The doctor cometh..........

First let me thank those of you who commented on yesterdays post. I was more switched on when the doctor call today, so was able to come away with a little more positive news.

He answered all the general medical questions I asked, mainly about her care and what to watch for. I asked about a time scale and he replied that whatever he told me would be wrong. There were many possibilities. Because the body is not acting in the way it should, it will gradually shut down. This could be hastened by and infection or breathing difficulties, pneumonia etc, and of course, there was always the possibility of another seizure. It also depends on the will to survive or whether the body is just too tired to fight anymore.

In the mean time, we will make her as comfortable as we can and try to keep her mind as active as we can. A day at a time, and every day a blessing.

I will make my own enquiries about our local hospice. I used to be in contact with several of the nurses there as Cag attended their Day Care Centre for physio, but that was a about ten years ago. I have heard only glowing reports recently, but it has to be right for Cag, and offer more than I can give her here. I know that if I need a break, the door is open, and I only have to let our doctor or the nurses know. We shall see.

The end game...........

It's been a difficult week. I tried to write a post on Monday, but I could only manage a few words, and they didn't seem to make any sense.

Monday was a busy day. The phone was indeed red hot, but it all revolved around the visit of our doctor. I think even he was shocked when he saw Cag. He had the treatment information from the hospital and brief details of what had happened. He made me go over exactly what had happened when the paramedic was here, and was truly troubled when I told him the amount of time Cag had remained fitting, well over an hour.

Bottom line is that this is the 'end game'. Well into the fourth quarter with no 'time outs' remaining. The doctor said he would arrange for anything I wanted. Whether Cag was to go into hospice care or remain here, with me looking after her, and daily visits from nurses. I am happy with the second choice. It's really very little more than I have been doing for months, and with the extra help, I'm sure I can do what is needed.

The offer of hospice care will be always there, should things become too difficult, or if I were to need a few days respite for myself. I can see where this would be of use, especially if this more intensive care was needed long term.

The doctor is returning tomorrow or Friday, and I have a small list of questions for him. In the mean time, the nurses are calling and have been helpful, especially in oral hygiene, something that seems to be sadly lacking in hospitals. We've arranged bed changing for Friday, and sex on Mondays and Thursdays........................ only joking.

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Three of Cag's sisters came down for a visit today. It's her birthday on Friday. They came loaded with cards, flowers and good wishes for both of us. They managed only a few minutes with her and all left the bedroom in tears. I don't think Cag would have noticed very much as she has spent nearly all day asleep.

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I was really dreading it but managed to keep my control ..............well, most of the time. Our daughter phoned tonight. She and granddaughter will make the journey on Saturday. Another lumpy throat day to look forward to, but it is getting easier.

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The real thing that annoys me is that I have had fifteen years to work out how to play this chapter, and thought I had covered all eventualities, but I could not allow for the weight of sadness that I've felt the last few days.

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..........)(..........

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So, America has made it's choice, a right one I think.

Now keep him alive.

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Home............

An ambulance brought Cag home on Friday evening. It was their last drop and by then she was pretty exhausted. I did no more than change her, get her comfortable, then see to her liquid intake and later her feed. Everything else could wait until the next day.

Saturday brought with it the full realisation of her condition. Physically there is very little change, except that there is practically no flexibility in her arms, and they are trapped across her chest. She has managed one or two words but that soon became just a nod or a shake. The medication she is on seems to make her sleep most of the time, so perhaps this is a blessing. A Community Nurse called in the afternoon, to check on pressure sores, but she is very new to the job and did only what I asked her to do. She did say for me to contact our doctor for a visit on Monday, but that was already on my list of 'Must Do'.

I phoned a friend today, Sunday, a fellow M.S carer. Her husband is in a similar situation to Cag, and she confirmed that I must contact our doctor, the team leader of the nurses, and my own care coordinator, to set wheels in motion A.S.A.P.

I know I shall probably need some help, either that or grow another set of arms, because there is just not enough of me physically to do all that needs to be done. I can wash and change, do all the other little things which are needed during the day, but hair washing, bed changing etc, is going to need two people.

So it's a busy day tomorrow. The phone will be red hot. I've not been left with much, but what I have will be loved and cared for, for as long as necessary.

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I'm sorry I'm not visiting my usual Blogs at the moment, but I'm sure all will understand.
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First response..............and update.

I never expected Sunday to turn out as it did. Things had been going well for too long, and then life slips a Joker in the pack.

I'd just finished washing Cag and was about to get some fluid into her when I sensed there was something wrong. I looked at her, her eyes rolled up, her head went back and she had a fit. It lasted only a few minutes but in that time a paramedic was on his way.

Another few minutes and he was in the room with me. He began to check her over, then she went into a second fit. This time she did not recover and continued shaking until the second ambulance arrived. Then it was a dash to R.C.H. Truro.

I spent the afternoon with her in A & E but by then she was so drugged up to control the fit, I could do little but watch and wait. I got home about 6pm, just in time for a telephone call asking me to come back to the hospital. I expected bad news, but it was to go over the results of a CAT scan,then to update the doctors in the Medical Admissions Ward on her history, and what had actually happened.

There was been no obvious reason as to why it had happened. It could well have been caused by M.S, but other tests are needed to rule out all other possibilities.

Our daughter travelled from Torquay today and came with me to the hospital this afternoon. Cag's condition was no different from that of last night, but she was breathing without oxygen, and her colour was a little better. The Staff Nurse said she was showing some responsive signs but was still suffering the effects of the drugs given on the previous day.

