Greetings..........

Just a quick note to wish everyone.............

Merry Christmas and a happy, healthy and prosperous 2009.

Love, IanS.

Out and about............

It's been a wonderful weekend, weather wise. I've skipped out for a couple of afternoons to take trips to the coast, only a few miles away, but seldom visited in the last few years. The sun was warm, but a cutting breeze did what was needed to blow away the cobwebs.
.

It's been a dozen years or more since I've been on the harbour side at Mevagissy. There are far fewer working boats now than there were, and very few pleasure or visiting craft at this time of the year.

.

From Mev I ventured further along the coast to Gorran Haven and Vault Beach. There's a gated roadway that runs along the top of the beach for Coast Guard use, and I have memories of sexual harassment there one very warm after noon.............. but I didn't complain. It's a nudist beach on warmer days, but there wasn't a goose pimple in sight.

.

Next stop Carhayes Castle, hiding in the trees, with the lake full of water birds. Pheasants from the Estate were also making an appearance................. but I didn't manage to 'bag' one on this trip.

The beach at Carhayes was empty, and even in summer there's usually plenty of room. No brave dog walkers today, just a small number of cars, enjoying the view.

A little further on, Port Holland, a few cottages, two other people, and me with my camera. Beautiful views and solitude, something I've had precious little of in the last years since mobility became a problem. It's lead me to a decision, a need for some more appropriate footwear. Town shoes, mud and wet rocks are not a good combination, So a 'call in' at the Sunday Market on the way home has solved that problem. Walking boots and thick socks.

I shall be going back, but in the mean time, there are people to see, places to be, maidens to rescue, dragons to slay, varlets to vanquish, prayers to pray.

.

Step right up............

“Step right up folks. Welcome to The Roller Coaster of Life……… climb aboard……………. take your seats…………. hold on very tight. Nobody get off ‘till the end of the ride.”

……………………….. and that’s been rather like the last two weeks for me. Ups, downs, sudden tight curves………………….. and a corkscrew twist, just before the last bend.

…………………………but I’m through it, and have some how reached the other side. Yes, I’m lost at times, angry at other times, and still not sure what I should be feeling. I’m told the pain never really goes away, and I’m more than ready to believe that. I hope I am able eventually to put my feelings into a box and only open it when I have the strength to deal with them.

For now, I’m content to see out the remnants of 2008 and hopefully make something of a new start in the New Year.

Those wishes I made so many years ago in my teens. To retire at 45, have 20 good years, then go back to work at 65. Well I’m not 65 yet, but in future I shall be careful what I wish for. I may just get it !

The sad news...............

Just to let you know some very sad news about Cag.

She passed peacefully away on Thursday 20th November at about 9.45pm. She had endured a very difficult year, culminating with a massive M.S related seizure about three weeks ago. She never really recovered from this and has steadily declined since then. She was well cared for at home with the help of the MacMillan Service and the Community Nurses. She was unaware of her serious condition and slept quietly away while I was holding her.

Sorry to have to be the barer of such bad news but I thought you would want to know.

My very best wishes,

.............................. I thought this was the best way to let friends know, so I've copied the email for you all to see. I'm having a little time for myself over the next couple of days and will have to get back to the reality of life next week. Should be interesting.

The third week.....

Is it really the third week? It seems like only a few days since Cag returned from hospital........ or a life time. The new week saw the turning point, from a little recognition, to coma. Monday, perhaps a little smile, but nothing since. Her breathing is fast and shallow, hesitant at times, then starting again. There can't be much longer to wait. I pray not.

The Liverpool Care Pathway sucks. It was designed to maintain a level of hospice care within the home. It seems to me to fulfill all that is required by the law, but lacks the true compassion to the patient. I watch the golden liquid of life draining into a bag at the bottom of the bed, see all the body mass disappearing, to leave bones draped in it's covering of skin. Not much dignity in that.

Strangely, I'm finding it a little easier to deal with. Perhaps it's the anger or perhaps it's seeing others dealing with their grief. Like the families of the fallen watching their loved ones coming home from war. It's certainly brought new thoughts of 'tears and handkerchiefs' home to me.

I am thinking about the future. Making a few tentative plans. A little 'me' time to find out who I am, and if I'm the same person I thought I was. I shall start to make inquiries tomorrow about possible income, as everything has been based around Cag's situation. I've bought a small car, as our five week old Motability car will have to be returned, and Cornwall without a car is not an option. So a few blocks are being put in place.

I'm dreading 'the arrangements' but simplicity will be the order of the day. Neither of us would want black horses or long faces. It just one more day. One broken spoke on the wheel of life.

The Final Countdown............

The Final Countdown.................

The MacMillan nurse call on Wednesday. Dawn, her name, the start of a new day, or the bringer of tidings? She was very Totnessy, and if you know the town of Totnes in Devon, you would know what I mean. All cargo pants, tie-dye top, nose stud and hand made multi coloured shoes............. but a very nice lady. She did not pull any punches. She explained the situations and possible ways forward, but the end result was the same.

Today, Thursday, and I collected the necessary medication from the chemist. It's called The Liverpool Pathway. I shall pity the poor people of Liverpool for ever more. The nurse that came this afternoon was a little confused, but had all the necessary equipment and so set the wheels in motion, after my full agreement. Soon after she had started the doctor arrived, approved of my decision and said that he would be in touch later.

It was only when the MacMillan nurse phone, to see if I had collected the medication, that we found we had 'jumped the gun', and that the final countdown wasn't due to start until after the weekend ................ but it doesn't matter. There are no other options. Today, tomorrow, next week, the outcome will be the same, and I'm only too pleased to get this part of the terrible journey over with.

Tonight I stop the feeding and the liquid intake, so the term "It's just a matter of time" will then have it's true meaning. It's one of Cag's sisters birthdays, the 50th, on Monday. I do hope we don't spoil the day for her.

"And I dance, on the brink of an unknown future, to an echo from a vanishing past".

Into week two........

Into week two, and spent the day pacing. After washing and changing Cag in the morning, there's very little to do except sit and watch. The weather has been dreadful, so even a walk around the garden wasn't possible. Cag's had a couple of choking episodes today, unable to clear her throat, stopping her breathing.............. frightening........... for both of us.

Our daughter and granddaughter came down on Saturday. It was a good day, and Cag managed a smile. She's been asleep since then, eyes open only briefly, but there's nothing there.

There was a meeting at the Surgery today, to discus the way forward with Cag's care.I will probably hear all when the nurse calls tomorrow morning. Dawn, a MacMillan nurse phoned this afternoon. She's calling on Wednesday afternoon. She said she would be waring a badge and a smile. "Anything else?" I asked.

I've heard they will be arranging for certain medications to be available here at home. To save them rushing around looking for things if needed. I can guess what it will be, but if Cag's breathing deteriorates too much, I can see hospice care being suggested. It's only five minutes away. Wonder what the rest of the week will bring.

Me? I'm O.K. Lumpy throat at times, annoyed I can't do more, wondering about the future, trying to keep busy, all sorts of emotions. Dreading some of the plans I will have to make............. but I'm O.K.......... ish.

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.

.

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

.

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.

.

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.

.

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.

.

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

.

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

Now keep him alive.

.

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.

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

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.

.

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.

.

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.................................

.

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

.

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.

.

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.

.

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.

Where have I been?

