were definitely on the mend and S was in a deep sleep. Every so often there was a bit of drool from her mouth including a faint trace of blood which I reckon was probably because she'd bitten her tongue slightly. After about 12 minutes I gave her the Buccolam spray (prescribed sedative) but not the whole syringe full as she coughed a bit as I squirted it onto her inner cheek.

Don't know how long she slept but she had her first drink not much later than she usually has it (around 10 a.m.) followed by pretty much normal breakfast.

S's daughter and family stayed right into early p.m. and daughter has said to call her straight away if there are any further problems.

There's been some progress in dealing with the fits in a way. After each of the first two we spent most of the day at A & E and weren't much the wiser after all the testing. Following fit 3 we phoned the surgery as the GP had suggested and he came round shortly after. During fit 4 we were able to talk to him on the phone. This time we couldn't even do that because of the weekend but I'm not really worried. Hopefully, we'll have 3 or 4 months before the next one.

Anniversary of the first fit

A year ago yesterday S had her first fit. I've just looked back at what I wrote during the first few days after the fit and I sound pretty hopeful that S would walk again. Several thoughts occur to me about this now. One is that if we had not been so let down by physios she could have managed to walk again - after a fashion and never without support. But I also see now that her walking was becoming more and more erratic in the weeks leading up to the fit and it's very likely that, even without the fit, we would probably have been in a a very similar situation regarding walking as we are now. In fact, S can take a few paces with support and we get her doing this at least once a week She is always keen to do it and I'm sure it does her good in a number of ways. It also makes me think that, in the event of a fire, we could stagger to and out of the front door which is only a couple of metres from the bedroom door.

I also realise that had we not had the crisis a year ago we may have struggled on with the fairly modest level of help we had (6 hours a week) for much longer and that situation could easily have led to more potentially serious falls. It's also unlikely that we would ever have met the wonderful carer K and our other very good carer who have made such a difference to both our lives. And, of course, it's quite possible that, although we would have had to get more help eventually we would not now have nearly as much as we do.

Finally, it's important for me to keep reminding myself that S is not essentially different from how she was just before the fit a year ago and she is actually better cared for now than she was then.

Another fit

When I went to get S into a position so that I could give her her breakfast yesterday morning she winced and clutched the top of the arm that she had probably been sleeping on and then almost immediately went rigid. I got her into the recovery position quickly. She was breathing noisily through her nose. I tried hard to see if her tongue was obstructing her throat but her teeth were clamped tightly together. All S's fits have lasted longer than most I've read about but when it got up to 10 mins I decided it was time to try the Buccolam medication which you squirt inside the cheek. I did this at about 11 or 12 mins. It was easier to squeeze than I thought and all went in on one side with some coming out and there was some choking that quickly subsided.

What I hadn't realised was that it's a sedative - the GP told me this when I phoned after I'd given it - so it was difficult to know initially whether/when the fit had morphed into a pretty deep sleep. She eventually did sleep for a long time. I told him the GP that the oxymeter was showing fluctuations and was mostly in the low nineties which I'd read was a cause for concern but he was happy that it hadn't gone below 90. I'd managed to contact a friend of S's who lives a few streets away and who has given me her number for this purpose. She came round fairly promptly and it was a great help having her there. I phoned the GP again and was reassured that the sleeping was OK - I even got him to listen to her breathing.

Daughter and baby came later and this was also a great help. Things returned to somethings like normal. The only after-effect seemed to be extreme tiredness. She ate and drank and used the commode as normal. We also had a couple of smiles. I think she slept pretty well and had her breakfast as normal so I'm hoping we'll get her to our 'Singing for the Brain' group this afternoon.

But these things are scary when you're on your own.....

Fit number 3

S had another fit today. Our carer had not been here long and was feeding S her lunch. I was in the kitchen when the carer called me to come quickly. I went straight in and it was just like the last fit. We lowered the bed and got her into the recovery position. There was a small bit of regurgitated fruit that came out and the dreadful-sounding gurgling breathing. The carer asked if we should phone for an ambulance but I reminded her that the GP said, after the last fit, that we call the surgery and he or the other partner would come as soon as they could. So rather than ringing 999 we decided to hold on. The surgery was closed for lunch so we couldn't call for 15 mins.