I went back to the hospital tonight. Her eyes were open, but still only just conscious. She did, however, managed a few words, to complain about the noise the bedside machine was making. A more than positive sign and a good first response. She understood what I was saying and I even managed to get a smile before I left.

It will be a day or two yet before the damage that the fit has done can be fully confirmed. Hopefully her few communication skills with have survived but we must be thankful that she is here at all. It was that serious.

Sorry I can't finish on a more light hearted note tonight, but there will be other nights, and at least the few steps were in the right direction.

UPDATE............

It's taken 48 hours for the drugs to clear. Cag is responsive now but her speech is almost non-existent. The seizure seems to have done a lot of damage to the communication skills. The doctors are happy that they have done all that is possible, so they have started the procedure to get her home again. The sooner, the better............ for both of us.

I've done quite a bit of reading about what happened and it is not uncommon for this sort of seizure to go hand in hand with M.S. It may be a 'one off ' but it can be the start of more regular attacks. It's a case of wait and see.

Thank you for all your comments, they are truly appreciated.

Ahhh....choooooooo!

I've been fighting off a cold for the best part of a week. The usual sore throat, irritating cough, not feeling too bad during the day, but really making it's presence felt in the evening and at night. Cag doesn't seem to have joined me, a good thing, but I have been careful and tried to keep it all for myself.

Today has been a flap. Contacting nurses, waiting for them to get back to me, visit from a Physio, and then a further visit from one of the Community Nurses when I'd all but given up on her calling. Cag's been having problems with the actual PEG. Because it's an open wound, it wants to heal, and sometimes does this too well. Over granulation is the term. Easy enough to deal with, now I know what it is.

Not much help from the Physio I'm afraid. We are doing just about all we can, and just to stay where we are, swimming against the tide, is some form of progress. She's going to check with our doctor, to see if an increase in medication might help to loosen the limbs to allow more exercise. It's worth a try, but I'm getting very little response from Cag, as if she just can't be bothered. I wonder whether I should?

I go to pick up a new car tomorrow, a free one.............. I jest. It's supplied as part of Cag's disability package. She is entitled to a mobility allowance and that takes care of the lease on a car. I asked what car she would like and she said 'gold', so a gold car it is and I get to choose all the technical bits. A French car, made in Spain, with a German engine, and Cornish dice hanging from the rear view mirror! European co-operation at it's best!!

Thoughts and considerations............

I've taken advantage of the good weather over the weekend, to get out into the fresh air, do some walking and some thinking. I took the opportunity to walk around the estate, the hard way, through the fields now that the harvest is in, and was greeted by thousands of tiny, pale yellow, meadow violets. They had been hiding in the wheat. Now the sun can reach them, they, like me, were enjoying a beautiful day.

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So, what about the thoughts and consideration, and the decisions I mentioned in my last post. To Blog or not to Blog.......... that is the question. I must write, at least sometimes. It's what Late at Night was all about. Something for me............... and I need 'me things' in my life. That not being selfish, more practical, somewhere to unburden myself when things get a little strained.

I'll use Lighthouse as well, to post a few pictures and perhaps a few items that I find amusing in the press or come across during the day. One today was a Council who spent £5,000 on special notices in Braille to inform the blind what shoes they should wear when they play squash. The next time you see a blind person playing squash, please let me know!

It's going to be a long Winter, and it doesn't look like there will be very much contact from what remains of our family. I doubt whether Cag is going to be able to do very much in the way of travelling before Christmas, if then. So our life will become even more isolated, the way of most people dealing with a form of disability. She doesn't appear concerned, and seems to be happy in what she is doing, so I must leave it up to her to decide when she wants to rejoin society.

As for the economic situation the world is involved in, I'm not worried. I have enough money to last me for the rest of my life. Providing the end of the world is before next Tuesday.

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Serious considerations..............

From the few other Blogs I read, I see that several others are in the same sort of situation as myself. The 'Shall I?' or 'Shan't I?' situation. It's not the Blogging doesn't 'do it' for me anymore, it's because other things in my life have move up the priority ladder, and my thoughts and attentions have been travelling in their direction. So serious consideration is called for about where do I go from here?



I accept the situation we now find ourselves in. I'm not disappointed for myself. I can find joy and laughter in the simplest of things, but I am saddened by my wife's condition. I'm sure with a little more fight, things could be so much better and more interesting for her, but there is no spirit there, just a greater acceptance than mine. So this is the best it can get, unless a miracle ............. ah! a good old miracle. That's what we need.



The good news is, the Remoska is brilliant. Another week of running the freezer contents down, then I should be able to use it every day. I roasted a selection of vegetables last night. The best I've ever tasted.................................

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.................................... not quite finished, but you get the idea.

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A moment of madness and I baked bread this afternoon, my first attempt. No, I haven't tasted it yet. That event will be at breakfast tomorrow. It's a shame that Cag can't get involved, but she shows no sign of being even slightly interested. It's beige goo for her again tonight.

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Back to the original subject, where to go from here. Perhaps a clear out, re-naming, a new direction??? Re-invention, is that the answer? Others can do it, so I'm sure I can. Yep! A time for serious consideration.

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UPDATE..........

The bread could have been a little lighter, but I know where I went wrong. It's still very edible and no worse than some I have tasted from our local Supermarket. So, if at first you don't succeed ............... you know the rest.