Last published September 7th....................... I know, I should be ashamed of myself. I, like so many others, seemed to have found myself in one of those 'looking for something new' situations. My life, since my wife returned from the hospital, has settled into an easily managed routine. The only addition to our needs has come from a neighbour who's husband has had a major bowel operation. I've been taking her shopping twice a week, and lending her an ear, oh boy, have I been lending an ear!

I'm accepting that probably now is the best that it will get with Cag's situation. Not quite in the 'last stages' of M.S but any setback now could be very serious. I don't think she has the strength to fight anymore. She has not given up and will not give up, but there is only so much a person can take. Perhaps the next dealer will bring more luck.

I've set myself a challenge. To cook with a Remoska. ( I can hear the question from here! Try Google). I've known about them for years and recently a few neighbours have 'invested' in them, with varied results. Most swear by them. Another used it once, blew the fuse, and plunged his home into darkness. He over filled it, it boiled over, and he has been afraid to use it since.

I mentioned that I was interested in one and he gladly offered me the whole kit, with two unused recipe books, for well under half price. I reluctantly agreed. I've taken it to bits, checked it over, and now it's ready to go............................... and after a weekend of scanning the Net, I will be too.

I find myself in the same situation as many single and elderly people, now that I only have to look to my own needs for food. I have a good breakfast, but I only have main meal during the day, around 6.30pm. I've been through the packets, the tins and the prepared meals over the last few months. Now I need to stretch myself, and get back to the joy I used to find in cooking. I look forward to it.

Note. Must watch Jamie Oliver next week.

Nearly a week.........

It's been nearly a week since I last posted, a week of ups and downs. Generally, we are both fine, but that's not to say there haven't been problems.

The main difficulty this week has been Cag coughing about two thirds into her feed, around five in the morning (I feed Cag over night). I thought it may have been due to the different formula, one that she had tried in hospital, upsetting her, but I am now of the opinion that a ten hour feed may be too long.

I split the feed last night. I had to stop the feed around 700mls, flushed, then let Cag sleep for a couple of hours, and restarted the feed around 8am for a further two hours. That still left about 100ml short but I put that in manually with a syringe later. It seems to work, but I will check it out with the dietitian first thing in the morning, just to make sure it's O.K.

We had a visit from the PEG nurse this week. It was her first time in the area, so she was late, not being able to find us. She told, and showed me all the things I should have been instructed in while Cag was in hospital, so I'm a lot more confident in the whole system now, providing we can get this coughing sorted out.

Wednesday saw a visit from the outlaws, two of Cag's sisters. They came baring gifts, red wine and sticky coffee cake............ the perfect combination............ well I thought so! They hadn't seen her since she left hospital and were full of praise about how well she looked. Her skin is so much clearer and her hair shines, but not with hospital gained grease. Her colour is also very much better, with even a little rosiness in her cheeks. It's wonderful what a couple pints of beige soup and H2O can achieve. Wonder If Gordon Ramsey knows?

As for the rest of the problems, the pressure sores are on the mend, and I think I am going to have to accept that the limbs are never going to be as they were. We must make the best of what we have.

Sleeping on two feet..........

I've been expecting all sorts of verbal chastisement for my failure to post since August 22nd. No excuses, I've been about, but have had very little to say about the last couple of weeks.

We've settled into a rather confused routine. Confused for me because doesn't seem to fit my body clock, and confused for Cag because she really doesn't know what is happening at times.

I am disappointed about the physical condition Cag was sent home in from the hospital. The retraction in her limbs is causing problems with lifting and shifting. Hopefully a little bending and stretching will gradually put this right over the next few weeks. Cag is also suffering some skin deterioration around the base of the spine. Not quite pressure sores, but could easily become so if not treated. Hence the sleeping on two feet.

Our Community Nurse has supplied an inflatable pressure mattress for Cag, which takes up over half the bed, and the 'two feet' is all that is left for me. It's back to dressings three times a week, but I feel happier having the closer contact with the nurses, especially in these early days.

Everything else seems to be working out O.K. Cag's put on a little weight, about 2lbs in the last week, and that's fine. The feed has to be adjusted. A little too much fibre, if you get my meaning, but that's very much trial and error. Apart from that, she's looking fine. Hair shinning and skin clear, with a good colour. Must be the beige soup.

One of my neighbours did leave me speechless a day or two ago. I mentioned about the beige soup that Cag was on, to which he replied that I must be saving a fortune, not having to buy food by getting it by prescription!

Friday...............

I can't believe it's Friday already. Some parts of the week have really dragged, while at other times it's just flown by. The good news is that everything came together today.

The PEG nurse had phoned the next morning to make sure I was happy to do the feeds on my own. Today the dietitian called, to fill in a few gaps and to answer a couple of questions I had dropped on the PEG nurse. At least they talk to each other.

The food suppliers phoned and have arranged to deliver a months supply of the 'beige chemical soup' on Wednesday of next week. Finally, Tina, one of the community nurses asked if she could drop in on us to sort out what was needed from them and what back up they would be able to supply. She had been visiting my cousin, who lives two doors away, so it was a case of killing two 'old birds' with one stone.

I felt a lot happier after seeing Tina. She's known Cag for over five years and doesn't have to ask the questions that other would ask. She checked her out physically and told me what I must work on as far as physio is concerned, and what other problems to watch out for. So the future looks a little more rosy than it did a day or two ago.

It very much depends on Cag, and just how much effort she can and will put into her own recovery. It's not been a great deal in the past, but she is at a stage where choices soon will be taken out of her hands, and there will be no way back. I will do my bit. What else is there for me to do? At least I know there are others who can help.

On a happier note, I'm going to win £14 million tomorrow.................. well at least I've bought a ticket!

Home......... at last.

It should have been yesterday. The discharge had been approved by the doctors after their morning round. Everything that could be achieved in hospital had been done. It was now a case of regular feeding and encouragement to eat a little by mouth.

A Monday morning is not the best time to try to arrange all that was needed, and as some of the equipment would not be there until later in the afternoon, so I was asked to collect Cag at eleven o'clock this morning. She would be dressed and ready................ and she was.

I was expecting a change in Cag, and of course there is. She's not so mentally alert or as physically strong as she was. Five weeks of doing nothing has taken it's toll. It's now up to me, us, to work with what we have and try for some improvement. Not an easy task with M.S.

I did feel sorry for her travelling home. I was sure there had been 'an accident'. One has a nose for this sort of thing. Sure enough, the hospital sent her home with a little surprise for me. I'm pretty sure she had been dosed with Senna, probably last night. It's not the first time I have heard of this. Of course, she wouldn't know. It's so easy to do through the PEG......... but a little warning would have been appreciated.

I've just finished setting up the over night feed. I've made about all the mistakes it was possible to make, but thankfully I did it here and not when 'the eyes' were on me. Cag is still a little confused, and still can't quite believe she is home. I see her glancing around, just making sure she is where she wants to be. Now the work begins, the physical and the mental.

Beats working for a living!

Wednesday the 13th............

Thirteen, unlucky for some, but not us thank goodness. Cag has had the PEG fitted and all went well, very well. It really is a neat job, a small white plastic clip with the feeding tube running from it. Long enough so as not to be felt when the connection is made but easy to gather up when not in use.

Today, Thursday, Cag was very 'out of it'. It might have been a reaction to the operation but I'm guessing that the stay in hospital has treated her mind less well than I had hoped for. I saw the doctor about my fears and she thinks that she will probably recover her spirit after a few days at home, but I have doubts.