The fit subsided after about 8 mins though it's difficult to be exact as she was fairly passive during and after and the breathing gradually sounded a bit more normal as she seemed to drift onto quite a deep sleep. I was able to use the oxymeter and found the level was normal, at 97, even during the fit. This was a bit of a relief. Temperature was also normal.

At bang on 2 when the surgery opened, I phoned and got straight through! The receptionist talked to the GP on the phone and eventually came back with the message that he would call round in about 30 mins.

When he came S was pretty much back to normal, though tired. He did her BP and listened to her chest - no problems. We discussed whether she should be on an anticonvulsant and he thought that as all three fits had happened at similar times and she is nearly always on the hospital bed or in the wheelchair, comparatively safe, it was probably better to avoid the possibility of complications with other meds, at least for the time being. Fine by me.

So all in all, much less traumatic and tedious than the ambulance trips to A and E for the day, yet the same positive news that we would have got there. I would do the same again unless the oxygen level was a concern.

It's still very scary - particularly for the carers who hasn't seen S have a fit before - but I'm glad we held our nerve.

S soon ate the rest of her lunch quite happily and is, as far as we can see, back to normal.

S has had another fit

Fortunately it's clear that it wasn't as bad as the last time. Although it was horrible to witness and hear (she was breathing in a strange gurgly way for 7 or 8 mins) she recovered quickly in terms of vital signs. The first responder got here before the fit was even properly over and her oxygen level was normal (it helped that as she was in the hospital bed I was able to get her into the recovery position very quickly, unlike last time when she was in a very awkward crumpled position and it was deemed potentially dangerous to move her).

It was scary - you know anything can happen but it's still a shock when it does - but I found I was able to cope. I was very reluctant to go to A & E after our last experience and I phoned our GP before I agreed and he said to go, if only for the bloods. Our carer came straight to the hospital, as did S's daughter who brought her very recently-born baby with her. So the waiting was actually quite bearable. 

All the tests were fine, including a chest x-ray (as the thing started when she was drinking and coughed so there was a risk of aspiration pneumonia developing) ECG and various blood tests. Her chest sounded fine as well.

Rather than wait 3 hours for an ambulance home, S's daughter drove me to collect the wheelchair and vehicle. I then drove back and our carer helped me lift S into the chair and we came home in tandem. We then got her back on the bed and settled ready for an evening snack. She had eaten most of a sandwich at the hospital so no problems with her appetite. Two days later everything suggest that she is pretty much back to where she was so just a 'normal' fit, if there is such a thing, but we shall see.

I've looked at the NHS Choices page on seizures (fits):

http://www.nhs.uk/Conditions/Epilepsy/Pages/Symptoms.aspx

It confirms that there is an enormous range of symptoms that can constitute a seizure, e.g. S regularly has what could well be Myoclonic seizures, particularly at breakfast time and these can occur in conjunction with other types of seizure.

Also, it confirms that not all seizures are due to epilepsy.

It looks as though this is yet another area that I need to get clued-up about.

Still here

I think I've just had the longest break from this blog since I started it. The reason is very simple. I've been too busy. During the weeks since the 'fit' we have had an astonishing number of different people coming into the house  -  sometimes I've been showing another one or two in (they often come in pairs) whilst showing others out. They are all trying to help us, which is appreciated, though some of them have let us down and I start to think it would have been better if they had never raised our hopes.

We have also had a stairlift installed. This has enabled us to get back to our bedroom upstairs whilst we are having a new bathroom installed. That project was started very quickly and will very soon be finished  -  at least that's what the builder tells me every day! The closer it gets to being finished, the slower the work-rate seems to become. When it is finished, we can plan our permanent move downstairs to a sitting room which has to accommodate S's 'hospital bed', a single bed for me and a hoist of some kind.

I hope to get back to posting more regularly but it's so hard to find the time.