The Staff Nurse arrived, just before I was due to leave, and asked me to watch how the feed was prepared and administered. It took minutes. A machine delivers the feed, the correct amount, over a given time, usually done at night, so the recipient doesn't even know that the feed is taking place. Easy! I had asked Cag earlier if she had received anything via the PEG during the day, and she said she hadn't. The charts showed a different story, so she hadn't even realised she had been fed.

It's my turn tomorrow, with the nurse standing by and giving instructions. The next day it will be totally my turn, with all eyes on how I do, and if that satisfies the eyes, Cag may be allowed home on Monday.......... but if it's a day later or so, then that's O.K as well.

I understand it can be used for wine. Might even ask if I can have one............. but I like to taste too much, so that wouldn't work. But seriously, it will take adjustments on both our parts. I know I can handle what life brings, and I only hope Cag can cope with what comes her way.

Horizon in sight?

For a Monday, it's been very positive. I was told last week that the PEG operation was down for this week. It was confirmed today. It will be tomorrow morning.

I saw the doctors this afternoon and signed the permission form on Cag's behalf. I did ask her once again is she was sure and she said that she wasn't, but there is no other option, and I did get her agreement finally. The doctor explained about the risks, the same as with any procedure, but really we have no other choice.

Providing everything goes well, she will be back on the Ward by 2 p.m. A few days for the PEG to settle down, to make sure it's working well, and then Cag can come home. Next Monday being the aim.

The rest of my visit was taken up with an interview with an Occupational Terrorist .......... I mean Therapist, who was checking if we needed any additional support when Cag gets home. Later we saw the Physio Therapist, who wanted to see how I managed to move Cag without the aid of a hoist. I lifted her out of bed, into her chair, and then a few minutes later returned her to the bed. No problem. I still doubt if she weighs more than 38 kilo, even with 4 weeks of feeding.

So now it's more waiting, but at least we have a date in sight, and something to look forward to. I still wonder what they will be sending home to me, but it's got to be better than the last four weeks. I'll keep you posted. X

It still goes on........

I'm still driving daily to and from Truro to see Carole each afternoon. She's on a 1000 cals a day drip, plus whatever other food she will take orally. Without the drip I'm sure she wouldn't be here now. Her kidneys were very close to stopping work, which would have more than serious for someone with M.S. There would have been very little anyone could have done.

I managed to see the doctor today. They are so young, but seem to know what they are doing. She asked how Carole and I felt about having a peg, a stomach feeding tube fitted. I had only just finished telling Carole that as far as I could see it was the only way she was going to get home any time soon. Carole said 'yes' to the doctor straight away and I said I was all for it. It would take the pressure off both of us. She, with needing to eat and drink, and me, seeing that she has sufficient to sustain her. It was not a road either of us wanted to travel, so hopefully it may only be temporary.

So now it a case of waiting for the job to be done. Hopefully I will see the dietitian tomorrow and be able to discuss with her just exactly what Carole will be able to eat. Whether it will need to be a puree or just a soft diet. When and how to use the peg, and whether it will be a manual or mechanical method of feeding. All good stuff!

Apart from that, every thing is fine. I'm up to my eyes in peas and three types of beans. This rain has certainly done our garden a bit of good. I also took a trip out to the Citroen dealership today to arrange for delivery of the new car for October. Of course, they've changed the model and the price has gone up, only to be expected, but every thing's set now and wheels are in motion.................. so to speak.

I really can't wait for things to get back to normal, but I'm afraid that life will never be quite the same again. There is always a price to pay, but lets hope that the cost to our lives is within reason.

Requested update...........

The progress has been slow, very slow at times. A few ounces gained and then a few lost. At last today some more positive news.

Cag was sat out today when I got to the ward, the first time. They had weighed her then left her in the chair rather than putting her back in bed. She is still very weak and about an hour was all she could manage, but It's a start. I managed to catch the Ward Sister and asked about plans as I need to let certain people know regarding the benefits we receive.

The Sister said that they were increasing the feeds by tube and increasing the amount Carole was taking orally. There was a possibility that she could be moved to our local hospital early next week but that would depend on bed availability. Progress was steady but she thought that Carole would be in hospital care for about another three weeks.

The Dietitian dropped in just before I left and she confirmed what the Sister had told me. She said that a PEG, a stomach feeding tube, was being considered, not so much for the food but to assist with liquid intake. Food in a puree state is easy to swallow, but a liquid can be difficult. It often goes down the wrong way.

Cag won't like it, but it would take a lot of responsibility and worry off me. I would hate to think she would slip back to what she was doing when she finally gets home, and knowing her, I could see that happening.

Now the question that is in my mind. Who will they send home to me? Not the person that went into hospital, mentally or physically. Her mind now is even more fragile than it was three weeks ago, and I can see that much of what she used to be able to achieve is now history.

Any set back for a person with M.S is serious. 'If you don't use it you loose it' applies even more to an M.S sufferer. It doesn't worry me. I know I will be able to deal with what they leave me but I'm so disappointed for Cag. When you have so little, every loss no matter how small is precious.

.

Happier days............ when striped pullovers were in!

A Mixed Weekend..............

There's been a little change in our situation. A step forward, one back, then a little shuffle forward again. I managed to see the dietitian, and the consultant on Friday. The dietitian said that they would continue what they were doing in the way of feeding until after the weekend, then start to increase the intake a little at a time. The consultant was positive, but said that progress would be slow. We can live with that.

Saturday brought a surprise. Cag had managed to pull out her feeding tube over night. She was a little brighter but still very pale. The nurses were doing hourly feeds, with small amounts fortified desserts and thickened shakes, rather than replacing the tube right away. Cag was managing but I could see she was not happy. Her hands were very swollen, but that was due to the re hydration, and it should right itself as soon as she recovers a little more.

I really didn't know what to expect today. I wasn't surprised to see the feeding tube had been replaced. I understand there was quite a bit of coercion but finally Cag agreed. She was waiting for an X-ray to make sure the tube was in the right place before they could start feeding, and was still taking small amounts of food orally. I even managed tempt her with some soft chocolate.

She's bored and complaining, so I know she is a little better. And spending money! Strange how a woman can be very ill, in hospital, and still spend money. So hopefully the progress may not be as slow as the 'powers that be' thought. You know what retail therapy can achieve. We can but hope.

Shape of things to come...........

It was the first day of visiting now Cag has been settled and is out of the admissions ward. It was a bit of a shock. She really looks very poorly. She was asleep when I arrived, head to one side, tubes and drips, and looking very pale.

She did brighten up when she knew I was there but soon drifted back into sleep again. The speech therapist arrived later and woke her to do a swallowing test. She managed but only just. Later on, a young girl, who said she was a doctor, came to take blood. She asked about Cag's history, medication she was on, and generally how she coped with life. She seemed to know a lot more than her years, but admitted she knew very little about M.S. She did say that it was going to be a long job, so not to expect very much, at least in the short term.

It seems the information I was given yesterday about it taking about three weeks may have been optimistic to say the least. I did my usual rounds of phoning the family when I arrived home, to pass on what little more news I could. They have all offered to come and visit, but there is little point as yet until the re hydration and feeding have had some chance to work. Hopefully soon, very soon.

And now a thought for the day. A woman should always marry an archaeologist. The older she gets, the more interested he becomes. Are there any women archaeologist out there? ;-)

The bad news and the bad news....

Cag was admitted to hospital last night. She had a difficult day, and had a couple of bouts of not being able to clear her chest, coughing, almost choking. I was not happy about her situation so called the emergency doctor. He checked her over and phoned for an ambulance, saying that she ought to be looked at in hospital, the sooner the better.

I phoned this morning to find out how she was and was asked to go to the hospital to meet with the doctor, as she was refusing medical intervention. I was there by 10.30am but was unable to see the doctor until about 2pm, because of other emergencies. It gave me time to work on Cag and to get her to agree to accept examination and treatment. All she wanted to do was to come home, but if she does she will die, pure and simple.

She is now on a drip and has a feeding tube fitted, and I heard tonight that she has taken a small amount of nourishment this way. I talked with the dietitian before I left this evening and she asked me how heavy Cag was. I knew because I had weighed her on Sunday............ 32 kilos, about 5 stone. She did warn me that this was borderline and that feeding would have to be small and often. It may take three weeks or more to see an improvement, but at least something is being done ........ at last.

Cag is not the best patient. She is hating every minute of it, but I know I have done all I can here and she needs the sort of help the she can only receive where she is. I can't help feeling guilty at allowing her to go into hospital, but the alternative is unthinkable.

I wonder what tomorrow will bring?

I'll get back to you..........

"I'll get back to you........." Oh how I hate those words, because it usually means you'll be hanging on and waiting for a telephone call that may never come. That's what the week has been like for me.

Yesterday, I'd had enough. Cag's eating problem has not been improving, no matter how hard we try, and we DO try. It's now a case of just a couple of spoon fulls of mousse, or sips of coffee, will set her choking, then urging, and then of course, she won't take any more. Her total daily intake of calories must be under 200 and liquid consumption below a pint. This situation can not go on. I phoned the doctor's receptionist and demanded a visit.

I was hoping for something a little more positive but there has been, perhaps, a little progress. The 'practice matron' called to see Carole. (Where do they get these names?) Needless to say, the name was Chris and HE was a tiny bit gay.

He arrived 45 minutes late, just as I was about to get Cag back to bed. She had been up an hour and was failing fast. He was one of these ........ "How are you feeling"................. leaning forward............... " how are you REALLY feeling?" type of people. To which Cag answered "Fine!"

He checked out her swallowing and he said that he thought it was o.k. Then he generally questioned her about how she felt about food, wanting to eat or not. Checked her for depression, cup half full or half empty sort of questions, then asked her directly if she felt depressed. Of course she said "No".

He brought with him a selection of high calorie drinks and mousse style deserts for her to try. She said she would try, and I said I would encourage her....... but I'm not holding my breath.

He's made arrangements to call again next Thursday, along with a speech therapist ( she's into swallowing and breathing techniques ), who he thinks may be able to help. I'm not very impressed with the idea, but we shall see.

So now it depends on Cag, how much she wants to do. Wish I was more excited about the prospects, but I can only do what she will let me. More waiting, more worrying.



Never mind. My new gin and tonic diet is working great. I've lost four days this week.

Great tits............

At last, the children have come to the table. Our little feathered friend have brought along their offspring to show them where to get food, and what to do with it. Last year it was the robins and dunnocks, but it was the great tits, followed by their smaller cousins, that graced our bird table first.

.

.

A young blackbird took up position this afternoon and tried to keep the table as his sole domain. It showed no fear even when I went in close with the camera.

.

...........................................

.

I was expecting another phone call from the doctor this afternoon, but it didn't happen. I had managed to get in contact with the M.S nurse to discuss the best way forward for Cag. I was under the impression, as was the doctor, that she would be able to make a home visit, but this is not the case. She has nearly 700 people with M.S on her books and the only way she physically can be of help to them is by running a clinic at the County Hospital. If she were to make house calls she would only be able to help a small number, much smaller than if the person was to visit her.

.

She is having an assistant appointed, who will be able to cover the home calls but that won't be for several weeks. We will be on her list. The nurse was going to contact our doctor with this information, so I thought he may have called........ silly me!

.

We did discuss Cag's situation and she is of the same opinion, that the problem, although M.S related, is being caused by depression. She suggested I go back to the doctor and for him to visit to check things over with this in mind.

.

Cag has asked me to belay that for a few more days to see if she can shake the feeling herself, but there was not a lot of progress if today was anything to go by.............. but we shall keep trying.

A reminder.......

I've been reminded that I haven't posted for quite a while. Well, I've been here, reading and searching but not really in the mood to put my thinking head on. I've put up a couple of entries on my other blogs, simple things, but my mind has been elsewhere.

Cags condition is causing a lot of concern. She's not eating enough, three to four hundred calories a day, and her liquid intake has dropped to a little over a pint. We've been waiting all week for a contact from the M.S nurse, even phoning the doctor again on Wednesday, getting him to re-fax information to her office. If there is no contact by Monday afternoon I will have to rattle some cages.

I'm not sure it's all to do with M.S. She has been very down recently. It usually happens at this time of the year, but there's no reason you can put forward for why. She has got swallowing problems, and has difficulty chewing, but I don't think these are the only reasons. I can see the need for a liquid food diet and even the possibility of tube feeding at some time, but hopefully not quite yet.

I half know what the nurses suggestion will be, high calorie booster drinks. Thick syrupy ill tasting things, that might look good on paper, for those who have never had to take them. Then will come the next problem, what will Cag take? She's always been picky what she eats, doesn't like this, or that, so there's going to be quite a challenge. Hates soup, hates milk, eggs, meat, gone off fish, vegetables, even chocolate. Quite a challenge!

Thing could be worse, I keep thinking of the situation if my mother had still been with us. I know I would have caved in under the strain. There is no way I could have gone through the operation and been able to look after two people. I'm finding my limitations, ones I thought I would never have.

I'm not a poetic person but...........

I found this little poem in my daily paper and it rather stuck a chord with me so I thought I would share it with you........

The Kiss

.

"What other men have dared, I dare,"

He said. "I'm daring too:

And tho' they told me to beware,

One kiss I'll take from you."

.

"Did I say one? Forgive me dear;

That was a grave mistake,

For when I've taken one, I fear,

One hundred more I'll take."

.

"Tis sweet one kiss from you to win,

But stop there? Oh no!

One kiss is only the begin;

There is no end you know."

.

The maiden arose from where she sat

And gently raised her head:

"No man has ever talked like that-

You may begin," she said.

.

Thomas Masson 1866-1934

Friday the thirteenth............

What have we done to deserve all this good weather. True, it's been a little chilly out of the sun today, a breeze from the N.W has seen to that. June has been turning out to be our best month so far. Makes me wish I was on holiday!

There's been very little improvement in Cag's situation. It's not swallowing difficulties but more a reflex action after the food is down. She takes a few moth fulls, and then is unable to eat any more without feeling sick. I rang someone I know who's husband has M.S and she recommended I contact the M.S nurse for the area.

It's meant going through our doctor, for him to make a referral, but that was not a problem, and he was already suggesting it before I asked. So we are down for a visit at the beginning of next week, for the nurse to set up a programme of support and advice. Sounds good, hope it works.

I know it's Friday 13th, and I'm not superstitious....... touch wood, but one or two thing did go wrong for me today. I found that a tin of Brasso had leaked in the car and it's taken most of the day to loose the smell. A milk container had somehow fallen over in the fridge and the shelf was full of milk. I knock the spoon in the sugar bowl, it catapulted sugar everywhere and the postman took £10.60 of me for Customs Duty and handling charge for a package from America. I've got my fingers cross that nothing else will go wrong today. There's still 29 minutes to go.

Some excitement...........

There were police cars in the drive way when I went to fetch the papers this morning. I found out at the shop that a lady on our estate had gone missing. It appears she had rushed out of the home in a state of great agitation and was last seen disappearing into the woodland at the end of the road.