How to create an invalid

I am very disturbed by the way things are going following S's fit. Already, less than three weeks since it happened, she is being treated like an invalid. No serious attempt to discover why she has practically lost her mobility has been made. It took two weeks and a very determined District Nurse to get her x-rays which have finally ruled out any fractures to the hips or pelvis. The District Nurse's  intention then was that S should receive intensive help from physiotherapists to try and recover at least some of the mobility that she had before the fit when she was capable of walking 5 miles a week. But no-one is really interested in doing this. It seems to me that this is a result of the widespread if unspoken assumption that there is no point in wasting resources on someone with dementia.

We now have two daily visits from pairs of 'carers' who are not seeing an individual person who still has some abilities but a body that is incapable of doing most things. The less S has to move or be moved the better, as far as they are concerned. There is talk of hoists, hospital beds and commodes which she can be wheeled around on. Because they are now involved, I can see that, even though we will soon regain access to two bathrooms (a new one we are having put in downstairs and the original one via a stair-lift) the regime of  minimal movement and bed baths will be hard to move on from. Ironically, I'm still the one who has to do any lifting and moving because we do not have the 'right equipment' yet.

An assessment by someone who gave no evidence of having any particular expertise resulted in a decision, it seems, that the mobility issue was probably a result of what was going on in the brain  -  now there's a surprise  -  rather than any physical problems with parts of the body. The conclusion was therefore that physiotherapy would not help. But, of course, as everybody should know, the brain and the body are intimately interconnected and it's quite possible that repeated physical activity of any kind could help to restore some of the previous connections that may have been damaged. One of the things that perplexes me and the district nurse is that after the fit S was able to use stairs and the loss of mobility occurred in the evening of the day after the fit. No-one can explain this, and, worse, no-one is remotely interested.

Once before, with my help, my brave and determined wife re-emerged from a total meltdown, which also involved mobility  -  in addition to extreme agitation and aggression, paranoia, and torment  -  to become again a person who in her own ways got something out of life and was as physically active as she was able to be. I want to try and help her to do something like that again. But 'they' seem bent on creating an invalid. That is their expertise. And what an appropriate word that is, by the way. It's no wonder that they stopped using it. It gives the game away.

S has had a fit

This was the first time I've seen anything quite like this. I had left her sitting on the the toilet waiting for the mobile hairdresser. When I went back in after a few minutes she was still sitting on the loo but twisted up. She looked as if she was wringing her hands and she looked very agitated. She was totally unresponsive. Also her breathing and a little bit of coughing suggested she might start to vomit.

Then she slipped down to the floor. I couldn't stop her but was able to stop her banging anything in the process. She was in an uncomfortable sitting position against the radiator but I was reluctant to move her in case we ended up in a worse position. Her breathing sounded quite laboured and gurgly so I decided to call 999. It wasn't considered 'life threatening' so it took a while before an ambulance became available during which time the operator stayed on the line though I can't say she said much. She asked but I was unable to say whether S was asleep or unconscious. Then a 'volunteer first responder' arrived. Finally, the ambulance. By this time things were looking a little better. S opened her eyes a bit (she normally has them closed for much of the time).

They decided on the Accident and Emergency department at our large local hospital. S's daughter had arrived by now which was great and she followed us to the hospital. In the ambulance S looked better still, holding her head up normally, not back on the pillow and with open eyes for much of the time.

I won't bore you with a full account but in the 5 or so hours we saw many different people in a variety of uniforms, most of whom did a little bit (mostly tests) then went away. Blood tests suggested she might have a slight infection. They gave her a chest x-ray which was fine and talked of testing her urine but dropped this idea, probably because they realised it would not be easy. Blood pressure, pulse etc were all in the normal range from almost the time we got there.

Eventually, they said she could go home but we could contact them if there were any further problems. I was fine with that.

She is not back to normal mobility wise yet but can stand and walk. She's eating normally. The stairs are more of a challenge than usual so we stayed upstairs on the first evening and had to stay downstairs yesterday as she just couldn't get up the stairs.

Such events are always shocking. I know things might get worse again but at the moment I'm fairly hopeful that this might just be a one-off. She has been prescribed antibiotics for the suspected UTI but unfortunately the first med prescribed made her vomit so I'm hoping to get a replacement by this evening.