By the time I had returned home, dog handlers had arrived and a little later a helicopter joined the search. By mid morning several members of the Cornish Rescue Team had kitted themselves up and started combing the woods and paths.

It appears that the lady suffers with a mental problem and she hadn't been taking her medication. Her husband, who is less than useless, didn't notice any change in the way she was acting, although several neighbours said that she had been behaving strangely for the last few days.

.

She was found around mid afternoon, about two miles away, on a cycle path leading to the coast. Still very distressed and in quite a mess.

.

I haven't heard any more other than she was taken to hospital to be checked over and to sort out her medication. I expect the paper shop will be able to fill in all the details tomorrow.

.

It's the County Show this weekend, so although good weather has been forecast, we can expect rain. It always rains for the Show.

Caught out..........

No posts for over a week. Yep! I've been caught out............. but I'm not the only one. I seem to be in good company, because my daily visits to favourite blogs have also produced very little reading. I have an excuse........... if only I could think of what it is!!!

We have had problems. My recovery has gone very well. Still a little sore at times, but I can live with that. I wish it were the same for Cag. I knew there may be difficulties if our routine was disrupted and sure enough Cag has re-developed an eating problem. She has 'gone off' food.

It's happened before, several times before, and there's very little one can do about it. Her appetite will return, usually in a few weeks, but it can be quite worrying when it happens. She's been living off a grilled tomato, half a peach and about four cups of coffee a day. Thankfully, in the last two days, we've been able to add a ham sandwich, eaten in two sittings to the fruit, so I'm hoping the little progress made will grow.

I think it's a combination of swallowing difficulties due to M.S and the mind. She has so little control over her life that the one way she can control what is happening is in eating. A temporary form of Anorexia perhaps? On previous occasions the doctor has prescribed tablets, which she won't take, and special high calorie drinks, which are ghastly. So it's progress in small steps for now, and fingers crossed that every thing will be back to normal soon.

We watched with interest the programme about Mary Whitehouse the other night. We were very friendly with one of her nephews when we lived in Brixham. I met her husband, a very quiet gentleman, and her youngest son, Christopher. He contributed to a 'write up' in the Mail this week, and is portrayed very much as I remember him from all those years ago. It brought back happy memories of a happy and less complicated time of my life. It's good to have these little nudges on occasions.

Wednesday 20th........

They planted a neighbour today, or rather took him to the Crematorium for re-cycling. I felt more than sorry for the family. They had arranged for the few who attended the service to come back to the house for a glass of something and a nibble or two, but today was the day workmen chose to start hedge trimming and shredding right below the house. The noise was horrendous. I expect it will be a day they all remember, in more ways than one.

We have been struggling for the past week. Cag has had catheter problems, and it's not been fun. She really didn't want to have it changed, it's most uncomfortable, but there was no other choice. Luckily we had a nurse who know what she was doing and it was all over in a flash. She didn't have any Instagel, a numbing gel that also lubricates, so I asked her if it would be a problem? "Not for me" she replied, "You'll be at the shouty end!"

New credit cards arrived this morning, to replace the 'compromised' ones. Cag can't wait to try them out, just to make sure they work. I bet she means mine!

Thursday....... nearly a week.

It's been nearly a week since I hit the 'create' tab............ and I don't feel very creative. There's been plenty happening around, but I seem to have been playing catch-up, trying, but unable to get ahead of the game.

We've lost a neighbour this week. He's been going down hill for months, with a series of complications caused by old age. The funeral is next week, but it looks as if it will be a private affair, close family only. I look around, and most of our neighbours are in their 70's and 80's so I suppose we had better get used to losses.

Speaking of losses, one of my Credit Cards has been compromised. I must praise the Bank. They picked up the problem within 24 hours, phone card top-ups in different parts of the country, then rang me straight away to querie the transactions. So I'm card less for a few days, probably a good thing!

I have managed to get Cag out this week, before the weather changed and the wet stuff returned. We went shopping and she saved £60! Now I have difficulty in understanding the logic of being able to spend money and yet save £60. This has got to be another example of the Mars/Venus syndrome. If I dwell on it for too long the pain in my head will return.

We are planning another trip to see Cag's sisters at the weekend all being well. They might have grandparent duties to take care of, which will mean a change of plans, so it will be a last minute decision. They usually make trifle for us, and I like trifle, so hopefully the trip will go ahead. I'll have to remind them................... about the trifle.

Friday........ the weekend cometh

I knew this would be a difficult day when the perforations disappeared on the toilet roll.

.

I had twinges yesterday but was it developed into neuralgia today and has been hitting me every few minutes for most of the day. It has begun to ease now but usually takes about three of four days to disappear completely. Just what I needed.

.

I don't know if it's the pain, but I've had some strange thoughts today. Juggling only becomes difficult when you use more than one ball.......................... silly things like that. I've even thought about applying on Cag's behalf, for her to become an astronaut in the European Space Programme. She has always wanted to be a star. This way, she would be half way there!

.

The one sensible thing we've managed today is deciding on a new car. The choice is very limited. Cag chooses the colour and I chose the engine size. The make and model is already decided by the fact that the Citroen Picasso is the easiest car to do wheelchair transfers. It's high, has no foot wells and plenty of room in the front seats. It will be our third Picasso and probably not the last.

.

The change is not due until October, but the order has to be placed a good 12 weeks before, and that's not all that far away. It also gives Cag time to change her mind. Women and colours!!!

.

Nearly midnight, and I'm going to have an early night. Cheers!

Wednesday 7th May

Tuesday, and the day went well. It was a rush, an early start, to get everything done before the hairdresser arrived. Then get Cag back to bed, and get myself ready for the trip to the clinic. I arrived with minutes to spare, was called straight in, and was out in about five minutes. Easy!

The surgeon was very pleased. I coughed in all the right places, and promised to ask for him again if I even needed to have the other side repaired. He said there was about a 30% chance that I would, and I thanked him for that good news!

The weather is absolutely wonderful today, so I took Cag to our favourite Garden Centre. I thought we may return with another orchid........ and I was not wrong! The day also gave me time to see how Cag was coping, now things are about back to normal.

The news is not good. It always happens after a set back. Other times it's been because of something happening to her, but this time it's been my little problem. There are things she could do a few months ago that she just can't manage now. Little things to help me with lifting, or being able to steady something with her hands. Being able to hold an item tightly has long gone, but I now have to move her fingers even for her to have a tissue in her hand.

She quickly gets tired, and will drop off to sleep at odd times during the day, something she would never do before my operation. The problem is that once a step back has been made, it can never be caught up with again, at least in Cag's case. 'Don't use it, lose it', comes to mind, but it's so true with her form of progressive M.S.

Anyway, summer is a'coming, and we shall do what we can, when we can. We are not looking too far into the future, just taking it a day at a time. The serious thing is, we're out of custard tarts, so it's shopping for me tomorrow. That's far enough to look forward.

May Bank Holiday.............

I hate Bank Holidays. They really mess up the week. I shall spend the next few days wondering what day it is........ and it won't be because of a senior moment!

Tomorrow is going to be a little hectic. An early start to get Cag up and breakfasted before the hair dresser arrives. Just enough time to get her back into bed before I have to leave for the Clinic for the surgeon to check his handy work. Then to the Post Office and Bank in the afternoon.

There wasn't going to be a trip to the Bank, but a slip up on E-Bay has made the journey necessary. I've bid for three pencils (Druckbleistifte) on German E-Bay and didn't realise that the seller didn't take PayPal, only Bank transfers. It's times like this that I wish I could speak another language............. but it would probably be the wrong one. I won them for a silly price and now fear the Bank charges may be more than the items and postage............ so we will see.

Gott sei Dank für Google Übersetzer (that really messed up Spell Check!))))

30th......... and ashamed!

Yes, ashamed............ well, a little ashamed. It's been six whole days since I hit the keyboard in this direction. Where did those days go?

Sunday saw us taking our first real trip for seven weeks, to see Cag's sisters at Bishopsteighton. The weather was iffy, the journey long, the company good fun. There was sherry trifle and chocolate cake................... and hundreds of pictures from their recent holiday in the Far East and Australia. Literally, over 300! Hmmmmmm.

A phone call on Monday from the vicar in Torquay brought the news of the death of my mother's best friend. Arrangements had already been planned , but unfortunately I shall not be able to attend the funeral. I'm disappointed, because her daughter had managed to travel from Oxford for my mother's funeral, and I would have liked to return the gesture. It would mean a 4 a.m start for us, so you can see why it's not possible.

Bet mum is saving her a seat at the great Bingo Hall in in the sky.

Monday afternoon and a Community Nurse called to do a reassessment on Cag's situation, with regard as to who would pay for the recent care package............ I knew it wouldn't be me. Same old questions, same old answers. Care details, toileting, feeding, general medical health etc, then more specific questions. Swallowing reflex, mental process, communication............. the more detailed, the sillier the answer.

Does she loose consciousness? Not willingly!
Does she struggle with things? Only the pillow over her face!
Does she drink a lot? No, she spills most of it!!!!!

Anyway, the cost will be picked up by Social Services, as expected, as the care given was physical and not medical. Just Social Services trying to wriggle out of paying again. Wish I was a Rate payer so I could be really miffed!

I'm afraid the last two days have been all bladder and bowels.............................. Don't ask! Thank God for short nails!!

24th...........

I've been missing for a couple of days. Just some fleeting visits to see how you all are. I've been feeling unusually tired and have fallen asleep with very little encouragement. I've managed to sleep through some of the best programmes of the week and woken up in time to see the rubbish.

I've been chasing Cag's disablement benefit today. We had a letter at the beginning of the week to notify us of a small increase and when it would be paid into our account. Of course it wasn't. After nearly an hour on the phone, I found that it had been paid into another account and not the one designated.

Who changed it, and for why, is a mystery. It was paid into the Post Office instead of our Bank account, an arrangement that had been revised about five years ago. Nice of them not to tell us! It's now been put right and hopefully all will be well next month.

I've started making plans for next week. A few jobs to catch up on after my forced 'holiday'. Nothing too strenuous. A little weeding and tidying, then starting a few beans to be planted out in May. I've some power washing to do around the patio but that will have to wait for another week or so. I did all the digging before my operation, so there's no heavy work to do. Just plant and watch 'um grow.

21st and second.....

Blogger has been playing up. I've had a couple of 'off days' where everything takes an age to load.......... and then occasionally doesn't. I've tried to read my favourites, and leave comments, but it's been frustratingly difficult. I expect no one has noticed, but if you had listened, you would have heard me using the 'F' word more than once.

I'm still wondering what to do about our telephone account. My I.S.P have marked it 'fully payed' again today, and there has still been no withdrawal from bank account. They don't even have a Direct Debit set up with my I.S.P even though I have supplied all the details........ twice. Who's paying? And can I transfer my electricity to the same account?

I'd like to think everything was back to normal ...........down there.......... but there is still an uncomfortable feeling at times, like a dull ache, which seems to act as a warning when I'm pushing it a little too much. I still have to be careful if I cough or sneeze suddenly. That hurts! So I'm being as careful as I can.

I've managed to get Cag out of the home today .................. carefully. It's been six weeks since she has seen the light of day, six stir crazy weeks! She's more than made up for it by choosing some dining room chairs at our favourite furniture store. I recon that all women must have a 'spend to make you happy' gene. She had certainly cheered up by the time we got home for coffee and custard tarts. If only it was always as easy as that.

Saturday 19th..........

Very remiss of me, not posting for such a long time, but I've had commitments in other directions.

I was contacted by a fellow GenesReunited member and asked about a family line that I wasn't very familiar with. It took me longer than I thought to gather the information he wanted and even then, it's left as many questions as answers. One of those times when a few questions to my mother may have filled in the gaps.......... if she had her 'thinking head' on.

It's also been a busy E-bay few days, several items I've been following all finishing at the same time. Nothing exciting, only pencils, but I did manage to pick up a couple of bargains........ I think.

It was the carers last day today, and Cag is over the moon. No more hoist. I will miss some of them, the sensible ones, but others I will be pleased to see the back of. Caring is not and should not be their business. Back to normal tomorrow....... if we can remember what that was.

I was amazed today. When I did my paper round, on my last call I picked up the post (usual rubbish) and took it in with me. The lady said she was hoping for her bus pass. Bus pass? But she never goes out! Or if she does it's taxi door to door.

"They've all got one," was her reply. I found out nearly all my neighbours have a pass, and not one of them has used a bus in the last five years. "But they're free," was her response to that one. Human nature is a funny thing. They feel they are missing out if they don't get something for nothing, even if they will never use it.

And speaking of neighbours............... we have a new one. A knight of the road. One of life's free spirits.

.

He spends his afternoons, if sunny, in a state of repose, on a bench a little way along the road from our estate entrance. He doesn't bother anyone, and no one bothers him. Goodness knows where he resides when the weather has a mood. The night time temperatures are still very low. Perhaps I should offer him our spare bedroom now my mother is no longer here........... or there again....... perhaps not.

!2th, 14th and 13th........

I know, I know, I've had a 'senior moment' with the dates. But the days have been so similar that anyone could get confused. We are longing for every thing to be back to normal..... and then some!

I've done some gentle lifting over the weekend. I've got Cag up in the afternoons for an hour, for coffee and custard tarts.......Mmmmm! She no weight, her eating habits have seen to that, so I think by the end of this week we will be able to do without the carers. It can't come too soon for one of us.

We had some more visits from Mr. Woody. We've not seen his mate for a few days so she may be sitting. I've checked the bushes behind the home for Dunnock nests, but it looks like they may have given us a miss this year. Can't say I blame them. Who would want neighbours like us?

I must get some reading done now. I've been missing out on certain Blogs. Too much happening on E-bay! Never thought I would be interested in such a thing, and still really don't understand how it all works. I'll have to take lessons from my brother-in-law when I get the chance. He seems to know what's what.......... at least about E-bay!!!

9th, 10th and 11th........

Days are running into one. They all seem the same, just waiting on other people, and time to go by until I am able to lift again.

I have had a little excitement though. I added our telephone service to my I.S.P, and set up the Direct Debit to take care of the charges. My I.S.P is quite happy that payments are being made .......... but no money is coming out of my bank account. I.S.P said it's my banks problem and bank said it was I.S.P's. Now where! Another payment is due on the 14th, so we shall see what happens then.

We've had visitors. A beautiful male woodpecker and on occasions his mate, both taking it in turns to grab a nut or two from our feeders..........

This is mister. You can tell by the little splash of red on the back of his head. His lady hasn't one. Cag has been thrilled to bits and has been keeping me informed of their antics all day.

I did notice a pair of goldfinches working their way through the gardens yesterday, but they didn't stop for long. We used to see flocks of twenty or thirty, feeding then flying, then settling to feed again, but that was a few years ago. Perhaps later in the year...... but I doubt it. All the other birds are busy at the food dish and feeders. Hopefully it won't be long before we see the result of their activities, when they bring their young to the table.

7th and 8th and warnings.....

It's been a Vivaldi day............. all four seasons. We've had everything, frost, rain, sunshine, hail, a biting wind, sunshine and more hail. Temperatures below freezing are promised for tonight. With clear skies, and the moon on it's back, it looks like the forecasters could be right.

My first warning is don't take weather forecasts from Seeker seriously. Summer just around the corner............ yeh, right!

The other warning is that Blogging can seriously damage your health. There was a small article in The Mail yesterday, which they had picked up from The New York Times, about the sudden death of two prolific Bloggers.

Russel Shaw, 60, of Fort Lauderdale had a heart attack, just months after his rival Marc Orchant, 50, had died of a massive coronary. It appears that Blog sites can pay up to £35,000 a year to writers, rewarding those whose material is popular and therefore brings in more advertising revenue.

Bloggers are swept into a relentless 24/7 competition to out do each other revealing new products or exposing corporate gaffes. One confessed, 'I haven't died yet' but added, 'At some point, I will have a nervous breakdown and be admitted to hospital, or something else will happen. This pressure is not sustainable.'

And I'm worried about only posting twice a week!

April 4th, 5th, and 6th.

O.K....... first it was every day, then every other day, and now it's twice a week. And I'm talking about Blogging!!!!

It's really because life has settled into........... a rut. We seem to be waiting on other people all the time. Calling to get Cag up, then coming back to put her into bed once more, and again later in the day. I am progressing but don't feel right about doing any heavy lifting just yet.

Time seems to pass so very slowly. It's must be mind blowing for Cag. At least I can get out of the home. She knows it will be another week, and probably a fortnight before we can get our lives back to anything like how they were.

I've had a call back to see the surgeon who did the operation (hope he didn't lose anything). It's not until May 6th but I'm sure it's just to check his handy work. They've sent me a questionnaire to fill out, with marks out of ten for this and that. A chance to get my own back for all that stinging!

One thing that has moved to the top of our wants list is a decent set on dinning room chairs. I've spent a lot of time sitting on chairs recently, rather than lounging in them. It didn't take me long to find out that when we changed our furniture last year, the chairs should have been replaced as well. We didn't like the chairs that would have matched our new units, so the hunt is on for something more suitable.

April 2nd and 3rd.............

We've got the April Fool jokes over with, although I did have a problem convincing one person I know that the flock of flying penguins shown on the news wasn't quite what it seemed.

Another smoke filled day yesterday, but the sun came out with a vengeance today. The wind dropped to a gentle northerly and carried the smoke across the valley, away from the homes. It was a doors and windows open sort of day, the best this year so far. The car showed 24c, about 75f, so it was me shopping in a T-shirt this afternoon. I half expected to see bikini tops being worn by the shoppers at the Supermarket, but thankfully the young ladies had more respect for my tired eyes.

I've arranged for the carers to reduce their hours next week. I've said that I will look after Cag's washing etc, if they will still do all the transferring. It's not difficult, no lifting, and I have the time. Cag would prefer it as I do a more thorough job than their 'lick and spit'. Might even get a 'thank you'.

I do wish she would be a little more adventurous with her eating habits. There are very few thing now that she will eat, and even then it's little more than half a dozen fork fulls. I do get a little put out having just spent over an hour preparing and cooking a meal to see so little being ate. I wonder if it's because she has so little control over her life, that she goes overboard on something she can control. I'll have to keep an eye on that.

Monday and April 1st.............

Start of a new week and a new me........... well, a repaired me. I've started doing my paper round to a few neighbours again. Something to do while I'm waiting for the carers and it keeps me up to date with the latest gossip.

The development on the adjoining site has started, or at least the land clearing. There's a massive bonfire which has bathed the estate in smoke for the second day running. Even with the windows closed, it still manages to seep in, not enough to be unpleasant, but you know it's there. Shame they didn't start last week as the northerly wind would have carried it away.

Bit of a mad day today. Carers were late, hairdresser was early, breakfast was a rush, then a dash to get to the chemist before they closed for lunch. Shopping this afternoon, not for very much, we've still got a freezer full that I stocked up with just in case I couldn't get around.

The news from Cag's mother is not too good. She's beginning to fall back into her old ways and is not looking after herself. She was let down over Easter when her carers missed her out on Saturday and Sunday, and that seems to have triggered this latest episode. There's nothing we can do, so it must be left to others.

These last couple of weeks have brought home to me how difficult it would have been if my own mother had still been with us. Difficult! It would have been impossible. I'm glad I did what I did and I was able make things easier for her, if only for a short while, but I can see why other might shy away from the responsibility, as some of Cag's sisters have.................. and I don't blame them.

Friday to Sunday.........

I was supposed to post last night, but it was beginning to get late when I finally completed all I had to do on line. Then there was losing an hour with the change to B.S.T, but how much better it is to have daylight well into the evening rather than having all the lights on at five o'clock in the afternoon.

I removed the final dressing today. The wound is fully healed and clean. If only the itching would stop. It's not the sort you can do anything about. A sign of everything getting back to normal...... hopefully.

I've still not touched a glass of wine, or any other alcohol, since before the operation. Is this the new me? I thought I might have lost some weight, so I hit the scales this morning. Yep, lost three pounds........... and am about forty pounds richer! We've a new car to order for October soon, so the extra cash will come in handy.

Our ex- neighbour in Torquay emailed last night, with news about the work being carried out on the old family home. It seems that it's being altered into two flats with mother and father living on the ground floor and daughter taking over the upstairs rooms. Two of the window have been bricked up, one to add more privacy to a bedroom, and a kitchen window, so that new units can be installed all along one wall. New windows, central heating and an extra W.C, completes the work so far. All work that was desperately needed.

It was a beautiful day today. Fine drying weather with a brisk but chilly wind. The promised rain arrived with the sunset and bathed the area in that strange yellow light against the dark grey clouds. I tried to photograph it but couldn't get the colour right. Perhaps another time.

Wednesday and Thursday......

As you can imagine, I've been taking it easy for the last two days. What with the extra tasks I completed on Tuesday, and the trip to get the dreaded staples removed, I fear I might have been pushing it a bit.

A neighbour who had the same operation two years ago told me that it hits harder the second week, just when you think you are on the mend. It's now when all the anesthetic has worn off, and the nerves are beginning to heal, that it lets you know it's there, especially first thing in the morning and late in the day when you're getting a little tired.

I'm waiting now for a recall, to see the surgeon, for him to check out his handy work. It's still quite swollen, which should reduce in time, so I'm hoping all is well. I think it is................

It was our anniversary today. Seven happy years................. and some so-so ones! No, seriously, I've been lucky..................... and Cag's been luckier............... seriously. Have you ever heard any husband be really truthful about anniversaries? I think not ;-)

Easter Monday and Tuesday..........

I am not a lover of Bank Holidays and I'm always glad to get them out of the way. Not that we were doing anything different this Easter, but it always seems like a lot of Sundays added together, and I'm not a Sunday person either.

Today has been different. Lots to do and places to go. A trip to the Post Office first thing, and as a result we are solvent for the week. Carers calling, washing to do and hang out on a beautiful sunny day, then my first shopping expedition for over a week. Not a lot to get and far enough for the first time.

3.20pm and an appointment with the Practice Nurse to remove the staples from the wound. I'd already removed most of the dressing to make it easier and quicker for the lady. I didn't recon with the staples. Nine popped out with ease, but number ten had some how crossed over and would not pull out.

Several tries, then another nurse was called. She tried but to no avail. More tools were brought. I suggested the Fire Service, their Station is just along the road. Then it started bleeding.

They did finally manage to get the 'little dear' out, then cleaned and patched up the area. The staple was unrecognisable, a bent and twisted piece of wire. Twenty five minutes to take out one staple. Did it hurt? Mmmmmm.... just a little.

An easy day tomorrow. Well, nothing could match today!

Good Friday, Saturday and Easter Sunday......

I was due to post last night, but blogging faced tough competition, Pride and Prejudice, the Keira Knightley/Matthew Macfadyen version. I wanted to see how it compared with the BBC series of a couple of years ago. It's a story that needs a lot more than 2 hours 20 minutes allowed in the film. No heaving bosoms in A-line gowns, and no wet shirted Mr Darcy after a swim in the lake. It still managed to be a good tale told reasonably well.

I have dropsy. Nothing to do with water on or in any part of my body. It's when ever you go to pick things up, they end up on the floor! And bending is a problem. I'm not in pain, it's very much a stinging, that creeps up on you when your not expecting it. Involuntary actions are also a problem. Coughing suddenly, or a sneeze that comes out of nowhere and give you little chance to prepare for it. I'm sure Cag is shaking the pepper pot around the house!

I've taken the last of the tablet supplied after the operation. The pain killers are finished, only regular Paracetamol have now been advised, and I had the last anti-biotic tonight, horrible tasting orange and grey bullets, so it means I can have a glass or three once again. Yes, I've been tea total for a week. It's not been easy, and there are a lot of very worried wine growers in the world. To all of them I say, I hope to be catching up very soon.

Easter Day and visitors. Two of Cag's sisters and our favourite brother-in-law (he might be reading this) arrived in the most comfortable ride that ever came out of Sweden, nothing to do with Ulrika Jonsson, more a Volvo. Cag had been really looking forward to more company, as it had been a very long week for her, with very little she could do. It was also a joy for me to have more conversation and to get away from repeats of News 24 on the T.V. And they brought chocolate cake!!!

I'm hoping to get myself back to near normality this next week. Still no lifting but I should be able to get out more and do a little shopping etc. These next few weeks are going to be the real pain. As I get better I will want to do more, and therein lays the danger.

Wednesday & Thursday..........

It's getting easier, at least for me. The carers have a better idea of what to do and I can keep out of the way. Now I know their routine, I can get things prepared which makes their visits shorter. Cag is still not happy having to use the hoist. I must admit, she does look like a trust up chicken when they are transferring her from bed to chair and back again. But what's the alternative?


I do wish Cag had a better attitude towards the carers. She makes her feelings known about her dislike of the situation. At times she is not the easiest person to get along with. I take very little notice, I know her ways, but to strangers it must cause some concern, especially as they are trying to help us both. I'm sure they have seen and heard it all before, but it's not to my liking.


I felt well enough to drive our car to the Surgery today. The dressing needed to be changed. Yet another lady nurse viewing me below the waist......... and I don't mean my socks. She was very impressed (careful Fi)............. with how the wound has healed. Very little bleeding, no infection, a little bruising but that's to be expected. I've another appointment now for next Tuesday to have the clips removed all being well. Should be interesting.

.

Easter is only a few days away.

It's not all fun for everyone, especially Easter Bunnies.

Monday and soresday...........

Oooooooooooooh! Only kidding. The operation was fine. Everything went like clockwork. I arrived a little early, thanks to my neighbour who hates being late for anything, had a pre-op interview, and was on the table at exactly 2.00pm.

The worst part was the bathing of the area with antiseptic. It stung, I mean, IT REALLY STUNG! There was a little prick from the local (stop it Fi) and the rest was pain free. Plenty of chatting from the nurses to keep my mind off things, and a cup of tea afterwards.

Neighbour picked me up about 3.30pm and we were home before 4.00. Even up to the time I got into bed, everything seemed fine, so I got a fair nights sleep.

Today has been O.K. A dull ache rather than actual pain, and a sharp stab if I move too quickly or try to do anything I shouldn't. So all in all I've fared rather well.

Cags hasn't had the same luck with 'faring well'. The carers have been having a lot of problem in using the hoist and it's been very uncomfortable for her. It is getting better now we've found how best to position it and the sling, but it's never going to be her favourite time of the day. It's not forever, so we will make the best of it for the time being.

And now another early night. Sorry I shan't be able to read my usual blogs, but I will catch up in the next day or two. Night, night.

Fourteen, going on Fifteen....

I was going to post last night, but as you can guess by the previous post, Friday was one of those days. I started the ball rolling at 8.45am by phoning Cornwall Carers Support. I couldn't speak to my contact there, but her supervisor Monica was covering for her. I told her the problem.

I got the feeling that this was not a new story to her ears. She asked for all the details, and then said "Leave it to me, I'll get back to you".

Within half an hour I had a phone call from Adult Soc. Care. They confirmed the carers would be contacting me within the hour to arrange a visit, a hoist would be found and delivered by 10 o'c Monday morning at the latest, and that Technical Services would phone, arrange a visit to raise the bed that very afternoon.

By 11.30 I had seen the carers supervisor and gone over our needs with her. Tec Serv were arrived at 3.30pm, and a few minutes later the manager of the carers phoned again to make sure I was happy that everything was in place. Waow!

Monica phoned back a little after 4 o'c to check on progress and I was able to tell her that all angles were covered. She said it was all about knowing who to light the fire under. I got the feeling that Monica was not a lady to cross. I thanked her for all she had done and she made me promise to get in touch again if anything even looked like going wrong.

Now to gird my loins (or shave them) and get ready for the big day. I shall write in ballpoint, just below my naval "BE GENTLE WITH ME".

Thirteenth....unlucky for some!

I told you so! Phoned Adult Social Care at 9.00am, and was told that I would get a reply call in about half an hour. I did, to tell me that my Care Coordinator was off work sick.

I did manage to find out the the carers would be calling at the arranged times, it was when I mentioned the hoist and raising the bed height that I got silence. Nothing had been done.

Carers won't work without a hoist, and Cag needs to be out of bed for an hour or more at least twice a day. She can't eat laying down, or swallow very well. I told the new Coordinator that the Community Nurses were supposed to be arranging for the hoist, and she said she would try to get hold of them and get back to me.

I phoned again at 5.00pm. She was unable to speak to the nurse who was organising the hoist, she was not at work today. I don't think the original message had even reached her. She would be contacted tomorrow. I was then told that this new Coord had been informed that a hoist would not fit through our doors, so would be useless. I reminded her that we had used a hoist before in the home, and although it was difficult for one person to use, two carers who knew what they were doing would have little trouble.

I then reminded her that they had had ten weeks to sort out these problem. A full in home assessment, a further nursing assessment and then a financial assessment. There were difficulties found but those could be easily rectified. I was getting annoyed, so I then asked for the complaint procedure.

The atmosphere of the conversation changed. Promises to make sure everything that could be done tomorrow would be, and promises to keep me informed as to progress. I have a couple of phone call myself to make tomorrow, to bring pressure from a different source. We'll see if it works.

In truth, it's not the new Coords fault, but I hate people trying to cover over poor work with excuses, when I'm only asking them to do the job they are there for.